Greetings. kidney transplant.

SupernannyN17 said:

HI All,

I would love to hear from other members.

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Hi
I haven't had a transplant but welcome anyway.
If you type "kidney transplant" into the search box at the top of the page and click on the magnifying glass you will find there are a lot of threads on the subject.
Hope all goes well for you and your sister.

SupernannyN17 said:

HI All,

Happy New Year to you all. I have been dipping in and out of this site since being diagnosed with Type 2 diabetes in January 2015. I have thoroughly enjoyed reading all the various posts and particularly love the jokes pages as i think that laughter helps get us through many a tricky situation, and some people seem to have plenty of those!

THis is my first post and i wondered if i might ask a question. I have had kidney disease for many years, (only 1 kidney functions), which has not really been a real issue and just resulted in high BP and regular hospital check ups. Unfortunately, at the last routine check up in June 2016, my kidney function had dropped from 23 to 14 and i was told i needed a transplant asap as, coupled with the diabetes, my health was deteriorating. I did wonder why i felt so much rougher than usual lol. Anyway, i am very lucky as both my sister and my daughter are a good match, My sister is going to donate as she is older (54) and there is less chance of her developing diabetes than my daughter. We are aiming for February/March. What i wanted to ask is, has anybody on here had a transplant as i am not overley worried about the actual procedure and indeed, i am so very grateful that i am being given such a wonderful gift, but i am rather daunted by the life long meds and their side effects. Currently, i am a 58 year old female who managed to lose 2 stone in 6 weeks when i was first diagnosed with diabetes and keep the weight off. So i don`t partularly want to swell up to 20 stone, go bald and grow a beard!! I can imagine coming back to work and people asking who the large bearded new bloke is ha ha.

I would love to hear from other members.

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Hello Supernanny - Sorry to hear of your misfortune, but it's also so heartwarming to hear your sister and daughter are willing to offer you such a a generous gift.

I seem to recall a member @pleinster has had a kidney transplant. @pleinster - apologies if I got that bit wrong!

In my local DUK group, we have two ladies there who are post transplant by some years and are in wonderful health. I was just gobsmacked when they told me they'd had transplants. In each case, they we T1, prior to transplant, so both had a pancreas at the same time as their kidney transplants. In each case, their T1 had gone. They're wonderful women and so full of joie de vivre.

I wish you and your sister all the very best for the coming months, and it would be so good if you'd keep us updated.

Hi @SupernannyN17

My dad had two kidney transplants, one failed after 10 years. The drugs did not result in significant weight gain for him (he already has a beard so can't help on that note). Main side effect he experienced was a slight 'moon face' due to steroids.

Also if you have lost weight due to excreting protein through kidney then you may have to expect some gain.

Your hospital should be able to introduce other people who have had transplants for you to chat to about it.

Good luck and well done on having the chance at an improved life.

SupernannyN17 said:

HI All,

Happy New Year to you all. I have been dipping in and out of this site since being diagnosed with Type 2 diabetes in January 2015. I have thoroughly enjoyed reading all the various posts and particularly love the jokes pages as i think that laughter helps get us through many a tricky situation, and some people seem to have plenty of those!

THis is my first post and i wondered if i might ask a question. I have had kidney disease for many years, (only 1 kidney functions), which has not really been a real issue and just resulted in high BP and regular hospital check ups. Unfortunately, at the last routine check up in June 2016, my kidney function had dropped from 23 to 14 and i was told i needed a transplant asap as, coupled with the diabetes, my health was deteriorating. I did wonder why i felt so much rougher than usual lol. Anyway, i am very lucky as both my sister and my daughter are a good match, My sister is going to donate as she is older (54) and there is less chance of her developing diabetes than my daughter. We are aiming for February/March. What i wanted to ask is, has anybody on here had a transplant as i am not overley worried about the actual procedure and indeed, i am so very grateful that i am being given such a wonderful gift, but i am rather daunted by the life long meds and their side effects. Currently, i am a 58 year old female who managed to lose 2 stone in 6 weeks when i was first diagnosed with diabetes and keep the weight off. So i don`t partularly want to swell up to 20 stone, go bald and grow a beard!! I can imagine coming back to work and people asking who the large bearded new bloke is ha ha.

I would love to hear from other members.

Click to expand...

Hi. As @AndBreathe correctly stated, I had a kidney transplant. That was nearly 2 years ago. I had inherited a condition from my mother, which was diagnosed in my teens. My function dropped over the years to around 8% just before my transplant in February 2015. I was 53 and had never had particularly bad symptoms other than a bit of cramp and the obligatory high blood pressure, but at that point it was dialysis or transplant. My brother had a transplant the year before. Fortunately for me, my sister's kidneys were good and she stepped up to save the day.

Anyway, the staff at Edinburgh University Hospital were first class from the surgeon and his team right down to the ward nurses, and I was reassured at every stage prior to the op. I went in one day and had the op the next with no complications and was feeling fine the next day and out after 6 days in the ward. I did feel a bit rough for a couple of days in that week but nothing to be bothered about at all. It is a big op, but very routine for them. I was put on the normal post-transplant meds (which I am sure you will be too). Prograf (also called Tacrolimus) and MMF (Mycophenolate) are these are the main ones, vital anti-rejection drugs you may be on for life. Prednisolone is a steroid (which I was told can cause diabetes...hence my Type 2 diagnosis a couple of months later...not so far away from when you were diagnosed but in my case after the transplant!). There were other drugs to help resist viral infections but you will only be on them for a few months at most. Trust me, you will be comfortable taking the drugs by yourself when you are supposed to in a week or so. They observe you and show you all you need to know. It will NOT be a problem.

I would advise you to keep a wee record at home of what your meds and prescribed doses are and to change that record each time an alteration to your meds in made by your doctors. It's easy to do and it just gives you a quick thing to refer to. Beyond that, you will be given a we booklet to tick off what you are taking at first, but most of us don't need it after a wee while. The reason for the records/wee tick book is that your meds will change a good bit over the first couple of months, but that's all good...the changes are because the aftercare is brilliant and you see your docs at clinics probably 3 times a week for a few weeks then less and less until its down to maybe a clinic every 6 weeks or less. The doctors keep a close eye on the results of your blood tests and are particularly keen on your creatinine level and your tacrolimus level.Then they adjust your meds to keep these levels where they want them.

Certain drug doses will get reduced right down and some will just stop altogether. the good news is that as we are all individuals, the docs treat us very individually and tweak away at our levels to ensure good function and no rejection.In years gone by. Everybody just got given certain meds at fixed doses and that was that. It's all way more specific now and so transplants can last a lot longer.

You will probably know that the anti-rejection drugs are to lower your immune system so that it doesn't think your new kidney is an "invader" and attack it (which causes rejection). They work well, but because your body is a bit more open to infection with the immune system compromised by the meds...you can get little bugs n viruses more easily. That's why you will have anti-viral drugs too at first. I had absolutely no infections until quite recently and that bug has now been dealt with. I have had absolutely no signs of rejection at all thus far. Even if they do find signs of rejection they can handle that now (9 times out of 10).

Anyway, I could go on for ages and bore you with detail. Bottom line is coping with taking meds regularly is not a problem at all, and generally it only gets easier as your prescription shrinks. I would say that the steroid will increase your blood sugar and you will see this if you look for patterns in your meter readings. I raised this with my doctors. It was being reduced slowly but they decided to cut it right down to a minimum..which has worked. I am only on one of the anti-rejection drugs now along with the small amount of steroid and couple of other less powerful drugs. I have no side effects and never have had. The steroid did not make me gain weight and I already had facial hair! I was never overweight before though. What the steroid did do was increase my appetite..so watch for that. That was fine by me as I never had a big appetite and suddenly things tasted lovely!

You will have NO problem with long term meds. It just becomes routine.

One other thing - ask your doctor about registering for a thing called Patient View. They give you a password, you go online and can see all of your test results in detail and that lets you see the progress at a glance. So no waiting for test results. I get mine within 24 hours of a clinic visit. This can be very reassuring.

So - good luck. Let me know how it goes. If I can help you/bore you with anything at all, don't hesitate to ask. You will be fine. Paul

patient view