I was diaagnosed with CKD a year ago - stage 3 then. Now I'm at stage 4, got myself an a/v fistula to prepare for dialysis, and just learned yesterday that I've been approved for a kidney-pancreas transplant and am now on the list. Transplant seems like a miracle. There are continuing day to day challenges (diet, itchy skin), but I'm very hopeful.

I'd very much appreciate the insight of those who've gone through this. What was the process like from the time you got "the call" to post-surgery recovery? I'm trying to manage my expectations and do all the right things so I have the best chance of a successful transplant. Thanks!

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First off, I would say read all you can from your transplant center. Most places will give you packages of what to expect. The surgery is a big one and recovery may take some time. But in the long run, you will feel wonderful, much better than you do now. Even though you don't realize that you actually feel sick. Because kidney disease is a slow process, you get used to feeling unwell and don't notice any more.

For the first 6 weeks or so after surgery you will be limited in what you can do (lifting etc) but you will be able to walk and it is good for you. It will also take some time to get used to the drugs and the constant blood work.

The first year post transplant is full of paranoia. You worry about your labs, about infection, about all sorts of things. This settles down after a while. Don't forget to religiously use your hand sanitizer and this will help keep infection at bay.

If you have any specific questions, feel free to ask. Anything you are particularly worried about? I'm sure I can help.

Cora
Cora, thanks so much for your reply. I am indeed studying all the materials in the binder given me by the transplant center. I'm very much looking forward to feeling better - I'm aware every day of how lousy this is. I'm looking forward to taking fewer meds, and no more needles! I also can't wait to have the energy to do more walking.

My immediate concern is the surgery itself. Did you get the combined p/k transplant? How long was the incision? How much did it hurt afterward? Were you able to be up and about a bit the day after, as they're telling me is the goal? Hearing about it from someone who's been there is vastly helpful -- thank you so much!
Everyone is different. I had my kidney done in 2002 and had some problems. I was in the hospital for 3 weeks. Average hospital stay is about 5 - 7 days. I did the pancreas in 2008 and was out of the "clink" within a week. In both cases the pain was minimal. They give you a pump and good drugs. No problems. I was up the next day after the pancreas and eating normally within 2 (I normally have a ton of stomach problems due to the sedation).

Depending on your center, don't be surprised if you are not off insulin right away. Mine was very conservative (U of Minnesota in Minneapolis) and they kept me on small doses of insulin for a while after to take the pressure off the new organ. You are going to have so much fun watching your creatinine come down. Whee!

Don't be surprised if you are on a lot of meds, especially at the beginning. You will be on higher doses of the anti-rejection (those come down with time) anti virals, anti-fungals and anti-biotics. So it is a lot of stuff at first. You may get off whatever bp meds you are on.

Hope this helps.

Cora
Just wanted to add that if you are looking for a large collection of k/p transplants for advice, visit http://www.transplantbuddies.org/tbx/messages/7/7.html It is the kidney/pancreas transplant board and you will get a lot of experience in addition to mine.

Cora

I"m glad you posted this question. I"m about to go up in the morning to the transplant center in Salt Lake City, UT for tests and such to get the approval for a transplant. I'm scared to death! I hope tomorrow brings much relief and many answers to calm my fears!

Hi Andrea,

Wow, congratulations on being listed for transplant it's the most wonderful thing that could happen. I had my kidney transplant 1/15/2010 with my sister as donor and my pancreas on 5/2/2011. Having a new kidney saved my life and I can't tell you how that feels, it's just an emotional experience and having a new pancreas after almost 30 years of type I diabetes has been so amazing and life changing. I haven't needed any insulin since I took off my pump in the OR just before my transplant. Having CKD, you should be used to taking a lot of meds and having a transplant means you always will but you will trade off some for others and discontinue some after a few months and taper others down to a manageable dose. Everyone's needs are different and some side effects are manageable and others you may find too much and have to adjust med doses or meds in general with your nephrologist.

I had little time to be nervous when I got the call for my pancreas but my kidney transplant was planned and I was fine until a week before and I was so anxious I actually had a panic attack. You will do fine and the surgery is very routine now. Blogging like you're doing is great too. As other's have commented, you should get all the knowledge you can about the procedure and your choices. When things get scary just remember to breathe and reach out to your support network (friends/family/bloggers etc)

My kidney scar is in a sickle shape on my left lower abdomen and is about 2" long down to the pubic bone. It's back to being flesh colored and barely visible. My pancreas scar runs from the top of my belly button down to about the same place but it starts higher so it is about a 1/2 inch longer. It has also lightened in it's color.

After the kidney I was walking on the second day. For me, the hosp bed was so uncomfortable that is was causing me back pain more than anything so I was eager to get out of bed and walk around. I would walk the whole floor a few times in a row after a few days of building up stamina. And I wasn't alone. Everyone else on the transplant floor was doing the same. My sister was discharged after three days and I went home after five. I used pain meds for a few days as needed after going home but narcotics by themselves cause constipation but combined with anesthesia from the surgery made things very uncomfortable and even painful. I wish someone had told me before, to establish a good plan for the constipation that lasted several weeks. They will probably send you home on a stool softener and that may be enough for you but you may find you need to play around with a combination of over the counter remedies a few times a day to get you back on a good bowel schedule. And honestly not the type of stuff you really expect to be blogging about but truly I wish I had been warned. I had an ER visit shortly after transplant because I thought I had an abdominal obstruction from the surgery.

I wanted my own pillow at the hospital so I planned to bring it. Transplant floors don't like a lot of stuff from home because it carries lots of germs. Since you should be planning on having a suitcase at the ready should you get the call in the middle of the night, You might want to buy a new pillow and keep it in it's original pkg and after you do the laundry, reserve a pillow case and put it in a ziplock bag and pack that too. Just in case, you can say "these are new/clean and have been protected from germs" A smiley face works too. That goes for stuffed animals too. I'm a big kid and I wanted a particular lion. My Mom washed it. It got ruined so don't bother just ask someone to bring you a new one when they come to visit since you can't receive flowers or plants anyway. You can get them once you're home but not permitted on the transplant floor.

Overall, my pain was minimal. Pancreas was easier and faster healing than the kidney although they warned me of the opposite. I have had a few admissions since for viral infections but you have to play it safe and when you feel like you're getting sick you first have to rule out a rejection so don't take any aches or pains for granted. Now that you'll be on immunosuppression you will be more prone to infections, it just comes with the territory. There are long term side effects to all of the meds you'll be taking but they are necessary to keep your new organ/s. Having the new kidney will save your life and keep you off dialysis and hopefully you'll get the call before you ever need dialysis most transplants do much better if they are done preemptively. And a new pancreas will prolong the life of your new kidney and get you off of insulin. It's really an incredible journey. A scary one in deed but a year after your transplant you will look back and say "why was I so nervous? this is the best thing I ever did"

Keep us posted on where you are on the list and throw out more questions as they come up. We are all here to help.

Tina

Andrea,

The best advise I can give you here, is to take Cora's words to heart. She helped me tremendously as I prepared for a kidney/pancreas transplant (ultimately I received a kidney from my brother, and am in the process of deciding if I want to continue on the list for a pancreas, which I will probably do). But Cora found the blog I started (http://michaelburketransplant.blogspot.com Life On The T List), and has been a tremendous source of support and hope ever since.

Michael

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