musings on a pre-emptive transplant

[jatopa]

...so...in two weeks I will give my brother a slightly used kidney.  Because this is a preemptive transplant, there is a sense that he is being pushed into surgery sooner than he would like.  All of the specialists, and I agree, that he will do better with the transplant while he is reasonably well.  We do not want to watch him fall off the cliff, then work to recover him back to a level of health that would allow surgery.  People on dialysis before transplant typically feel much better after the transplant.  It is quite possible that he will feel worse, because of the immunosuppressive drugs.  He keeps saying "I feel fine"...and yesterday, our pre-op day, we had a day of people telling him..."no, you don't, you just don't realize it." 
He laughed a bit as we left the medical center, saying..." I THOUGHT I felt fine...guess the experts know better!"   He does not discuss his feelings, but I can see how sad and apprehensive he is.
I am so hopeful that he will feel noticeably better after my kidney settles into it's new home.

[ohtobeahayes]

Many, many recipients say the same thing- that they didn't realize just HOW poorly they felt til they woke up from surgery. While their surgery is more invasive and requires more healing, just having clean blood helps so much.  And kidneys do so much more than just clean our blood.  Your gift is awesome and I am SO excited for him to wake up from surgery, all pink. Congratulations and thank you for your beautiful gift.

[Orchidlady]

The normal progress of kidney disease is a gradual decline over a period of time. For that reason, people can adjust fairly easily over time to the downslide and think of it as normal. My husband was on dialysis for about a year prior to transplant. After the surgery, he told me he had thought he was doing well on dialysis. But then he got the new kidney and realized, he was not doing as well as he thought!
Wishing you both best of luck.

[treehugger]

I actually have some experience with this. My husband had the fairly typical long, slow decline in kidney function. He was diagnosed with kidney failure in 2002, when it was discovered he had 30% function. He didn't need dialysis until 2008. By that time, he didn't really feel "sick" yet, but the doctors said it was time for dialysis, so of course he complied.

We were really anxious about dialysis since we had watched it slowly kill a friend, and it's true, it was no fun, but it actually treated my husband's body pretty well, and he never got any of the common infections. So, when, 18 months after he started dialysis, we were finally ready for the transplant to take place, he was more worried about the surgery and aftermath than anything else. Dialysis was the "devil he knew."

After the surgery, DH suddenly felt worse than he ever had in his life. We had a rejection scare after we had been home a week, so he went back into the hospital for 9 days. And his recovery, and getting used to the new meds, took about 4.5 months. So, for those 4.5 months post-transplant, he felt worse than he had at any time before, including dialysis.

I am not telling you to this to scare you, but merely to present a side of the story that's not often told. It seems that most transplant patients feel so much better post-surgery, that all of the hardships (the actual recovery, the new medications) feel instantly, totally worth it.

That was definitely not the case for my husband. But here's the bottom line: at that magical point of 4.5 months post-transplant, he suddenly realized that he felt better. Even good. And very soon after that, he began to feel better than he had in years. More energy, he could of course finally eat anything he wanted. No more edema. All the good stuff that comes with good health.

So, I don't really have any advice, just wanted to share my perspective. I, as the donor, wasn't nervous about anything. My husband was actually quite scared (both for me and for himself). And it turns out his worries were not groundless; he had a really rough go of it after the transplant. But, it did get better. A whole lot better. And truly, life is good for us now, health-wise.

Try not to lay any expectations on your brother about what he should or shouldn't feel (easier said than done, I know!). He's going through a lot and since he seems not to be the feelings/talkative type, it may be even harder in the short term, now before surgery, and for awhile after. But the numbers are in his favor for him to have a successful transplant and then to slowly (slowly) feel better and resume a "normal" life.

My sincere best wishes to you both!

Kara

[smudge]

I know my recipient had a similar experience.  She was on dialysis for 6 months before the transplant because her function suddenly crashed.  Going onto dialysis made her feel quite a bit better than she had but she was amazed at the difference the transplant made, describing it as walking up a mountain in the fog,  not realising there was anything out there.  She came around from the transplant and it was as if the fog had suddenly lifted from around her and in her brain, she felt light as air and there was an amazing view.

Good luck

[Barbara S]

My brothers transplant was pre-emptive.  I done know what caused your brothers kidney failure, my brother has IgA Nephropathy.  By the time he had his transplant, his diet was so restricted and he was taking so many drugs to try to prolong his needing the transplant.  The change I saw in him was nearly immediate.  For me personally - watching him drink orange juice the next day (he was potassium restricted) was so rewarding.  And he did comment - he didnt realize how poorly he felt until he had a slightly used (but working!!) kidney.
Good luck to you and your brother - look forward to welcoming you to the December donor club!!

[jatopa]

I want to thank you all for your support throughout this process.  I appreciate that you have shared your stories with me, both the struggles and triumphs.
My brother is skipping dialysis and going straight to transplant. Many of the people we have encountered at the transplant center assume he is on dialysis and surprised to hear he is not. He has been on a very restricted diet for 5 years or so.  Low protein, no potatoes, you all know the drill.  I'm looking forward to having roast beef, mashed potatoes and gravy with him before 2011 is over.
Thank you all!

[lawphi]

Preemptive transplantwallet longer than transplanted after dialysis.

His function must be bad to qualify for a transplant. Insurance would not cover the procedure if It was too early. 

Trust me, he will suddenly realize how bad he has felt once he has the organ inside him.

[Fr Pat]

     As a number of donors have noted what a pleasure it is to see the recipient able to enjoy a more normal diet, it may be prudent to remember also that a large percentage of transplant recipients who did not have diabetis before the transplant do develope diabetis (temporary or permanent) after the transplant. so some dietary restrictions/precautions may eventually be required. I think they suspect that the anti-rejection drugs cause this. So, this is not to throw a wet blanket over the joy of a successful transplant, but to keep in mind that "eat whatever you enjoy" may not be a permanent status for many recipients. (Also to remind recipients to keep careful watch over their test results in the months and years after the transplant, to be alert for the first signs of possible diabetis, and of course to maintain a kidney-healthful life-style.
     best wishes,
        Fr. Pat

[sherri]

I have to agree with Fr. Pat. What he described is similar to my experience. I donated  4 years ago to my brother, who went into kidney failure rather acutely from Iga nephropathy. He had been seeing a nephrologist for 2 years prior because of microscopic hematuria but either was not educated about a renal diet or did not follow one so his diet was not limited at all. When his kidneys shut down acutely he was put on high doses of steroids to stop the inflammatory process. Steroids often cause a rise in blood sugar so patients become diabetic, sometimes temporarily. After the transplant I noticed he was checking his blood sugar and using insulin. A few months post op he was able to discontinue that as his blood glucose normalized once the steroids were tapered. He still takes a low dose because of his autoimmune disease. Every year my brother comes to Hopkins to meet with his nephrologist and I came along with him. At year 2 (I think), when the nephrologist was going over his meds I saw he was taking Metformin so his diabetes did return and he now is on oral meds and no insulin as of yet. After that, he has been making more of a conscious effort to lose weight (he has always been very heavy) and exercise. He went to Weight Watchers and does better with diet and exercise but still has a ways to go. Healthy lifestyle is important for both donors and recipients and for me always a challenge.
The big change I see is he is not as bloated and uncomfortable as he was the summer before the transplant when he was on mega doses of steroids. The first year especially was difficult to balance the anti rejection meds and their side effects of GI issues and skin breakouts. Hard for transplant recipient to fight small "bugs" that we do. So many recipients exchange the limited renal diet for a life on immuno suppressants which have their own host of issues.

We also did our transplant preemptively so he was not on dialysis. So I guess the big advantage for my brother was not having to go on dialysis  which would have changed his life dramatically. He is able to travel, work, be with his kids and is not tethered to a dialysis schedule. I knew that when I donated, I was improving his quality of life free from dialysis. The "eating whatever he wants" will most likely never come for him, as many of us always have to watch our diets.


Sherri

[jatopa]

yes, I know it will not be "all you can eat" or "rainbows, roses and unicorns" after the transplant!   My brother has been very compliant with the renal diet for years, which I think has contributed to his avoidance of dialysis.  His gfr has been at or around 15 for quite a while.
It is just that his spirits are very down right now about the impending surgery.  I think he sees this as the beginning of the end, rather than a new beginning.  Also, he was in the room when the nephrologist told me that at age 61, my remaining kidney might have some difficulty keeping up, and will not hypertrophy as a younger kidney would.  I know he is worried about me, too.

[dodger]

jatopa, I donated to my niece this last March at age 59 1/2.  This was her 2nd transplant, she has IgA neuropothy as well.  I was at 90 gfr at donation.  Went to 45 and now at 6 months, I am at almost 70% of the 90 gfr that I started at.  My creatinine is below 1.  So, as long as you take care of yourself from this day forward, watch your diet, exercise and keep your BMI within a healthy level, you will  probably be fine.

The donated kidney is doing great as well, the doctors are very pleased for my niece.  I had the same antigen as the previous donor so she didn't have to take more or different meds than she had taken previously. 

You must be a pretty healthy person to start with to be considered a donor in the first place.  Of course, anything can happen, but, as long as we do our part the rest is out of our hands.

Best wishes and congratulations on being a donor,   Janice

[Aries7]

Hi Jatopa,

My Husband also had a pre-emptive transplant. He was diagnosed with chronic glomerulonephritis as a child, so the doctors monitored his kidney function for years. As a child, he was told he would probably need a kidney transplant by age 19. He actually ended up making it to ago 41 before needing a transplant. He was down to about 12 percent kidney function when he had his transplant. He wanted to wait as long as possible, yet avoid dialysis. I know he struggled with it somewhat too, trying to decide when the right time was. He too thought he wasn't really feeling bad enough yet to need the transplant. The doctors told him he was feeling worse than he realized. We finally settled on a date - October 8, 2009. He said he does feel better since the transplant - and he has a lot more energy. I and the rest of the family noticed how much better his color was right after the surgery.

I actually read your post to him tonight. He told me he is very happy that he did the transplant when he did. He still was well enough that the recovery went quite well. He said he is very glad he did it pre-emptively.

I hope this and the rest of the posts help you and your brother and I wish you both the best of luck. If you or your brother have any questions, please feel free to email me. My Husband said he would also be happy to answer any questions for you or your brother if you would like to have a recipient to ask questions to. I know he and I had a lot of questions before the surgery. I was introduced to a co-worker (who is now a dear friend) who's Husband had a liver transplant 10 years ago. It helped so much for my Husband and I to be able to talk to her, as she had already been through something similar to what we were going through. Prior to meeting her, neither one of has had known anyone who had recieved an organ transplant or donated an organ. Please to keep us updated as to how you and your brother are doing.


Best Wishes!
Linda

[Dora76]

Hi Jatopa,

I know there are many on the forum who have shared their stories already (which is the really great thing about this forum!), so I won't go into too much detail about my recipient's situation.  My mom's transplant was a pre-emptive transplant as well, and she never really seemed sold on the idea because she said she felt "fine" too and I know she was concerned about me being the donor.  Like others have said it's possible to feel "fine" even if kidney function is very low.

Kara (treehugger) mentioned that it's often overlooked that some pre-emptive transplant recipients will feel significantly worse after transplant because of side-effects of the operation and the immunosuppressive drugs.  I'm glad she mentioned it, and again it isn't to scare you but I think it's good to be prepared.  Immediately after surgery, my mom's labs were great.  Things were good on paper, and I'm sure she probably did feel different.  But then again, I had never seen her in so much pain and discomfort.  Ever.  It scared us because we weren't prepared for it, and then we had a rejection scare a few weeks later. 

It was a longer road to recovery than we thought, and transplant is definitely a risk.  But when I think of the alternatives, the slow decline, the eventual path to kidney failure, it was worth the risk for her.

Guess we could call those my "musings."  =)

But GOOD LUCK!

[treehugger]

Kara (treehugger) mentioned that it's often overlooked that some pre-emptive transplant recipients will feel significantly worse after transplant because of side-effects of the operation and the immunosuppressive drugs. ... But then again, I had never seen her in so much pain and discomfort.  Ever.  It scared us because we weren't prepared for it, and then we had a rejection scare a few weeks later. 

This is the area where my pre-transplant research failed me. Or rather, my husband and I failed to research enough. I was completely prepared for my end of the deal.

I knew what could go wrong and what to logically expect and prepare for for a donor. That made my surgery and recovery very easy to deal with. However, we were both pretty unprepared for the post-transplant experience for the recipient. Oh well, next time we will know better. And, all's well that ends well, in our case anyway.

Rejection issues soon after transplant are quite common, but are also often fixable. A "rejection" doesn't automatically mean it's permanent, and that the kidney is a goner. There is a large arsenal of tricks to make that kidney stay in there. But of course, when one is in the middle of worrying about rejection, it's really hard to maintain perspective. It's scary and feels all-encompassing. But then it gets better because the transplant team works really hard to make it so.

We are so thankful to be close to celebrating our 2nd anniversary!

Kara