My current plan

[tigtink]

If I've learned anything about dealing with CKD and the transplant process, it's that it is filled with unexpected twists and turns and what seems like the best way forward one day can change in the blink of an eye. Everything I do or don't do has risks and benefits, and much of it is beyond my control. That being said, I now find myself with some options I did not expect to have at this point. Last year at this time dialysis seemed only months away and my goal was to get a transplant as soon as possible. Now things have been stable for months, I feel better than I've felt in a long time, and even my nephrologist says waiting a few months is not a bad idea. Of course, all of that could change tomorrow, but that's where I am today.

So I've been doing some research and digging deeply into the SRTR reports on the three transplant centers where I am listed. It's not easy reading the reports and wading through all the statistics, but it is clear to me now that University of Wisconsin at Madison has better long-term outcomes than either University of Michigan or University of Toledo. In consultation with my doctor and the transplant coordinators, I've decided for now to see if I can hold out long enough for a transplant to come through at Madison unless a perfect match becomes available at one of the other centers in the meantime. The odds are fairly good at this point that a transplant will come through at Madison in the next year or so and that I can hold off dialysis until them. Even though part of me wants a transplant tomorrow because I am sick of dealing with the uncertainty and all that comes with being on the list, it makes sense if I am given the choice to have it done with the center that provides the best quality care. Since my sister lives only 15 minutes from the hospital in Madison, I will have someone to help me after the surgery and easy access to follow-up appointments. And Madison is much more flexible about letting me do most of the testing here in Michigan after the initial post-surgery period and not insisting on frequent in-center follow-up appointments.

I am able to move myself a bit further up on the list at Madison by swapping my wait time at Michigan with my time at Wisconsin. I will flip my 33 months accrued at Michigan with my 30 months accrued at Madison and perhaps speed things up a bit. The coordinator is sending me the paperwork now. It won't make a difference at Michigan because the wait there is 5-7 years, and I still have the option of transferring my MI time to Toledo if things go south and dialysis is looming. I will move to the top of Toledo's list quickly if I do so because their average wait for my blood type is only 18 months.

I am so grateful to have any choice at all at this point. It has been an unexpected benefit of the weight loss and exercise I've done over the last year. I feel I am living on bonus time right now so I am cramming in as much good living as I can in the time I am waiting for the transplant. I have learned to make the best decisions I can with what I know at the time and treasure each day I feel well enough to live my life. I know I am very lucky and very blessed, and I also know that my future is still uncertain and fraught with risk. So the wait continues. I'll let you all know how it goes, and maybe my story will help some of you, in a small way, find enough hope to stay in the game. Thanks for being here and for listening.

[MooseMom]

You've obviously done your homework, and you're right in that you are very lucky to have options.

Madison sounds like your best option at the moment especially seeing that your sister lives close by.  I am assuming that she is on board with having you stay with her so that she can oversee your post op care and to provide you with transportation?  Does she have kids or other family members she has to look after, too? 

Just as a general observation, I'd like to say a word about statistics.  The first tx center I listed with did not have the best stats of the three centers in the city.  However, their patient population tended to be the sickest and with the least access to preventative care, so they tended to specialize in particularly difficult cases.  I figured that my boring case would therefore be easy peasy lemon squeezy.  So, it may be worth looking a layer or two below the numbers on the page.  Just a thought.

Anyway, tigtink, we all look forward to what happens next in your quest for a new kidney!  I'm excited and relieved for you!

[Charlie B53]

Transplant is the ultimate treatment, however for many that option comes late.   I am more concerned with your health NOW.   The waiting period with less than stellar labs can cause so much other damage to the rest of the body that may not be such a good thing.

I was so sick and tired of being sick and tired, the leg swelling was terrible.  Ballooned up daily, massive doses of diuretics were not enough.  My legs were near constantly weeping.  I started PD early, my gFr was about 20.  Within a week my legs looked about normal.  3 1/2 years my gFr is now 4.  I think I am very fortunate to have started when I did.   I think I have avoided many health issues by getting my labs to a much better balance.

Just food for thought.   You do not have to be afraid of PD.  It can work quite nicely.






 sp mod Cas

[MooseMom]

Everyone has his/her story.  At an egfr of 15, I felt fine.  I never had edema.  I never was anemic.  My bp was always well controlled with meds.  Compared with how I feel now 4 years post-tx, I'd have to say that the only symptom I felt was fatigue, but depression probably played some part in that.

If you are feeling well in yourself, then go with it.  You can afford to wait as long as your doc is managing your potassium and phosphorus levels (and your bp).

[tigtink]

Thanks for the input. I am making my decision after consultation with my doctor based on my current labs and how well I feel. My last GFR came back at 20, and I feel as good as I have felt in a long time. Yes, there is still ongoing damage to my body from the long-term low kidney function, but that has to be balanced against the risks of the transplant and the fact that transplants aren't guaranteed to last forever. For me, it comes down to quality of life and the best chances of long-term success. A year ago when my GFR went down to 14 I felt pretty crappy, but right now my potassium and phosphorus are normal, the anemia is under control with Procrit, and I have no swelling. My BP is perfect and has stayed low. I go to the pool and work out almost every day, and I have a good life. I still work part-time and my clients are depending on me this tax season. Everything could change tomorrow, and I will reassess if necessary, but right now there is no real downside to waiting.

I agree with you MooseMom that it would not be smart to base a decision on which transplant center to choose based solely on stats. Each center has different types of patients they accept. I just added that info to the rest of what I have learned and experienced at each center, and a lot of it is trying to trust my own instincts. I did find it interesting that even though Toledo does only a 1/4 of the number of transplants U. of WI does, and even though they have much stricter rules on who they accept for their list, Madison still has better long-term outcomes. Even so, none of us are statistics. We are all different. I'm glad I did not listen to the transplant surgeon who recommended bariatric surgery because only 5% of patients lose enough weight to get on the list. I do have a history of beating the odds, but I still try to give myself the best possible chance moving forward.

[MooseMom]

Tigtink, I think you will prove to be the perfect prospective tx patient!  Good for you!  But most of all, I am very glad you are feeling well.  That's ultimately what really counts.

[Simon Dog]

A non-trivial percentage of patients lose kidneys because they don't follow the drug protocol.    Just stay highly motivated to do whatever is needed to keep that sucker chugging along if you get one installed.