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Heather
Forum Leader
Username: Heather

Post Number: 3213
Registered: 05-2003
Posted on Sunday, January 16, 2011 - 12:41 am:   Edit Post Delete Post Print Post

just thought I would start a new thread for my Mayo visit. will be leaving in the morning around 7. We hope to get there around 4 or so. drive by the clinic first to see where it is and then settle into the hotel. I must be there at 6:45 am on Monday. I am scheduled as a double booking..which means..hopefully someone will cancel. I just may have to sit all day til I see someone..but I WILL get to see someone on Mon. Hoping someone will have canceled in the morning..so we don't have to sit so long. I guess the weather is supposed to really get frigid and snow on Sun. night..and Mon..so maybe.
Heather

Forum Leader - Living Organ Donation
Heather's Blog

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

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Hostess Rise'
Board Administrator
Username: Rise

Post Number: 15516
Registered: 05-2003
Posted on Sunday, January 16, 2011 - 12:47 am:   Edit Post Delete Post Print Post

Heather,
You are in my thoughts and prayers. I certainly hope you will bring your lap top with you.

Please keep us posted. Prayers are being sent. I will pray that this trip was not for nothing and that they can find a solution to your troubling pains etc...
love
Rise'
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05
---Jackson Memorial Hospital

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Karen R.
Forum Leader
Username: Relivkaren

Post Number: 5138
Registered: 07-2007
Posted on Sunday, January 16, 2011 - 01:02 am:   Edit Post Delete Post Print Post

Heather:

I pray that your Mayo experience is positive and that one of the docs can figure out what is going on with your health.

I remember feeling the same way - I didn't want to go. It's an amazing place and you will be impressed. I just hope that they can find the answers for you.

Travel safe and stay warm!

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.
DAP1122
Forum Leader
Username: Dap1122

Post Number: 2325
Registered: 05-2008
Posted on Sunday, January 16, 2011 - 10:05 am:   Edit Post Delete Post Print Post

Heather,

You are in my thoughts and prayers as well.

Be safe, stay warm and try not to worry!!

God Bless!
New blog/web page -
My2ndHeartBeat
Dap's Email

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

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Heather
Forum Leader
Username: Heather

Post Number: 3215
Registered: 05-2003
Posted on Sunday, January 16, 2011 - 08:53 pm:   Edit Post Delete Post Print Post

We arrived here at the hotel around 3 pm. Not a bad drive, really. We left around 7:30 and stopped for gas once and potty break. We stopped at Wmart to get some food and then had to haul it and all our junk up. Glad they had elevators.....not the Ritz for sure..but ok. I miss my recliners already. I actually brought my zero gravity chair (lawn chair) and it reclines..although has no cushion to it. But it is better than sitting up all evening.

Don't know what to expect tomorrow but I am here and will deal with what comes...
Heather

Forum Leader - Living Organ Donation
Heather's Blog

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

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Hostess Rise'
Board Administrator
Username: Rise

Post Number: 15527
Registered: 05-2003
Posted on Sunday, January 16, 2011 - 09:36 pm:   Edit Post Delete Post Print Post

Hi Heather

wishing you a good nites sleep. You are in good hands.

Thanks for checking in
Rise'
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05
---Jackson Memorial Hospital

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LadyDi
Forum Leader
Username: Ladydi

Post Number: 2548
Registered: 03-2008
Posted on Monday, January 17, 2011 - 10:48 am:   Edit Post Delete Post Print Post

Praying for you and wishing you a good day.
Kidney Donor to Husband 10/30/07
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Heather
Forum Leader
Username: Heather

Post Number: 3216
Registered: 05-2003
Posted on Wednesday, January 19, 2011 - 02:10 pm:   Edit Post Delete Post Print Post

hmm. again..thought I wrote something here last nite but I was tired so maybe not. Yesterday was another hard day full of tests that were not pleasant. This morning I got my last one done..the full spinal MRI. just got out of there and now waiting to go wait to see if I can get in to see the neurologist this afternoon without an appt. Then Tomorrow I sit to wait and see the Rhuem. and wrap things up. The nurses said they normally do not order more tests unless they find something really weird...they know pretty much what they are looking for. So hopefully I will be coming home Thurs afternoon or Fri. morning..it is supposed to snow here again Fri. I do NOT want to be stuck here and I know no matter how bad it is Danny would try it anyway...so anyhow. When I get home or know anything..which I don't..I know nothing yet..I will let everyone know.
Heather

Forum Leader - Living Organ Donation
Heather's Blog

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

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Hostess Rise'
Board Administrator
Username: Rise

Post Number: 15534
Registered: 05-2003
Posted on Wednesday, January 19, 2011 - 02:33 pm:   Edit Post Delete Post Print Post

Hi Heather

You are in my thoughts and prayers. You are such a sweetheart to keep us filled in.

If you have anything, I hope it is nothing serious. We love our Heather.
You are like my first born around here :-)
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05
---Jackson Memorial Hospital

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Hostess Rise'
Board Administrator
Username: Rise

Post Number: 15541
Registered: 05-2003
Posted on Wednesday, January 19, 2011 - 05:55 pm:   Edit Post Delete Post Print Post




You have been blessed:-)
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05
---Jackson Memorial Hospital

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Heather
Forum Leader
Username: Heather

Post Number: 3217
Registered: 05-2003
Posted on Wednesday, January 19, 2011 - 05:58 pm:   Edit Post Delete Post Print Post

laughing about me being like your firstborn around here...that is cute.

angel.jpg?

getting ready to head back over to Mayo to meet with the neurologist soon. praying for a good report.
Heather

Forum Leader - Living Organ Donation
Heather's Blog

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

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Hostess Rise'
Board Administrator
Username: Rise

Post Number: 15542
Registered: 05-2003
Posted on Wednesday, January 19, 2011 - 06:11 pm:   Edit Post Delete Post Print Post

Just remember you are blessed:-) Just sending you a blessing with the angel.
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05
---Jackson Memorial Hospital

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LadyDi
Forum Leader
Username: Ladydi

Post Number: 2550
Registered: 03-2008
Posted on Wednesday, January 19, 2011 - 10:28 pm:   Edit Post Delete Post Print Post

Thinking of you Heather and wishing you a good report.
Prayers to you and Danny for good news and a safe journey home.
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: 3218
Registered: 05-2003
Posted on Thursday, January 20, 2011 - 11:15 am:   Edit Post Delete Post Print Post

Sitting here waiting to see rheum. Saw neuro yesterday. All those tests came back normal.
Heather

Forum Leader - Living Organ Donation
Heather's Blog

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

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Heather
Forum Leader
Username: Heather

Post Number: 3219
Registered: 05-2003
Posted on Friday, January 21, 2011 - 01:27 am:   Edit Post Delete Post Print Post

Well I have been diagnosed with Antiphospholipid Antibody Syndrome. I really loved the Rheum. I had...wish he was closer....I will write more later. LONG, tiring day. We got home a few hours ago. Now I need my own bed.....I have my baby curled up on my footrest..ah...right where she should be.
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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CiscoKidney07
Forum Leader
Username: Gregg

Post Number: 4425
Registered: 03-2008
Posted on Friday, January 21, 2011 - 12:34 pm:   Edit Post Delete Post Print Post

I am happy that at least you have gotten a better diagnosis. Just be careful and take care of yourself, young lady!! Now, at least you know more what you can and cannot do and what to watch for in your life. Not sure it made things that much easier, but I am sure that you will overcome. As always,l you are in LadyDi's and my prayers. Look forward to hearing from you a little more. Peace!

Cisco
There are not too many things in life worth working my butt off for, but my health is one of them

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eccoblue
Forum Leader
Username: Eccoblue

Post Number: 1768
Registered: 05-2008
Posted on Friday, January 21, 2011 - 10:36 pm:   Edit Post Delete Post Print Post

Glad you're back home again and really glad you got a diagnosis so you can know what you're dealing with. Thinking of you!
http://www.apsfa.org/aps.htm
Sara And The Gift Of Life

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Heather
Forum Leader
Username: Heather

Post Number: 3220
Registered: 05-2003
Posted on Saturday, January 22, 2011 - 12:52 am:   Edit Post Delete Post Print Post

Thanks, Gregg and Kelli. Kelli..I actually found that website earlier today. The more I read, the worse it sounds. I am supposed to start Cellcept tomorrow but just remembered I have the second part of my root canal in a few weeks. Don't know if I should hold off or just ask for an antibiotic right off the bat. Guess I should call.

It does not surprise me that what I have been diagnosed with is rare and there is not a LOT out there about it.

I am still waiting to hear how the Lupus panel came back. A year ago they did one here..and it kept coming back that something in my blood was interfering with the test and it could not be done. So they had to send it to a special lab and do it. It came back Neg. then. Now, at Mayo Clinic, the doctor was telling me that he was waiting for the results of a test that was coming back unable to do due to an interference...I said..let me guess...Lupus panel? he said yes...I said ..yeah it has happened before. So he said he works very closely with this lady who was doing this particular test and he wants to find out what that interference was..and she said that I had really weird blood that it would not let the test be done..so I am assuming it is quite strange if they have never seen it....again....does not surprise me.

The more I read on this disease...the worse it sounds.But I have to educate myself. I am sure no doc. here will be much help. I need to as my local rheum to please refer me to someone who has worked with this and lupus. I am not sure he is the one I want to continue seeing.
I wanted to pack up Dr. Osborne and bring him home to Danville with us. He REALLY listened to all I had to say and checked me over...I guess I also have very strange capillaries in my left fingers..fore and pinky...the forefinger he kept looking at under the microscope and finally said wow these look like what we would see from someone with no pulse. I thought he was joking..but he said..no ...people who wear a pump to take over for their heart..have no pulse..and this is what we see in those patients. Great.

Anyway..I am trying to wrap my head around this. At first I did not think it was all that horrible..but it really is sort of a scary disease...at least to me....so bear with me.
Heather

Forum Leader - Living Organ Donation
Heather's Blog

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

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Karen R.
Forum Leader
Username: Relivkaren

Post Number: 5161
Registered: 07-2007
Posted on Monday, January 24, 2011 - 12:08 am:   Edit Post Delete Post Print Post

Heather:

I read your post the other day, but have just now had time to sit down and post to you.

First of all, I am glad that someone is finally getting to the bottom of your health issues. Second, I am not at all surprised to find out that it is autoimmune related. Autoimmune diseases are the most frustrating and hardest diseases to diagnose and get a handle on. Mostly because the symptoms are so different from person to person and they mimic and overlap so many of the 80+ autoimmune disorders and diseases out there. Also, autoimmunity totally confuses and frustrates most doctors because the can't "fix" you with a drug, surgery, or therapy in most cases.

Now for the good news - while APS or APL sounds very scary it is a very obscure and confusing diagnosis. Many people have these Antiphospholipid Antibodies and never know it unless they start to have symptoms like you are having. I was diagnosed with APS or APL (as my doc called it) in 1996 when I was also diagnosed with primary Sjogren's syndrome. My doc was convinced I had Lupus, but I never had all the criteria for Lupus, so he diagnosed me with primary Sjogren's and APL. I was treated for the Sjogren's, but was told that the APL didn't need to be treated unless I had blood clots or got pregnant. I did take plaquinel for the Sjogren's and it did help.

I was then diagnosed with Grave's disease (hyperthyroidism) and the APS/APL issue came up again. My bloodwork always showed the Antiphospholipid Antibodies. I was treated for the Grave's and today I have Hypothyroidism (I take synthroid for that).

The big thing was when we wanted to start a family. We were told that the APS would be a major factor in carrying a child full term. We consulted with a Perinatologist to find out what we needed to do since we knew going into a pregnancy that I had these Antiphospholipid Antibodies. We were told that I would be a high risk pregnancy and would have to be monitored closely and take heprin shots every day.

We did not have an easy time getting pregnant. In fact, we were told that I would never conceive due to a pituitary gland problem. Probably another autoimmune related problem. So we decided to adopt. Surprise! I got pregnant - Praise God!! On my first OB appointment I spent 45 minutes listening to all the things that could go wrong with the baby due to all the autoimmune antibodies that I carried. I started low dose asprin and heprin immediately and had more ultra sounds and blood work than I care to remember. You know the end of the story. We had a very healthy baby boy and thank God for him every day.

I guess I tell you all of this because I don't want you to be afraid or upset. Yes! APS is very rare and very unpredictable. It can be worse for some than others. It can wreak havoc some years and not be noticable for another 20 years. As I have always been told - autoimmune disorders "wax and wane." You can treat the symptoms, but you cannot cure the autoimmunity. I still think that my lung disease was probably a manifestation of one of my autoimmune diseases. NO - I don't think you will have lung problems. Everyone is soooo different and gets affected by this crazy autoimmune stuff so differently. My mom has Rheumatoid, my aunt had Lupus, my cousin has Grave's, another cousin has some bile duct disease and now has Lupus. It's nutty stuff.

The best thing I can tell you is to go on and live your life. Live on the days you feel good and rest on the days you feel bad. Remember the Spoon Theory? If not, google it. It's about a girl with Lupus and how she explains her disease to her friend. It sucks, it's no fair, and it's frustrating. You have the right to cry, to scream, to be mad and to be scared, but don't stay there long. Fight it and win!! You can have a full life - I am living proof. I have to admit though that there have been MANY times that I was not so positive. I might say I was downright depressed and threw temper tantrums. Ask Jerry!! LOL!!

Now you have a diagnosis - not a fun one, but you now know what you are dealing with. There may be more stuff that pops up, but you have a point of reference and you are not flopping around out there wondering what is going on. You can deal with this with the help of your doctors, family and friends (us!!) I hate it that you have to deal with this and I am so sorry. Just know that I am here to support you and be a listening ear. I have lived this autoimmune life since I was diagnosed with Crohn's disease at 13 or 14 I can't remember anymore?!?! I wish I could say that I didn't get it, but I do. I understand how tired you feel and how frustrated you are. I actually think it gets better once you know what you have and you can quit stressing over it. I think you put your mind in fight mode and things get better. I don't know. I am just rambling now - wishing you didn't have to deal with this.

I am here to understand and talk, listen, or whatever you need. Just let me know.

I love you my friend! You will overcome this and you will enjoy life again!!

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: 3221
Registered: 05-2003
Posted on Tuesday, January 25, 2011 - 02:44 pm:   Edit Post Delete Post Print Post

Karen and Kelli..thank you.

Karen..thank you for all the info about you and I am glad to have found another person on earth that knows what this is and has been treated for it. I guess the thing that bothers me most is that the doctor at Mayo was not at all sure all my symptoms were being caused by this as neither he nor the neuro there had ever had someone present with all the stuff I am having. I am off the grid..his words..not mine. Not encouraging coming from a doctor at a place like that. I think the diagnosis came from bloodwork more than my symptoms..but I can't say for 100 percent.
Who diagnosed you, Karen? What symptoms did you present with APS?

are you still taking blood thinners?

I was put on Cellcept..was already on aspirin daily. Not sure if the Cellcept is making things worse or if it is just the stress of everything right now..but the burning is coming back a little worse than it has been in 3 or 4 weeks..and some other stuff is feeling worse as well. This has happened before ..just randomly..but it has me concerned.

I contacted my Rheum. in Indy and he has referred me to a Hematologist who has dealt this this and knows about it..he does not know much. I took the appt. and figured what the heck..will see what she says..and it is a woman which is a plus since some of my more odd (very odd) symptoms are much easier discussed with a woman. I do have a call put into another rheum. in Indy to see if he is familiar with this..long story but my dad was diagnosed years ago..found this out while up in MN..I did not know this. But he was being treated by this woman rheum. and she left and moved away and he was referred to 2 other docs in Indy...by her. So the doc I left a message with is one of these..I am hoping they will return my call and let me know. I also put a call into my doc at Mayo to see what he thought of me seeing Hematology. E

So even though I have this diagnosis and I should be somewhat relieved I really am not...number one...because it is very scary and very obscure as you said and not known...and number 2 because many of my symptoms may not be associated with this...and then where am I ? Right back where I started. Living with these progessing symptoms and not knowing where to go or what to do. Now that I am on Cellcept I can't just put fans on my face all the time when it is burning anymore..I will get sick. So I just endure it and sit there in extreme pain.'

Then there is the God side of it all. I know I am not supposed to question why..but I do. Why did I get this? Why did it happen? Did I cause it? If so.what was it that I did to cause this to happen to me?
I know in my head,..all the things the Bible says and all the the Lord says about how He is always there, will never leave me..that I will overcome this...that he is my healer..that all things work together for the good of those who love God and live according to his purpose...that I have to put my trust in Him..not in man. That we live by faith, not by sight...

It is so easy to say these things...yet so hard when you are faced with huge seemingly impossibilities....to really really believe them..or it is for me. I am not saying I don't believe all this because I most certainly do. It is just so very hard, at least for me..to stand in faith sometimes when my world is falling apart at the moment.

It would help if my husband was a bit more understanding. I don't think he understands it is a very serious condition. Everything I have been reading says I should not be flying..especially not in coach..even for a few hours....because the risk of blood clots increases...and what has my husband done? he went and booked a vacation (while angry with me) before our Mayo trip...flying to Colorado. So now...how do I tell him I can't go....I have never flown in a big plane nor do I really want to...and I am sure it is not refundable.

anyway..Karen I think I will email you if you don't mind.
Heather

Forum Leader - Living Organ Donation
Heather's Blog

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

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Hostess Rise'
Board Administrator
Username: Rise

Post Number: 15550
Registered: 05-2003
Posted on Wednesday, January 26, 2011 - 02:21 pm:   Edit Post Delete Post Print Post

Hi Heather

I am sorry I did not read your post earlier as I was not online for a few days.

I do not know what to say my dear Heather. If I were you I would be proud of myself for all you have done to find this diagnosis and to find a place to properly care for you.
I can hear your frustration about the trip. I am sure with a doctors note you will get your money back. Perhaps take a trip by car?

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

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Karen R.
Forum Leader
Username: Relivkaren

Post Number: 5170
Registered: 07-2007
Posted on Wednesday, January 26, 2011 - 03:57 pm:   Edit Post Delete Post Print Post

Heather:

Please email me! We can talk all about your symptoms and how I have handled this over the years.

I also understand the God thing. I have had so many times in my life that I have asked "WHY!!!" I don't have answers for you, but I have been through so much that I might be able to help. In fact, I have a devotional from In Touch - Charles Stanley that is all about dealing with difficult times. It was January's devotional and as I went through it I wished I had had it while waiting for my transplant. I will send it to you if you want me too.

We have lots to talk about. I just want you to know that I am here for you and I DO understand how serious this is and how scared you are and how confused you are. I have been to sooooo many specialists that I really don't think I could count them. I have had doctors tell me to "go home, eat, and get pregnant" because they didn't know what to do with me. I have had doctors tell me that they couldn't do any more for me so I might as well not make another appointment. I have had doctors tell me that this was all in my head and that I needed an antidepressant. I have had doctors accuse me of not taking my medicine. It goes on and on....

You are dealing with autoimmunity and it confuses and scares doctors. I would lay bets that some of your other symptoms are due to another or multiple autoimmune diseases. APS tends to be in conjunction with other autoimmune diseases - maybe it starts or maybe it comes along or after the others - who knows?!?! I think I told you that there is a good possibility that my lung disease was a manifestation of one of my autoimmune diseases - probably Sjogren's or Crohn's. Crazy - I know.

The doc is probably using the cellecept to suppress your immune system so that it can't continue to attack things that aren't there except for healthy tissue or organs. I didn't do well on cellcept so watch your WBC. A lot of times they will use Imuran or 6MP or even Remicade or other injectables. The end result is a suppressed immune system, so as you know from all of us transplantee's that you have to be careful about getting sick. YUCK!!

Okay - email me and we can either keep emailing or call each other. I think it would help you a lot to talk it out, but I will leave that decision up to you. I will do whatever I can to help you.

I am sorry that your husband is not as supportive as you want him to be. I will say this. Our hubby's get scared too and sometimes what you perceive as not concerned may be his way of denying or suppressing his fear. He loves you and does not want anything serious to be wrong. They all deal with things differently. I know when I first got sick with my lung problem, Jerry was very frustrated with me and a little angry until he realized that this was real and that I was really in trouble. After that things changed 110 percent. Hang in there, this is all new to both of you.

I am here for you! I am also praying so much for you!

I love you!

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

Ohio, USA

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

Post Number: 3224
Registered: 05-2003
Posted on Wednesday, January 26, 2011 - 05:52 pm:   Edit Post Delete Post Print Post

Karen..If you think it would help me and you are finished with the devotional I would love to read it. I will email you my address. I will also be emailing you as well just to chat. Thank you.

I truly don't think it is my husband being scared. He just thinks that I should not ..well I will email you that junk....not here.

Thank you Rise and Karen for your prayers and thoughts and kind words.

I have just joined a APS forum today so I will be meeting some others there who are dealing with this.


Karen.. Mayo sent my doctor orders for bloodwork every month. So about the 20th of every month I will be getting that done.
Heather

Forum Leader - Living Organ Donation
Heather's Blog

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

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Heather
Forum Leader
Username: Heather

Post Number: 3225
Registered: 05-2003
Posted on Thursday, January 27, 2011 - 07:12 pm:   Edit Post Delete Post Print Post

I mentioned before that the rheum. I had been going to referred me to a hematologist. I told my rhuem. nurse to please make sure this doctor KNEW how to treat this and knew about it. So she checked and yes ....she dealt with this. OK. so here is a cool God thing that happened. I have been wanting a female rheum. or whatever...because some of my stuff is of a personal nature...that is going on. Up to now..no females and trust me when I say it is extremely difficult to discuss some symptoms with male doctors. So anyway. My friend and transplant buddy Trish, from Florida calls me before I had mentioned any names or anything and said her mom ..immediately upon hearing what I was dealing with, called someone at the U. of Miami and asked them to give her names of the best Rheum. and hematologists in my area. So Trish tells me she has some names for me to look into if I wanted. I said well what are some of the last names..and the first name she gave me was the name my Rheum. had referred me to. YAY. That was the first cool thing. Then, today a new Rhuem I had called and left a message with asking if he still dealt with this disease...returned my call. The nurse was one one the friendliest nurses I have spoken to. So very helpful. She was talking to me and I had told her I was seeing a hematologist as well and she asked who I was seeing. WHen I told her she was like..oh wow..she is AWESOME. She is tops...so glad you got in to see her. Then she could not believe how fast I had an appt with her either..Feb. 3. So then...I had asked about this male doctor that worked with the doc my dad had been with..years ago...and she got on the conference line and was asking the scheduling person when I could get in to see him as he was very good also..and they said not until March or April. She gave the lady another doc. name and said she is very very good as well. I said..a female? She said yes. So yay. I have female docs now and man you don't know how much that means to me. The Lord knew how badly I wanted a female doctor who would better understand some of my stuff I am dealing with and I have been praying for that. So praying now that they are great and wonderful doctors. The Rhuem. told me if I go to the hematologist and decide I do not need to come to them, just cancel the appt. ...which is Feb.22. Both pretty quick, considering they are specialists. Usually it is at least a couple months. Even my pcp is booked a few weeks out usually. So just thought I would share that. A ray of hope in my somewhat darkened world right now.
Heather

Forum Leader - Living Organ Donation
Heather's Blog

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

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Hostess Meagan
Forum Leader
Username: Newheart14

Post Number: 1729
Registered: 01-2009
Posted on Friday, January 28, 2011 - 07:38 pm:   Edit Post Delete Post Print Post

Hi Heather,

I know you have been going through a difficult time the past few months. I am glad that some things are starting to go right for you. I am sending you lots of positive vibes and wishes.

You sound like you are in excellent hands and will soon be on the road to feeling great again.

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

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

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Hostess Rise'
Board Administrator
Username: Rise

Post Number: 15571
Registered: 05-2003
Posted on Friday, January 28, 2011 - 07:57 pm:   Edit Post Delete Post Print Post

Hi Heather
I can hear that you are now seeing a rainbow in your life. :-) You have a great attitude.
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05
---Jackson Memorial Hospital

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Karen R.
Forum Leader
Username: Relivkaren

Post Number: 5188
Registered: 07-2007
Posted on Saturday, January 29, 2011 - 12:05 pm:   Edit Post Delete Post Print Post

Heather:

YEAH!! I love to see how God works in our lives! Just keep praying! He will never leave you. Things may not always go as you thought they would but they will go exactly as God wants them to. I promise you that He has your best interests at heart. Sometimes when I look back at all that has happened to me I am amazed at how God took all the bad stuff and made it work out according to His plan. Simply amazing!!

I am so glad that you are seeing female docs. I agree that it is much easier to talk to a woman doc about some issues. I always think that women docs understand our bodies and some of the health challenges that we face that men don't. I think our hormones play a huge role in our overall health. I also think that the medical community as a whole does not understand the complexity of the balance of our health and hormones. I could go on and on about the "hormone" thing, but it's a little soap boxy!! LOL!!! I am just glad that you have a two good docs that are women.

Please continue to keep us up to date. In the meantime, keep that ray of hope going. You will figure this all out.

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.

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