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TransplantBuddies.org Forums » Buddies Blogs » Heather's Blog II » Blog starting Sept. 19, 2010 « Previous Next »
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Heather
Forum Leader
Username: Heather

Post Number: 3074
Registered: 05-2003
Posted on Sunday, September 19, 2010 - 10:47 pm:   Edit Post Delete Post Print Post

Well..I typed out a whole long post here last night..and I must have done something wrong cause later I could not find it...grrrrrr. Now I don't remember all I wrote...

I am enjoying the cooler temps this month. This summer was just way too hot to enjoy in my opinion. I did not like being cooped up inside just to stay comfortable..especially when winter is coming and we have to do that then, also.

This past May I was diagnosed with Acne Rosacea and also the derm. caught a malignant Melanoma. The melanoma was removed. The acne rosacea was hard to manage at first..I could not find any moisturizers that did not burn or break me out...NONE...and my makeup that I could wear without problems felt so heavy and like my skin could not breathe..hated it. I found on a Rosacea forum people saying what did and did not work for them..I had tried many of the things mentioned but one moisturizer caught my eye..and it was only available ordering it through a pharmacy..so I did..it is now on the shelves..haha..anyway..it worked..and though it is a cream and thick..it works for me and does not clog my pores and cause acne. I am VERY happy..cause especially with rosacea..you need moisturizer. also looked and looked for makeup..and Trisha..a transplant buddy friend sent me some Bare Minerals to try..and alas...it works for me. I don't feel like I have any makeup on and it covers my red areas well..until my burning makes my face redder...which has been happening again for a few days. I hope it goes away again.. anyway..what a babble blog.

Been spending time out in the yard..nice to be able to do that. Tore out one of my bigger beds in the back yard. Transplanted, tossed, dug up...lots and lots.
Trying to downsize big time..but I like so many of my flowers I hate to get rid of them...

started on the treadmill again a few days ago. Hope that goes ok. I have been walking at the parks and boy my feet have sure been hurting even with my good shoes..(New Balance..). Don't know why. I have also been doing Yoga stretches. The dvd I have is strictly the poses and some exercises for beginners. Yikes...gonna take me a while to get limber cause I am NOT!!

Shopped today with my best friend. I am tired!! Her little girl is such a sweet little thing. I just love her!! Little Elizabeth Joy is a joy for sure!!

Have a tooth bothering me BAD..when any water or anything gets on it. I think it is cracked or something. I went about 9 days ago to the dentist and he seemed to think it was gum related..I know the difference between gum discomfort and the pain of a nerve...that sends you through the roof..yah..that kind...anyhoo..I was supp-osed to go back this Wed. but I am calling tomorrow to get in for some xrays..it is bothering me still..duh. Why wait til Wed? Hope no root canal is in the near future..can't afford it and don't want it.

enough for now.
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

DONATE LIFE
Hostess Rise
Board Administrator
Username: Rise

Post Number: 14452
Registered: 05-2003
Posted on Monday, September 20, 2010 - 12:03 am:   Edit Post Delete Post Print Post

Hi Heather

Thank you for sharing what is happening in your life. Glad that you found a creme that works. What is the name of it? Maybe others can use it too?

I hope you do not have to have root canal. You better go and get those xrays. Root canals are not that bad.

Love always
Rise'
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05
Debra Fertel MD- Si Pham MD, Professor of Surgery---Jackson Memorial Hospital
Anas Hadeh MD, Cleveland Clinic CF care

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Heather
Forum Leader
Username: Heather

Post Number: 3075
Registered: 05-2003
Posted on Monday, September 20, 2010 - 12:26 am:   Edit Post Delete Post Print Post

Rise.. I had a root canal about 8 years ago and it was a nightmare. I am going to a different dentist now and he he does not do them..he sends his patients to a root specialist and that is all this guy does. So hopefully if I ever do have to have another one..he knows what he is doing????

The cream is called Vanicream and Walmart has it with sunscreen..60 I think but you have to ask for it at the pharmacy and they have it back there. Don't ask me why. Walgreens and CVS have it on the shelves now. Walgreens also has the lotion which I had never tried but I bought some..same ingredients just not as heavy. So I am using the lotion (lite) under makeup and the cream at night...and it is very reasonable. It has no irritants, dyes, fragrance and no formaldahyde..if I remember correctly.

The make up is, as I mentioned to you already, Rise, Bare Minerals. It amazes me still how a powder can stay on all day...and looks better hours later than my liquid stuff ever did...and the powders I used to use with my liquid LOOKED like I had powder on. I only use the foundation with Almay mascara and eyeliner. No blush..heck no not with Rosacea...don't need it.

and many of the Yoga poses and stretches I cannot do because it twist the low back and I just can't afford to mess that up again...but I do like doing some of the stretches...even though according to the instructor I am supposed to feel relaxed..um...no...not yet..haha...
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

DONATE LIFE
Hostess Rise
Board Administrator
Username: Rise

Post Number: 14453
Registered: 05-2003
Posted on Monday, September 20, 2010 - 01:24 am:   Edit Post Delete Post Print Post

thank you Heather

Be careful in yoga class. Some teachers move quickly. Don't feel you have to keep up with the class.

Great to hear you are better.

If you need a root canal (hopefully not) then you would be probably be seeing an endodontist.
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05
Debra Fertel MD- Si Pham MD, Professor of Surgery---Jackson Memorial Hospital
Anas Hadeh MD, Cleveland Clinic CF care

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Heather
Forum Leader
Username: Heather

Post Number: 3076
Registered: 05-2003
Posted on Monday, September 20, 2010 - 01:56 am:   Edit Post Delete Post Print Post

Yep that is the kind of doc I would see. I saw him a few years ago when he looked at my old root canal..

I am not in a class..just bought a beginners poses dvd. Just shows the correct way to stand and do the poses and stretches.
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

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LadyDi
Forum Leader
Username: Ladydi

Post Number: 2443
Registered: 03-2008
Posted on Tuesday, September 21, 2010 - 06:35 pm:   Edit Post Delete Post Print Post

Good to see you back Heather! I do like the Bare Minerals, but really don't wear much make up other than mascara. I never could wear foundation - didn't matter what kind it was it always made my face break out. Glad you found something that worked for you.

Cisco and I both have the New Balance shoes and love them! They seem to last forever. How long have you had your shoes? It is hard to do, but we replace them about once a year as the shoe store owner (a REAL shoe store where they measureyour foot & know their product!) told us they do break down after about a year if you use them regularly. Then they do your feet more harm than good.

How is the tooth doing?
Kidney Donor to Husband 10/30/07
Forum Leader-Living Organ Donation
Barnes Jewish Hospital St. Louis, Mo

My Donation Story

I walk slowly, but I never walk backward - Abraham Lincoln
Heather
Forum Leader
Username: Heather

Post Number: 3078
Registered: 05-2003
Posted on Wednesday, September 22, 2010 - 10:35 am:   Edit Post Delete Post Print Post

I have been wearing NB off and on for quite a while. I just got these shoes maybe 3 months or so ago. When I worked in a sporting goods store that actually sold apparel and shoes mostly..and team sports stuff for schools...we were told that they start breaking down about 6 months and they should be replaced then if you wear them all the time. Maybe they just wanted to make money..haha. Hard to get rid of a pair if they are still comfy..and it seems when I do..I can't find the same one anymore...the style changes.

I was going without face makeup for quite a while as everything was breaking me out..and my face would be very uncomfortable til I got it off. I could not wait til whatever I was doing...was over so I could go home and wash my face. I can wear the Bare Minerals all day and it does not bother me...and get this..even with the heavy cream, my face has not been this clear in I don't know how long. I am assuming it is the makeup and it not bothering my skin. It is nice. I just wish the redness and warmth of my face would be gone too. Praying about that...cause there is nothing else I can do.

I called the dentist, went in yesterday at 9 and he took xrays and really did not say a lot other than the bone all looks good and he can't see anything...so today I go to the endodontist to see what he tells me. The hygienist assured me she just had a root canal done by this doctor and it was a breeze...he knows what he is doing. The whole thing about my roots are..he told me a few years ago when we were looking at my old root canal...that all my roots go down so far then bend at a 90 degree angle..so there is a part of the root they cannot reach...of course it would be ME that had this weirdness as well as all the other weird junk. so we will see.

wow ...I am ready for the cooler temps again. Not liking this heat ...a little more intense than an Indian summer..

Danny bought a used professional camera and some lenses and we have been out picture taking..or trying to find things to take pics of ...that are different than our normal stuff...I am wanting to venture off somewhere new ...

Cannot figure out why our gas prices are still so high here. Champaign was quite a bit cheaper than us a few days ago. Ours has been at 2.89-2.87...they fixed the break in northern Illinois so what the heck? The news said prices should come back down ...that was about a week ago. I am feeling ripped off. Danville tends to do that sometimes. We can go 3 miles into Indiana and get it 20 cents cheaper much of the time.

Went shopping with my mom last Friday in Tuscola at the Outlet mall. We rarely get to do stuff together as she does not like to leave my grandma and my dad works 2 days a week, and mom has a schedule of days she does things..like groceries and stuff....so anyway..I called her up and dad said he would stay with grandma and away we went. It was nice. Did not find anything really...I think many of the stores prices are higher than regular stores sale prices and some are the same as the regular stores. Not real good deals at most but some had some good prices. I would like to go to the Amish barn sometime there. I LOVE Amish furniture..it is so well made and so beautiful. Danny bought me a small hutch type thing about a year after we were married, from there. I love it.
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

DONATE LIFE
Karen R.
Forum Leader
Username: Relivkaren

Post Number: 4852
Registered: 07-2007
Posted on Saturday, September 25, 2010 - 12:52 am:   Edit Post Delete Post Print Post

Heather:

It is so good to catch up with you. This summer was so busy for me that I got very behind on my Transplant Buddies posting. I finally got caught up, but I am having trouble staying caught up. I am just so busy!! That's a good thing, but I don't like not being on Transplant Buddies every day. I am trying to figure out a good balance?!?!

I didn't know that you were diagnosed with Roscea. Was that what was causing the redness on your face? What about all the other symptoms? Did anyone ever come up with a diagnosis? Anything autoimmune?

I am glad you have a diagnosis, but it sure seems like a frustrating one. I am glad that you found a moisturizer. That's so important. I love mineral makeup. The salon my sister works at sells Youngblood. It's mineral makeup very much like Bare Minerals. It works so well for me. I know what you mean about not feeling as if you have makeup on. Cool stuff!! :-)

I am glad that you have been able to get outside and do some things. I know that this summer was really hot, but I am so not looking forward to winter. It's hard for me to believe that fall is here already. This year has gone so fast.

I hope your feet start feeling better. That has to be frustrating too.

It was just really good to hear how you are doing. I do pray for you everyday.

God Bless!
Karen
Dx: BOOP - May 2006. Rediagnosed with Bronchiolitis Obliterans Nov. 2006
Double lung transplant on Dec. 1st, 2009
Cleveland Clinic

Ohio, USA

Be kinder than necessary because everyone you meet is fighting some kind of battle.
Heather
Forum Leader
Username: Heather

Post Number: 3079
Registered: 05-2003
Posted on Saturday, September 25, 2010 - 10:56 am:   Edit Post Delete Post Print Post

Thank you so much for your prayers, Karen. Yes the Rosacea is extremely frustrating. It does cause redness..especially when I exercise or walk or do anything like that. It does burn sometimes..but is not the same thing as the burning I have on the left side of my face and leg and shoulder, etc. That was doing pretty good til about 3 weeks ago and now I am feeling it more. Very discouraging. No diagnosis yet. my family doc thinks i have a connective tissue disorder but does not know what...that is what his gut tells him he said..even though all my tests come back saying I don't have Lupus, and the other autoimmune disorders. The neuro thinks it is autoimmune, the rhuem. thinks it may be neurological...I can't win. I go back to the Rhuem. on Wed or Thurs I think. The Neuro. just kinda dropped me after all the tests came back ok. I need to talk to the Rheum. and see if he thinks I should continue seeking neuro. testing or what.

I do love the Bare Minerals. I have never heard of the brand you use. Is it as expensive as mine? if it is cheaper I may give it a whirl...I use a little more than the normal person because I do have the red to cover up...so I am sure I will go through it faster than most. I am amazed how a powder can stay on all day...

I am so happy you are so busy. I was so excited for you when you finally got your lungs. You stay busy doing all the things you longed to do for years!! I'm sure it is like a brand new world!!!!
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

DONATE LIFE
Heather
Forum Leader
Username: Heather

Post Number: 3080
Registered: 05-2003
Posted on Tuesday, September 28, 2010 - 04:05 pm:   Edit Post Delete Post Print Post

Past 2 days the weird burning on the left side of my face returned with a vengeance. I have not done anything different or changed anything. I have not sleep well the past 2 nights as it is cold at night yet I have to sleep with a fan on my face all night just to endure the pain. The burning aggravates the rosacea and it is just a big mess. I don't know if the Rheumatologist will do more testing or what. I want someone to get to the bottom of this and find out what the heck is going on. There has to be someone out there who has had this or a doctor who knows what to do about it...it is getting me discouraged and frustrated. The pain from the burning is very intense and at first it never turned my face red or hot..now it does.I am assuming because of the rosacea I know have...I don't know.

Cooler temps are nice. I walked my 3 miles today. It was sort of drudgery though because I am used to walking with Danny since he was on vacation and now is back to work..and also because I have not slept well and am tired to begin with.

Have not been out picture taking for a while..or I have but have not got anything too exciting. Danny went out this morning to the place we take lots of pics and there was a rainbow!! I rarely ever see rainbows anymore. Pretty cool.
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

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Sally
Member
Username: Sally

Post Number: 39
Registered: 07-2010
Posted on Tuesday, September 28, 2010 - 05:26 pm:   Edit Post Delete Post Print Post

Heather,
Years ago I was told to take Niacin (I think to lower cholesterol),and it caused my face to turn beet red and I also had the burning sensation. It was so bad I stopped taking the Niacin. Don't know if there is any connection for you but I thought I would mention it. I also had rosaecia at that time, but it went away by itself.
Sally
Sally
IPF 2007
Double Lung transplant candidate
Mayo Clinic/ Jacksonville, FL
Hostess Rise
Board Administrator
Username: Rise

Post Number: 14492
Registered: 05-2003
Posted on Tuesday, September 28, 2010 - 10:04 pm:   Edit Post Delete Post Print Post

Sally- had the same reaction when I took too many b vitamins that contained niacin. This reaction is called a niacinamide flush.

I only take one b vitamin daily.

http://www.digitalnaturopath.com/treat/T44289.html
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05
Debra Fertel MD- Si Pham MD, Professor of Surgery---Jackson Memorial Hospital
Anas Hadeh MD, Cleveland Clinic CF care

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Heather
Forum Leader
Username: Heather

Post Number: 3081
Registered: 05-2003
Posted on Tuesday, September 28, 2010 - 10:33 pm:   Edit Post Delete Post Print Post

Sally..thank you for the info. When I first was seen for this..almost a year ago..that was one of the first questions asked of me..was I taking Niacin or a vitamin with niacin. Also did blood work checking for that. My levels were ok.

My gyn told me to take Stresstabs because of my hair loss...and I wonder...if those along with my multivitamin are too much? I think I will discontinue one or the other. I have been taking them since July though. I would think it would have bothered me before now.
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

DONATE LIFE
Karen R.
Forum Leader
Username: Relivkaren

Post Number: 4876
Registered: 07-2007
Posted on Thursday, September 30, 2010 - 01:07 am:   Edit Post Delete Post Print Post

Heather:

Oh my goodness! How frustrating that no doctor can figure out what the problem is. Do you have any holistic or DO's that do alternative medicine in your area? I went to one before I decided on transplant. He was really good in the fact that he viewed the body as a whole and not one specialty or another. I always got frustrated when one specialist sent me to another specialist. I really liked the DO that I saw because he was focused on nutrition and alternative ways to help my body get healthy. He could not help my lungs, but I do think he helped my body get as healthy as possible. I don't know if a doctor like that could help you, but it might be worth a try since you are getting nowhere with the specialists. Just a thought.

I have no idea if Youngblood mineral makeup is cheaper or more expensive than Bare Minerals. It's all expensive as far as I am concerned. The positive is that it does last for awhile. I really like what I am using from Youngblood. I agree that it's amazing how a powder can stay on all day.

Thank you so much for being excited for me and my new life. It is very exciting and I am having such a good time. You are right - everything does seem new. I am just enjoying each and every day. :-) Praise God!!

God Bless!
Karen
Dx: BOOP - May 2006. Rediagnosed with Bronchiolitis Obliterans Nov. 2006
Double lung transplant on Dec. 1st, 2009
Cleveland Clinic

Ohio, USA

Be kinder than necessary because everyone you meet is fighting some kind of battle.
Heather
Forum Leader
Username: Heather

Post Number: 3086
Registered: 05-2003
Posted on Wednesday, October 06, 2010 - 01:38 am:   Edit Post Delete Post Print Post

Well just a short blurb about my doc. visits...Rheum. in Indy last Thurs. Still no answers...but he put me on Prednisone for 1 month. I have been taking that for 5 days. Not sure if it is what is helping or not. I also went to the dermatologist with pics of how bad my face had gotten..since it now seems to be worse in the eve....and he put me on some EXPENSIVE antibacterial to help with the redness and pain. So I have now taken 2 doses of that. Side note...dealing with all this face pain..and I have to have a root canal on Thurs. Am NOT looking forward to that. Think I am going to take my own little fan and ice packs to keep on my face when they have that light on me. UGH. Anyway..the burning has calmed down quite a bit. I have been praying about it and have many others praying. God is merciful and faithful. I return to the Neurologist on Nov. 2.
Rosacea is no fun, let me tell you..when it gets bad..it is bad.

Not much else going on...that's enough for me...the weather is supposed to warm up a bit again. would like to be able to go outside and enjoy the fall before winter really hits us. The trees are getting very pretty.
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

DONATE LIFE
Heather
Forum Leader
Username: Heather

Post Number: 3090
Registered: 05-2003
Posted on Thursday, October 07, 2010 - 07:34 pm:   Edit Post Delete Post Print Post

Went this morning for my root canal...the first of 2. ugh. Went well. He took off my filling, cleaned out the canals of the nerve and put antibiotics in there and put the temp filling on. I have extremely long nerves and he was not able to get all the way down there today so the next visit he will do that and then finish with filling in the canals and another temp filling. That will be in 6 weeks. In 2 weeks I go to get the second one started. What a joyful few months it will be. At least it should all be done by the holidays...but then I have to have crowns put on both. I have no idea what a crown costs. Root canals are bad enough.
I had this done at 9 30 am...the numbness is just now wearing off and my lips feel normal again..at 4 30. No real pain yet. I have pain meds if I need them. He said just Ibuprofen if I need something but not the narc. pain med. I take enough junk I don't want to take. I have gone my entire life trying to stay away from stuff but lately I have to make some hard choices..to be able to survive day to day (rosacea, burning, etc pain) or not take stuff and just lay around in severe pain.
I know the Lord's plans for me are for good and for a future..not for harm..and that all things will work together for my good. But it is hard to remember that sometimes......I am so thankful I have Jesus in my life. I still get very scared, very anxious, doubtful and depressed but I don't know what that would be like if I did not know Him.
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

DONATE LIFE
Meagan
Forum Leader
Username: Newheart14

Post Number: 1358
Registered: 01-2009
Posted on Thursday, October 07, 2010 - 08:32 pm:   Edit Post Delete Post Print Post

Hi Heather,

I'm so sorry for all you're going through right now. But I am so glad you trust in our Lord. I feel the same way you do and I have actually yelled at God (to myself of course, otherwise my hubby might think I've really lost it ), but I know he has a plan for all of us. I guess we feel like we're being tested every day, but those of who have a strong faith know it's all His plan. I don't think He holds it against us when we have our weak moments.

I hope and pray you will start to feel better. I have been following your problems with the rosacea even though I haven't posted much lately and I feel so bad for you.

It's so good we have this place to come to vent when things are rough.

Remember, what doesn't kill us makes us stronger. I hope you get some relief soon.

Hugs,
Meagan
Forum Leader
Heart-Liver Transplant - February 14, 2008
Toronto General Hospital, Toronto, Canada
Idiopathic dilated cardiomyopathy 1991 and CHF

- Most of the important things in the world have been accomplished by people who have kept trying when there seemed to be no hope at all - Dale Carnegie
- Bumps in the road can sometimes be mountains, so I have learned to climb mountains - Meagan

Heather
Forum Leader
Username: Heather

Post Number: 3091
Registered: 05-2003
Posted on Thursday, October 07, 2010 - 09:44 pm:   Edit Post Delete Post Print Post

Thank you for the prayers, Meagan. The Lord knows we are weak..and he knows we are human. I have also cried out to the Lord..not just to myself..my husband has been through so much physical stuff also and he has cried out also so we know what is going on..haha. But anyway..I have been trying to focus on giving thanks and praise even in the midst of my storm..

The Rosacea has a mind of it's own for sure. I don't know what the heck happened a few weeks ago to make it so horribly bad.
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

DONATE LIFE
Heather
Forum Leader
Username: Heather

Post Number: 3093
Registered: 05-2003
Posted on Sunday, October 10, 2010 - 02:27 pm:   Edit Post Delete Post Print Post

I posted a long thing here last night...sure don't see it. I am too tired to post right now..but just saying I had to call the endodontist this morning at his home..my tooth was hurting so bad. 2 vicodin every 6 hours. He said this happens to about 1 in 100 of his patients..FIGURES it would be me. The pain is not as bad but still bad on 2 pain pills. I think I am gonna be in the recliner for the day..it knocks me out pretty much..til the pain starts...
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

DONATE LIFE
Hostess Rise
Board Administrator
Username: Rise

Post Number: 14608
Registered: 05-2003
Posted on Monday, October 11, 2010 - 11:37 am:   Edit Post Delete Post Print Post

Hi Heather

I am sorry that you cannot find your post. I have no idea what happened. Maybe you posted accidentally on your old blog?

I hope you feel better soon.
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05
Debra Fertel MD- Si Pham MD, Professor of Surgery---Jackson Memorial Hospital
Anas Hadeh MD, Cleveland Clinic CF care

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Hostess Rise
Board Administrator
Username: Rise

Post Number: 14609
Registered: 05-2003
Posted on Monday, October 11, 2010 - 11:40 am:   Edit Post Delete Post Print Post

I could not find your post. When you post your message always check to see if it went through.

If it did not go through what you can do is press your back button and then when you see your message click preview post message again.

Don't worry if you double post just tell me and I will delete it for you.

I know how frustrating this have been for you.
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05
Debra Fertel MD- Si Pham MD, Professor of Surgery---Jackson Memorial Hospital
Anas Hadeh MD, Cleveland Clinic CF care

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Heather
Forum Leader
Username: Heather

Post Number: 3097
Registered: 05-2003
Posted on Monday, October 11, 2010 - 12:42 pm:   Edit Post Delete Post Print Post

who knows what I did..I probably forgot to hit the button or did not wait long enough. No problem.
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

DONATE LIFE
LadyDi
Forum Leader
Username: Ladydi

Post Number: 2467
Registered: 03-2008
Posted on Wednesday, October 13, 2010 - 06:15 pm:   Edit Post Delete Post Print Post

I am sorry to see you are still having problems Heather. And the tooth trouble just adds to it. It has to be discouraging - you are so brave to keep such a positive attitude through all this.
I am glad to see you are talking about going to Mayo. Someone somewhere has to be able to figure out what is causing the problem and get you some relief. Are you able to refer yourself or do you have to be referred?
Kidney Donor to Husband 10/30/07
Forum Leader-Living Organ Donation
Barnes Jewish Hospital St. Louis, Mo

My Donation Story

Post Donation Things to consider

I walk slowly, but I never walk backward - Abraham Lincoln
Hostess Rise
Board Administrator
Username: Rise

Post Number: 14641
Registered: 05-2003
Posted on Wednesday, October 13, 2010 - 07:23 pm:   Edit Post Delete Post Print Post

Hi Heather

I have no idea if this will help your face ...anyway here goes. I had this cut on my lip that several doctors could not diagnose. I have had cut for many years. It get worse around that time of the month. You would have to stare to see it.

My friend told me about Aquafor and then my dad pulled it out of his pocket last week. I can finally say that my cut is completely healed from using Aquafor. I also had contaminated an area on my nose from my lip. That is all healed up too. Ask your doctor if this could help your skin too.

All remains is a tiny amount of redness that will probably go away over time.
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05
Debra Fertel MD- Si Pham MD, Professor of Surgery---Jackson Memorial Hospital
Anas Hadeh MD, Cleveland Clinic CF care

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Heather
Forum Leader
Username: Heather

Post Number: 3107
Registered: 05-2003
Posted on Monday, October 18, 2010 - 01:56 am:   Edit Post Delete Post Print Post

I actually was zipping through Walgreens today and saw this on the shelf. All I saw was bigger containers..not something you could pull out of your pocket..haha. i did not have time to look at it too close but was in with the lotions and creams..is there stuff for your lips as well?
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

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Karen R.
Forum Leader
Username: Relivkaren

Post Number: 4929
Registered: 07-2007
Posted on Thursday, October 21, 2010 - 12:58 am:   Edit Post Delete Post Print Post

Heather:

I am sorry that I haven't posted until now. I just got so busy this last week that I haven't had time to post. I have been reading, but not posting.

Geez - a root canal on top of all the other stuff you are going through. My goodness - you sure are taking a lot right now. I do know how you feel when you know that God is right there with you, but it just hurts so darn much. I too have had my "talks" with God. He is a big God and can take all of our hurts, tears, tempers, anxiety, and despair. I love picturing God holding each one of our tears in His hands. He knows are struggles and He knows how hard this life can be. I know that He sometimes allows those struggles, but He never lets us go through them alone. I am so thankful for that.

I too pray for you every night. I pray that by now your tooth pain is gone and that you are one day closer to figuring out the rest of your health problems.

Just know that we all love you and that you have friends here that will stand by you and support you.

God Bless!
Karen
Dx: BOOP - May 2006. Rediagnosed with Bronchiolitis Obliterans Nov. 2006
Double lung transplant on Dec. 1st, 2009
Cleveland Clinic

Ohio, USA

Be kinder than necessary because everyone you meet is fighting some kind of battle.
Heather
Forum Leader
Username: Heather

Post Number: 3111
Registered: 05-2003
Posted on Monday, October 25, 2010 - 01:21 am:   Edit Post Delete Post Print Post

Thank you for your encouraging words, Karen. Most of that tooth pain is gone...every now and then I get a weird pain but hope that is normal...tomorrow it is back to get the second one done...after a not so great weekend..everything seems to be flaring again..plus I had to go to the doc last week for a lump on my leg right under a varicose vein..I wanted to make sure it was not a bloodclot..he thought it was a superficial one but the sonogram showed no blockage so he said it was an inflamed blood vessel. What the heck?

I am still thinking on Mayo quite seriously. My doctor..pcp said he had never referred any of his patients even though many have gone on to there..I think I need a new doctor. It was like he did not want to mess with it. He said his other patients must have referred themselves...

wanted to ask you Karen...does the Best Western Soldiers place you stayed have normal rooms or just suites? I will be making my decision on whether to go in the next week or so..and have heard from another friend that that place is very reasonable and nice and close.
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

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Heather
Forum Leader
Username: Heather

Post Number: 3113
Registered: 05-2003
Posted on Monday, October 25, 2010 - 10:51 pm:   Edit Post Delete Post Print Post

2nd root canal..first visit anyway...done today. now THIS one feels like I had a root canal. It is throbbing. Could be I am on less prednisone than when I had the last one. hoping the sharp pains don't occur like with the last one. Had to break down and take some vicodin.

and for more fun tonight...was making dinner and doing something in the microwave when that just quit on me. It is dead....done. Served us a good 10 years. Whatever happened to things lasting years and years? Like vacuum cleaners? My mom had a Hoover or something for like..who knows...20 plus years and it still worked? They just don't make things like they used to I guess. But 10 years is pretty good....I wanted a new one anyway..haha. Gotta shop for that in the morning.
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

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Karen R.
Forum Leader
Username: Relivkaren

Post Number: 4969
Registered: 07-2007
Posted on Monday, October 25, 2010 - 11:23 pm:   Edit Post Delete Post Print Post

Heather:

Yuck! Another root canal - I hope this one is waaay less painful. Jerry just found out last week that he has to have a root canal. I don't think I will tell him that it is painful. Why stress him out before he goes - right?

About the Best Western Soldiers Field. Yes - they do have regular rooms. They have a main building with normal rooms and then 2 buildings with suites. If I recall, we had a very nice continental breakfast included. The main building was very nice. I did not see any of the rooms though. The staff was very nice too and the shuttle drivers to the clinic where all very personable and kind. It really was very reasonable with great service. I would definitely recommend it.

Geez - your microwave died? What a crock!! I agree with you on the life of appliances these days. Gone are the days that things lasted 20 years. Everything is disposable. Oh well....it helps the economy - right?

I pray that you don't have so much pain this time. Hopefully, tomorrow will be a good day.

God Bless!
Karen
Dx: BOOP - May 2006. Rediagnosed with Bronchiolitis Obliterans Nov. 2006
Double lung transplant on Dec. 1st, 2009
Cleveland Clinic

Ohio, USA

Be kinder than necessary because everyone you meet is fighting some kind of battle.
Heather
Forum Leader
Username: Heather

Post Number: 3115
Registered: 05-2003
Posted on Tuesday, October 26, 2010 - 12:45 am:   Edit Post Delete Post Print Post

Well I assume that if I do end up at Mayo I will be there for a week at least..I don't think with all the different junk I have going on..they will know in a day or 2..I mean..just seeing different docs and having tests done takes that long. So I would assume a suite would be probably cheaper in the long run, having a frig to buy a little food instead of going out every meal..I get real tired of that...also like having a recliner..my back needs it. Not looking forward to going north in the winter time...for sure. I do need some answers and really want to know what it is I am fighting here. Look forward to making it through this valley. I was reading in Isaiah ..43..is it? about when we pass through the waters they will not over flow us, when we pass through the fire we will not be burned...I love that passage and the word THROUGH. Looking forward to that.

The root canal probably does not hurt as bad as having a tooth pulled or a wisdom tooth out..has he had his wisdom teeth out? I have had neither of those done..but hear they are painful. I think anything with the mouth is painful.
I would suggest an endodontist and not a dentist if your insurance will pay for it. That is all they do and there is no messing around..but then I have only had the first part done...the long part of the procedure is coming up. ...will be more of an expert after that..haha. Hope he has an easy time with his.
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

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Rise
Board Administrator
Username: Rise

Post Number: 14724
Registered: 05-2003
Posted on Tuesday, October 26, 2010 - 08:03 am:   Edit Post Delete Post Print Post

Dear Heather

I am behind in reading my buddies postings. I hope you find an answer to your questions and hopefully all the answers will be the missing piece to your puzzle.

As for the Aqafor, this is the bomb for the lips. If I take a tiny amount on my lips before bedtime, in the morning my lips are moist. I also keep my AC cold at night so this is a good sign. With the ingredients in this product, I am not wild about using what is inside it but it works.
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05
Jackson Memorial Hospital

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Heather
Forum Leader
Username: Heather

Post Number: 3117
Registered: 05-2003
Posted on Wednesday, October 27, 2010 - 10:18 am:   Edit Post Delete Post Print Post

Rise..does it come in a small tube? All I have found is the larger containers..nothing like for lips..I am always having to put stuff on my lips with having to have fans on my face most of the time...
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

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Rise
Board Administrator
Username: Rise

Post Number: 14736
Registered: 05-2003
Posted on Wednesday, October 27, 2010 - 11:47 am:   Edit Post Delete Post Print Post

check this out
http://www.walgreens.com/store/catalog/Diapering/Baby-Healing-Ointment-Advanced-Therapy-Skin-Protectant/ID=prod388753-product?V=G&ec=frgl_&ci_src=14110944&ci_sku=sku388754

I never tried the adult container. I have no idea if it is the same product.
If you do not like a product, you can always return it as long as you keep the receipt.
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05
Jackson Memorial Hospital

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Heather
Forum Leader
Username: Heather

Post Number: 3128
Registered: 05-2003
Posted on Tuesday, November 02, 2010 - 06:08 pm:   Edit Post Delete Post Print Post

ok so I went to the neurologist in Indy again. He looked at my newest labs and a pic I showed him of when my Rosacea was really bad..and he looked at it and asked if I had showed the Rheum. that picture? I said yes. He said ...what did he say...nothing really except he put me on prednisone for a month for the inflammation and told me I needed to come back to the Neuro. again. so I go...back and forth..that is what I tried to get away from before...get this he told me that if his wife needed a Rheumatologist he would not let her go to any of them in Indianapolis. I began telling him that I was tired of being told by one to go to the other and back and forth and I could not continue my life like that..and never getting any answers..just things getting worse..and new things on top of the old ones..not diagnosed and treated correctly. ...and I was in the next sentence going to say..I am wanting to go to Mayo..when he interjected an said...if I were you..I would be headed for CC or Mayo clinic. ...I said..well that is what I want to do...do I call? He said you can..but we can certainly do that for you. So I await a call telling me when I am scheduled. He said probably 3 days..but he is CONVINCED I have Lupus...whereas the Rheumatologist..which is a doctor who works with Lupus...is NOT convinced..so hoping I get some answers....oh about the picture I showed him..he said oh my..that is a classic example of a mylar rash (mine was not a rash..just red and burning..solid..no bumps or rash..) that lupus patients present with. >....but I am no rheumatologist...so you need to go to Mayo. So although the Rheum. speaks rather highly of the Neurol....the feelings are not reciprocated evidently.. So today all I got accomplished with my trip to Indy was getting a referral to Mayo. Nothing more.
Also..I have only seen this doc in his office (and once for a test) twice now..and both times I feel like he just jumped on the Lupus wagon and does not want to test further in the neurological field...like he has his mind made up that he could not be wrong..that it could not possibly be a neuro. thing....don't like that kind of closed minded thinking when it comes to my health. I have been getting run back and forth for so long. I am tired of it all. Frustrated, let down, sort of tossed on the back burner so to speak as if my stuff is not as important as someone who presents with obvious symptoms of a disease..I don't know. I am glad the Mayo ball is rolling. now I am sort of anxious and scared...about it all. I am soooooo very tired of trying to explain my miraid of symptoms and weirdness to new doctors..and as I said..they just keep compiling...more and more junk happening that is weird and not explainable yet.
Ok..think I got that up to date.
Oh I got bloodwork repeated a few weeks ago..ON PREDNISONE..so those are not correct. darn it. I did ask..would being on prednisone effect my cholesterol reading and he said yes it would most likely raise your cholesterol...I said mine went way down from 220 at the beginning of the year..to 192. he looked shocked as I am only taking Fish oil for that..and not like I should be...
well I assume Mayo will be doing all that bloodwork all over again...Right?
so here I am ......................................

and just to say....what I am going through...is one of the reasons I am usually the negative nelly on the donor board....or sound like it..I am all for donation..but living donors must understand that YES YES YES it does affect your future...it DOES DOES DOES come with risks...maybe not now or 5 years from now...but throughout everything..even getting tests done...and the dye used...kidney donors should not have that dye....medications that can be used to treat disorders or as simple as inflammation...all these things effect organs...and must be used sparingly or not at all. You must be careful of all prescript. medicines prescribed to you..especially if they are long term. I try to let people know these things cause I think it is only fair. I have found living with one kidney does have it's disadvantages..quite clearly...sure you can live with one just fine. But God forbid something like this should happen..and you would have to be put on meds that could compromise your remaining kidney.
That said.. would I still donate to my dad? Heck yes. I have given him 11 years so far he may not have had otherwise..and his ministry has touched so many lives over those years (visitation pastor..visiting shut ins, hospital bound, nursing home residents..etc..)
ok I am done.
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

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Rise
Board Administrator
Username: Rise

Post Number: 14800
Registered: 05-2003
Posted on Tuesday, November 02, 2010 - 07:34 pm:   Edit Post Delete Post Print Post

Dear Heather

I am glad that I saw your blog today because all I want to do is give you a big hug and tell you that everything will be ok.

Wishing you good health and that you do not have anything seriously wrong. Glad to hear that you will be going to CC.

I must admit it was very difficult reading your post. when you write two sentences please press enter on your keyboard as this will make for easier reading. I need to go back and read your posts.

Are you going to CC or Mayo.

LOVE and Hugs and certainly wish you only good things
I will be praying for you each day
love
Rise'
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05
Jackson Memorial Hospital

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Hostess Meagan
Forum Leader
Username: Newheart14

Post Number: 1486
Registered: 01-2009
Posted on Tuesday, November 02, 2010 - 07:58 pm:   Edit Post Delete Post Print Post

Hi Heather,

I am so happy you are being referred to Mayo. Maybe now you will get some answers. I am happy you stood up for yourself with your doctor. You need to be outspoken at times when doctors are not really listening you.

If I were you, I would write everything down (type it perhaps). Then you will remember to tell them everything and hopefully never have to tell another doctor again what you have been going through.

I hope you find some answers to all that you have been going through these past months.

You know all your Buddies, including me, will be praying for you.

Take care,
Meagan
Forum Leader
Heart-Liver Transplant - February 14, 2008
Toronto General Hospital, Toronto, Canada
Idiopathic dilated cardiomyopathy 1991 and CHF

- Most of the important things in the world have been accomplished by people who have kept trying when there seemed to be no hope at all - Dale Carnegie
- Bumps in the road can sometimes be mountains, so I have learned to climb mountains - Meagan

Heather
Forum Leader
Username: Heather

Post Number: 3129
Registered: 05-2003
Posted on Tuesday, November 02, 2010 - 09:26 pm:   Edit Post Delete Post Print Post

sorry it was difficult to read..I was just trying to get it all down in a hurry.
I will try to make it more reader friendly..haha.

how

is

this?....just kidding.

Hey Rise...so after all these years of "knowing" Robin....I will finally be meeting her when I do go to Mayo.

That is the area she lives...and her husband has all his medical stuff done.
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

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Rise
Board Administrator
Username: Rise

Post Number: 14811
Registered: 05-2003
Posted on Wednesday, November 03, 2010 - 03:11 pm:   Edit Post Delete Post Print Post

Heather,

Be sure to take pictures! this will be great!
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05
Jackson Memorial Hospital

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Heather
Forum Leader
Username: Heather

Post Number: 3134
Registered: 05-2003
Posted on Wednesday, November 03, 2010 - 04:33 pm:   Edit Post Delete Post Print Post

as a matter of fact..Dave...Robin's husband has to schedule an upcoming appt.

and told Robin to make sure I tell her when I will be up there and he would

schedule his appt. so he could be there to show us where we need to go and

how to get where...etc..how sweet is that? Of course..I told Robin..you have to

take the day off work as well!! She said..you bet. So at least..hopefully we will

be able to hang out with people that know what is what and where to

go..haha.
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

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Rise
Board Administrator
Username: Rise

Post Number: 14818
Registered: 05-2003
Posted on Wednesday, November 03, 2010 - 04:40 pm:   Edit Post Delete Post Print Post

This is so very kind of Robin and Dave.

Make sure to take lots of pictures. Just love to hear these stories.

Just wish I was there.
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05
Jackson Memorial Hospital

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Heather
Forum Leader
Username: Heather

Post Number: 3135
Registered: 05-2003
Posted on Wednesday, November 03, 2010 - 09:38 pm:   Edit Post Delete Post Print Post

Never fear...I will take lots of pics. Who knows..on the way home I think their town

is somewhere along the way..so we could stop again and say good bye.

I have been checking into hotels just to see the rates and so far...Karen..the one

you told me about..is the best bet so far. Very reasonable for the suites with the

separate bedroom, 2 tvs, full kitchen, etc...cheaper than the normal hotel rooms.

hoping we will not be there during nasty weather. Still have not heard from the

doc. or from Mayo..whoever is going to call us. I will call the doc. office on Fri.

to see if anything has been set up. Called insurance JUST to make sure Mayo

WAS covered..they are ...but of course I need to make sure they only do things

use docs my insurance will cover..Insurance said as long as they bill through

Mayo clinic...and not an outside entity..well how would I know how they bill???

anyhoo.. nothing new really.
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

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LadyDi
Forum Leader
Username: Ladydi

Post Number: 2487
Registered: 03-2008
Posted on Thursday, November 04, 2010 - 10:26 am:   Edit Post Delete Post Print Post

Oh Heather! This has to be so frustrating! That is terrible that you have been put in the middle of "dueling doctors"!

Glad to see you are going to Mayo and hoping they will give you some answers and relief. How long will you have to be there?

And I wanted to tell you don't ever think you are being negative on the boards. You provide a lot of strength to a lot of people on here. And you are honest - donors need that honesty and reality. There are too many people so caught up in the euphoria of donating that they don't stop to really think about what they need to be prepared for not only for surgery but for the rest of their life. People have to hear both sides.

I remember how bad and guilty I felt because I was scared and worried. When I read posts from other people who were so happy and "couldn't wait", I felt like something was wrong with me. Not true! There are people out there who feel the same, and it was comforting to see those posts.

Hang in there. We are praying for you.
Kidney Donor to Husband 10/30/07
Forum Leader-Living Organ Donation
Barnes Jewish Hospital St. Louis, Mo

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I walk slowly, but I never walk backward - Abraham Lincoln
Heather
Forum Leader
Username: Heather

Post Number: 3139
Registered: 05-2003
Posted on Thursday, November 04, 2010 - 10:42 am:   Edit Post Delete Post Print Post

Thanks, Diane. I never felt all warm and fuzzy before donation. I was nervous

every time I thought about it. I mean..I wanted to do it for my dad but dang...I

had never even been in a hosp as a patient really...ever...and to walk into

THIS?? Yeah I was scared..and my time in the hosp. after was not positive

either..so the experience was not at all like many others on here have written

about....oh well..over and done and dad is doing well and that is all that

matters. Now I just have to get myself figured out. ...YES I am frustrated and

tired of feeling isolated by these problems..not being able to be in warm

environments, peoples homes, etc. I know some people think I am probably

just being anti social but I am not..trust me. I hope Mayo can give me some


answers...and some plan of action to get my life back. When someone does

call me and talk to me..which I assume they will...I will not know where to start


with my problems..haha.

I ordered a voice recorder the other day which should be here today or

tomorrow to take to the doc. visits and for me to just talk into when I am in the

midst of one of the episodes or whatever you want to call it..or just to at the

end of the day get on there what all happened physically to me that day..good

day or bad day...etc. I am so forgetful it is frightening. So yesterday I was at my

best friends house and was telling her about this thing I ordered and her

husband says..hey I have one you can have...I bought it 5 years ago and used

it very little..I looked at it and it is the same as mine but an older version. So I

am going to see what mine is like..try his and see how it does and may be

sending mine back..that will save me 50 bucks minus shipping. How nice. I

may just keep mine ..who knows. Anyhoo. I need it to remember what the

docs tell me about labs and whatever. Sometimes my mind will get stuck on

something the doc says and I am not hearing what he says after that...if that

makes sense.
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

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Heather
Forum Leader
Username: Heather

Post Number: 3141
Registered: 05-2003
Posted on Saturday, November 06, 2010 - 07:05 pm:   Edit Post Delete Post Print Post

My computer whacked out on me Friday night..I mean..BIG TIME....so many weird things going on I had to take it to the guy who works on it for me...and even HE had never seen a computer do what mine was doing. But he had to completely clean my hard drive and installed Windows 7 on it..which so far I like...and now I am backing up all my back up files..haha..moving them to my external hard drive...just in case. He is not sure it is up and running for good or if it will act up again..we will see.
I had to go to all the sites I go to..and my email and stuff and change all my passwords..that was fun thinking up all new ones..
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

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Rise
Board Administrator
Username: Rise

Post Number: 14860
Registered: 05-2003
Posted on Sunday, November 07, 2010 - 12:47 pm:   Edit Post Delete Post Print Post

Hi Heather,

Just catching up with your last two blog comments. I certainly hope you find out what is up with your health soon. Worrying is hard not to do. I will pray that you can rest your mind from all of this and be able to remember more. I play mind games with myself so I can teach myself to remember things.

For example, if there is something I need to remember, I will not write it down and just stop and say to myself, I will remember this and I always do. The more I practice this the more I train my memory to recall stuff. I have been doing this for so many years and I will say it really works.

When I was drugged up in the ICU, I remembered all my nurses and therapist names, I freaked them out when I returned to say hello. Not only did I remember their names but I remembered all the nice things they said to me. What else did I have to do there LOL so I played memory recall all day. LOL

LOVE
Rise'
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05
Jackson Memorial Hospital

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Heather
Forum Leader
Username: Heather

Post Number: 3143
Registered: 05-2003
Posted on Sunday, November 07, 2010 - 08:31 pm:   Edit Post Delete Post Print Post

Rise I think one of the meds I am on makes me kinda scatter brained and not able to remember stuff...that and getting older? I have journals and stuff and I am going to have to go back through them and write down specific dates that stuff happened..get tired thinking about it.

True..what better do you have to do in ICU other than play mind games with yourself..that is funny.


Had a good day without any problems with the burning...went to church and it was actually cool in there..yippee!! and then at 3 I went over to mom and dad's to have cake and ice cream to celebrate my grandma's 102nd birthday..wow..and I knew the minute I walked in I was going to be in trouble. I made it an hour and could not stay any longer. My face was so burning hot...not sweaty..burning..red..hot. my makeup covers it up pretty good..although I could see my face was red..not til I got home and washed my face..which helps...could you really tell how red it was. I had to come home and sit with a fan on my face. not fun when it is cool in here already and it is Nov..in the Midwest...need I say more?

It was an awesome Nov. day..in the 60's. I think it is supposed to be that was for a few days. .We sure need rain here. The place I take a lot of my pics...is drying up terribly. not good going into winter.

ok..I am tired. My little 4 legged daughter got me up at normal time instead of letting me sleep an extra hour..she has an internal alarm clock..no kidding. She will sit in front of her food bowl about an hour or half an hour before it is time to feed her..knowing it is gonna be time soon....
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

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Rise
Board Administrator
Username: Rise

Post Number: 14873
Registered: 05-2003
Posted on Sunday, November 07, 2010 - 09:05 pm:   Edit Post Delete Post Print Post

Happy Birthday to Grandma. WOW! She is so blessed!

Take good care of yourself and you will see her age too.

I am sorry you are going through this stuff with your face. I was thinking of you this evening and here you are writing to me.
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05
Jackson Memorial Hospital

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Heather
Forum Leader
Username: Heather

Post Number: 3145
Registered: 05-2003
Posted on Sunday, November 07, 2010 - 11:38 pm:   Edit Post Delete Post Print Post

I have been telling everyone I hope I did not inherit her longevity gene...no way do I want to live that long!!..she is still walking around and helping with dishes, etc. She has some confusion and some pain in her joints....but does very well. She does keep my mom hopping though. I will resize a photo and put it on here.
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

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Heather
Forum Leader
Username: Heather

Post Number: 3147
Registered: 05-2003
Posted on Monday, November 08, 2010 - 09:45 am:   Edit Post Delete Post Print Post

Well it is supposed to be around 70 here today. That is weird for Nov..but I will take it...I think.

Think I will go take a walk today outside since it is going to be so nice. THe leaves are either brown and dead and still on the trees, or fallen already. Not too pretty out. But maybe I will find something to take a picture of. The Wetlands where I get a lot of my bird pics is so dried up there is rarely anything there. We need rain very very bad. I don't remember the last time it really rained..no kidding.

Also hoping to hear from Mayo. If no one calls today, I will call the doctor who is referring me to make sure they did call. The way things go with me..I would be the one out of a million they forgot to call about..haha.
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

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Karen R.
Forum Leader
Username: Relivkaren

Post Number: 5012
Registered: 07-2007
Posted on Wednesday, November 10, 2010 - 12:41 am:   Edit Post Delete Post Print Post

Heather:

I am sorry that I have not posted in awhile. I have been a busy bee. I was dogsitting for my parents dog. They went to California to visit my brother - luckies!! We also went to Cleveland over the weekend for Jerry's sister's 40th birthday party and then all the normal running around I do. I just haven't had much computer time.

I have read all of your posts. I am just so sorry that you are dealing with such frustrating things. It's so hard when you no one can give you a definitive diagnosis. This ping pong game you have been playing with the specialists has to be draining and confusing. I just it when one tells you one thing and the other says the opposite. Who do you put your trust in. I am sooo glad that you are going to Mayo. I pray that they can give you some more concrete answers. Just be prepared to be put through the test ringer. LOL!! I think I had more tests there than I have had in my life. YIKES!!

It's a good place and I am sure you will get some answers. Don't get to worried that they haven't called yet. It's a huge place and it takes some time to get all of your paperwork straight. They will call you, but I agree that if you don't hear something soon you should call them.

I glad that you found the information on the Best Western Soldier's Field helpful. We were very comfortable there. It wasn't the best we have stayed in, but it was clean, reasonably priced, and it had great transportation to Mayo. Oh - they had coin operated laundry too, so we were able to get our laundry done. They also had wireless internet for free and a good continental breakfast. It worked for us.

Please let us know when you are going. I am anxious to hear what they have to say. I will tell you that you will be amazed at how things run there. It's pretty amazing. Cleveland Clinic runs a lot like it, but I think Mayo is bigger.

I am always praying for you!!

God Bless!
Karen
Dx: BOOP - May 2006. Rediagnosed with Bronchiolitis Obliterans Nov. 2006
Double lung transplant on Dec. 1st, 2009
Cleveland Clinic

Ohio, USA

Be kinder than necessary because everyone you meet is fighting some kind of battle.
Heather
Forum Leader
Username: Heather

Post Number: 3151
Registered: 05-2003
Posted on Wednesday, November 10, 2010 - 08:23 pm:   Edit Post Delete Post Print Post

Don't you apologize for living life!!! I am so happy you are busy.

I called the doctor in Indy and made sure they had called Mayo. They had and Mayo said there is a waiting list..of course and could be into Jan. before I get in. I will call Mayo next week if I don't hear from them. Surely they can give me a date.

Gorgeous weather here this week til the weekend..then cold again. But am enjoying the Indian summer while it is here. I raked and mulched leaves today..not too much raking..and mowed the back yard, got rid of more plants.
In spring I will redo the flower beds...hopefully.

Not much else going on.

I am sure the Best Western will be fine. We just hope it is clean and not noisy...and hopefully we can control our heat..I think most hotels you do have that thing you can mess with.

Thanks for the prayers Karen!
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

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Heather
Forum Leader
Username: Heather

Post Number: 3152
Registered: 05-2003
Posted on Thursday, November 11, 2010 - 09:51 am:   Edit Post Delete Post Print Post

Well this morning I get to babysit with my little E. Joy. She is such a sweetie. Can't wait to play with her and get some pics!
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

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LadyDi
Forum Leader
Username: Ladydi

Post Number: 2500
Registered: 03-2008
Posted on Tuesday, November 16, 2010 - 11:08 pm:   Edit Post Delete Post Print Post

Hey Heather! Just checking up on you! Did you ever hear from Mayo?
How did the babysitting go last week?
Our niece is almost two and you are right - they are so much fun - exhausting but fun! It's been a long time since we have had little ones around, so it's nice to be able to play and spoil them!
Kidney Donor to Husband 10/30/07
Forum Leader-Living Organ Donation
Barnes Jewish Hospital St. Louis, Mo

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Heather
Forum Leader
Username: Heather

Post Number: 3163
Registered: 05-2003
Posted on Sunday, November 28, 2010 - 01:01 pm:   Edit Post Delete Post Print Post

whoa..just messing with my pic
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

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DAP1122
Forum Leader
Username: Dap1122

Post Number: 2182
Registered: 05-2008
Posted on Sunday, November 28, 2010 - 10:48 pm:   Edit Post Delete Post Print Post

It's a lovely pic of a lovely lady!!!
New blog/web page -
My2ndHeartBeat
Dap's Email

Heart Tx - 5/11/2007
DAP
Ohio, USA

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Heather
Forum Leader
Username: Heather

Post Number: 3164
Registered: 05-2003
Posted on Monday, November 29, 2010 - 01:25 am:   Edit Post Delete Post Print Post

Well thank you. I am trying to get it smaller...does not look like it happened..haha. Will try again......
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

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Heather
Forum Leader
Username: Heather

Post Number: 3165
Registered: 05-2003
Posted on Monday, November 29, 2010 - 01:28 am:   Edit Post Delete Post Print Post

ok see how this one goes....
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

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Heather
Forum Leader
Username: Heather

Post Number: 3173
Registered: 05-2003
Posted on Thursday, December 02, 2010 - 01:53 pm:   Edit Post Delete Post Print Post

I called Mayo today since they never called me. They said I was on the Rheumatology wait list and it could be 4-6 months. But she suggested I let her put me in as a double booking in Jan. since many people have to cancel. So I will be going on Mon. Jan. 17th. She suggested that date since it was a Mon. and I would have the rest of the week if tests needed done or other docs needed brought in. So that is settled. That is a weight off my mind..now I can start worrying about all of it...haha.
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

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Heather
Forum Leader
Username: Heather

Post Number: 3176
Registered: 05-2003
Posted on Saturday, December 04, 2010 - 02:13 am:   Edit Post Delete Post Print Post

Got a call from Robin, a friend I met here waaaayyyyyy back when this site first started. We have kept in touch almost every day for almost 8 or 9 years I bet...and have never met each other in person. Her husband has had 3 living donor transplants and has all his appt. at Mayo in Rochester. She called me today to tell me that Dave her husband..called up there to schedule his dermatology appt. for Jan...and made sure they could get him in on the 17..the day I will be going...I thought that was sweet. So Robin will go with him and he really wants to be there to help us find our way around and stuff. Can't wait to finally meet these people!!


I go on Dec. 6 for the second part of my first root canal..then the 9th..on my second one. I also have another tooth..same side..right next to root canal tooth..bothering me big time. I am beginning to wonder if even THIS has something to do with whatever is going on. What are the odds of 3 teeth having the same problem within a few months? I think it is very strange. I am not going to have another root canal on a tooth that far back..I will have them pull that one...I think.
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

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Organic Gal
Board Administrator
Username: Rise

Post Number: 15076
Registered: 05-2003
Posted on Saturday, December 04, 2010 - 02:19 pm:   Edit Post Delete Post Print Post

Hi Heather

I am so happy you are going to meet with Robin and Dave.

Don't be surprised if the teeth could be causing some of your problems.

My mom had her teeth worked on and all her pain in her hands are now gone.

My husband had sinus surgery recently and now his pain in his hands are gone too.
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05
Debra Fertel MD- Si Pham MD, Professor of Surgery---Jackson Memorial Hospital
Anas Hadeh MD, Cleveland Clinic Cystic Fibrosis Consultant


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Heather
Forum Leader
Username: Heather

Post Number: 3177
Registered: 05-2003
Posted on Saturday, December 04, 2010 - 09:07 pm:   Edit Post Delete Post Print Post

Well now that is just weird, Rise. Never heard of such a thing. But was thinking the opposite...that this nerve thing is causing my tooth problems. maybe they should pull all my teeth and I would be nice and healthy again with no problems?? haha....it is weird though.

Have gotten about 5-6 inches of snow since last night. Very pretty snow. First real snow this year. First snow was Thanksgiving day..just a dusting.
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

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Organic Gal
Board Administrator
Username: Rise

Post Number: 15083
Registered: 05-2003
Posted on Sunday, December 05, 2010 - 10:50 am:   Edit Post Delete Post Print Post

Hi Heather,

Which came first and that is how I would figure out what is happening with your body. The body works as a whole. That is why I like and believe in holistic medicine.
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05
Debra Fertel MD- Si Pham MD, Professor of Surgery---Jackson Memorial Hospital
Anas Hadeh MD, Cleveland Clinic Cystic Fibrosis Consultant


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Heather
Forum Leader
Username: Heather

Post Number: 3178
Registered: 05-2003
Posted on Sunday, December 05, 2010 - 03:33 pm:   Edit Post Delete Post Print Post

the burning on the L side of face, front of L thigh..and side of L neck..came first...about a year ago that started. Then all kinds of other junk happened this year..and my teeth 3 months ago..weird they are on the same side of my face as the burning...I don't know. Glad I am going to Mayo. Maybe I will get some answers.
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

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Heather
Forum Leader
Username: Heather

Post Number: 3181
Registered: 05-2003
Posted on Monday, December 06, 2010 - 09:44 pm:   Edit Post Delete Post Print Post

Got my info and insurance packet from Mayo already. Gosh..all the stuff to fill out makes me nervous now. Some of it I don't understand so I may have to call up there..and talk to someone. Also it asks for the doctor to send a letter explaining what I am to be seen for...but my thing is..I have MANY things I want taken into consideration and looked at..some things that this doctor just did not show interest in...so I wonder if I should just write my own letter as well..explaining this before I get up there? Anyone have any suggestions? I have so many things going on I feel like a hypochondriac..but the things ARE happening and ARE real...and too many things for them all to just be happening now..and be a coincidence..at least in my opinion. Am trying not to be nervous but not doing well in that dept.
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

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Heather
Forum Leader
Username: Heather

Post Number: 3182
Registered: 05-2003
Posted on Friday, December 10, 2010 - 05:01 pm:   Edit Post Delete Post Print Post

My head is spinning...have spent so much time this week calling all the different facilities and docs and getting all my files and stuff..sent to me. Some I have received some I am waiting for..still others I have to go sign release forms for. I had no problem with anyone other than my chiropractor saying those xrays are not mine for 7 years....but I can check them out for a month...I do believe I PAID for those things..and paid A LOT for them when they were done. So doing that and also dealing with the second part of my first root canal..my bottom molar..omgosh it has hurt so very bad. I had it done Mon. and it still hurts. I do have curved ends to my roots and it took him much longer and he worked at it much more..than a normal one..why me? Why must I always be different? oh well. I had to cancel the step 2 on the upper tooth.it was supposed to be yesterday..no way could I handle that. I changed that to Feb. after my Mayo visit..something fun to look forward to. Hoping by Mon. the pain is much better. I don't want to call the endodontist again..he must think I am a wimp..
Also trying to write stuff down all in one notebook...what happened when, etc. That has proved to be the hardest thing for me.
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

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Happy2Bhere
Forum Leader
Username: Happy2bhere

Post Number: 3719
Registered: 02-2008
Posted on Friday, December 10, 2010 - 05:26 pm:   Edit Post Delete Post Print Post

Heather,

I am truly enjoying your posts on your Blog.

Bless your heart for enduring such pain with your tooth this week.

Ol' Bob
Texas Bob
My Organ Donor Tees

Heart Transplant performed Jan 28th 1991
Bod Heart Transplant Story
Heather
Forum Leader
Username: Heather

Post Number: 3183
Registered: 05-2003
Posted on Saturday, December 11, 2010 - 12:27 am:   Edit Post Delete Post Print Post

In Oct. my reg. doc did metabolic panel I think it is..and for the first time I can ever remember...my liver enzymes were elevated. So I had them redone this week.. and they came back normal..thank GOD!

I need to get more organized with writing stuff down. I have notebooks all over. Never really thought I would need to read back through them all..I just go through journaling spurts and fill up journals with things going on in my life and my thoughts, prayers, etc.


We are supposed to be getting 2-4 inches of snow tomorrow afternoon..and then the wind is to pick up and be very very nasty and blizzard like on Sunday with blowing and drifting all over. I heard that Interstate 74 will be bad as the wind will be blowing straight across it. Glad I don't intend to go anywhere..maybe taking some pics if the roads are not bad in town and out this way.

Bob..thanks..my blog is not too exciting so I hope it does not put you to sleep.
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

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LadyDi
Forum Leader
Username: Ladydi

Post Number: 2520
Registered: 03-2008
Posted on Saturday, December 11, 2010 - 07:59 pm:   Edit Post Delete Post Print Post

Wow! What a whirlwind you have had! At least Mayo is being thorough.
We lucked out - only about an inch of snow here predicted for tonight.
But then it is supposed to be bitter cold for the next couple of days with single digits.
I am beginning to understand why people want to winter in Florida......
Kidney Donor to Husband 10/30/07
Forum Leader-Living Organ Donation
Barnes Jewish Hospital St. Louis, Mo

My Donation Story

Post Donation Things to consider

I walk slowly, but I never walk backward - Abraham Lincoln
Happy2Bhere
Forum Leader
Username: Happy2bhere

Post Number: 3726
Registered: 02-2008
Posted on Saturday, December 11, 2010 - 08:59 pm:   Edit Post Delete Post Print Post

" I hope it does not put you to sleep."

Heck NO !! I'm truly enjoying it, by golly.


Ol' Bob
Texas Bob
My Organ Donor Tees

Heart Transplant performed Jan 28th 1991
Bod Heart Transplant Story
Heather
Forum Leader
Username: Heather

Post Number: 3189
Registered: 05-2003
Posted on Sunday, December 12, 2010 - 10:51 am:   Edit Post Delete Post Print Post

Actually Mayo requested I bring all films, MRI's, tests, labs and my records that pertain to my current medical issue I am being seen for. So..since I have so many random things going on..I am getting all my xrays from 10 years ago to now, all MRI's, all labs...and Dr. notes from 2 years til now...I am going with more than they need I am sure..but better too much than not enough. And if they don't want to look at something..so be it. But I want all my issues addressed because they could all be connected somehow. It is quite overwhelming at the moment.

A lady I know here in town just traveled up to Mayo yesterday with all the snow and road closings..they made it safe and sound last night. I hope it isn't like that when we go in Jan!

So far only a dusting of snow but like you said, Diane..temps are supposed to drop and be bitter cold. This is January weather, isn't it? The sun is trying to come out right now. We are supposed to get from 1-3 inches today and up to 50 mph winds. hmmm. Good day to stay inside. After church, that is what I intend to do.

Made some peanut butter balls last night. I just hate dipping a lot of stuff in chocolate. mine never look good. May taste good but don't look good.
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

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Heather
Forum Leader
Username: Heather

Post Number: 3190
Registered: 05-2003
Posted on Monday, December 13, 2010 - 06:19 pm:   Edit Post Delete Post Print Post

woke up Sunday and felt fine. Drank my coffee and read the paper. Then as I was thinking of getting up and taking a shower...nausea hit me out of nowhere. Must have been right after my above posting I guess. I ended up going back to bed for a while. After a while I felt fine and did some things around the house, laundry, ran the sweeper, made some truffles...then last night it hit again..but not as bad or for as long. Woke up this morning, drank tea and crackers. DIpped my truffles in chocolate and put them in the freezer. Then decided to run some errands. So ran to 4 different places signing releases for medical records. Went to the store for some soup and stuff and came home and here I am. Still not feeling quite up to par but glad I got that stuff done. Later this week I must get a permanent filling in my tooth. IF that ends up aggravating my tooth again at least I h ave some time to let that calm down again before Christmas.
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

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Organic Gal
Board Administrator
Username: Rise

Post Number: 15130
Registered: 05-2003
Posted on Monday, December 13, 2010 - 06:29 pm:   Edit Post Delete Post Print Post

Just checking on you. Glad to see you are keeping us up to date. :-)
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05
Debra Fertel MD- Si Pham MD, Professor of Surgery---Jackson Memorial Hospital
Anas Hadeh MD, Cleveland Clinic Cystic Fibrosis Consultant


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DAP1122
Forum Leader
Username: Dap1122

Post Number: 2228
Registered: 05-2008
Posted on Monday, December 13, 2010 - 11:00 pm:   Edit Post Delete Post Print Post

Heather,

A blog doesn't have to be exciting, it's just a way of communicating. It is informative and that's what counts! Believe me, I enjoy it. Keep up the good work!!

How's the snow levels in your neck of the woods>? We've got about 5 to 6" here now and about 10 degrees and wind-chills of minus 10 right now. Beautiful Ohio weather!!

DAP
New blog/web page -
My2ndHeartBeat
Dap's Email

Heart Tx - 5/11/2007
DAP
Ohio, USA

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Heather
Forum Leader
Username: Heather

Post Number: 3191
Registered: 05-2003
Posted on Tuesday, December 14, 2010 - 12:56 am:   Edit Post Delete Post Print Post

Don it is 5 degrees here with windchill of - 12. We did not get but maybe an inch of 2 of snow over the weekend. Most of what we did have ..about 6, melted before the big storm. It was sure windy as heck though and visibility was awful.

Feeling pretty normal tonight so far. Got to eat a baked potato and some toast and no upset stomach..yay.
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

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Organic Gal
Board Administrator
Username: Rise

Post Number: 15138
Registered: 05-2003
Posted on Tuesday, December 14, 2010 - 02:24 pm:   Edit Post Delete Post Print Post

Glad to hear you are feeling better!!
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05
Debra Fertel MD- Si Pham MD, Professor of Surgery---Jackson Memorial Hospital
Anas Hadeh MD, Cleveland Clinic Cystic Fibrosis Consultant


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Heather
Forum Leader
Username: Heather

Post Number: 3194
Registered: 05-2003
Posted on Saturday, December 18, 2010 - 08:48 pm:   Edit Post Delete Post Print Post

Whew...when it rains it pours. On Tues. morning, my dad slipped on the ice and fell, hit the top of his head on the curb and hurt his back and various other places..he is doing better now but still very sore. Then on Wed. eve. my grandma, who lives with my parents, fell..and was complaining A LOT of pain..so off to the ER with her they go. They did a ct scan and xrays. nothing broken but something made them want to take a CT of her head. So..anyway..admitted for observation..but in the ER mom had commented on how grandma could not squeeze her hand..the nurse said oh she squeezed mine softly....I suppose she could have been given that drug they give when someone has a stroke...but they did not...and she did..have a stroke..they finally diagnosed on Thurs. night when I was sitting with her and the neuro. came in to check her. Nothing showed up on the CT of her brain indicating one but he said she def. had one.
She cannot lift her arm, move her hand or arm other than from the shoulder. Her leg on that side is weaker..but she can move it. The face was not affected that I can tell. Her speech is a little different..kinda gruff..but not slurred. She is not happy to be in the hosp. again since she just got out a few weeks ago. Now on Mon. they will have to find a nursing home for her to get therapy to get her strong enough to go home. She wants someone there with her all the time..so one of us 3 is always there..mostly mom..bless her heart. I hope I am able to be as dedicated and honor her as she has her mother in her last years. I realize she is 102 and will not be around forever..at least not here on earth...but I don't want to see her waste away and give up in a nursing home, so I am praying she will fight and rally and get strong enough so mom and dad can handle her at home. She is a tiny woman but no matter now tiny..people are heavy when they can't bear weight. Trust me I know from the years I worked in a nursing home.

On another note, spent the day in Indianapolis (Avon) with Nick, Katie and 2 of our grandkids. Our other son in law did not bring the other grandkids as was planned....not happy about that at all. This was our Christmas with them. With all the divorced parents it is hard to get scheduled in for time to celebrate Christmas with them. It is sad. We had to just leave the gifts for the other grandkids there.

We had a nice time with Nick, Katie, Isa and Lincoln. If I can get the pics small enough I will post some in my picture thread.

Have not been taking too many pics..but on the way to Indy this morning it was gorgeous..there was frost all over everything..trees, weeds, bushes,,along the interstate..but we could not just stop and take pics from there. Would have been some gorgeous pics. oh well. Maybe another morning.

I have gotten all my records except for requesting 2 more years back from my general physician..and they will call on that..and also my chiropractor is dragging his heels or the girls are just not hurrying. I am grateful that the others got them for me so quickly. That is a weight off my mind. Now...I still have to get my act together and write up a gooooood history of my own and get my dates and stuff right.

In the meantime..I will go up and sit with my grandma to give mom a break. It is hot up there and really bothers me so I have to take a small fan up there and plug it in sometimes..and even then, my face will burn...yesterday..it melted my makeup it was so hot (my face)..I wear mineral makeup and it is powder..but it in not on my cheeks after they get hot...it is like liquid makeup and it looks awful. UGH. I can't go without..my face gets too red and I would not want to go anywhere like that.
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

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Organic Gal
Board Administrator
Username: Rise

Post Number: 15181
Registered: 05-2003
Posted on Saturday, December 18, 2010 - 09:10 pm:   Edit Post Delete Post Print Post

Oh Heather

What a nightmare! I feel so badly for all of you. I will keep you and your family in my prayers. Take care of yourself. I feel tired just reading all that you have witnessed.

check out http://www.ewg.org for safe makeup.
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05
Debra Fertel MD- Si Pham MD, Professor of Surgery---Jackson Memorial Hospital
Anas Hadeh MD, Cleveland Clinic Cystic Fibrosis Consultant

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DAP1122
Forum Leader
Username: Dap1122

Post Number: 2240
Registered: 05-2008
Posted on Saturday, December 18, 2010 - 09:55 pm:   Edit Post Delete Post Print Post

Heather,

I'll keep you & your family in my prayers. I agree with Rise', you have to be exhausted.

Please take care of YOURSELF too!!
New blog/web page -
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Dap's Email

Heart Tx - 5/11/2007
DAP
Ohio, USA

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Dottie Lessard
Forum Leader
Username: Dottie_lessard

Post Number: 118
Registered: 03-2009
Posted on Sunday, December 19, 2010 - 03:58 pm:   Edit Post Delete Post Print Post

Hi Heather,
I read Rise's last post and took a few minutes to look into all that you have been going through-I am sorry for all the difficult things but i can tell you are very strong. My thoughts and prayers are with you and I am wishing for a wonderful, powerful, and healthy 2011 for you filled with all the happiness, health and love you deserve!

Warm thoughts and overflowing get well and stay well wishes,
Dottie
Dottie,
Author of "The Seven Letters That Saved My Life"
Coach, Athlete and Mom to Liam
Survivor of
Cystic Fibrosis, Double lung transplant 94, Kidney transplant, 02
www.dottielessard.com
WholeBodyWellbeing.com
ASK DOTTIE...
Dottie's Lessard TransplantBuddies Blog
Karen R.
Forum Leader
Username: Relivkaren

Post Number: 5102
Registered: 07-2007
Posted on Wednesday, December 22, 2010 - 01:09 am:   Edit Post Delete Post Print Post

Heather:

I am so sorry that things keep happening to you and your family. You definitely need a break! I agree with Dottie - 2011 has to be better!

I have been keeping up with your blog, but I just have not had much time to post. I have been a busy girl. I haven't had to get ready for Christmas for 5 years. Now I can't make myself stop!! LOL!! It's a good thing, but I feel as if I have neglected Tx Buddies. I keep you in my prayers every night.

When do you go to Mayo? For some reason I can't remember that. I really pray that they can figure out what is going on with you.

Just know that I am praying!

Merry Christmas and God Bless!
Karen
Dx: BOOP - May 2006. Rediagnosed with Bronchiolitis Obliterans Nov. 2006
Double lung transplant on Dec. 1st, 2009
Cleveland Clinic

Ohio, USA

Be kinder than necessary because everyone you meet is fighting some kind of battle.
Heather
Forum Leader
Username: Heather

Post Number: 3198
Registered: 05-2003
Posted on Wednesday, December 22, 2010 - 01:41 am:   Edit Post Delete Post Print Post

Thank you, Dottie and Karen. I go to Mayo on Jan. 16..my appt. is the next day. Seems to be creeping up on me...

Today I went to Indy with my dad to his check up with his cardiologist. He had aortic valve replacement in Apr. and is not feeling any better now than he did before the surgery. So...we left at 9 30 and I got home at 5..ugh. long day for one appt. But the doc. wanted to do a stress echo test? on him and that took over an hour..plus the usual waiting for the doctor in the first place...so he has to have a pulmonary function test and a chest xray sometime soon. They are trying to find out why he is not feeling any better. I am thinking the echo would show if the valve was working and blood was pumping through there..am I right?

Grandma has 2 bedsores from being in the hospital. man does that upset me greatly. Those are hard to heal once they get started. I tell ya they better be turning her and keeping her off those in that nursing home or I will have a fit. I used to work in a nursing home and I know how some of the workers can be..lazy.
My mom said if she feels they are not going to take her therapy and bedsores seriously she will move her somewhere else.

oh...and 2 days after grandma fell..my brother called and said he fell off his porch and hit his head and leg while sweeping snow off...he is ok.
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

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Hostess Meagan
Forum Leader
Username: Newheart14

Post Number: 1671
Registered: 01-2009
Posted on Wednesday, December 22, 2010 - 06:01 am:   Edit Post Delete Post Print Post

I am sorry for all you and your family are going through right now. When it rains it pours. I wish you all blessings for a wonderful and peaceful Christmas and a new year filled with good things and good news and extremely good health for your and your entire family.
Forum Leader
Heart-Liver Transplant - February 14, 2008
Toronto General Hospital, Toronto, Canada
Idiopathic dilated cardiomyopathy 1991 and CHF

- Most of the important things in the world have been accomplished by people who have kept trying when there seemed to be no hope at all - Dale Carnegie
- Bumps in the road can sometimes be mountains, so I have learned to climb mountains - Meagan

Meagan's Blog
Hostess Rise'
Board Administrator
Username: Rise

Post Number: 15211
Registered: 05-2003
Posted on Wednesday, December 22, 2010 - 01:21 pm:   Edit Post Delete Post Print Post

Dear Heather- I am glad that you are all taking care of your Grandma. What is wrong with lazy nursing home workers? Don't they feel?

Your plate is so filled with your Dad,yourself and your Grandma. Glad to hear your brother is ok.

Take extra care of yourself

sending you a special delivery hug.

(((((((((((((((((((((((((((((((((((((Special HUG)))))))))))))))))))))))))))))))))))
For HEATHER
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05
Debra Fertel MD- Si Pham MD, Professor of Surgery---Jackson Memorial Hospital
Anas Hadeh MD, Cleveland Clinic Cystic Fibrosis Consultant

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Heather
Forum Leader
Username: Heather

Post Number: 3199
Registered: 05-2003
Posted on Thursday, December 23, 2010 - 12:48 am:   Edit Post Delete Post Print Post

I am touched by the friends I have here. Thank you for your thoughts and prayers.

Here is a good one...

The family doc I go to had his own practice before joining the clinic he is now with. The clinic opened in 2008 I guess. I went to his family practice before that opened..so I have gone to him for about 15 years. I called the Clinic he is now with ..for my records from 2006 and 2007...that was a few weeks ago. Today I called to see how those records were coming along. I could not believe what they said...they could only find records from Sept. 2007 to present..HUH????? They looked everywhere..and had more than one person look in case they overlooked it...and they cannot find any of my medical records later than that date.. are you kidding me?????? NOW WHAT? I asked what I was to do to find them and they said..there is nothing..we just cannot locate them anywhere. FIGURES.

Went to see my grandma today. She is not a happy camper. I don't blame her. My mom really spoiled her at home. I can't tell you how happy I am to see my mom going home once in a while and sleeping at home at night.

This Christmas is def. going to be different. Will be spent with my grandma in the nursing home for dinner. It is most likely her last one with us. So me, Danny, mom , dad, my uncle, his wife and her daughter and maybe my brother..will be eating with grandma. She will love that.

I wish you all a very Merry Christmas and holiday season. ..and also a year filled with only good things.
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

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DAP1122
Forum Leader
Username: Dap1122

Post Number: 2253
Registered: 05-2008
Posted on Thursday, December 23, 2010 - 10:07 am:   Edit Post Delete Post Print Post

Hang in there Heather, we've got you covered in the prayer department!!

Merry Christmas to you and yours and may the new year bring you peace and good health!!
New blog/web page -
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Heart Tx - 5/11/2007
DAP
Ohio, USA

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LadyDi
Forum Leader
Username: Ladydi

Post Number: 2526
Registered: 03-2008
Posted on Thursday, December 23, 2010 - 02:23 pm:   Edit Post Delete Post Print Post

I am way behind in catching up on posts. What can I say - prayers go out to you and your family. Here's hoping for a better holiday and 2011 for you. You are certainly deserving of the peace.
Kidney Donor to Husband 10/30/07
Forum Leader-Living Organ Donation
Barnes Jewish Hospital St. Louis, Mo

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I walk slowly, but I never walk backward - Abraham Lincoln
Hostess Rise'
Board Administrator
Username: Rise

Post Number: 15222
Registered: 05-2003
Posted on Thursday, December 23, 2010 - 02:54 pm:   Edit Post Delete Post Print Post

Hi Heather

You are all very blessed to have one another.

Enjoy your Holiday!

sending you continued hugs of support.
xoox
Rise'
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05
Debra Fertel MD- Si Pham MD, Professor of Surgery---Jackson Memorial Hospital
Anas Hadeh MD, Cleveland Clinic Cystic Fibrosis Consultant

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Heather
Forum Leader
Username: Heather

Post Number: 3202
Registered: 05-2003
Posted on Thursday, December 30, 2010 - 10:49 am:   Edit Post Delete Post Print Post

Well, we moved my grandma into a different nursing home..we were not happy with some of the care she was getting. Some of the nursing staff was wonderful but others were not and we did not feel comfortable leaving her there without one of us being there. That is too bad because it is considered one of the better ones in our city. For about 3 dollars more a day she is now at a brand new facility that is much homier..not hosp. looking.. and the staff so far is wonderful and they actually call you and tell you each month when they do their careplan meetings and want family to come to voice concerns, or things that they think will make their loved ones stay better...if they get complaints on an employee they do not take it lightly and will work with each resident to provide them with the nursing stall that works the best for them...so far it is much much better than the last place and we feel much more at ease leaving her there..in their care. They are very very friendly...even when they are way behind and working more hours than they normally do...last night the girl said the kitchen put them over an hour behind for getting people ready for bed..I got grandma as ready as I could..all but the pj bottoms..then helped the girl a little..not much..not with my back..get her to bed so she did not have to bother another CNA. Grandma of course wants to come home and does not want to stay there..but DOES agree it is so much better than the last place..but there is no place like your own home and your own bed and she hates therapy...who wouldn't at 102?

The medical records dept. head at the clinic that lost all my records failed to call me on Tues and has not returned my call from yesterday morning. I called my local doc office and asked them if THEY had the records there by chance since I was still going to the same doctor. They returned my call...but I missed it. I don't know what they have to say. I cannot believe they would not have a backup for records...I am so ticked off about that. I mean..can you imagine one of the transplant recipients having all their past records..other than the most recent 3 years...lost? omg.....
From now on...I am asking for copies of ALL things done to me ....dr. notes, reports, labs..etc..be mailed to me after each visit. Period...no excuses. I usually ask for labs..but never the notes..

I am now having some more weird symptoms..my hands will get very hot in the evening..this happened several evenings the past week or so..it would last an hour or so. Then the past few days I have noticed and tried to ignore and explain away...warmth in my L lower leg and top of foot. I guess if it is going to happen better before Mayo than after.

I am getting anxious about the trip. Trying to make sure everything is collected from doctors and making reservations, calling about boarding my little faithful companion (mini schnauzer). I have only boarded her 1 or 2 nights in her entire life..never a week. I am already missing her and not wanting to do that. I have 2 places I am going to check out today maybe..they both told me to call before I come..to make sure they are there...??? so I am planning on calling about a mile away and just showing up...don't want to give them time to clean things up or anything..if that is the case. I want somewhere nice for her. I feel so awful leaving her.

My little sweetheart E. Joy is gone to Texas this week. I miss her and miss talking to Penny on the phone and hearing her squealing in the background. her phone roams outside Illinois..so I don't call.

I received a Kindle for Christmas. I love it. Take it in my purse everywhere I go..in case I have time to read..especially at the doc. office or nursing home if grandma falls asleep...which is not often.

My dad said the other day to me that they just have to find out what is wrong with him because he can't walk very far at all without his chest hurting. He has an appt. for a pulm. function test Jan. 11. I am wondering if he should call and get in earlier. They did stress echo on him a few weeks ago...wonder how that came out? I need to call him and see.
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

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Hostess Rise'
Board Administrator
Username: Rise

Post Number: 15279
Registered: 05-2003
Posted on Thursday, December 30, 2010 - 01:57 pm:   Edit Post Delete Post Print Post

Hi Heather,

Glad to hear your Grandma likes the new nursing home. I hope she does come home.

Do you think your Father is having pain from his fall or does he think it is related to his primary condition?

Wishing you of course the very best of health for this coming year and I certainly hope that you find the answers to all of your health concerns that are troubling you.
love
Rise'
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05
Debra Fertel MD- Si Pham MD, Professor of Surgery---Jackson Memorial Hospital
Anas Hadeh MD, Cleveland Clinic Cystic Fibrosis Consultant

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Heather
Forum Leader
Username: Heather

Post Number: 3206
Registered: 05-2003
Posted on Sunday, January 09, 2011 - 09:56 pm:   Edit Post Delete Post Print Post

Thanks for changing the pic, Rise. Much better.

I think my dad's pain is from something other than the fall. The Dr. said it sounded like there was not as much air exchange as he would have liked..in his lungs I guess so he is having Pulmonary function tests on Tues in Indy. I am not sure what tests exactly they are doing...

One week from tomorrow I have my first appt. at Mayo. Hopefully 2 weeks from now I will have some answers..I am getting kind of nervous and a little scare of what they may tell me. I have some other weird junk going on to add to my growing list..for them.

I will post when I know anything from up there. In the meantime..it is run, run to make sure I have everything...and get packed and stuff...UGH.
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

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DAP1122
Forum Leader
Username: Dap1122

Post Number: 2306
Registered: 05-2008
Posted on Monday, January 10, 2011 - 10:33 am:   Edit Post Delete Post Print Post

Heather,

Good luck at mayo next week. We've got you covered with our prayers.
New blog/web page -
My2ndHeartBeat
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Heart Tx - 5/11/2007
DAP
Ohio, USA

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CiscoKidney07
Forum Leader
Username: Gregg

Post Number: 4361
Registered: 03-2008
Posted on Monday, January 10, 2011 - 11:15 am:   Edit Post Delete Post Print Post

Hey, Heather, as always, you are in LadyDi and my prayers. I know you are nervous, we all get that way. It will be okay. Good luck to you at Mayo! We got your back.
There are not too many things in life worth working my butt off for, but my health is one of them

Check out my daily fitness blog postings
Heather
Forum Leader
Username: Heather

Post Number: 3207
Registered: 05-2003
Posted on Monday, January 10, 2011 - 08:09 pm:   Edit Post Delete Post Print Post

Thanks, Don and Gregg. I will keep everyone updated on what I find out. I am hoping it will be just a few days...I am not liking the thought of boarding my baby for a week...we have always taken her on trips and stuff of had someone take care of her if it is just a day or two.....so I have boarded her a total of 1 night in 11 years...yikes. I am gonna cry.....
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

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Hostess Rise'
Board Administrator
Username: Rise

Post Number: 15475
Registered: 05-2003
Posted on Thursday, January 13, 2011 - 11:34 am:   Edit Post Delete Post Print Post

Hi Heather,

I had no idea you had a cold/sore throat. Wishing you better health soon.

I will keep you in my thoughts and prayers.
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05
---Jackson Memorial Hospital

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Karen R.
Forum Leader
Username: Relivkaren

Post Number: 5135
Registered: 07-2007
Posted on Friday, January 14, 2011 - 01:16 am:   Edit Post Delete Post Print Post

Heather:

I have had your Mayo leaving date on my calendar so that I wouldn't forget it. :-)

I wish you well as you travel to Mayo. Please be careful driving. I truly hope and pray that they can find some answers to your health issues. I hope that you come back with some ways to make you feel much better.

You are always in my prayers!

God Bless!
Karen
Dx: BOOP - May 2006. Rediagnosed with Bronchiolitis Obliterans Nov. 2006
Double lung transplant on Dec. 1st, 2009
Cleveland Clinic

Ohio, USA

Be kinder than necessary because everyone you meet is fighting some kind of battle.
Heather
Forum Leader
Username: Heather

Post Number: 3211
Registered: 05-2003
Posted on Saturday, January 15, 2011 - 09:45 am:   Edit Post Delete Post Print Post

Hey Karen....do they have irons and laundry at Soldiers field?

ugh. Why now..do I get a bad cold? I have not had one for months..if not a year...but now? Great.
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

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Liver Giver
Forum Leader
Username: Beteboop

Post Number: 808
Registered: 10-2007
Posted on Saturday, January 15, 2011 - 12:34 pm:   Edit Post Delete Post Print Post

Hi Heather,
Add me to the list of prayers being said for you! I certainly hope your cold symptoms leave you and that all goes well at Mayo!!
Dawn
Forum Leader Living Organ Donation
Liver Donor 11/19/07 to brother Anthony

Good and bad things happen in life, but what matters, what defines us, is how we handle them
Karen R.
Forum Leader
Username: Relivkaren

Post Number: 5136
Registered: 07-2007
Posted on Saturday, January 15, 2011 - 01:14 pm:   Edit Post Delete Post Print Post

Heather:

I am sorry that you have a cold. As a matter of fact, I remember quite well that I was getting a cold as we were driving to Mayo?!!? That's wild!! I was miserable there. I had a cold and I had all these doctors poking at me!?!? LOL! I am not saying you will be miserable - I just think it's funny that I had a cold too when we went to Mayo. YIKES!!

I know that they have a laundry room - coined operated. I am pretty sure there were irons and ironing boards in the rooms. Not positive, but I think so.

Anyways...have a safe trip. I hope your cold gets better. If not, you are in a good place to get treatment?!!?

God Bless!
Karen
Dx: BOOP - May 2006. Rediagnosed with Bronchiolitis Obliterans Nov. 2006
Double lung transplant on Dec. 1st, 2009
Cleveland Clinic

Ohio, USA

Be kinder than necessary because everyone you meet is fighting some kind of battle.
Heather
Forum Leader
Username: Heather

Post Number: 3212
Registered: 05-2003
Posted on Saturday, January 15, 2011 - 05:00 pm:   Edit Post Delete Post Print Post

Thank you, Dawn. And thank you Karen for the info. I was wondering about the laundry. so maybe I can not take so much stuff after all since I can wash if I want. cool. sure they have irons if they have laundry.

I always feel worse in the morning and as the day goes on..I don't feel as bad. I took C, zinc and echinacea and will take some more later. Hope to kick it before it gets worse. Minnesota is having the coldest temps of the season this next week. How special I feel. lows below zero...brrrrrrrrrrrrrr

I am not having such a great day today. I dropped Baylie off at the kennel at noon..that is the latest I could bring her. It broke my heart cause I am only a few min. away and still here at home til tomorrow and she is in a strange place wondering when I am coming to get her. I hate it. I have only left her once for a night maybe 2..can't remember..about 4 years ago but other than that if we were gone for a day we would have someone come over and take care of her. I have never left her or not had her with me for 11 years other than those times. I bawled when I got back in the car...and wish she was here.

I am not looking forward to this trip at all. I don't want to go. I mean I need to go..but I don't want to go through it I guess. I am being wimpy today. I know how much all of you have gone through and it is nothing compared to me.....still I wish it would all just go away.
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

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LadyDi
Forum Leader
Username: Ladydi

Post Number: 2546
Registered: 03-2008
Posted on Saturday, January 15, 2011 - 11:40 pm:   Edit Post Delete Post Print Post

Wishing you safe travels, Heather. I am sorry this is so stressful for you! Hoping Mayo finds a solution and truly makes it all go away.
Kidney Donor to Husband 10/30/07
Forum Leader-Living Organ Donation
Barnes Jewish Hospital St. Louis, Mo

My Donation Story

Post Donation Things to consider

I walk slowly, but I never walk backward - Abraham Lincoln
Heather
Forum Leader
Username: Heather

Post Number: 3214
Registered: 05-2003
Posted on Sunday, January 16, 2011 - 12:42 am:   Edit Post Delete Post Print Post

thank you, Diane.
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

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