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{http://www.transplantbuddies.org/tbx/messages/28848/163580.html?1280200448,/

My name is Heather. I am from east central Illinois. I donated a kidney to my Dad on 12-1-99 in Chicago. Since donating, my Dad and I have a special bond we did not have before. I hope to continue helping on this site, to support and help others who would like to donate, already have donated, and those who were wanting to donate and could not.

  Thread Original Poster Last Poster Posts Pages Last Post
November 2011HeatherLadyDi11-10-11  12:01 am
2011 PicturesHeatherHeather10-24-11  10:26 pm
Oct. 2011HeatherHeather14 10-22-11  04:33 pm
Sept 2011HeatherHostess Rise'20 10-05-11  10:12 pm
Aug 2011HeatherHeather08-26-11  04:32 pm
June 2011HeatherHeather19 08-02-11  07:38 pm
Life After Mayo Clinic....HeatherHeather39 06-09-11  12:24 am
Mayo JourneyHeatherKaren R.27 01-29-11  12:05 pm
Blog starting Sept. 19, 2010HeatherHeather101 01-16-11  12:42 am
More pictures..........HeatherRise16 11-03-10  04:33 pm
Random PicturesHeatherHeather75 08-26-10  08:30 pm
Kelli made this for the Living Donor Heroes forumHostess RiseHeather08-21-10  09:08 pm
Heather's BlogHeatherHeather181 06-05-10  01:32 am
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Heather
Forum Leader
Username: Heather

Post Number: 2846
Registered: 05-2003
Posted on Thursday, April 15, 2010 - 09:06 pm:   Edit Post Delete Post Print Post

Just wanted to start a new blog with no pics to have to wait on....will copy some of the old posts in a while
Heather

Forum Leader - Living Organ Donation
EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

DONATE LIFE
Heather
Forum Leader
Username: Heather

Post Number: 2847
Registered: 05-2003
Posted on Saturday, April 17, 2010 - 10:09 am:   Edit Post Delete Post Print Post

Getting a little nervous as my dad's heart surgery date draws nearer. I don't know what I would do if something went wrong and he did not make it. I can't think about that.

My girlfriend is still in the hosp. and will remain there til her baby is born. We are hoping several weeks. We want her developed before coming into this world!! She is 30 1/2 weeks right now. She is getting a sonogram every day and non stress test monitoring 3 times a day. There were some issues with blood flow to or from the placenta or something 3 days ago..it was being interrupted...but her numbers are staying the same and not getting worse. If they start to get worse and it gets to a certain point, they will have to deliver the baby.

Spring is here. It was in the 80s this past week. Kinda freaky in April. Almost too warm a few days. Now it is back to normal in the 60s this week. The trees are all in bloom and have leaves on them, grass is green, flowers are blooming..ahhhh. This is what I have been waiting for all winter. Lilacs smell so lovely. I will post some pictures on my other thread soon.

Nothing new on my health issues. My back still bothers me 24/7 and limits me greatly as to what I can do and how much. It is distressing to get MRI's that say it looks good. There was a blurb in the report about a slight bulging of disc and encroachment upon a nerve foot. Hello? does that sound "good"?? I may be adding a back specialist to my growing list of specialists.
Hey..I am a donor...not a recipient. I am supposed to be healthy...right?
Heather

Forum Leader - Living Organ Donation
EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

DONATE LIFE
LadyDi
Forum Leader
Username: Ladydi

Post Number: 2243
Registered: 03-2008
Posted on Saturday, April 17, 2010 - 09:08 pm:   Edit Post Delete Post Print Post

Sorry to hear you are still having back trouble, Heather. That has to be miserable if it is constant.
When is your Dad's surgery date? I am willing to bet he is one tough guy and will get through it probably better than you will!
Kidney Donor to Husband 10/30/07
Forum Leader-Living Organ Donation
Barnes Jewish Hospital St. Louis, Mo
My donation story:
http://www.transplantbuddies.org/tbx/messages/28633/34433.html?1256168874

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

Post Number: 521
Registered: 02-2009
Posted on Saturday, April 17, 2010 - 09:40 pm:   Edit Post Delete Post Print Post

Take care Heather. Constant pain is so fatiguing. Have you found anything that helps at all? Does stretching or yoga make any difference at all.
Good luck with finding a resolution to your back pain, and good luck to your Dad with his surgery.
Diane
Liver Transplant Nov 20, 2008
Vancouver General, BC

“Sometimes our light goes out but is blown again into flame by an encounter with another human being. Each of us owes the deepest thanks to those who have rekindled this inner light.”

Albert Schweitzer
Heather
Forum Leader
Username: Heather

Post Number: 2848
Registered: 05-2003
Posted on Saturday, April 17, 2010 - 10:33 pm:   Edit Post Delete Post Print Post

Thanks both Diane's. Nothing seems to help the back except a heating pad sometimes and just sitting back in a recliner..or lying down.

Dad is having surgery Tues morning. I will be driving over around 3 am Tues morning and will stay the night with my mom over there..then coming home Wed. early afternoon to go stay with my grandma til Thurs. afternoon... going to be a busy week for all of us.
Heather

Forum Leader - Living Organ Donation
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: 12909
Registered: 05-2003
Posted on Saturday, April 17, 2010 - 11:33 pm:   Edit Post Delete Post Print Post

Dear Heather

I hope you find a solution to your pain soon. Are you wearing comfortable shoes? When I wear my shoes with orthodoctics my back aches less.

I wish you and your family good health.
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05 JMH

contact
Transplantbuddies@gmail.com

Join our Social Network on
www.transplantfriends.com
Heather
Forum Leader
Username: Heather

Post Number: 2849
Registered: 05-2003
Posted on Sunday, April 18, 2010 - 01:44 am:   Edit Post Delete Post Print Post

Hi Rise. I have worn custom orthotics for 2 years now. I cannot go without them.

I did not mean that recipients cannot be healthy..I did not mean to imply that.. I meant that recipients or those waiting for tx have many obstacles to overcome and many health issues. We donors are supposedly the healthier lot....I think?

Thank you for the well wishes. I will let you know how things go. There is so much going on in my life, my family's lives, my friends lives...it is just like everything all at once...and has not let up much in a while.
Heather

Forum Leader - Living Organ Donation
EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

DONATE LIFE
DAP1122
Forum Leader
Username: Dap1122

Post Number: 1685
Registered: 05-2008
Posted on Sunday, April 18, 2010 - 10:19 am:   Edit Post Delete Post Print Post

Heather,

God will be with you next week and will guide you and your family through the obstacles.

We'll be keeping you in our thoughts and praying.

God Bless!
New blog/web page - http://My2ndHeartBeat.wordpress.com
DAP1122@Gmail.com
Heart Tx - 5/11/2007
DAP
Ohio, USA

Link to the Transplant Buddies Calendar - http://www.my.calendars.net/2ndHeartBeat
Heather
Forum Leader
Username: Heather

Post Number: 2850
Registered: 05-2003
Posted on Sunday, April 18, 2010 - 08:25 pm:   Edit Post Delete Post Print Post

Thanks, Don. I know the Lord is with us and has my dad in His hands. I will update.
Heather

Forum Leader - Living Organ Donation
EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

DONATE LIFE
Brian
Member
Username: Briancurran01

Post Number: 95
Registered: 10-2009
Posted on Sunday, April 18, 2010 - 10:06 pm:   Edit Post Delete Post Print Post

Heather, I hope everything goes good with your dads surgery I will keep him and you in my prayers.

Brian
Awaiting kidney Transplkant since 12/09
Heather
Forum Leader
Username: Heather

Post Number: 2851
Registered: 05-2003
Posted on Monday, April 19, 2010 - 01:45 am:   Edit Post Delete Post Print Post

Thanks Brian. I appreciate it.
Heather

Forum Leader - Living Organ Donation
EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

DONATE LIFE
Heather
Forum Leader
Username: Heather

Post Number: 2852
Registered: 05-2003
Posted on Monday, April 19, 2010 - 01:48 am:   Edit Post Delete Post Print Post

oh forgot. I went up to the hospital to visit my friend today. The baby's numbers that were up...are back down and in the normal range!!! woo hoo. and my friends bp was good also. The docs were very sure the baby's numbers would just get worse ....not better. So that is wonderful news. I will miss hanging out with her this week as it is full with my dad and my grandma. Maybe this weekend...maybe.
Heather

Forum Leader - Living Organ Donation
EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

DONATE LIFE
CiscoKidney07
Forum Leader
Username: Gregg

Post Number: 3421
Registered: 03-2008
Posted on Monday, April 19, 2010 - 09:54 am:   Edit Post Delete Post Print Post

Good luck, hon! We'll be thinking of you.
There are not too many things in life worth working my butt off for, but my health is one of them
Meagan
Forum Leader
Username: Newheart14

Post Number: 1159
Registered: 01-2009
Posted on Monday, April 19, 2010 - 04:57 pm:   Edit Post Delete Post Print Post

Hi Heather,

Good luck with your dad's surgery. Hope your back doesn't give you too much trouble.
Forum Leader
First Combined Heart-Liver Transplant
Performed at Toronto General Hospital, Toronto, Canada
February 14, 2008
Diagnosed with idiopathic dilated cardiomyopathy 1991 and eventual 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
Heather
Forum Leader
Username: Heather

Post Number: 2853
Registered: 05-2003
Posted on Monday, April 19, 2010 - 06:23 pm:   Edit Post Delete Post Print Post

Thanks guys. My back will give me fits but I will survive. Mom has a hotel room across from the hosp. tonight and the next few nights and I will stay with her tomorrow night..so I can always go lie down if it gets too bad... better get packing. I stay overnight with my grandma on Wed. after I drive home from Indy.
Heather

Forum Leader - Living Organ Donation
EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

DONATE LIFE
Heather
Forum Leader
Username: Heather

Post Number: 2854
Registered: 05-2003
Posted on Tuesday, April 20, 2010 - 05:59 pm:   Edit Post Delete Post Print Post

Up at 2:30 am. on the road at 3:30. Got to Methodist in Indy at 5 am. waited a while and then dad was out of assessment and we saw him for just a few min. in pre op. Hugs and prayer and off he went. They started at 7 and he was out around 11 or 12 in recovery/ICU. The doc came out and said he did very well. He was able to do the surgery without putting dad on the heart/lung machine which is great news. His potassium was high from his labs yesterday and his creatnine was 2.7. they are giving him higher doses of steroids for a few days and also hoping his creatine will return to his normal. I am so happy that they did not have to put him on the heart lung machine. That would have put his kidney at much higher risk.

so then mom tells me our hotel room is not the Hilton...I have not seen it...sure would love to see the bed about now. The waiting rooms leave much to be desired here at Methodist. No recliners or comfy chairs.

I did learn one thing today. Before we could go into the ICU we all had to turn off our phones..I have never turned mine off (had it about 6 months?) ...and did not figure it out til some lady showed me in the waiting room..geez..there is a power button on the side. All my others you just pushed the end or send button...lol

so will update again in a while. Mom is asleep here beside me on the loveseat. I am online now as I have had quite a time getting online.
Heather

Forum Leader - Living Organ Donation
EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

DONATE LIFE
Brian
Member
Username: Briancurran01

Post Number: 100
Registered: 10-2009
Posted on Tuesday, April 20, 2010 - 06:37 pm:   Edit Post Delete Post Print Post

Heather,

I am glad to hear your dad did well in surgery. I hope his creatinine returns to normal

Brian
Awaiting kidney Transplkant since 12/09
Diane
Forum Leader
Username: Mary_diane

Post Number: 524
Registered: 02-2009
Posted on Tuesday, April 20, 2010 - 06:43 pm:   Edit Post Delete Post Print Post

Heather,
I am so glad that your father has done well in surgery. I am sure his creatinine will return to normal within a few days.
And although your Mom's hotel is not the Hilton, I hope that you both have a deep restful sleep tonight. I am sure your back will appreciate it after a long drive and sitting in hard waiting room chairs.

Take Good Care
Diane
Liver Transplant Nov 20, 2008
Vancouver General, BC

“Sometimes our light goes out but is blown again into flame by an encounter with another human being. Each of us owes the deepest thanks to those who have rekindled this inner light.”

Albert Schweitzer
Meagan
Forum Leader
Username: Newheart14

Post Number: 1163
Registered: 01-2009
Posted on Tuesday, April 20, 2010 - 07:00 pm:   Edit Post Delete Post Print Post

Heather,

Glad to hear your dad is doing well. I hope your back has been OK. I sympathize as I know what back pain is like. Sorry about the hotel and uncomfortable waiting room. I was surprised when I visited the waiting room my husband and sons had to wait in for more than 14 hours during my surgery. They had no couches, or easy chairs, just regular chairs you see in any waiting room. They had big couches in other areas but not where the surgeons could find them easily.

Hope your dad is home soon.

Meagan
Forum Leader
First Combined Heart-Liver Transplant
Performed at Toronto General Hospital, Toronto, Canada
February 14, 2008
Diagnosed with idiopathic dilated cardiomyopathy 1991 and eventual 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
Hostess Rise'
Board Administrator
Username: Rise

Post Number: 12922
Registered: 05-2003
Posted on Tuesday, April 20, 2010 - 08:12 pm:   Edit Post Delete Post Print Post

Hello Heather

Glad that I checked your blog today. Thankfully your Dad is doing well. Keep us posted.
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05 JMH

contact
Transplantbuddies@gmail.com

Join our Social Network on
www.transplantfriends.com
LadyDi
Forum Leader
Username: Ladydi

Post Number: 2254
Registered: 03-2008
Posted on Tuesday, April 20, 2010 - 10:02 pm:   Edit Post Delete Post Print Post

That is wonderful news Heather! Glad to hear your Dad did so well! Hope the bed is not too hard on your back. How long will your Dad be in the hospital? Will he need special care when he goes home?
Kidney Donor to Husband 10/30/07
Forum Leader-Living Organ Donation
Barnes Jewish Hospital St. Louis, Mo
My donation story:
http://www.transplantbuddies.org/tbx/messages/28633/34433.html?1256168874

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

Post Number: 2855
Registered: 05-2003
Posted on Wednesday, April 21, 2010 - 01:05 am:   Edit Post Delete Post Print Post

Thank you everyone. He is doing well. He looks so good already. He finally wanted mom and I in there around 9 pm. He was talking..as well as he could after having that tube down his throat...was alert, eating ice chips, joking with us.
He will not have to have special care I don't think. He will be in 5-6 days they say.

My back is feeling pretty bad but now I am sitting in the bed with my heating pad on my back. My tummy is finally full...I am very tired. Been up since 2:30...........no nap...hope to sleep well. The waiting rooms are just way too uncomfortable..it is awful. oh well. I am looking forward to laying down in the hard bed now.
Heather

Forum Leader - Living Organ Donation
EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

DONATE LIFE
Heather
Forum Leader
Username: Heather

Post Number: 2856
Registered: 05-2003
Posted on Wednesday, April 21, 2010 - 09:56 am:   Edit Post Delete Post Print Post

My mom called the hospital since we cannot go see dad til after shift change in the ICU..they said he had a very good night, his urine output is ok now..better than yesterday and that they had him up in a chair already. So that is wonderful news and we praise God for that. I am working on some coffee now so I should be waking up more....the bed was awful...but at least it was not a hard chair like we were in all day..I have that yet to look forward to. Wondering if they are going to put him in a private room since his risk for infection is so high...

So that is my update so far. the internet connection at the hosp was awful yesterday so we will see if I can post...
Heather

Forum Leader - Living Organ Donation
EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

DONATE LIFE
Heather
Forum Leader
Username: Heather

Post Number: 2858
Registered: 05-2003
Posted on Wednesday, April 21, 2010 - 01:41 pm:   Edit Post Delete Post Print Post

Met a woman and her family when we were here for dad's surgery yesterday..her husband was getting a tx and his son was donating a kidney to him. I ran into the son and his mom today..he looks TERRIFIC for having donated yesterday!! His name is Ken and I hope he visits here. I gave them the website. Update later.
Heather

Forum Leader - Living Organ Donation
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: 4380
Registered: 07-2007
Posted on Thursday, April 22, 2010 - 12:19 am:   Edit Post Delete Post Print Post

Heather:

Praise God!! I am so glad to hear that your Dad is doing well! I know you were nervous about his surgery and now you can relax a little knowing that he is doing wonderfully.

I know those waiting rooms are brutal. I remember when my Dad had open heart surgery and we waited and waited and waited. No couches just ugly, uncomfortable chairs. I feel sorry for all the people that waited for me during my transplant. I don't even know what the waiting room looked like.

I hope you have gotten some good sleep by now and that your back is feeling better. Heating pads are great for backaches. I made Jerry buy me one when I was in the hospital after transplant. Those beds were so uncomfortable and for some reason my back hurt really bad for at least a month post transplant. I think I used the heating pad every night and during the day.

Please continue to keep us up to date on your Dad's recovery. I am just so happy to know that he is doing so well!!

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: 2859
Registered: 05-2003
Posted on Thursday, April 22, 2010 - 01:16 am:   Edit Post Delete Post Print Post

Dad is doing great. Sitting up joking and talking and grabbing the pillow when we made him laugh. He was up for 4 hours at lunch. Then went back to bed and napped I guess. He just looked so good today...will be nice when all those lines and IVS and tubes are out..drain tube in chest....and in his own room and not the ICU.

Karen...if you only knew how many heating pads I have gone through. I use one frequently and actually packed mine up and was using it last night while on the computer in the hotel room.

I am now staying with my grandma til tomorrow evening when mom comes home for the night. I will be going back on Sat. and spend the day with dad.'

very tired and going to bed.
Heather

Forum Leader - Living Organ Donation
EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

DONATE LIFE
Heather
Forum Leader
Username: Heather

Post Number: 2860
Registered: 05-2003
Posted on Thursday, April 22, 2010 - 12:44 pm:   Edit Post Delete Post Print Post

More big news here. I assume my dad is doing good and had a good night. Have not heard anything since mom can not call me from ICU. Will hear from her later on.

Yesterday mom and I had gone down to the deli in the hosp in Indy for some lunch. Earlier I had thought to myself..about my best friend who is on bedrest in the hosp. and pregnant at 31 weeks...ok..I need to call her and tell her she is free to have Elizabeth on Fri or Sun but not Wed, Thurs. or Sat ..haha. SO I called her about an hour later ..and she said um..hey..I am having my baby in 40 min. I about flipped. I so wanted to be there when this happened. The baby was at risk because it was getting interrupted blood flow for some reason so they decided it was better to take her now. So she is here now. But in Champaign. So I left Indy at 3 our time..drove straight through to Champaign, IL..to see my friend, stayed about an hour and had to come home to stay with my grandma overnight and all day today til my mom comes home tonight. The rules are very strict in the NICU this year. She can only choose 2 people to be allowed in the NICU the entire time the baby is there and it must be the same 2 people the entire time. These 2 people must have had the H1N1 shot. I have not and do not want to get it. so I won't be able to see the baby til she is out. But I can go see my friend and see pics. I am so happy for her. SHe was only 2.12 pounds and 15 inches long. They say her lungs were developed because they had been giving her steroids or something the past few weeks to help the development along in case she did deliver early...so that is good. Her color is good and she was kicking and crying the minute she was taken out. I guess the doc .had to get a step stool during the procedure (c section) because she kept going back in when they were trying to pull her out..too funny. She did not want to come into this cold bright world I guess.
Heather

Forum Leader - Living Organ Donation
EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

DONATE LIFE
Heather
Forum Leader
Username: Heather

Post Number: 2863
Registered: 05-2003
Posted on Sunday, April 25, 2010 - 10:26 pm:   Edit Post Delete Post Print Post

Lots happening this last week. Big ups and downs with my dad. I am exhausted so I will post later. He is still in the hosp. and wants out by Tues but I would be very surprised if that happened.
Heather

Forum Leader - Living Organ Donation
EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

DONATE LIFE
DAP1122
Forum Leader
Username: Dap1122

Post Number: 1705
Registered: 05-2008
Posted on Sunday, April 25, 2010 - 10:40 pm:   Edit Post Delete Post Print Post

Keeping you in our thoughts and prayers, Heather.

Get some much needed rest and post when you feel up to it.
New blog/web page - http://My2ndHeartBeat.wordpress.com
DAP1122@Gmail.com
Heart Tx - 5/11/2007
DAP
Ohio, USA

Link to the Transplant Buddies Calendar - http://www.my.calendars.net/2ndHeartBeat
Karen R.
Forum Leader
Username: Relivkaren

Post Number: 4401
Registered: 07-2007
Posted on Monday, April 26, 2010 - 12:55 am:   Edit Post Delete Post Print Post

Heather:

Goodness! You certainly are having a lot going on these days.

Congratulations to your friend having her baby! That is exciting! I am glad to hear the baby is doing well. 31 weeks is early, but very viable. She will have to stay in the NICU for awhile, but she is breathing on her own and will do just fine! :-)

I hope your Dad is doing even better today. I know that being in the hospital stinks, but it's better to stay until he is really ready to go home rather than rush it. I am sure he won't like to hear that!! :-)

Get some rest!! Keep us up to date!

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: 2880
Registered: 05-2003
Posted on Sunday, May 02, 2010 - 05:10 pm:   Edit Post Delete Post Print Post

Well, Mon. Apr. 20 I am at mom and dads early to stay with my grandma. They are off to Indy for preop labs and tests and Dr. appts. Tues. morning at 3 30 am we are off to Indy. While we were in the waiting room, I met a woman whose husband was getting a kidney from their son..the same time my dad was having his heart surgery. Dad went in around 7 our time...and was out at 11. The surgery went fine. The doctor had come out and talked to us before he went in..and after. He brought us a piece of the tubing they used in the Apico Aortic Conduit surgery..or the Aortic valve bypass. Even brought a left over peice with dad's blood on it..in a specimen cup...knowing dad would think that was neat to have..

He went to CICU and had some ups and downs in there...but most went well. He was so alert and up on the day after surgery. He had no appetite though. On Thurs. night mom got a call from him that he was not putting out enough urine and his creatnine was high and some other things...and he thought his kidney was shutting down..so mom went back over. I am staying with grandma again at this time. I had stayed Tues night with mom in Indy and all day Wed. So anyway...he had trouble urinating after the cath was taken out..it was not that his kidney was not working..his bladder had not woke up yet or whatever..that finally happened and he was relieved. Then his O2 level dropped to 83..which I guess is dangerously low and one can have a stroke at that low...did that more than once so he was on oxygen for a few days. . They took the chest tube out on Mon. and part of his lung collapsed... but that was better the next day also. I tell ya..it was one thing after another it seemed. He also was hallucinating and seeing faces in pictures and balloons outside..etc....that was scary. So anyway....after a week..he got to come home. I went over with my mom to get him. By now he was just beginning to get an appetite. He came home and had a visit from the Carle health nurse at home on Fri. She took his BP numerous times and found that when he stood up his bp dropped VERY low..like 70/50 or so...so he still has to use his walker til that is over with. SHe said it is normal for a few weeks after this type of surgery. I am so glad he is home and doing better. Not sure what his creatinine was when he got out. One good thing is he never had to be put on a heart lung machine during surgery. They only needed enough time for 2 heartbeats to do whatever it was that would have required the machine..if it had been longer...to attach the valve I am assuming.

So on Wed..the day after dad's surgery I was in the cafeteria eating with mom and called my best friend who was pregnant...and in the hosp. in Champaign on bedrest..and she told me in 40 min. they were taking her in to take the baby...9 weeks early!! OMG...I said oh no....I would be there if I could but you know I can't. I felt so bad. I did go over that night after leaving Indy and drove straight through to see her. I could not see the baby as she was in NICU. Still have not seen my "niece" yet. Just pics. SHe is adorable. Tiny with lots of blonde hair.

So basically that is the story. Dad has to stay away from people for a couple weeks to decrease risk of infection. He will be stronger and feel more ready for going out by then.

Here is a pic we took right before leaving Indy.


Heather

Forum Leader - Living Organ Donation
EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

DONATE LIFE
Heather
Forum Leader
Username: Heather

Post Number: 2881
Registered: 05-2003
Posted on Sunday, May 02, 2010 - 05:12 pm:   Edit Post Delete Post Print Post

Oh jeez/. forgot to tell you I met the living donor to the kidney transplant recipients family we met. I also met the recipient a few days later..on Sat. Nice family and they both looked AWESOME.

I did talk later to the son who told me when I saw him that was his good day..then it kinda went sour..like me, he did not have a good experience in the hosp. I was so sorry to hear that. I did give them this site address so hopefully they are already reading and will post someday.
Heather

Forum Leader - Living Organ Donation
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: 12982
Registered: 05-2003
Posted on Sunday, May 02, 2010 - 07:35 pm:   Edit Post Delete Post Print Post

Hi Heather

This is a beautiful picture of your family. I am happy that this surgery is all behind you. Glad to hear that you met such a nice family. I too hope they join.

I need to make you some transplantbuddies cards to give out.
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05 JMH

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Heather
Forum Leader
Username: Heather

Post Number: 2882
Registered: 05-2003
Posted on Sunday, May 02, 2010 - 08:13 pm:   Edit Post Delete Post Print Post

That would be awesome to have, Rise. I actually thought of trying to make some but didn't have time that week. I did find the young man on FB and gave him my email. This family..who hardly knew us...said if we needed a place to stay if for for any reason we would have to be back at the hosp....their home was open to us. How awesome is that? Very nice people. Mom and the recipients wife swapped phone numbers. It was a neat experience. I need to check on the donor. Have not talked to him for a few days.


Doesn't my dad look GOOD?
Heather

Forum Leader - Living Organ Donation
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: 12985
Registered: 05-2003
Posted on Sunday, May 02, 2010 - 10:45 pm:   Edit Post Delete Post Print Post

Hi Heather

I am sorry I forgot to say how wonderful your Father looks. I thought about that after I posted and I was already off the computer:-) Beautiful picture! You look so pretty too!

Ok I will get to work on the cards.

-----------
What a beautiful family who offered you their home. Amazing people! You of course are very special and that is what they saw in you.

I cannot wait to hear how they are all doing.
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05 JMH

contact
Transplantbuddies@gmail.com

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LadyDi
Forum Leader
Username: Ladydi

Post Number: 2274
Registered: 03-2008
Posted on Tuesday, May 04, 2010 - 10:44 am:   Edit Post Delete Post Print Post

Your father looks really good in the photo! Glad to hear everyone is home. How is he doing now? Your family has sure had a rough couple of weeks.
Kidney Donor to Husband 10/30/07
Forum Leader-Living Organ Donation
Barnes Jewish Hospital St. Louis, Mo
My donation story:
http://www.transplantbuddies.org/tbx/messages/28633/34433.html?1256168874

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

Post Number: 2888
Registered: 05-2003
Posted on Tuesday, May 04, 2010 - 11:12 am:   Edit Post Delete Post Print Post

When I went to the neurologist Apr. 2, he sent me back to the rheumatologist. I got an appt. for June 2. Got a call yesterday that someone had cancelled so I got today instead. I don't know what I am expecting out of this visit really. Just him to go over the labs and stuff and see where we go from there. I need to call my general phys. and set up an appt to talk about my cholesterol still. I do not want to go on a drug for that. I don't know why it is high. It does not run in my family that we know of.

My dad is doing well. Getting cabin fever bad. He has to stay away from people..other than me and Danny and mom and grandma basically...to decrease risk of infection or colds and such. I think he has some appt. this week or next and will see how things go. He will probably be going for Cardiac rehab after 4 weeks they said. but he is doing good other than still being tired, but that is a HUGE surgery and it takes time to bounce back...as we all know who have had any major surgery. Sure took me awhile.
Heather

Forum Leader - Living Organ Donation
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: 2890
Registered: 05-2003
Posted on Tuesday, May 04, 2010 - 09:14 pm:   Edit Post Delete Post Print Post

Went to the doc. and am no more wise than when I went in. Waste of my time and money. He just looked at the labs and asked me a bunch of questions and then said well everything looks good as far as the Lupus, Sjogrens, and the other connective tissue or autoimmune disorders...when he asked if I had a rash..I said I get bumps on my neck and face and they itch and then hurt and will go away and then come back..so he is sending me to a dermatologist in the morning. He will most likely biopsy one..with a needle I HOPE. And also the rheumatologist ordered repeats on a few labs and I asked if he wanted to see me again for the results and he said no they will send them in the mail and I quit this clinic..I resigned so I won't be here after June. Great. Guess that tells me I will most likely go to Indy if I have to return to one. In the meantime, I go to the dermatologist in the morning, my regular doc about my cholesterol June 8 and need to make an appt. with my gyn for perhaps further hormone tests to see if I may have an imbalance or something is out of range. so that is the scoop for now.
Heather

Forum Leader - Living Organ Donation
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: 4418
Registered: 07-2007
Posted on Tuesday, May 04, 2010 - 10:54 pm:   Edit Post Delete Post Print Post

Heather:

Your Dad looks great! I am so glad that he is home and doing well.

How awesome that you got to meet donor, recipient, and family of the kidney transplant. I am sure that you had so much in common and had a lot to talk about. I hope they join Transplant Buddies!

I am so sorry to hear that you are still getting nowhere with what is wrong with you. That has to be so frustrating. So did they rule all autoimmune disease or just the ones you named? Maybe the dermatologist can shed some light on what's going on. The hormone connection is interesting too. Keep us posted.

I pray that your Dad continues to recover well and gets back to his old self in no time!

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: 2892
Registered: 05-2003
Posted on Thursday, May 06, 2010 - 11:56 am:   Edit Post Delete Post Print Post

I went to my appt. with the dermatologist yesterday morning. He says I have acne rosacea and gave me some stuff for it. Then he looked at my back and found a mole he did not like at all and set me up for next Wed. to have it removed. Not looking forward to that. I think he is going to cut it out..not freeze it.
Heather

Forum Leader - Living Organ Donation
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: 2898
Registered: 05-2003
Posted on Friday, May 14, 2010 - 08:59 pm:   Edit Post Delete Post Print Post

Does it ever just rain? or does it always pour?

The burning on my left side of face and now my entire face is getting worse..I cannot be in warm environments..that means outside in the sun or even out of the sun if it is warm out..I do not have air conditioning so I sure hope someone figures out what is going on with me before the real heat hits. It got up to 80 the other day and I was miserable..to say the least. I went to the doctor today to see about getting into some docs in Indy. I have 2 appts. one on the 24th with another Rheumatologist and one in JULY with a neurologist. However..I have a connection over there and may change the neurologist to another so my doc friend can get me in sooner..plus she says he is an excellent neurologist. So I will look into that on Mon.

I had the mole cut out on Wed. Felt real good til about 5 pm that night..OUCH...it is right in the middle between my shoulder blades..not exactly great for sitting or for sleeping on ones back..which I do. but I made it ..now it just itches and the waterproof stuff on top bothers me a little.


I sure will be glad to get some answers to my problems. I am just not much into getting online right now...just am not feeling like it. Kinda discouraged and depressed about everything I guess. I wish I knew what it was I was fighting...and how to fight it.

I know my God is in control and knows everything I am going through and it is for a reason..I sure don't know what it is yet...and that He is with me through it but it sure is tough, even with my faith in the Lord. I wish I could be upbeat and full of joy and encouraging words for others right now but I just don't have it in me right now.
Heather

Forum Leader - Living Organ Donation
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: 4464
Registered: 07-2007
Posted on Saturday, May 15, 2010 - 01:30 am:   Edit Post Delete Post Print Post

Heather:

I am so frustrated with you! You have been dealing with this for such a long time. I really hope that these new doctors can help find answers to your mystery illness.

I can totally understand how frustrated and tired you are. You know we are all here for you and I am praying for you everyday. You just take care of yourself and rest.

Just trust in God and let Him carry you through this. He will never let you go through this alone.

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: 2899
Registered: 05-2003
Posted on Saturday, May 15, 2010 - 12:42 pm:   Edit Post Delete Post Print Post

I know, Karen. Thank you for your encouraging words.
Heather

Forum Leader - Living Organ Donation
EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

DONATE LIFE
LadyDi
Forum Leader
Username: Ladydi

Post Number: 2307
Registered: 03-2008
Posted on Sunday, May 16, 2010 - 07:35 pm:   Edit Post Delete Post Print Post

I am so sorry you are having problems, Heather! I sure hope you can get the experts in Indy involved. Hopefully they can find out what is going on and get it fixed for you.
I think you are right - there is always a reason and a plan for something to happen. We just never know what it is til we get there.
Hoping tomorrow will be a better day for you.
Kidney Donor to Husband 10/30/07
Forum Leader-Living Organ Donation
Barnes Jewish Hospital St. Louis, Mo
My donation story:
http://www.transplantbuddies.org/tbx/messages/28633/34433.html?1256168874

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

Post Number: 13140
Registered: 05-2003
Posted on Sunday, May 16, 2010 - 08:41 pm:   Edit Post Delete Post Print Post

Hi Heather,

I am bummed to hear you are so frustrated about not knowing what is up with your health. Have you been to an endocrinologist?

I have read that some food allergies can cause rashes and burning on the face.

I will be thinking and praying for you. Take time away from the computer if you think that will help.

luv and hugs
Rise'
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05 JMH

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Heather
Forum Leader
Username: Heather

Post Number: 2901
Registered: 05-2003
Posted on Sunday, May 16, 2010 - 11:04 pm:   Edit Post Delete Post Print Post

Well my hubby went out and bought 2 new efficient air conditioners for our home. We put one in the bedroom and one in the living area. These will keep it cool when it is very warm. We also have a small one we can put in the other bedroom if we need to. Today was not a bad day. My face is feeling hot now, at 8 pm ..hope it stops so I can sleep in a few hours.

thank you for the thoughts and prayers.
Heather

Forum Leader - Living Organ Donation
EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

DONATE LIFE
Heather
Forum Leader
Username: Heather

Post Number: 2902
Registered: 05-2003
Posted on Tuesday, May 18, 2010 - 02:57 pm:   Edit Post Delete Post Print Post

Yesterday was not bad til evening. my face began burning around 5 pm and was still burning although not as hot...when I went to bed. I did not sleep well. I am struggling today with the burning already and it is not noon yet.

I did get an appt. with a different neurologist on June 10. That is better than July 2...by far. I would rather go to a woman but at this point..it does not matter. The first was a woman and I must cancel that one.
Heather

Forum Leader - Living Organ Donation
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: 13158
Registered: 05-2003
Posted on Tuesday, May 18, 2010 - 03:07 pm:   Edit Post Delete Post Print Post

Hi Heather

Has any of your doctors mentioned the posibility of menopause?

Just trying to help
http://dermatology.about.com/od/facialflushing/a/ffmenopause.htm

I typed in burning of the face and menopause and found this article.

Today is cost so much money to see one doctor and if your symptoms involve another area, you need to go to another doctor just for a script when the previous doctor could have helped. It is a different world in medicine today. Everything is very specialized. This is why I do my own research and take what I find to the doctor I feel is best suited for me.
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05 JMH

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Heather
Forum Leader
Username: Heather

Post Number: 2903
Registered: 05-2003
Posted on Wednesday, May 19, 2010 - 01:55 am:   Edit Post Delete Post Print Post

Hi Risa. They did check my hormone levels..they are ok I guess. He did draw for my Thryroid again the other day though. Mine is not flushing..it is outright burning..feeling sometimes like someone is holding an iron next to my face. And it can last hours..not just a few minutes. I do appreciate the help though. I am glad I have good insurance and only pay the co pays to go to all these docs. They add up though....I have researched the burning on one side of the body and do not come up with much.

An endocrinologist may be next if no one knows what to do.

My mole...was melanoma. Not a good report. He is pretty sure he got it all but wants me to come back next week and have more cut out.
Heather

Forum Leader - Living Organ Donation
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: 13162
Registered: 05-2003
Posted on Wednesday, May 19, 2010 - 11:20 am:   Edit Post Delete Post Print Post

Hi Heather,

Sorry you are going through all of this right now. On the bright side it was a good thing you had your mole removed. Sounds like he knows what he is doing by checking. If it was an emergency, he would say come right in. You are one blessed lady to have yourself checked out.

You will eventually find out what is causing this burning.

Keep your head up high:-)
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05 JMH

Join our Social Network
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Heather
Forum Leader
Username: Heather

Post Number: 2907
Registered: 05-2003
Posted on Sunday, May 23, 2010 - 06:46 pm:   Edit Post Delete Post Print Post

I have my appt. with a new Rheumatologist tomorrow afternoon in Indy.
Heather

Forum Leader - Living Organ Donation
EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

DONATE LIFE
Heather
Forum Leader
Username: Heather

Post Number: 2908
Registered: 05-2003
Posted on Monday, May 24, 2010 - 11:17 am:   Edit Post Delete Post Print Post

ugh..what a hot miserable day yesterday. And today...is gonna be worse I guess. 90's and high humidity and sun. Glad we got our new AC units in.
Heather

Forum Leader - Living Organ Donation
EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

DONATE LIFE
Heather
Forum Leader
Username: Heather

Post Number: 2909
Registered: 05-2003
Posted on Monday, May 24, 2010 - 09:57 pm:   Edit Post Delete Post Print Post

no real answers or anything at the doc today. But he is glad I am going to be seeing the neurologist I am seeing on June 10. He said he is excellent and knows his stuff..and they will work together to figure out what is going on with me. In the meantime, he just increased one of my meds to see if that helps with the burning. I see him again in 4 weeks. Worth the drive to Indy if they can figure me out.

Another HOT humid muggy day. I don't think it would bother me so much if I did not have this present problem..but this makes it worse for sure.
Heather

Forum Leader - Living Organ Donation
EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

DONATE LIFE
Heather
Forum Leader
Username: Heather

Post Number: 2910
Registered: 05-2003
Posted on Tuesday, May 25, 2010 - 03:54 pm:   Edit Post Delete Post Print Post

Well the doc yesterday had ordered a chest xray so I go for that in the morning and from there I go to have more of the area around my mole removed. Not looking forward to that. That and a full body check of any other suspicious moles. I googled Melanoma and did not like what I read. Sometimes I hate researching stuff. Just makes me more nervous.
Heather

Forum Leader - Living Organ Donation
EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

DONATE LIFE
Heather
Forum Leader
Username: Heather

Post Number: 2912
Registered: 05-2003
Posted on Wednesday, May 26, 2010 - 03:51 pm:   Edit Post Delete Post Print Post

Got the second surgery with the mole over with..last time I had 8 hours to enjoy no pain..now..2 hours after I am feeling it already. ugh. He showed me the chunk he removed..I about died. It was huge. I guess better safe than sorry. He checked me out and found another one on my stomach area he did not like and said that should come off as it had the irregular borders and stuff..it is small so hoping it wont be as bad. As far as my hair loss ..he grabbed a chunk and yanked on it..I said hey I can't afford to lose anymore..he said he thought it was from stress and is temporary. I hope he is right. I have lost a lot. The diet I was on last year probably had some to do with it, but then I have had lots of other stress..including my health problems that are very distressing..and my dad's surgery, my best friends pregnancy and losing one of them,...but the most stressful to me and still is..is my health...and not knowing what is wrong.
So I have to go back in 2 weeks to get the stitches out of my back then schedule to have the other mole removed.
Got my chest xray that the rheumatologist ordered..have no idea why he ordered it though.
Heather

Forum Leader - Living Organ Donation
EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

DONATE LIFE
Heather
Forum Leader
Username: Heather

Post Number: 2914
Registered: 05-2003
Posted on Thursday, May 27, 2010 - 01:10 am:   Edit Post Delete Post Print Post

ok..so I don't recall the last excision 2 weeks ago hurting THIS much. Every time I move either of my arms..it pulls and hurts so darn bad. WAAAA. Will be better in a few days. No pain meds. Just Tylenol..why? I don't have any idea. I could sure use one of my husbands Percosets...
Heather

Forum Leader - Living Organ Donation
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: 13257
Registered: 05-2003
Posted on Thursday, May 27, 2010 - 04:06 pm:   Edit Post Delete Post Print Post

Oh NO! Heather I must have missed seeing your blog. I am sorry you are still battling the unknown. when something is wrong with one area it is very difficult to pinpoint the causes. I will pray you find the right doctor to make an accurate diagnosis.

When I am upset, I notice hair loss.

Be well
Rise'
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05 JMH

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Hostess Rise'
Board Administrator
Username: Rise

Post Number: 13258
Registered: 05-2003
Posted on Thursday, May 27, 2010 - 04:13 pm:   Edit Post Delete Post Print Post

Oh NO! Heather I must have missed seeing your blog. I am sorry you are still battling the unknown. when something is wrong with one area it is very difficult to pinpoint the causes. I will pray you find the right doctor to make an accurate diagnosis.

When I stress, I notice hair loss too.. I saw the hair pulling test being performed on my favorite Dr. OZ show a few months ago.



Be well
Rise'
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05 JMH

Join our Social Network
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Heather
Forum Leader
Username: Heather

Post Number: 2917
Registered: 05-2003
Posted on Thursday, May 27, 2010 - 09:17 pm:   Edit Post Delete Post Print Post

Yeah, I am still battling the unknown, Rise'. Since Dec. actually. My hair loss is significant....scarey really. But as Trish said to me..our hair does not define who we are!! True....BUT I WANT IT BACK!!

It is a little cooler out this evening. I was able to sit out on the porch for awhile without my face burning and getting red. Maybe I can turn off the air and open some windows tonight. I hate having the air on..in the house or the car.

Looks like another hot week ahead though. Danny is off on a vacation week but we are not going anywhere. Just hanging around the homestead...

I posted a few new pics on my other blog.
Heather

Forum Leader - Living Organ Donation
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: 2318
Registered: 03-2008
Posted on Thursday, May 27, 2010 - 10:46 pm:   Edit Post Delete Post Print Post

Heather, I am so sorry I haven't seen your posts! I haven't been on here much this week - work has just been overwhelming me. Sorry to hear you have yet another medical issue with the moles. Glad they at least got it all out.
I know what you mean about the chunk. A number of years ago I had a spot on my shoulder. While it wasn't cancer, the dermatologist said if we just left it there it could very well turn into cancer. Good grief! It was such a little spot, and I ended up with 5 stitches by the time she was done!
Glad to hear the doctors in Indy are going to be working together on your health issues. Hopefully that will put your mind at ease on some of this.
Enjoy the long weekend and the time with Danny. Keep us posted as to what is happening.
Kidney Donor to Husband 10/30/07
Forum Leader-Living Organ Donation
Barnes Jewish Hospital St. Louis, Mo
My donation story:
http://www.transplantbuddies.org/tbx/messages/28633/34433.html?1256168874

I walk slowly, but I never walk backward - Abraham Lincoln
Karen R.
Forum Leader
Username: Relivkaren

Post Number: 4509
Registered: 07-2007
Posted on Saturday, May 29, 2010 - 02:02 am:   Edit Post Delete Post Print Post

Heather:

I have been keeping up with you. I just got behind in posting.

I am so sorry to hear that they dug out a mole. OUCH!! My mom has had that done several times and it's like they were digging to China or something. I don't know why they didn't at least give you some Tylenol 3. I hope you feel better soon.

The hair thing baffles me. I lost a lot of hair right after transplant. I assume it was the meds, but it could have been stress too. Maybe yours is due to all the stress in your life like you mentioned. I don't know of any specific illness that causes hair loss.

I am sure that you are just so frustrated right now. Summer is not a fun time to be dealing with mystery illnesses. I remember sitting in the house just wishing I could go outside and enjoy the weather like all my neighbors. Summer was the hardest for me when I was sick.

I keep praying for you. I know you will figure this all out at some point. Just know that you are in my thoughts and 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: 2922
Registered: 05-2003
Posted on Saturday, May 29, 2010 - 01:54 pm:   Edit Post Delete Post Print Post

Thank you so much for the prayers Karen. That is the most anyone can do for someone.

The hair loss baffles me to and is a cause of stress..go figure. If it is stress I am hoping when they get me figured out it will stop. I don't feel too stressed right now but your body knows even if you act like you're not..you know what I mean. The mole thing..yeah..at least to China. He showed me the peice and I could not believe how big the second piece was. yikes. It hurt like heck for 2 days then the 3rd day it felt pretty good. Today I have little shooting pains in it once in a while. Hope it is healing ok. will change the bandage tonight or tomorrow.

Yes summer is not a fun time to have an intolerance to heat. Especially when you have a husband who does not like to turn the air on unless it is absolutley sweltering. So far he has been good about it. I go as long as I can stand it then turn it on...we will see when we get out power bill how efficient they are..haha.

Hair loss can be caused by thyroid problems which mine is fine I guess..and also some autoimmune diseases..such as Lupus. But that came back neg..even though the new Rheumatologist kept mentioning it anyway...so we will see what happens.

I have not had the severe burning in several days..since I was in the doctors office as a matter of fact. It was horribly hot in there..to me. He increased some meds I was on so maybe that helped or maybe the Lord is healing me? I will take the latter.
Heather

Forum Leader - Living Organ Donation
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: 13288
Registered: 05-2003
Posted on Saturday, May 29, 2010 - 11:12 pm:   Edit Post Delete Post Print Post

Hi Heather,

I hope you continue to feel better each day:-)

Waiting to hear some good news from you. I certainly hope you are eating your green veggies.
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05 JMH

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Heather
Forum Leader
Username: Heather

Post Number: 2924
Registered: 05-2003
Posted on Sunday, May 30, 2010 - 12:24 pm:   Edit Post Delete Post Print Post

I am eating normal...have been for months now...except when I am very upset and can't eat..which even then I force something down. That happens once in a while.

Thank you Rise. I had the burning again last night..as soon as I went to bed..on my face. Man I had it like Antarctica in the bedroom and I could still feel it..with the AC and a fan directly on me. I did not sleep well at all. Hoping it does not bother me in church..will have to go in the back and turn on my little mister fan..haha..no kidding though.
Heather

Forum Leader - Living Organ Donation
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: 13292
Registered: 05-2003
Posted on Sunday, May 30, 2010 - 12:40 pm:   Edit Post Delete Post Print Post

Hi Heather

I am sure you were tested for this but just in case, were you tested for Anemia? If you had a number of blood tests, I am sure you were tested.
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05 JMH

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Billy
Member
Username: Billybob

Post Number: 5
Registered: 04-2010
Posted on Sunday, May 30, 2010 - 12:48 pm:   Edit Post Delete Post Print Post

I am trying to exercise but with such shortness of breath and the predisone & methotrexate, my hunger is overwelming. I have gained 38 lbs. in two years. I have hypersensitivity pneumonitis. Any helpful ideas on loosing weight. BillyBob
Heather
Forum Leader
Username: Heather

Post Number: 2925
Registered: 05-2003
Posted on Sunday, May 30, 2010 - 07:02 pm:   Edit Post Delete Post Print Post

Hi Billy. I would not advise how I lost weight. If I were you I would talk to Ciscokidney..he has a health and fitness blog on here and is really into that..so is Rise'. I am not a recipient but a donor so how you would go about losing weight may differ from others....good luck though. I know when my husband was on prednisone for his colitis..he gained a lot of weight and could not eat enough...it was awful.


Rise' yes they checked my iron if that is what you mean. It was ok. My thyroid checked out ok also. I had TONS of blood work. I will see what the neurologist says on the 10th.

On another note. My mom came over to change the bandage on my back today and said it looks good. So that is good. Now the itching will begin.....
Heather

Forum Leader - Living Organ Donation
EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

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Diane
Forum Leader
Username: Mary_diane

Post Number: 541
Registered: 02-2009
Posted on Tuesday, June 01, 2010 - 12:48 pm:   Edit Post Delete Post Print Post

Hi Heather,

I have been following your posts, and am so sorry that you are struggling with unknown challenges. It is hard enough when you are not feeling well, but when you have a variety of symptoms that don't seem to be linked and no one knows what it is, it can be quite unsettling.

Has anyone ever discussed Fibromyalgia with you? It is often diagnosed by a rheumatologist. I have quite a bit of information about it (as I also have it....and personally for me it gives me a rougher ride than my liver transplant)

It often starts (but not always) following trauma especially to the spine, face and neck. The hallmark symtoms are pain, diffuse muscle aches and pain, overwhelming fatigue, and poor sleep. But there are a myriad of other possible symptoms and not everyone has all of them. Some people do experience hair loss.

Basically what happens is that after a triggering event there are neurochemical changes in the brain that begin to create some of these other symptoms.

I won't write any more about it just now, but let me know if you think it might fit your symptoms, and you will then have something to discuss with your Dr. Some Dr's still do not believe it even exists, but it is very real, and the researchers can demonstrate changes in the brains of people who have fibromyalgia.

Best of wishes and I hope you are feeling a whole lot better.

Diane
Diane
Liver Transplant Nov 20, 2008
Vancouver General, BC

“Sometimes our light goes out but is blown again into flame by an encounter with another human being. Each of us owes the deepest thanks to those who have rekindled this inner light.”

Albert Schweitzer
Heather
Forum Leader
Username: Heather

Post Number: 2930
Registered: 05-2003
Posted on Tuesday, June 01, 2010 - 03:48 pm:   Edit Post Delete Post Print Post

Hi Diane. The rheumatologist I first saw did not think at all that my symptoms fit that. I do not have muscle aches really. I had a co worker who had it and she could hardly move some days and had to go home and go back to bed she hurt so bad. I have fatigue but I think that is from 2 things..not exercising and one of my meds...it makes me tired. But not extreme fatigue.
The second rheumatologist did not mention anything really other than Lupus which runs in our family on my dad's side and his generation only. But my Lupus panel came back neg. The burning just really seems nerve related to me..but I am not an expert. I assume they will be doing a Nerve conduction test or something like that. not pleasant I hear.
Thank you for your concern and your help. You can tell me all you want about it. I am so sorry it causes you so much pain and even more problems than your liver tx. Take care!
Heather

Forum Leader - Living Organ Donation
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: 2327
Registered: 03-2008
Posted on Wednesday, June 02, 2010 - 09:47 pm:   Edit Post Delete Post Print Post

How are you doing today Heather? Hope this hot and humid weather hasn't been too hard on you.
The face thing reminds me of a co worker's daughter. She was about 12 and had a regular cold type virus that for some reason settled in a nerve in her face. Very painful and uncomfortable, and, like you, they were trying about everything under the sun to figure it out. She was fortunate in that it eventually went away before they ever came to a conclusion.
Glad you are seeing the new neurologist and hope they can figure out what is going on for you.
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: 2939
Registered: 05-2003
Posted on Thursday, June 03, 2010 - 12:46 am:   Edit Post Delete Post Print Post

Well now that is weird, Diane. Never heard of that happening. Glad it went away for her. Yes the hot humid weather is having an effect on me. It makes it worse. Today was not too bad. It was only 80 here. Next week is supposed to be in the 70s..hope for once they are right.
Heather

Forum Leader - Living Organ Donation
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: 2948
Registered: 05-2003
Posted on Thursday, June 10, 2010 - 09:57 pm:   Edit Post Delete Post Print Post

Went to the neurologist appt. today in Indy. Still no answers. He had the same look on his face as all the other doctors and I told him so. He ordered some repeat labs..the ANA, thyroid..for the third time..and some other stuff...He seems to be leaning toward Lupus even though the Lupus panel came back negative. He also ordered an MRI of my cervical spine to look at the nerves there. An EMG test and another test..can't recall..something response test...I think that one is not fun. SO they schedule it all in one day which I asked..but get this...have to be there for the MRI at 630 my time..ugh..then for the 15 minute test..not till 11 am..then the Evoke Response test..at 3..are they kidding me? I would rather drive over 2 different days than do that. I am going to call and reschedule them all. That is to me, ridiculous. But I guess that is what I asked for. I just can't do that unless they give me a bed to sleep in or something. That won't happen. So still no answers to anything. He did the neurological exam he does on new patients and I did just fine.
Heather

Forum Leader - Living Organ Donation
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: 2949
Registered: 05-2003
Posted on Friday, June 11, 2010 - 07:08 pm:   Edit Post Delete Post Print Post

doing the MRI and the EMG on Mon. June 14. Since it is not an emergency..I rescheduled the Evoke Response test for June 25. I hear one of those is not pleasant to go through. Life stinks once in a while. I hope I do not have Lupus. That would not be too good after giving up one of my kidneys...but it is what it is and I am praying they will find the cause of my problems and it will not be serious. Melanoma is quite enough for now.
Heather

Forum Leader - Living Organ Donation
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: 2345
Registered: 03-2008
Posted on Sunday, June 13, 2010 - 02:19 pm:   Edit Post Delete Post Print Post

Oh my! What a mess! Bad enough going through the tests, but then you have to sort it all out! I am so sorry Heather!
I sure hope they find out what is going on. I pray that it is not Lupus, and hope it is something minor that will be easy to remedy.
Are you getting a lot of rain over there? It stormed here yesterday afternoon. I had clothes on the line and must have looked a sight trying to yank everything off in the rain! Of course I was also just starting to work on weeds, so my bushel basket, little roller chair , gloves and even the laundry basket were left out in the rain - no time to grab them!
Take care Heather, and hope you are having a good day.
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: 2950
Registered: 05-2003
Posted on Sunday, June 13, 2010 - 03:35 pm:   Edit Post Delete Post Print Post

Thanks, Diane. I am doing o.k. I pray it is not Lupus also. ..or any other disease. I just hate getting the "look" from the docs I am so accustomed to by now..the ...well I don't know what to tell you" look....your symptoms just don't fit this or that..but at least they are still running tests. I am interested in seeing what my next ANA test is. My last one was very high..thus the lean towards autoimmune disease as diagnosis. The neurologist said that Lupus can cause neuropathy..and he kept saying..and as you know with your dad who has it (no symptoms post tx)...but I was not living near my parents when his Lupus was really acting out so to speak..and he never had nerve problems and stuff..and truthfully other than the organ failure and all that goes with that..I don't know what other symptoms he had. He never knew he had any problems..til he went to the eye doctor and they saw something when they looked into his eye (you can tell a lot by looking into the eye I guess)..and they told him to see a rheumatologist asap. That is how he found out. anyhoo.......we will see. Tomorrow is the get up at 4 am and take a shower and throw on some comfy pants and head out for Indy for my tests. May as well be comfy if I have to sit and wait that long between tests.

Yes we have had rain here. Poured yesterday and the day before..stormed yesterday too. I have not yet been caught with clothes on the line but have come close a few times..I have found my umbrella across the patio..and thought..gosh good thing that thing did not go through a window when it was blown out of the stand...
sorry about the laundry basket..at least they got rinsed really really good.
I am noticing ants now..in my house all of the sudden. Happens every year. I have the little ones right now. I tell ya..the ear wig things with the pinchers on the butt end..are terrible outside this year. I hate them and just might have someone spray here..they are gross and they are just everywhere. Do you have them there? I have not done much gardening this year at all. My beds are so full there are not many weeds this year which is good. I am trying little by little...to get rid of one bed altogether. I love Phlox and that is where it is..so I will move that and get rid of other stuff. I love flowers and working in the garden but my back just won't let me do much anymore..and now with my other problems..the heat is an issue. And we have surely had that already this year. Where did the spring weather go?
Heather

Forum Leader - Living Organ Donation
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: 2955
Registered: 05-2003
Posted on Wednesday, June 16, 2010 - 06:51 pm:   Edit Post Delete Post Print Post

What an absolutely gorgeous day we are having today. I took advantage of the low humdity and 80 degree temp. I weeded some, cut back some, went and took some pics and then bought some tomato plants..finally..and planted 2 of those. Grilled some stuff on the grill and threw it in the freezer for those nights I don't want to cook..haha...or it is too hot to cook. Sure we will have many more of those days. I have not used my oven ..other than to bake Russian Tea Cakes for the baby shower..in I don't know how long. Over a month. Just too darned hot to use it.

My Beebalm is blooming..I love that flower. Can't wait for my Phlox though. That is my fave. Day lillies are doing really well and all my other flowers are doing good this year so far. Have not watered once this year yet...had enough rain to keep them til Sept. I would think...too bad it doesn't work that way.

OK..rested awhile. Back outside to sit on the patio or grill some burgers or something..anything..I am just enjoying being able to be outside on a sunny day.
Heather

Forum Leader - Living Organ Donation
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: 2960
Registered: 05-2003
Posted on Sunday, June 20, 2010 - 01:41 am:   Edit Post Delete Post Print Post

Has been horribly hot here..and muggy. I can't wait til fall..lol.

Tomorrow is supposed to be hotter yet...and we are cooking out on the grill. Just burgers but will do my potatoes out there also. Mom and dad and grandma will be here for Father's Day. We always have them over for steaks usually on F. Day (at the same time, for Mothers day since my mom spends that with her mom most generally)...but we did the steaks on Memorial day and I am gaining some pounds back and am not happy about it. So I opted for burgers and not Ribeyes. If the guys want them..they can have them...other than that no other big plans.
Heather

Forum Leader - Living Organ Donation
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: 4559
Registered: 07-2007
Posted on Tuesday, June 22, 2010 - 12:47 am:   Edit Post Delete Post Print Post

Heather:

Sorry I haven't posted earlier, but life on vacation and then after vacation is really busy. Phew?!?!?

I am so sorry that it is taking so long to figure out what is going on in your body. Take it from one that is plagued by autoimmune diseases. It is not always black and white and autoimmunity totally baffles most doctors. There are no definitive tests for some of the diseases, so they have to make diagnosis on clinical symptoms. For some docs that is very hard. They rely on testing so much to give them answers. Lupus can be hard to diagnose. There is a criteria, but not everyone fits it. It took years for some of my autoimmune diseases to be diagnosed and no one is certain that my lung disease was not a manifestation of an autoimmune disease. It's just nuts.

Unfortunately, there is no magic bullet that can cure or help these diseases. They just usually treat the symptoms and sometimes they will give you immunosuppressants to calm down the immune system. That is why your Dad is not having any Lupus symptoms right now because all the transplant drugs suppress his immune system and help the Lupus symptoms. I am doing great autoimmune wise and transplant wise due to the drugs.

The bad thing for you is that the drugs are toxic to other organs - as you well know. Taking them sometimes is worse than dealing with the disease. Although, there are some new drugs on the market that are similar to Remicade. Maybe something like that would help you, but I sure wouldn't take any of that until they come up with a pretty good idea of what you have. If your ANA is really high, I would guess that there is some autoimmune disease going on. If you Dad has Lupus, there is a good chance that you could have some kind of autoimmune issues. Autoimmunity runs rampant through my family.

I hope that all these new tests that you took will give you some answers. The worst part is not knowing. Once you know, you can deal with it.

I keep praying for you. I hope you are having a good week!

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: 2962
Registered: 05-2003
Posted on Tuesday, June 22, 2010 - 01:59 am:   Edit Post Delete Post Print Post

Thanks Karen. I guess I forgot to post the second ANA results. The neurologist had them repeat that when I was there and it came back 1:160...much lower than the first one at 1:640. Thing is...you could probably pull 10 people off the street and you can bet a couple of them would throw high titers also. Oh well. The Lord knows what is going on even if the docs don't. Right now, increasing one of my meds had helped with the burning. Not that I want to depend on meds but it is nice to be able to go outside when it is hot even if it is for shorter periods than I am used to...The neurologist also said I don't fit any textbook definitions or whatever..of anything but that Lupus can cause types of neuropathy in people. I need to ask my dad what he experienced cause I just don't remember...he never even knew he had anything wrong til he got his eyes checked. THe eye doctor saw something in his eye and sent him asap to a rheumatologist.

The drugs being toxic to the organs is a huge concern for me

Thanks for your continued prayers.
Heather

Forum Leader - Living Organ Donation
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: 2970
Registered: 05-2003
Posted on Thursday, June 24, 2010 - 12:15 pm:   Edit Post Delete Post Print Post

Gosh after the past 2 days of horrible heat and humidity it was wonderful to wake up, turn off the AC and throw open windows..it is so gorgeous and cool this morning. Took a ride to the boardwalk where I take a lot of my pics but nothing was stirring. They must have been sleeping in? Will try again later. It is supposed to be gorgeous all day.

Tomorrow I go to Indy again for the somato something or other test...a sensory test. Not looking forward to it at all. But oh well. My face has been doing ok as far as the burning and redness..til yesterday. I had no INTENSE burning but it was definitely not the same as it has been. My face is a mess. When I wear foundation, it covers some of the red patchiness..but my skin is dry so it accentuates that...when I use moisturizer..any kind..it breaks me out..which I don't need since I supposedly have the acne rosacea and already get red bumps on my face..sometimes all over..if I go without makeup I scare people..lol!! But I have been trying to not care what others think...and I have been going without makeup most of the time. I wear mascara but nothing on my face except for once in a while. I have found Physicians formula liquid foundation does not bother me as much as others..yet it is thick and does not go on real easy..and my dry skin does not help!! ugh.

My best friend took her little 2 month old baby for pics at Sears. Called me and told me to come right over cause she had a cd of all the pics. So I went over ..any excuse to see my little sweetie...and hold her...and whisper to her...I love her..anyway....I went over and looked at the pics..and since she does not come to this site..I can say this...I was not impressed with the pics. There were a few good ones..but honestly...and I am not bragging here..but I think I could have done a better job or at least as good a job...if I had the props...the backgrounds and stuff...I think I am going to see if she wants me to take a few more for her...you know those ones where the feet are sticking out of a blanket.....fingers, etc.

Ok gotta finish my coffee and hit the shower or perhaps go outside and dig up some stuff to make my flower beds smaller? yeah..that is a plan.
Heather

Forum Leader - Living Organ Donation
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: 2972
Registered: 05-2003
Posted on Thursday, June 24, 2010 - 07:35 pm:   Edit Post Delete Post Print Post

So now I am beginning to get nervous about this test tomorrow. I know it hurts..people have told me..no matter what the guy who gives it ...and the doc who ordered it tells me. I don't want to be nervous but can't help it. Also wonder if it tells them nothing about what is going on...then what?
Heather

Forum Leader - Living Organ Donation
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: 13467
Registered: 05-2003
Posted on Thursday, June 24, 2010 - 07:43 pm:   Edit Post Delete Post Print Post

Best of Success for you Heather. I know how the anxiety feels prior to tests.

Please let me know how you are doing.
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05 JMH

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Heather
Forum Leader
Username: Heather

Post Number: 2974
Registered: 05-2003
Posted on Thursday, June 24, 2010 - 11:32 pm:   Edit Post Delete Post Print Post

Thanks, Rise'. I will let you know how the test goes.
Heather

Forum Leader - Living Organ Donation
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: 2976
Registered: 05-2003
Posted on Friday, June 25, 2010 - 09:52 am:   Edit Post Delete Post Print Post

Well I leave in about an hour an a half for Indianapolis. I have this done at Methodist. I don't know when I will find out the results of it. If I don't hear by Wed. I will call. I think this doctor who ordered it is pretty on top of things..so I am hoping his office will be on the ball and call.
Heather

Forum Leader - Living Organ Donation
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Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

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DAP1122
Forum Leader
Username: Dap1122

Post Number: 1816
Registered: 05-2008
Posted on Friday, June 25, 2010 - 10:20 am:   Edit Post Delete Post Print Post

Heather,

I will keep you in my thoughts and prayers. You'll have the strength to get through the test.

God Bless!!
New blog/web page -
My2ndHeartBeat
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Heart Tx - 5/11/2007
DAP
Ohio, USA

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Heather
Forum Leader
Username: Heather

Post Number: 2977
Registered: 05-2003
Posted on Friday, June 25, 2010 - 11:08 am:   Edit Post Delete Post Print Post

Thanks, Don. I know I will get through it. It may be a breeze..who knows? I don't think so..but maybe!!
Heather

Forum Leader - Living Organ Donation
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: 2978
Registered: 05-2003
Posted on Friday, June 25, 2010 - 04:20 pm:   Edit Post Delete Post Print Post

Just got home from Indianapolis. The test was a breeze actually. The EMG done in the doctors office was far worse. Getting all the many electrodes put on me and hooked up took up most of the time. Then cleaning all the paste off me after...I need to hop back in the shower and get it out of my hair now.

It is a a gorgeous day out. Wonder if I can go hunting for something to take a picture of. I wish there were more places to go around here that had interesting things to shoot.
Heather

Forum Leader - Living Organ Donation
EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

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eccoblue
Forum Leader
Username: Eccoblue

Post Number: 1308
Registered: 05-2008
Posted on Friday, June 25, 2010 - 04:57 pm:   Edit Post Delete Post Print Post

Hope you can find some interesting things to shoot. Or maybe you can find some uninteresting things and make them interesting.
What are your favorite subjects? Scenics, animals, flowers, people, action, macro? I'm curious.
Love what you've done so far. You definitely have a talent!


Heart and Liver Tx at Cedars-Sinai on 02/01/2007
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Hostess Rise'
Board Administrator
Username: Rise

Post Number: 13478
Registered: 05-2003
Posted on Friday, June 25, 2010 - 05:43 pm:   Edit Post Delete Post Print Post

Hi Heather

Glad this is all behind you. Please let us know how you are doing.

How about creating a collage of things to photograph. Inspirational words and cut them out and then add them into your photos?
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05 JMH

Sharing Knowledge is an Invaluable Experience

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Heather
Forum Leader
Username: Heather

Post Number: 2979
Registered: 05-2003
Posted on Friday, June 25, 2010 - 06:10 pm:   Edit Post Delete Post Print Post

I post a lot of my photos on FB. It is easier as I don't have to resize..lol. I will resize and post some here.

my favorite subject...hmmm. I don't know. I am not good at action shots so not that..I do like macro and animals. Love photographing my friends baby..haha. who wouldn't? The thing is..my point and shoot took better macros than I can get with my DSLR..that stinks. I need to take a photography class.
Heather

Forum Leader - Living Organ Donation
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: 2348
Registered: 03-2008
Posted on Monday, June 28, 2010 - 06:43 pm:   Edit Post Delete Post Print Post

Hey Heather! - just checking up on you. I have been MIA for a while. I was out of town for business for a few days and just never have caught up either at work or home.
How have you been feeling lately? Any word on your tests? You sound very relieved that at least the testing is over.
Kidney Donor to Husband 10/30/07
Forum Leader-Living Organ Donation
Barnes Jewish Hospital St. Louis, Mo
My donation story:
http://www.transplantbuddies.org/tbx/messages/28633/34433.html?1256168874

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

Post Number: 13507
Registered: 05-2003
Posted on Monday, June 28, 2010 - 07:23 pm:   Edit Post Delete Post Print Post

Heather,

What was the result of your test? I have been looking for an update.

I hope all is well.
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05 JMH

Sharing Knowledge is an Invaluable Experience

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Questions- Contactl Hostess Rise'
Heather
Forum Leader
Username: Heather

Post Number: 2987
Registered: 05-2003
Posted on Monday, June 28, 2010 - 11:57 pm:   Edit Post Delete Post Print Post

I don't know. They never told me..I assume they have to let the doctor tell me. I don't know. I think it was ok though. Everything eventually twitched...haha. He is waiting for the results of this test..then he will call and make a follow up appt. I go to the rheumatologist again this Wed. I need to call the neuro office and make sure this doc has all the bloodwork and stuff..I guess?

I have been doing better since they increased my one med. My Rosacea is the thing bothering me the most right now.

Thank you both for asking.

I meant to ask how you guys did with the storms, Diane?
Heather

Forum Leader - Living Organ Donation
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: 2988
Registered: 05-2003
Posted on Wednesday, June 30, 2010 - 11:51 pm:   Edit Post Delete Post Print Post

Went to Indy to the Rheum. today. I am no wiser and neither is he. The neuro. did not send test results over to him so he has no idea how those came out..we talked a bit..about the fact I don't have enough symptoms to diagnose anything definitively..he does not want to treat me for something unless he at least has a gut feeling I actually have what he is treating me for. I appreciate that. I don't want that either. He did say if he was to go with his gut feeling now..he does not think I have Lupus..however..Lupus can take years to correctly diagnose unless you have many of the symptoms. Anyhow..I am still the same place I have been..going back and forth with no answers. Very frustrating.
Heather

Forum Leader - Living Organ Donation
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: 2991
Registered: 05-2003
Posted on Saturday, July 03, 2010 - 09:18 pm:   Edit Post Delete Post Print Post

Happy 4th of July to everyone..who reads this...haha. I have no plans other than our church picnic after the service. It is gonna be hot and I am not looking forward to it. Eat and leave is my motto for tomorrow. My husband may have to find his own ride home if it isn't his motto also.
Heather

Forum Leader - Living Organ Donation
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: 2355
Registered: 03-2008
Posted on Saturday, July 03, 2010 - 10:58 pm:   Edit Post Delete Post Print Post

Hey Heather!
We just got back from an extended family picnic (aunts, uncles and cousins into infinity!) with a lot of good food and company.
Tomorrow we are going out to my brother's. He lives in the country, so we can do fireworks to our heart's content out there. My nieces will be there and we are planning to cook hamburgers and brats on the grill. I am going to bring a salad and guacamole, and my brother is going to make homemade ice cream (of course I have to make brownies to go with it!).
I think 4th of July is one of my favorite holidays.
Supposed to be hot here too. At least it's not raining (again). Hope you have fun at the picnic and not too uncomfortable for you.
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: 2992
Registered: 05-2003
Posted on Sunday, July 04, 2010 - 12:24 am:   Edit Post Delete Post Print Post

mm homemade brownies and ice cream...where is this? directions, please. ..I am taking cake and green bean casserole to the picnic. Burgers and dogs I am sure are the meats..lots and lots of other food.

Have fun tomorrow, Diane...oh and hey...Mon Tues and Wed..rain and storms here. ahhhhhhh back to normal weather for us..haha.
Heather

Forum Leader - Living Organ Donation
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: 2999
Registered: 05-2003
Posted on Friday, July 09, 2010 - 10:50 am:   Edit Post Delete Post Print Post

Gosh am I ready for some cool fall weather. This heat does not agree with all my health issues right now. It really aggravates my Rosacea and the burning.

I had a second mole removed on Wed. on my upper abdomen. it was smaller than the one on my back and I am praying it comes back benign as I do not want to go back in and have more cut out around it again. I should hear in a day or so.

It has been way too humid and hot for me to go out and take any pictures. Hoping since it rained last night maybe it cooled down. The humidity is quite high still..so maybe not.
Heather

Forum Leader - Living Organ Donation
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: 13602
Registered: 05-2003
Posted on Friday, July 09, 2010 - 11:28 am:   Edit Post Delete Post Print Post

Hi Heather,

I know how you feel about the heat. We have extremely hot and humid weather all summer in Florida. What can you do for Rosacea? I once read that taking omega 3's are very important for folks who have Rosacea? Have your doctors given you a C-reactive protein blood test to determine if your inflammation process is normal? I am having this test this week.

Wishing you well with your mole removal. You reminded me that I need to make an appointment to see a dermatologist.

Just did a search to backup my comment. There is a ton of info on this
http://www.rosacea-ltd.com/omega.php3
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05 Jackson Memorial Hospital, Miami, Florida
Debra Fertel MD- Med. Dir. Lung Transplant/Pulmonary Hypertension Programs

Si Pham MD, Professor of Surgery, Dir. of Thoracic Transplant & Artificial Heart Program

Anas Hadeh MD, Cleveland Clinic, Weston, Florida
CF consultant- Critical Care and Sleep Medicine

Sharing Knowledge is an Invaluable Experience
Transplant Friends & Chat
Questions- Contact }Hostess Rise'
Heather
Forum Leader
Username: Heather

Post Number: 3002
Registered: 05-2003
Posted on Sunday, July 11, 2010 - 10:29 pm:   Edit Post Delete Post Print Post

Watching a documentary about dolphins..it is called The Cove. I didn't know it was a doc. when I rented it. However..it is quite interesting and quite sad and sickening. I will never go to a zoo or aquarium and look at the animals there the same again. It is sad they are not in their natural habitat. Very sad the things that have been seen happening.
Heather

Forum Leader - Living Organ Donation
EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

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eccoblue
Forum Leader
Username: Eccoblue

Post Number: 1368
Registered: 05-2008
Posted on Monday, July 12, 2010 - 01:49 pm:   Edit Post Delete Post Print Post

I love animals and dolphins are beautiful mammals that are always friendly to humans.
Nothing upsets me more than to see harm come to them by humans who must be sick in the head.
It is unconscionable and evil to hurt dolphins! This kind of thing really pi**es me off!!!
Heart and Liver Tx at Cedars-Sinai on 02/01/2007
Email Kelli
Not So Brave on Amazon
Author,Robert Jaunsen's blog

Fall seven times, stand up eight - Japanese proverb

Behold, I have refined thee, but not with silver; I have chosen thee in the furnace of affliction. Isaiah 48:10
Heather
Forum Leader
Username: Heather

Post Number: 3003
Registered: 05-2003
Posted on Monday, July 12, 2010 - 03:23 pm:   Edit Post Delete Post Print Post

Kelli I agree. I hate to see any animal or mammal mistreated..have you seen this documentary? It is just absolutely awful what is happening in Japan but all the major "aquariums" play their part in it also....the man who made the documentary is the one who trained the dolphins who were in the original Flipper series....
Heather

Forum Leader - Living Organ Donation
EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

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eccoblue
Forum Leader
Username: Eccoblue

Post Number: 1369
Registered: 05-2008
Posted on Tuesday, July 13, 2010 - 12:20 am:   Edit Post Delete Post Print Post

Heather,
I can't comprehend how anyone with a soul could hurt such beautiful and amazing animals. I was blessed to be able to swim with a mother dolphin and her calf. The calf learned from the mother by watching and then doing what she did. The mother even put her nose against me as if she was doing an ultrasound exam. It was incredible! I was convinced she knew there was something wrong with my heart and liver. I believe dolphins are spiritual animals.


Heart and Liver Tx at Cedars-Sinai on 02/01/2007
Email Kelli
Not So Brave on Amazon
Author,Robert Jaunsen's blog

Fall seven times, stand up eight - Japanese proverb

Behold, I have refined thee, but not with silver; I have chosen thee in the furnace of affliction. Isaiah 48:10
Heather
Forum Leader
Username: Heather

Post Number: 3005
Registered: 05-2003
Posted on Tuesday, July 13, 2010 - 10:51 am:   Edit Post Delete Post Print Post

One of the things mentioned in the documentary was they CAN tell when something is wrong..it is like they can "see" through things with their sonar..they can tell if someone is pregnant, etc. So I do believe they know when something isn't right. They are very intelligent.

I keep thinking about certain things they showed on there and I can't get them out of my head...not good things either. Just sad and sickening.
Heather

Forum Leader - Living Organ Donation
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: 3006
Registered: 05-2003
Posted on Tuesday, July 13, 2010 - 10:56 am:   Edit Post Delete Post Print Post

I am actually happy the sun is not out today. Looks gloomy and rainy..that's ok..maybe it will stay a little cooler. This summer has been so humid and hot..so quickly...June felt like July and Aug usually feel. I think the humidity or barometric pressure or something is contributing to my headaches I have been getting. I turned off the AC last night thinking maybe that was also..but my neck is also sore so I think I need a chiropractor but am not going back right now..so I will just do some stretches and see if that helps. I am looking forward to fall...not winter..but fall...lol.


We have had thing migrate here this spring and summer that have either not been seen here or have not been seen in over 100 years...Pelicans..in Illinois? yes..they are gone now but were here for quite a while. And now Sandhill Cranes which nested but the nest got washed away by the rains we had..yet they are still here rooting around like they are wanting to nest...I imagine they leave when it gets cold since they are from the south...hope they return. Kinda fun to see different things.
Heather

Forum Leader - Living Organ Donation
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: 4628
Registered: 07-2007
Posted on Wednesday, July 14, 2010 - 12:49 am:   Edit Post Delete Post Print Post

Heather:

I know what you mean about the heat and humidity. I actually can handle the heat, but not the humidity. I can't stand the sticky, damp feeling. We have had a pretty hot summer here in Ohio too. I do think this weather makes it really hard on sinus sufferers. I have also heard the weather people say that the allergies are really bad this year. The humidity may be why you are getting headaches. I get them too and so does Jerry. I also think Sammy is bothered by the humidity too. He has been complaining of his "brain" is hurting. We take that to mean he has a headache.

Hopefully, things will cool down here soon. I don't want summer to go away, but I sure wish the humidity would. I love to have my windows open and feel the warm breeze. That's my favorite part of summer.

I hope you are feeling a little better these days. Please update us on any new news.

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: 3010
Registered: 05-2003
Posted on Wednesday, July 14, 2010 - 01:09 pm:   Edit Post Delete Post Print Post

I have heard this from a lot of people Karen. The humidity is just awful this year...and the heat. Today should be another doozy.

I am off to the Vet with Baylie for her yearly shots. Oh joy. She will probably poo or pee in the waiting room cause she gets nervous when she goes there..I don't blame her. haha.
Heather

Forum Leader - Living Organ Donation
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: 2384
Registered: 03-2008
Posted on Tuesday, July 20, 2010 - 10:43 pm:   Edit Post Delete Post Print Post

Hope you are okay over that way Heather. Some storms we have had! We had 4 and a quarter inches of rain over the last two days! It seems like it is either feast or famine for rain here in Central Illinois!

I should have known it was going to pour - Cisco watered the lawn on Sunday!
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: 3018
Registered: 05-2003
Posted on Wednesday, July 21, 2010 - 02:20 am:   Edit Post Delete Post Print Post

No big storms here lately, Diane. I think about you guys down there though, every time I hear the severe weather alerts. We have and have had rain in the forcast all week..but nothing spectacular yet. Guess it is on it's way though.

I am so not liking the mugginess of this summer. Seems worse than most. I mean..hot..used to that. But the high humidity day after day after day after day..ugh. No wonder we have all these storms coming through.

Stay safe!
Heather

Forum Leader - Living Organ Donation
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: 3020
Registered: 05-2003
Posted on Wednesday, July 21, 2010 - 05:55 pm:   Edit Post Delete Post Print Post

spoke a bit too soon I guess. I was cleaning and looked at the tv and saw TORNADO WARNING...great. It was for the southern part of our county..so I kept cleaning and watching..then it moved to our county. I did not go in the basement but kept a close eye on things.. They have cancelled it now. Dodged another one. Seems like so many times it hits just north of us or south of us..don't know why.
Heather

Forum Leader - Living Organ Donation
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: 13781
Registered: 05-2003
Posted on Wednesday, July 21, 2010 - 07:58 pm:   Edit Post Delete Post Print Post

Oh no Heather! We too might be receiving a big storm too. Tornado's and hurricanes are very SCARY!
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05
Debra Fertel MD- Med. Dir. Lung Transplant/Pulmonary Hypertension Programs
Jackson Memorial Hospital

Si Pham MD, Professor of Surgery, Dir. of Thoracic Transplant & Artificial Heart Program-Miam Transplant Institute

Anas Hadeh MD, Cleveland Clinic, Weston, Florida
CF consultant- Critical Care and Sleep Medicine

Sharing Knowledge is an Invaluable Experience
Transplant Friends & Chat
Questions- Contact Hostess Rise'
Heather
Forum Leader
Username: Heather

Post Number: 3021
Registered: 05-2003
Posted on Wednesday, July 21, 2010 - 08:37 pm:   Edit Post Delete Post Print Post

We just have possible severe t-storms tonight..no tornados yet..

I hope you don't get a tornado or a hurricane. Living close to the ocean has it's disadvantages, doesn't it? Please be careful and stay safe!!
Heather

Forum Leader - Living Organ Donation
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: 13783
Registered: 05-2003
Posted on Wednesday, July 21, 2010 - 08:44 pm:   Edit Post Delete Post Print Post

Thank you! I no longer live near the beach. you have a good memory. I live out west now and miss the beach.
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05
Debra Fertel MD- Med. Dir. Lung Transplant/Pulmonary Hypertension Programs
Jackson Memorial Hospital

Si Pham MD, Professor of Surgery, Dir. of Thoracic Transplant & Artificial Heart Program-Miam Transplant Institute

Anas Hadeh MD, Cleveland Clinic, Weston, Florida
CF consultant- Critical Care and Sleep Medicine

Sharing Knowledge is an Invaluable Experience
Transplant Friends & Chat
Questions- Contact Hostess Rise'
Heather
Forum Leader
Username: Heather

Post Number: 3022
Registered: 05-2003
Posted on Thursday, July 22, 2010 - 12:33 am:   Edit Post Delete Post Print Post

Out West...meaning..where? Florida or out west...California????
Heather

Forum Leader - Living Organ Donation
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: 3029
Registered: 05-2003
Posted on Tuesday, July 27, 2010 - 01:14 am:   Edit Post Delete Post Print Post

Yesterday I got to hold my little sweetie in church. She is such a pretty little girl. I gave her back to her mommy when she started spitting up on me, though..haha. When Penny starts back to teaching in a few weeks I won't be able to see her near as often..so I better get my fill now..

Today was not nearly as humid as it has been but it was still very hot. Very very hot summer...and with my new diagnosis of acne rosacea..hot humid weather does not agree with me. Just makes it worse. I feel like I am falling apart this year....can't even find a makeup that does not aggravate the rosacea...oh well. It could be worse.

My dad had an aortic valve bypass (nothing done with the defective one but a new one put in in the bottom of his heart) in Apr. He was feeling pretty good but has mowed the lawn twice now and says he is still getting short of breath and has to stop and rest frequently...I sure hope it is just the weather..I don't think he should be out doing that stuff in this heat. I also think he should call the surgeon or cardiologist and see if they think it is the weather or if his surgery was not as successful as they thought. At any rate..I did not like to hear this.

Had to send my good camera in for repairs....sent it off this morning and I am already having withdrawals..haha. I am glad I have my old one...even though it is not what I am used to..it is nice not having to change lenses...which reminds me..I need to call them and ask if they will clean my sensor while they are at it..for the same price...gotta remember to do that. Remember...remember..remember....yeah..right..ME?
Heather

Forum Leader - Living Organ Donation
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: 2396
Registered: 03-2008
Posted on Saturday, July 31, 2010 - 05:41 pm:   Edit Post Delete Post Print Post

I love holding babies - I have two great nieces and a great nephew on the way. But I'm with you - it is nice to be able to hand them back when they get fussy! Great Auntie priveleges - you get to enjoy only the fun parts!
Kind of cloudy here today and very humid. Supposed to rain, but yet the sun keeps going in and out.
Hope you have a good weekend Heather!
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: 3035
Registered: 05-2003
Posted on Saturday, July 31, 2010 - 09:21 pm:   Edit Post Delete Post Print Post

pretty cloudy here all day also Diane. Humid. But no rain yet. 2 of our grandkids were here today. Had a good time but I did not get to sleep til about 4 am and got up around 7 ..so I am tired..but don't dare nap or I won't sleep tonight. Don't know what my problem was. I normally sleep pretty well once I get to sleep.

Babies are precious for sure. And very nice when you can hand them back to mom or dad..haha.

Hope you are enjoying your weekend also.
Heather

Forum Leader - Living Organ Donation
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: 3156
Registered: 05-2003
Posted on Saturday, November 20, 2010 - 04:19 pm:   Edit Post Delete Post Print Post

seeing if my pic changed.. evidently not. I went to my profile and it showed the new pic..and it said it saved it...but I am seeing my old pic still 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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