My wife sent the note below to the hospital care team in hopes that someone can provide resolution. With an identical twin sister with a 6 of 6 antigen match we expected the process and outcome to be straight forward. We are hoping that the review and scheduling can be expedited to meet a 5/1 surgery date or earlier. The coordinators are quite defensive saying the process just takes time. Does this seem right?????
"I am very unhappy with how this process is working. My nephrologist said I should start this process in November. That was FIVE months ago. I have taken every single test I’ve been asked to take. I have a living donor with my IDENTICAL TWIN sister who has also done every single test she’s been asked to take. We have a 6 for 6 antigen match. I’m apparently about to be given a THIRD coordinator. We both want this to be scheduled immediately. My GFR is NOT getting better and this process has been incredibly stressful. It may not be stressful for all of you who work in the medical field. However, it’s is extremely stressful for me and my twin sister and our husbands. This seems incredibly insensitive and unnecessary. Five months and no end in sight? There are countless reasons why we want this done immediately, including trips that have been paid for, summer rentals that have been paid for, my twin sister resides in New England in the summer and needs to have this done prior to her departure from Florida. The list goes on. I want an answer. I have a living donor who is willing to save my life and this process is absolutely producing more stress than it should. On top of this, my step daughter, who is a PT, has volunteered her time to help me for the after-surgery timeframe and needs to let her practice know about timing. We need to find housing and need to know timing. We want this scheduled immediately. I cannot put in words how stressful this process has been. It’s so unnecessary, unkind and unwarranted. "
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alperk
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Has her sister actually been approved to donate? My living donor's evaluation took time (she had to take iron for months to increase her hemoglobin), but once she was approved the transplant was scheduled a few weeks later. Perhaps you could try calling the transplant center director to find out what is going on? Could her nephrologist help? What your wife is going through sounds terribly unprofessional and, as your wife said, stressful and unkind. I hope the situation can be resolved quickly.
It took longer than I ever thought possible to get to transplant. The transplant team took their time and did not ever give me any hope or option to speed things up or do it at my convenience. I learned to make no travel plans and be very vague with my work about when it might happen. I work as a medical professional and since COVID this is how it is in every area of healthcare.
I could feel your stress as I read your post. It’s not easy waiting this out.
For me the stress heightened as I waited for a deceased donor kidney. Once my kidney came the stress was very low for the first few months. However, as we ran into problems with severe low white blood cell count and CMV (I was CMV- pre-transplant but my donor kidney was CMV+ so I picked CMV up from my donor kidney), my stress began elevating .
Unfortunately my transplsnt center team couldn’t figure out what was going on with my low WBC and the endlessly recurring CMV. This went on from February 2023 through November 2023. They became extremely defensive and difficult to work with over those months.
I finally put my foot down and demanded outside consultation. That led to a shift in my anti rejection meds. That shift caused my CMV to test “not detected” for the first time since late January 2023. I knew we were on to something. But my transplant nephrologist did not agree with the discontinuation of Myfortic ordered by the infectious disease dpecialist. My nephrologist immediately reinstated Myfortic. The CMV began testing abnormal again immediately. My CMV battle raged on for several months.
After 4 more rounds of active CMV, I demanded that my nephrologist pull me off myfortic to get the CMV in check. I indicated that I expected her to develop an alternate treatment plan that would protect my donor kidney while keeping CMV in check. I added that it was well past time for them to do more testing to figure out what was causing these highly unusual results.
She ran additional tests some of which checked for other blood based issues. I was diagnosed with T-LGL leukemia in early December 2023. So now we know what’s been causing all of these issues.
I now see a hematology oncologist. He confirmed in my first appointment that he would have pulled me off Myfortic if that hadn’t already been done. I didn’t tell him that I had had to insist that they pull me off it… He has explained what this type of leukemia does and how it is treated. They typically treat it with prednisone and an anti rejection medication as well as blood transfusions for anemia. As he pointed out, I’m already taking prednisone and Tacrolymous. When my data gets low enough he’ll first try increasing dosing in one or both. This will be done for short periods of time (6 weeks or slightly more). But right now my data is strong so no treatment needed. Labs every 4 months to keep an eye on it. Thankfully, this type of leukemia progresses very slowly…
Bottom line? Self-advocacy is critical. Something to keep in mind; doctors don’t know everything—they do make mistakes. Vigilance is necessary.
Sadly, I had a very similar situation in the runup to my transplant. Live doner, processed for months (not treated well and eventually rejected for psych reasons), poor communication & evasion (so it seemed to me). Now I'm 6 years post and alive when I should be dead, so it all worked out. But I feel your wife's anxiety and frustration.
The only thing I can add to what others have said, is the twin sister needs to call her coordinator and ask about the situation. If there’s a problem on her end, no one is going to tell your wife. (HEPA laws)
The twin should ask if there is something she needs to do or can do to get things moving. If not, then ask what is the hold up.
Way to go that she is standing g up for herself! I had a stranger give me my kidney. We did testing in January of 2019 and that May I received his kidney. My date did get changed a couple times and twice was because of me. One date was my twin girls birthday and unfortunately I had to think about everything which was if I would die I wouldn't want it to be on their birthday and the other was the date of my dad's death I just could do it on that day. Now I have had other surgeries after my transplant done at the same hospital and they dragged their feet giving me a surgery date. Once they called me at 2 pm to tell me what time to be at the hospital in the morning for my surgery! I have one more surgery to do was supposed to be done last year. I went to all my different doctors to get clearance, paper work filled out, blood work, chest xray, and mri to be told they couldn't do it tell February of 2024! So now it's March and still no surgery. Just keep pushing to get it done, call and email daily!
Where I had my transplant (U of WA) they only scheduled living donor transplants one day a week, so it took a few months just to get on the schedule, once all the tests were done. Hang in there. It will happen.
I feel for you. Both you and your wife have been through a lot - especially having pulled everything together so nicely for a seamless transplant. Sadly, sometimes it's hard to urge action on another unless they want to listen and then accept it. For those of us in this community, we understand your wife's reaction to being largely ignored. Our way of handling matters was to speed things up by simply moving on. Here's our story. My hubby was placed on emergency hemodialysis at age 70. In the middle of adjusting to that, we we went to the "nearest" transplant center, got the tests done, waited for the transplant center panel to convene, and received approval. During that process, we were told that the wait would be 3+ years for a deceased donor kidney, even for a kidney that had issues. That was unacceptable to us - we were acutely aware of my hubby's age and time only moves forward. We had no living donors available. So we decided to double-list at a much busier center two hours away. He was immediately accepted there, the centers shared labs and health reports, and hubby was given a kidney at our newly discovered center after only 6 months or so of waiting - exactly one year, not three, after starting on dialysis.
So, bottom line, sometimes it's simply easier, quicker, and smoother to look at alternatives. Yes, one can wonder if a center's policies or procedures are right or wrong, whether their attitudes are caring and loving. But we couldn't wait. We are forever grateful we moved on - quickly. My hubby is coming up on his 3rd year kidneyversary in June. If we hadn't read the tea leaves, I'm sure he would still be on dialysis today. So please consider all avenues - fighting back is one, moving on is another. Sometimes one decides these things on an emotional level (I'll persuade them!) or on a logical level (wait time, surgeon availability, number of similar transplants performed, outcomes, etc.). Indeed, one can start out with one approach and move on to another if needed. Or totally skip one for the other. Just keep an eye on the clock. It's relentless. I remember setting out on our new path - doing the research - one center at a time. Wanting details. Now, it's so much easier. If you want to see hard data on what's out there, here are two sites that give comprehensive info on centers across the US. The last one also gives great information if you need to fly to a center. These two sites are worth gold, in my opinion. And always remember - a center can make their decisions (or make none at all) but so can you. Just stay focused, stay purposeful, and keep an eye on the goal. Wishing you all the very best in planning your next steps. You, your wife, and sister are warriors and you've done so much already. You deserve a wonderful outcome.
I found the two links you shared to be invaluable as well. Like your hubbie’s situation, I was also very mindful of time matching on. Recovery can be harder when we’re older. As our bodies age, particularly those of us in our late 60s or early 70s, we are at increased risk of developing other medical issues. Both age and our CKD add wear and tear to our hearts and other body organs. So, yes, I felt time slipping away as I was waitlisted. That heightened my stress levels as the wait continued and I aged…
Regularly I remind myself that the transplant center doctors and nurses are human. They get tired. They come to work with minimal sleep after staying up with sick children, etc. They don’t always understand what is happening with our medical data if problems arise. It would help so much if ttey would adopt a team approach to patient care. Sadly that is rare across medical facilities.
Ultimately I’ve got to live minute by minute, hour by hour, day by day with my new normal. In short, my doctor’s don’t.
As I move into my 15th month post transplant, I have gradually and intentionally begun taking control over the chaos all these medical persons have introduced into my life since the transplant. My renal function has been so stable and strong throughout. We now finally have the CMV in check. So it’s time to cut back on these unending lab and doctor appointments. I’m not only beginning to spread the appointments out some with the goal of no more than three appointments a month as compared with 10-12 a month. I’m also requesting telemedicine appointments when possible. All of this is greatly reducing the stress I’ve been experiencing. Of course if I experience something out of the ordinary I’ll call the appropriate physician’s office. But it feels as though it’s time to pull back on all of this—let this calm down. Give myself the luxury of time to just take a breath and relax…
Yes, to all what you're doing. So often we forget that we, too, can have decision-making powers. While we may not own the seas, we are the captains of our very own boat. I'm glad you're making your way out of the storm into a peaceful harbor. You've been through a lot. So very happy you're seeing way clear.
Just saw my primary care internist for my regular 6-month check-up. He’s thrilled with my labs and so forth. He has also already interacted with my hematology oncologist to be brought up to speed on my T-LGL leukemia. Like my oncologist, my PCP believes the kidney has weathered all of this well and is stable. He’s gearing up to keep an eye out for respiratory issues and the like that could evolve with the leukemia. It’s clear that he’s working hard in support of the oncologist. He, too, is hopeful that the transplant center is ready to turn me back over to my regular nephrologist. He also was glad to hear that I’m retiring. He knows this has been a lot to manage while working full time, living alone, and not driving due to an unrelated visual impairment. As he said, I’ll have time to relax and get fully back to my normal exercise routine…
I'm ecstatic hearing this! High fives! And I love that your primary, in particular, is caring for you, cheering on your retirement and more. Everyone deserves a person who cares for aspects of your wellbeing. He's there for you! Nothing to worry about! It's definitely time to slow down the appointments and commitments and to treat yourself (and doggie) to a nice, peaceful chapter in life. That is what we all need.
Yes, it’s time to retire. I’ve got 7 weeks left with spring semester and then a 6-week summer session. I’ll officially retire in July 3, 2034. My last day teaching will be June 28th. I currently sit on faculty senate among other things. I have two more full senate sessions and three more senate subcommittee meetings. They have begun transitioning my advisees to other faculty so I’m just answering questions as they arise at this point. Work is definitely winding down.
I’m working with a medical insurance advisor recommended by the transplant center. He’s waiting on my HR person from campus to complete a form. Then he’ll file the requisite paperwork to start Medicare Part B and a supplemental policy.
I’m also working with TIAA to have my retirement set up and distributions starting in August 1, 2024. That’s been a bit more complicated as I’ve worked at several universities over my career. It’s definitely a good thing I have guidance from a financial advisor.
One I have my medical and retirement set, I’ll be ready to fully embrace retirement. Most of my colleagues have already retired… Not much longer before I’ll be able to do so as well. I’m looking forward to it!
Everything is falling into place for you! I suspect you're going to embrace having less to do - less appointments, less commitments. Interestingly, when I stopped teaching, a number of my students stayed in touch. Maybe that'll happen to you too. I now work on a newsletter and participate in activities in our local community and also do outreach for a local farmers market. And I love to support our colleges by going to their theater and music performances. I've toyed with doing structured things involving the schools, shelters, hospitals, etc. But I apparently like being a free spirit - doing things in the moment or on my own time. I didn't realize that until I retired. Lol. For some, retirement means doing absolutely nothing for a while - one of my colleagues declared she wasn't going to get out of her pajamas for 3 full months. For some, that's the way to go, lol! You're getting all the important matters out of the way and that's all that needed right now. Retirement will be a great chapter of life for you - discovering lots of things about everything. And your health will love it too!
Yeah, I’m hearing from quite a few of my former students asking me to co-author books with them, work on research projects with them, work as an outside consultant on grants they are directing and so forth. I’ll be able to stay as active as I’d like while retired. I’m also exploring some virtual volunteer options. Hopefully I’ll begin to feel and function well enough to be able to do some traveling too. Time will tell on the later issue though…
At the moment I’m focused on getting everything set up well, particularly with health insurance, to transition into retirement smoothly. Of course it’s typical for me to focus on getting my ducks in order financially first with major transitions like this. July 3rd isn’t too far away at this point.
I think it’s a reasonable letter to write. I have also been told it’s a process, and usually takes four to six months.
They have other patients remember.
Having said that, I highly recommend going to the Mayo Clinic in Phoenix Arizona if you can afford it. I was evaluated in December and put on the list in April. Meanwhile my living donor took maybe two months to be tested and rejected.
Um, I’m a little concerned that you are trying to schedule a kidney transplant based on vacation schedules. This surgery comes with so many risks and complications.
Have you had your meetings at the transplant hospital with social workers, finance/billing, pharmacist, dietitian and etc…
Has the hospital received all test results and records from your dentist, mammogram, Pap, EKG, PCP and etc…? All tests/screening must be within a year of surgery.
I completely understand your frustration, but this whole process is quite complex.
Perhaps you could schedule a sit-down or zoom meeting with the transplant coordinator.
I wish you the very best! This can certainly be stressful for all involved.
Thanks for your comments. Yes we went through all that stuff and thankfully we are two weeks after the transplant and my donor daughter is feeling great and my wife is also feeling great.
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