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A little knowledge is a dangerous thing

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#1 miocean


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Posted 16 February 2010 - 06:02 AM

With a kidney transplant in the near future I have been reading a lot on the internet about it and post transplant care. I have managed to do what I did when I was first diagnosed with scleroderma. I read too much and scared myself to death. I remember going to a doctor for a diagnosis and mentioning my fear and he told me to get off the internet. I did for a while and than I found this site which answered my questions and calmed my fears. You have been a great support group. I found a dialysis/transplant support group that meets at my hospital once a month and went to my first meeting this month. They were able to answer some questions and share their experiences. Last night at dialysis my nephrologist came around and I mentioned to him that I was scared. He asked why and I told him I was concerned about all the drugs I would have to take and he talked with me about them, both the good and the bad. I had read about isolation after the surgery and he told me it wasn't as bad as I read. I was concerned about being in intensive care and being intubated and he told me they need to do that because of the anesthesia they give you and to make sure you start breathing on your own. So I feel a little more confident in the procedure. My doctor said with all the risks it is far safer than being on dialysis.

Take care of your kidneys and watch your blood pressure. I never realized how much they do for your body.
ISN Artist

#2 Shelley Ensz

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Posted 16 February 2010 - 06:47 AM

Hi miocean,

I can relate a little bit to how you feel, as my husband just had a lung transplant last month. He was first listed over six years ago and then went inactive on the list as he was holding his own for quite awhile.

Anyway, in the meantime we learned a lot about transplants, the success/failure rate, the risks, the medications, and medication side effects, etc. Even though we both thought we were prepared for it, and even though my husband's was a complete success, we were still both dumbfounded by many aspects of it.

Lung transplants fare the worst of all types of transplants, for a number of reasons. With a few of the expected and normal complications, when my husband got out of the hospital we had a staggering 24 medications to deal with, including 3 different types of shots to give him throughout the day. The lists of potential side effects and warnings were astounding, and we were both quite tempted to give in to anxiety or sheer 'overwhelm' a few times, especially on our first few weekly pill-counting sessions. Even though he's had a full handful of medication side effects (and is even told to expect to need a kidney transplant as an eventual result of the transplant meds), they have all been manageable.

Now, already, his medications have been reduced considerably, with no more shots, and seemingly nonstop clinic and lab visits have been drastically reduced. We were able to celebrate Valentine's day with a nice dinner out, and he can even start driving again soon!

The big picture is, he is completely thrilled to be off oxygen. He's delighted to be in pulmonary rehab. Even though all the fuss was very recent, he still says he would do it all over again, in a heart beat.

I know how hard it is to take the warnings and precautions seriously, yet not get overwhelmed or negative about it all. It is good you are thinking through these things now, rather than ignoring them and then being shocked about it all, after your transplant. Better to face up to these issues and stare them down now, deciding on your attitude and approach to the whole adventure, ahead of time. A very important thing is to go into transplant with a very sturdy positive attitude, determined that nobody and no event is going to send you into an emotional tailspin.

You can do it, but it does take keeping your eye on the "prize" (being dialysis-free!) and ignoring anything else in its path. If you've already read enough on the warnings, and you're still game for the transplant, then it is time to decide on a sturdy can-do attitude, to see you over and through any or all rough spots you encounter.

Best of luck and happiness to you, and may your transplant be a resounding success!
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 enjoytheride


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Posted 16 February 2010 - 03:26 PM

Sometimes I'm amazed at the compassion a doctor will ofter when you finally say "I'm scared." It's great a doctor took time to go over your questions- sometimes just voicing them will help put things in perspective and give relief.
Being stoic has a limited virtue in the doctor's office IMO.
Hang in there and be sure and let us know how great you feel after your transplant.

#4 miocean


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Posted 18 February 2010 - 07:33 AM

Shelley and enjoytheride,
Thank you for your responses. Shelley, your info about Gene's lung transplant was really informative and helpful. I hope he continues to do well. I know the kidney transplant and the weeks following will be difficult for both my husband and me. However, last night at the end of dialysis I got sick. I felt like I was going to pass out, my body got all tingly and I threw up. I was sick all night long and am just starting to feel better. I haven't become sick in dialysis for a while but in the beginning it would happen all the time and it reminded me how much I hate it. I guess I will just have to be brave and go through with whatever the transplant brings.

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#5 KayTee


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Posted 18 February 2010 - 11:07 AM

Dear miocean:

Thank you for sharing your fears and concerns. I'm awed by how helpful this site is, and how caring and supportive also.
Please let us know how you are doing.
warm regards,
Kay Tee

#6 Snowbird


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Posted 18 February 2010 - 12:23 PM

Just wanted to wish you good luck Miocean and say that I hope the doctor helped ease your worries even just a little bit. I hope those sickly episodes go away again in between your dialysis treatments for you too while you wait. I have no doubt when the time comes for your transplant that you will be extremely brave and ready to do whatever you feel you need to. I think you will find that your heart (and no doubt your husband too) will help guide you. Keep us updated.
Sending good wishes your way!