Am I making the right decision?

[tigtink]

After my jump in creatinine in the beginning of the month my nephrologist apparently contacted Toledo and they claim he recommended that I go active again on their list. He never told me that, probably because the second round of blood tests came back much better. Now Toledo keeps calling me to try and get me to go active again. Their cardiologist has called twice to try to convince me to go for a cardiac clearance, even though I told them I was on hold. The scheduler at Toledo has called twice to try to set up a re-evaluation, even though I got the letter saying I am on hold. Today the coordinator called to verify I still wanted to stay on hold. She even said they have reduced their weight requirements and tried to convince me to go active again.

I won't know until the next round of blood tests whether my kidneys have actually worsened or the one result was just a fluke. I made the decision to go on hold with Toledo for many reasons: their strict weight requirements, how difficult they have been to work with (many requirements like the annual cardiac clearance and even difficulty gaining access to my blood tests results), the rude and demeaning surgeon who suggested bariatric surgery because I was 20 pounds over their weight limit, and the 2 hour drive that would be treacherous in the winter. There was also an issue where they put in my chart that I had peripheral artery disease that I have never been diagnosed with based on "specks" in a CT without any further tests "Just to be cautious," she said, for the regulators. Even if my function starts declining, my average creatinine over the past year has been 2.8 gfr 17. I know things can tank pretty fast, but I could also go on like this for a long time yet. Wisconsin does 4 times as many transplants every year and has better outcomes, and my sister lives there. By next June I will have reached the average wait time in Wisconsin for my blood type. Unless things go south very rapidly, chances are I can hold out a few more months and hopefully get a call from Wisconsin.

I've thought this through, talked to my family and friends, and made the decision to go on hold at Toledo. Better someone in greater need get theirs then my going against my instincts and getting it there. My gut tells me even a few months on dialysis would be better that getting a transplant at Toledo. I may change my tune if I do need dialysis, but Toledo is still an option if I go for the re-evaluation and cardiac clearance. I was actually relieved not to have to drive there twice for appointments this year (and skipping an unnecessary stress test this year!) and to miss meeting with my least favorite surgeon (my friend has dubbed him Dr. Prick after going with me to an appointment). When I was there last year they had a new nephrologist who just transferred from Wisconsin because her husband got a job in Toledo. She did my evaluation, then walked out and came back and closed the door. In private she all but suggested I'd be better off getting a transplant at Madison. She did not use those words directly, but she raved about Madison and said I would "probably do okay at Toledo" because I have no other health issues. Hardly a ringing endorsement for the program who hired her!

I think I am making the right decision but without a crystal ball there is no way to know for sure. Any thoughts from anyone on my reasoning? Toledo is sure trying hard to get me to get my transplant there!

[Rerun]

Yes, go with your gut.

 

[sahern]

I know everyone is different but with your numbers you might have a long tie to go before dialysis.  After my second year of transplant My kidney started to act up.  They said in a couple of years I would need to go back on dialysis.  Well I made it twenty ore years.  My level would go up a little and stay there for years.  Then it would go up again and level out.  The thing that put me back on dialysis was all of the heat caths that I had.  Hopefully it will be a long time before you need to make a decision.  I would not choose a clinic that I did not trust.  Best of luck

[cassandra]

I agree with previous posters. You can't put your life into the hands of people and or institution you don't trust. Not when you have a choice.


Love, luck and wisdom, Cas

[tigtink]

Thanks, Rerun and Cassandra. Wow, sahern, it's amazing you went 21 years after they said only a couple of years. They seem to know so little about why CKD declines rapidly in some but slowly in others. Their estimates are really guesses most of the time. That makes this such a frustrating thing to deal with. Making educated decisions is hard.

[Paul]

There are no "right" decisions, only "what is right for you". So as others have said, go with how you feel. The only caveat I'd put in that is "how you feel about the action you are or are not taking". Do not let petty annoyances, such as "the rude and demeaning surgeon who suggested bariatric surgery because I was 20 pounds over their weight limit" sway you. Go with how you feel about going active and how you feel about the medical advice you have been given. Just ignore asshole comments.

[tigtink]

Latest labs are in: creatinine 2.74, BUN 50, GFR 18. So the one bad result from last month was a fluke. Breathing a little easier now!

[MooseMom]

"Flukes" are terrifying.  I'm very glad you are feeling better and a bit more secure.