I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: tigtink on July 04, 2019, 02:17:41 PM

Title: 2nd call
Post by: tigtink on July 04, 2019, 02:17:41 PM
It's been almost two years since I got my first call from University of Toledo. I turned that one down because it had a KDPI of 84, so that was a no-brainer. A year ago I put myself on hold with Toledo after deciding I did not want my transplant there. I am active on the lists at University of Wisconsin at Madison and University of Michigan in Ann Arbor. This month it will be six years since my fistula surgery and I've not had to use it yet. My gfr is holding steady at about 17% and I now have 5 1/2 years accrued the on the list. I never expected to be doing as well as I am at this point, so I can afford to be picky about accepting an offer.

Michigan called last night with an offer for a high risk (IV drug user) kidney. It was very tempting--KDPI of 20--at my age a quality of kidney I would most certainly not be offered if it wasn't high risk. I hesitated, not so much about the high-risk part. I know the chances of infection are extremely low with the testing they have. The transplant center here in Michigan is much closer to me than Madison, but after visiting Madison last month I have a greater comfort level with having it done there. They are a top-notch center, my sister lives 20 minutes from the hospital, and if all goes well I could come back home to Michigan after about three weeks and do most of the follow up blood testing in my home town, with only a few visits back to Madison. I really enjoyed being at my sister's house. She lives a quiet life and is a calm source of support. It would be a great place to recover from the surgery.

Ann Arbor is only 45 minutes away but they are very strict about having all the labs drawn after the transplant at the transplant center. This would mean many trips back and forth, and the friends I have here all have jobs. Logistically it would be more of a challenge. Plus Michigan does routine biopsies at 6 months. I don't see the need for that. I am just not as impressed with Michigan.

I will never know for sure if I made the right decision in turning it down. There are so many factors to consider. I am working on losing the weight I gained over the winter. I would like to be closer to my weight goal going into the surgery. I have passed the average wait time for my blood type at Wisconsin, though I guess that doesn't mean much. But hopefully within the next year or so the right kidney will come along there. It is so hard to make these decisions, so I guess I'd rather be cautious.

Sure has brought home that I am getting up there on the list, though. After all this time, it begins to feel like the call will never come. Yesterday it suddenly became real again.
Title: Re: 2nd call
Post by: MooseMom on July 04, 2019, 03:46:43 PM
All things considered, I think you made the right decision.  Post tx life should not purposely be made complicated.

I am very suspicious of Michigan's demand that you have all labs drawn at their center.  Smacks of profiteering to me.  There is no need for that.

After the screwed up "mandatory" biopsy of KarenInWA's new kidney, I personally would run screaming from any tx center that demanded that procedure.  As a matter of fact, because my creatinine started going wonky, my coordinator at UW-Madison wanted me to come up and have a biopsy.  Fair enough, but after the lab results came back the morning of the scheduled procedure, they actually talked me out of going through with it.  I appreciated that!

I very much like the idea of you being able to recover at your sister's home.  Peace and quiet are increasingly hard to find in today's world.  That period of time right after transplant can be chaotic, so to be able to have some calm during the storm is invaluable.

I trust your gut feeling, and you should, too.   :cuddle;
Title: Re: 2nd call
Post by: tigtink on July 06, 2019, 09:43:11 AM
Thanks, MooseMom. I guess it is hard to give myself permission to turn an offer down after all these years of waiting. I am lucky to have that option, I know, but it is hard sometimes to wrap my brain around it being okay to be picky. My gut tells me to wait it out for Wisconsin because it is a better fit for me. I feel very supported by my sister, and it is reassuring to have a place to go in the immediate aftermath of the transplant where I can just focus on recovering and not have to worry about how to get back and forth to the transplant center. She has a picture window overlooking a bunch of bird feeders in the back yard. It is lovely to sit and watch them. She lives by a park with plenty of places to take walks. Plus I bonded with her new puppy. Animals are so comforting to me when I am recovering from something like surgery.

I guess also there is an overlay of sadness to these calls knowing that someone has died and their family is grieving. Especially when it is a young person.
Title: Re: 2nd call
Post by: iolaire on July 06, 2019, 05:42:57 PM
Be happy for the person who took the call after you.

I think itís best to wait and go with the most convenient transplant center. I was very happy that right before the final call can I moved from a suburban center to a downtown location closer to work, it also worked out the downtown location was more convenient for the initial few months where both my wife and I went to frequent clinic visits.  Having your sister there to help you out in the initial few weeks after transplant will be great and make things less stressful.

About the center who wants to pull their own labs. That sounds like a business decision that is not patient friendly. What happens if someone moves out of driving distance?  Or of someone prefers to work with their prior nephrologist?  Maybe they donít want due listing patients and only want to serve their limited community. Or maybe they just want to insure a future revenue stream.
Title: Re: 2nd call
Post by: tigtink on July 06, 2019, 06:28:40 PM
Eventually Michigan would turn most care over to my local nephrologist, but they require coming to the transplant center two to three times a week initially and at least weekly for the first three months, then every three months for the first year. Wisconsin would prefer me to stay nearby for the first three weeks but then would allow me to come home with only two to three follow-up visits the first year (assuming no big complications). I don't have a reliable car or anyone available to make that many trips to Ann Arbor that first year. I'd rather fly to Wisconsin when needed and know I have a support system in place there, especially since Wisconsin is the better transplant center and won't do a biopsy unless clearly indicated.
Title: Re: 2nd call
Post by: SooMK on July 07, 2019, 08:35:15 AM
You seem to have thought about this and made the right decision for you. The idea of routine biopsies would frighten me off. I would be less concerned about the requirement to use UofM's lab. I have had doctors at two teaching hospitals (Boston, NYC) request labs be repeated because of their greater confidence in their lab departments vs outside labs. Doesn't mean this doesn't jibe nicely with profits though. Your sister's support sounds so reassuring. Wishing you the best.
Title: Re: 2nd call
Post by: Simon Dog on July 07, 2019, 01:30:38 PM
Do not make plans based on the predicted frequency of visits.  I was giving a similar prediction, but thanks to a bout with CMV (+ donor/- recipient) and a neutropenic side effect from the CMV antiviral Valcyte, I am still on the monthly plan and get labs done weekly.  The kidney is holding steady, but the transplant team is very cautious.   I need to get an ultrasound and spleen/liver scan to look for trouble related to the neutropenia, then my following is visit is the Hematology doc; then the Infection Diseases doc and finally the transplant nephrologist .... then home for lunch before I go to the dentist for my routine cleaning.

As to turning down the kidney - I would not turn down a 20 no matter where I had to go to get it, but at least (a) You are not placed on a shitlist and (b) You maintain your position on the waitlist.

As to "high risk" - more risk from a cardiac death donor that takes a long time to die when the vent is turned off or from a higher KDPI.  Modern testing catch HIV infection within days, not weeks.  There is always the risk of rabies and ovarian cancer (a man got it) from even low risk transplanted kidneys.   I believe the statistical risk from "high risk" is something like 1/2000.  I got "high risk" and came up clean on every test they ran except CMV (a kidney is not boosted to high risk because of CMV so that part of my saga is non-sequatorious).
Title: Re: 2nd call
Post by: MooseMom on July 07, 2019, 03:41:48 PM
To Simon Dog's comment, I also experienced drug induced neutropenia that was picked up by lab work don't locally (Quest Diagnostics).  All lab results are/have been faxed to UW, and when Quest saw that I had practically no neutrophils left, they flagged it and contacted my coordinator.  She immediately contact me AND my local hospital, telling me that she'd made arrangements for me to go to the local emergency room.  I did as told, and was kept there for a few days while being scene by all the usual suspects.  Once it was decided that the problem WAS drug induced, I received instructions from UW and was treated at my local hospital with two shots of Neupogen.

My point is that UW is happy for their patients to be treated locally if at all possible.  They also realize that because of insurance constraints, some patients might not be able to get a referral for everything that UW might request. 
Title: Re: 2nd call
Post by: tigtink on July 08, 2019, 01:51:21 PM
I have worked with three transplant centers now, and Wisconsin is by far the most accommodating about allowing blood tests and treatments outside their center, before and after the transplant. MooseMom confirms that with her experiences over several years. I have been on their list for over 5 years now and have returned only twice for re-evaluation appointments. Of course, my coordinator knows I stay on top of the testing, get good medical care here in Michigan, and make sure she has all the documentation she needs. I think that makes a difference in their comfort level about allowing more things to be handled remotely.

With some time to process everything, I'm glad now that I turned down the offer. If I was on dialysis or my labs were declining, I'd probably feel differently, but I have to trust my instincts on these things. Yes, it is unlikely I will get another offer for a 20 KDPI, but I trust Madison to find me a good kidney. My instincts have not failed me yet, so I expect I will know when the right offer comes along.
Title: Re: 2nd call
Post by: iolaire on July 08, 2019, 02:10:39 PM
Eventually Michigan would turn most care over to my local nephrologist, but they require coming to the transplant center two to three times a week initially and at least weekly for the first three month.
This actually makes sense to me.  My center during those same periods would have me in for lab work in the morning and run the labs to the hospital for quick turn around and call back with any medicine changes and the results that night.  There are TONs of tweaks to the medicines initially.

I think my center covered me for the first six months and then were ready to turn me over to the nephrologist of my choice.  Due to some turn over at my old nephrologist's office I went with the transplant team's nephrologist in his main practice outside of the clinic (but sill in the same hospital system and a block away), because he is tied to the clinic I've not had much contact with the center after the first six months.  It was great to land on a nephrologist that is very convenient since I have had monthly visits to the nephrologist for the first 1.5 years, not on every three months. 

I'm very happy I didn't go with the old group who were about 30 minutes from home, so I would have had to do that drive, wait for appointments, then get back home to start the commute to work - instead I stop in on the way to work, wait extra for the nephrologist to come in and then get to work immediately after...
Title: Re: 2nd call
Post by: Simon Dog on January 30, 2020, 07:04:38 PM
was treated at my local hospital with two shots of Neupogen.
There are now two biosimilars that actually work - Granix and Nivestym.   Which one you get largely depends on your insurance.

I've gone without any Granix for 8 months or so, and the supply in my fridge is starting to expire.   The numbers are doing well enough that I don't think I'll be told to keep a "just in case" inventory in stock.

As to high risk - Hep C can be cured, and I wouldn't worry about HIV as long as the transplant center included the NAT (nucleic acid) testing.  I was assured my unit was run through both NAT and the old test.  I took the chance to snag that 33 and won - except for CMV, no infection.