Last night I got news that the kidney transplant center I was planning on using, if I was approved, has voluntarily put their program on hold pending a review of a couple of their cases by UNOS. I was shocked and it left me feeling a little unsettled. Questions like why are they being reviewed? When will the program come off hold? What is UNOS? The main issue is it is the closest center to me. An hour and 45 minutes and after that I'm looking at 2 and half hours away. I am on the hunt for another center while finishing up the tests requested from the first center in case things are okay and I am approved and want to use that center. This journey I know will be filled with so many emotions. This made me feel like I had lost a diamond out of my crown, something precious, but I know there are other scenarios to my getting accepted to a center so with a deep exhale I'll keep moving forward, maybe to come back to that same diamond or maybe to move on to another center which might be my crown's emerald, my favorite stone of all. Who really knows.
I have shed some tears this week talking about all of this. I am slowly telling my circles of friends and it's been a little hard to tell and also receiving their reactions. I don't want them to feel bad but I know if they were going through this I would be emotional about them too. I love jewels so I'm going to keep it going. My circles of friends and family are important to me and my work family too. They are like a handful of rubies, they sparkle, they give me joy, they make me cry when I lose one of them- maybe we grew apart or just don't get to see each other any more for what ever life circumstances arise- weddings, moving away etc. But it's honestly draining sometimes to cry so much.
In the end no matter what. If my crown is jeweless I will still feel radiant because you never never know when you might find a jewel.
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HipHopQueen
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Wow that was beautifully said. My prayers for you. I know of someone who had to take a flight with a stop over and still made it in time for the transplant when the call came. So it’s okay to be enrolled in a center that’s not nearby or in more than one center.
Also I think you can transfer your wait time to another center in UNOS. So you should be covered on that count too. Do please check.
Finally, I agree that it is “draining to be crying so much” as you said. So do you have access to counselling? It may help.
Thanks SN23. Luckily I have a good counselor and a great psychiatrist. They are both immensely helpful. I will check about the UNOS info. 🙏🏾To you as well.
Hi , Your Majesty,Hold on, even if your locations is down for a bit, doesn't mean forever. UNOS is United Network of Organ Sharing. If they closed down your location, it might be a good thing for you not to have them. If they got a complaint, even if it is unsubstantiated, they have to go "on hold" pending being cleared. Its healthcare.
You said you are finishing up your tests. That evaluation process takes a while and then your are wait listed anyways. So you have time. Do you have a donor or are you going on the " list". Most lists are at minimum, sad to say, two years OR MORE. My local med center is 6 years.
So maybe by the time the test, eval and such are done, the center close to you will be back open.
I LOVE your attitude ❤❤❤❤ I hope you can keep it up throughout CKD.
I wouldn't worry about that. I've been assured that if I get word I have 6 hours to get to the hospital that will transplant.
I live in central SD in a very rural area. If the call comes I have 6hrs to get to the UofM in St. Paul Minnesota. Pretty much a 6hr drive. There are flights, only one in the morning & one at night. Convenient if your working, not if your chasing down a kidney.
Damn. I'm Debbie downer🙎.
I started out simply wanting to reinforce your positivity & ability to count your blessings. You didn't lose your diamond, it's just out getting polished for better things ahead.
I love love love your last few sentences thank you. I'm going to try to keep a positive attitude but I know I will have down moments through this all. I just hope I'm surrounded by love, positivity and good doctors and nurses.
I think I would have a lot of doubts in my mind now regarding that transplant center. A center that has poor outcomes or has some other issues I would be afraid to use that center. After every thing you have gone through you sure want the best possible result when you do get the CALL.Before I had my transplant I was listed at 2 different centers.
I told my doctor about center. He said wait and see if it comes back on line and said if it doesn't he would refer to to another center. One no one has mentioned and I'm not sure I feel comfortable with. In this journey there are a few things I don't want to settle on and the comfort and trust I have in the center is one of them. The other was I didn't want to be treated negatively by anyone involved with me. I've been in situations before where I felt talked down to and I won't stand for it now. But so far I've been met with kindness.
Good for you! It is so important to be your own advocate. I'm with you - I hate doctors that I have had over the years and talked down to me.I am now 22+ years posttransplant, and it hasn't always been an easy journey! I now have a fantastic nephrologist and a PCP, that I have nicknamed "Dr. House." Remember that TV show?
HipHopQueen, keep moving forward as all stated below. Sometimes there is a delay but not a denial in our process. We support you on your path. Those jewels are yours and no one can take them away. Shine on! BB
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