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Donor has questions for donors.
Today Im headed out to do intake for psychiatric evaluation for kidney donation. Tomorrow I see my new pain management team to be evaluated for spinal chord stimulator implants to relieve pain from peripheral neuropathy in my feet. The day after that, I see my new orthopedic specialist about degenerative joint disease in my shoulder. That should just be physical therapy so not a biggie. My recipient feels good right now but the transplant is imminent. Her and my goal is do the transplant first then I can do the spinal chord stimulator and wrist surgery later. I forgot to mention the wrist part. A month ago I got the final injection allowed in my left wrist, which means surgery is the only thing left to relieve the pain when the injection wears off in 7-9 months. So my plan is do the transplant first, recover, do either the wrist or spinal chord after that. Scripps Green Hospital is dragging their feet so much that its jeopardizing the order that would benefit my recipient the most. They wont give me a living donor advocate until the psychiatric evaluation is complete because it was suggested by Mayo when I was going to donate altruisticly last year. So Im on my own for the evaluation. Back to my dilemma. If we wait too long for the transplant, Im afraid too many surgeries in a short time will endanger my ability to donate. If we follow the schedule I have planned, we can do all 3. Easy peasy right? Well, does anyone else have experience in balancing multiple surgeries? I cant do gummies to relieve pain as its not allowed as a donor so I regulate low dosage of pregabalin in order to stay under the radar of scrutiny. Any help would be appreciated.
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@trooperdogg1960 bless you for even considering being a living donor . It is SO needed and SO few have ever even considered it. This is especially significant in your case because it seems that you already have a lot of things to deal with medically speaking.
A reputable transplant center will give equal attention to the potential donor as to the recipient. It is not only to make sure that the match is good but also to make sure that the plan is in the best interests of both participants. For the donor there are many criteria that must be met before moving forward. Each center may have different criteria, rules, regulations, protocols to follow that pertain to blood type, age, other conditions & mental health, medications, relation of the recipient & donor…. Transplant Centers usually have a staff member to coordinate all these things. You mentioned a “living donor advocate”. I’m more familiar with a “Transplant Coordinator” that is assigned early on in the process to keep things moving along and handle questions & concerns (the recipient & potential donor both have one.) You said that it feels like “Scripps Green Hospital is dragging their feet”. That is probably because someone in the system is working hard to make sure that all the “i’s are dotted and the t’s are crossed”. Is there someone you can ask that could refer you to past Scripps Green Hospital living donors? Those people have already “been there done that” and would be a good resource to answer your questions.
Last but not least if things end up not going according to your well thought out plans, do not consider it a rejection of your good intentions. Rather someone thinks it is not in your best interests or it just isn’t meant to be. My hope and prayer is that “your recipient “ gets her transplant in the best time and way possible whether you are the donor or not. Remember that either way she will need your continued support through and after the process.
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7 ReactionsThank you for that compliment. The independent living donor advocate addresses my best interests. After the evaluations my case is presented to the transplant team who decides whether I can donate. With my medical conditions being as they are, I wont be surprised if they say no. Regardless of that, I am doing everything I can to be there for my recipient. A few months ago I found a duckling trapped in fishing line on the shore of the lake I live on. I was trying to get it untangled when a lady yelled from her balcony to leave it alone. I explained my dilemma. She ran down with a pair of scissors and together we freed the tiny baby duck. A few days ago I was on our lake and saw the duck setting on the shore. I took a picture and sent it to my recipient explaining how it was like my present situation. What I didnt tell her was that it was dying from an unknown disease thats killing the ducks on our lake. It may live. I dont know. I may not be able to save my recipients life, but I will do whatever it takes to at least extend it. Here's the duck I rescued.
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3 Reactions@trooperdogg1960 I hope your evaluation went smoothly for you. As @cehunt said, everything in its own timeline. We can certainly have our druthers for how fast to move things forward, but that doesn't mean we will get our way!
My husband was listed at Loma Linda transplant center, then chose to second list at Scripps Green. That is where he received his deceased donor kidney. They were a very caring and professional group of professionals. And, yes, there is a whole gamut of testing done for living donors. A good transplant team is just as concerned/considerate of a living donor's health as they are of the recipient's health.
Ginger
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2 ReactionsI know Scripps is looking after me. Ive heard only good things about them. In 2022 I began this journey as a donor for my current recipients sister who got her kidney from a matching donor. Last year I backed out of altruistic donation at Mayo for personal reasons. The primary reason being I wanted to ensure my donation went to a person I knew who would live a life I agreed with. Now my sons other aunt is in need and so here I am.