Made it onto Toledo list

[tigtink]

The transplant coordinator from U. of Toledo called me today to say I have been approved for their list. I passed the cardiology clearance with flying colors and weighed in 9 pounds less than the weight goal they gave me. I've lost 59 pounds so far this year.

Now, after all of this effort for all of these months, after finally making it on their list, I've decided not to transfer my time from U. of MI just yet. I am feeling well and my numbers are holding steady at 16%-17%, so I don't feel I need to push things and try for a transplant in Toledo in the middle of winter. They are very strict about coming for follow-up appointments at their center after the transplant two or three times a week for the first three months. It is a two-hour commute and winters here make it a treacherous trip when the weather is bad. Of course, if something comes my way either in Toledo or Madison (or U. of MI) in the meantime I would go ahead and figure things out, but otherwise I plan to wait until spring if I can. The average wait for my blood type in Toledo is 18 months and I have accrued 33 months so far at U. of MI. I didn't expect to have held steady for this long. A year ago I thought dialysis was only months away.

It's kind of hard to pull back now after working so hard to get on the list, but it doesn't make sense not to wait a few more months if I can. By spring, I should be further up on the list at Madison and I can decide then whether to go with Toledo. A part of me just wants to get it done and behind me, but I am so much more impressed with Madison, and my sister lives there. At least for now I'm not staring at dialysis any time soon, so I still have a few options open to me.

But I made it on the list!! It took 8 months from the day I contacted them, but I met my goal and was cleared by the committee. It has been a good day.

[MooseMom]

You have my heartiest congratulations!!!  Well done, you!!

My experience with Madison has been great.  I am so pleased for you, that you have options and that you have the time and opportunity to make the best choice for yourself.

Again, YAY!

[Kathymac2]

Congratulations on both meeting your weight goal and getting on the list at U of Toledo!  I second MooseMom, well done!

[Blake nighsonger]

  :beer1;congrats! thanks for the inspiration, that is a good day!

[cassandra]

Well done you

             

[justagirl2325]

Congratulations.  Lots of hard work paid off.

I find it just amazing that before I started down this journey with my husband I just thought people were automatically listed on transplant lists when their organs failed.

[DialysisGoneFOREVER]

Congrats! Just remember to stay healthy or they could kick you off the list.

[tigtink]

Thanks everyone for the encouragement. I too was woefully ignorant of what it takes to get listed and stay listed. The TV shows make it all look so quick and easy. I hope I am doing the right thing by waiting. There are so many variables and uncertainties in all of this that decision making is an agonizing process. But I'm doing well for right now and my instincts are telling me Madison is the better option. I've already had issues with Toledo, including some of their very strict rules, an arrogant surgeon, and having them add a diagnosis to my records for something I don't have and was never evaluated for by a doctor. Their explanation was that they were being overly careful in their documentation of minor issues in order to stay out of trouble with UNOS.   Probably a consequence of the living donor kidney that was thrown away a few years ago by one of their nurses. In contrast, every interaction I have had with Madison for three years now has been positive. They are thorough but reasonable, their reputation and stats rank them high, and the coordinator has been responsive and helpful throughout. Plus I've gotten good feedback from those of you who were transplanted there. I guess I just have to make the best decisions with what I know at the time and trust it will all work out as it needs to in the end.

[Simon Dog]

I found getting listed at Tufts in Boston to be very straightforward.  The only things they required that I did not already have was an echo; stress test; infection disease consult on my vaccinations; meeting with their team members (surgeon, pharmacist, social worker) and the bingo - and email "the committee approved you".

I went inactive for a few months after my other tansplant (hip), and they had to re-present me to the committee to re-activate, and the only other step was them getting the OK from another doc at the hospital who has been following my labs.

I never realized that getting listed could be a hard thing - it certainly wasn't for me.