My dialysis center sent a referral to VCU Richmond for a kidney transplant evaluation. I been on the waitlist at Sentara Norfolk for 3 years .
Question how many of you were on more than one transplant list ? Could they use test they did at other center. Any of you had transplant at Vcu how was your experience did your support system stay there with you . Guess I’m asking how long would I have to stay after it is .90 miles away from me so trying to find out if I need someone to be with me for how long . Any other questions I should ask . Vcu call me want me to come for evaluation. Told them I need to find a ride first I don’t drive . They said letter will come I have 30 days to scheduled that letter showing it coming in mail today .
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Beachgirl32
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I don’t drive either. What I would say with regard to support needed post transplant is to prepare for more extensive support so you’ve got it.
When I got CMV from my donor kidney a few months post transplant, I needed to continue weekly lab appointments and regular appointments at the transplant center. This went on MUCH longer than they told us to expect in the transplant education classes. I scrambled to arrange transportation to these numerous appointments for 13 months following my transplant. Things finally began to settle down about 2 months ago.
Similarly, the CMV effected my transplant recovery. I simply didn’t feel well. Intestinal tract isdues were huge. I was also very dizzy and weak. I live alone. This was extremely challenging. Fortunately I have a couple of neighbors who jumped in to help me at home. But I had to hire a house cleaner and another person to drive me to/from medical appointments as well as secure wheelchairs to wheel me into appointments when I was to weak and dizzy to walk.
Had I not gotten CMV my recovery would in all probability have been a smooth recovery. Having a person stay with me for 2 weeks post transplant would have been all I would have needed. I would likely have still found a person to hire for transportation help until I was past the higher numbers of labs and transplant center appointments (about 10-12 weeks post transplant). You might be able to find a volunteer ride share group to transport you to these appointments at no cost or for donations only. But could you rely on them? I felt I really couldn’t so decided I’d have to budget for a driver. I found them through care.con.
Thanks for your input yep I’m trying to line up all the support I can even before I get appointment for evaluation cause I know they will ask . Yeah I thought it was 90 miles away but when I google it it 108 miles and I’m showing different times take one and half to two hours and fifteen minutes to get there . Going to call them to see what I can set up today my son just text me letting me know date he can take me not a lot if dates cause he getting ready to go on his trip to Ireland .
I had to be at the trsnsplsntt try center at 5:30am labs 2x a week for the first 4 weeks or slightly longer post transplant. I then had a doc appointment later that day, typically at about 10:30am.
If I lived as far away as you do I’d have considered staying at a hotel close to the hospital checking in the night before my first labs and checking out the day of my second lab each week. KC t would certaa as inly be less exhausting. You might find special rates for transplant recipients. The transplant social worker may be able to help. Ronald McDonald houses may be an option.
Then you’d be left with 1x weekly appointments for a while,
You should ask when they turn you back over to your regular nephrologist for monitoring. Some centers do that earlier than others if you encounter no complications.
My transplant occurred right before Thanksgiving. That caused a problem with my support team. Most were away visiting family over the holidays. So I had to rely on Lyft to get me to and from those very early lab appointments. This is why I ended up hiring a driver through care.com. It was both less stressful and cheaper. She just dove me to and from my lab appointment yesterday morning. She’s been very helpful snd such a relief to know I can use her as needed so I’m not wearing my friends out! My friends brought me meals and helped with laundry and dish washing until I was back in my feet. They continued to do this over the months I battled CMV.
As I mentioned earlier, I also hired a person to clean my house once a week. As I’ve gotten better I’ve cut back on her help to 2x a month. I’ll probably keep her coming 2x a month as I retire. I like having her do deep cleaning. She changes my ceiling light bulbs as well as other stuff like that that I can no longer do safely …
Wow 5:30 labs I had a person helping me clean one day a week she had to stop for personal reason for some months if she can’t come back will need to find someone . Yeah I found out Uber and lifts can add up fine . I haven’t drove in 20 years after my two brain surgery I was not allowed to I only had one seizure which they think was due to toxins in me wasn’t getting right amount of dialysis they said that a one time thing . So it been five years since I had the type of seizure from my brain surgery . So I may check on refresher drivers lessons I know that wouldn’t help me if I had a transplant but later on it may I told my husband if I pass then that is good if I don’t I tried and will find out it not meant to be .
I was on 2 lists. At that time some hospitals were in the same region. So you had to select hospitals in different regions. One was nearby and the other a 2 hour drive. Luckily I got my transplant from the one nearby after waiting 5 years. Generally in my case each hospital did its own testing for evaluation which meant a 2 hour trip every year. However some tests were accepted by both but rarely.
I was listed at Tufts in Boston and UVM in Burlington, VT, 4 hours from home. I was told Boston could be 7-8 years and my nephrologist suggested I go to VT. I had to do all the testing over again in VT and they even had additional requirements like a stress test. I did get my transplant in 3 years and 9 months there. I had to live near the hospital for 7 weeks, we stayed in a Home Suites with a kitchen. We were able to do that but I get it's not an option for everyone. I would ask if they have any discounted extended stay places they work with.
Thank I know UVA has a place call the Doorway one floor is for kidney transplant people so they don’t get germs it not very expensive I think when my friend was there she paid much asked for donation they even cook meals there wow 7 weeks wasn’t expecting that long of course I’m playing the waiting game now leaving voicemails not able to talk to a person yet to set up eval
I was double listed when I was waiting for my transplant. I was listed at UW Transplant in Madison, WI and when I was also listed later at Froedtert Hospital in Milwaukee they did get all of the test results from UW . I wound up getting my transplant at UW which was also 90 miles away. I know there was a nearby hotel that had mini-suites that I could have stayed at those couple of weeks afterwards. They even gave a special rate for those that were UW patients.
Hi! Sorry can't help with your list style as I am in Canada,but it is likely they will evaluate again if it has been a lengthy time since your last evaluation.
Thank you for your reply I just had to get updated at my local center may 6 . I have to take test every year here so maybe they can use them .thank you for your reply .
I was listed at 2 different transplant centers, 2 different UNOS zones. One transplant center was a lot more willing to accept outside tests than the other.
I live thousands of miles from the nearest transplant center, so driving was never an option. I highly recommend you have someone go with you. Ideally the person who can be your post-op care giver. I needed someone to ask the questions that I couldn't remember and take notes. I can't tell you how many times those notes were a life saver.
With the transplant center so far, you may need to stay close (I was in a hotel for 2 months before I went home). After your your post-op appointments get to be once or maybe twice a week, you may be able to home. A 2 hour drive, even as a passenger can be exhausting.
Being listed at more than one center is called multi listing. You can be listed at as many centers as your insurance will allow.
It depends on the transplant center. Some will accept tests from another center and some will be picky and do their own. You are required to stay close to the transplant center a minimum of six weeks and they want you to have 24 hour care. At first you have appointments at the center three days a week, which include blood and urine testing as well as seeing a doctor or PA. You have to measure your urine output at first, take your blood pressure and temperature twice per day and weigh yourself once each day and write it all down. You will likely be on 10 medications or more. They may change your dose every time you have a visit, you cannot go by what’s on the bottle.
You will be required at some point to either bring that caregiver with you or have them be interviewed via zoom to talk to their social worker. If you do not have a caregiver or prove you can hire one, they will not give you the kidney. Period. Transplant is too hard to navigate on your own and there’s too much of a risk you mess up and waste the kidney. I highly recommend you bring your caregiver to the testing, or at least another person is useful, testing can be grueling.
The one year graft survival rate is a matter of public record and transplant centers live and die by their statistics. The truth is, every center is highly specialized and excellent, but some transplant people who are in worse shape than other.
Most people have as spouse or a relative to take care of them. My sister’s work was more important to her so my good friend of 23 years who is retired took care of me.
I had no antibodies since I had never been pregnant or received a blood transfusion, I am blood type B but chose to received a type A kidney, what is known as an incompatible match. Not every center will do this. Blood type B is considered rare about 12% of the population so what this did was cut my wait time by years.
This carries a higher risk of rejection and even death, but my doctor said it was better than staying on dialysis however ultimately it was my choice. Because I lacked antibodies I will never get T-cell rejection which is harder to treat but I can get B cell rejection.
Average wait time in the US is 3-5 years. Anywhere you go, your wait time starts on the first day of dialysis.
I was listed at two centers, UCLA and the Mayo Clinic in Phoenix, Arizona. I was told at UCLA, my wait for ABO incompatible kidney would be 4 years, and 7 years for a type B kidney. The Mayo Clinic, it was 3-4 years for blood type A and 4-5 for type B.
At the Mayo Clinic I received a deceased donor kidney after only 11 months and 3 weeks on the wait list. I know someone who only waited 7 months. I finished my evaluation and was listed there April 28. I got “the call” on June 11. Mayo does the most kidney transplants in the US. I can’t recommend them strongly enough,
I am now 9 months post transplant. It’s going well except we are having trouble keeping my blood pressure under control, because I take cyclosporine. The first choice drug they use, tacrolimus, gave me a toxic reaction. I also got skin cancer four months after transplant but it was caught early as I go to my dermatologist every 3 months. Immunosuppressants make it more likely you get skin cancer or lymphoma.
Transplant is hard and recovery is not a straight line. It’s hard for them to get your meds right, typically. I know one guy who had a super easy time but most struggle. My center has a post transplant support group once a month over zoom and I love it, those people get it.
It is common to be re-hospitalized for some reason soon after transplant for a complication, I was 53 at the time, I came through the operation well, had no cardiac issues or diabetes. I was sure a complication would not happen to me, but it did. I was transplanted on a Sunday, released on Thursday, I had to be rehospitalized the following Monday. It was a rare complication that carries a 10% mortality rate and they almost had to remove my entire colon, but I made it through.
Often you are put on steroids and gain 15-20 pounds in the first year post transplant. You can find a center that does a steroid free protocol but there is a higher risk of rejection. Steroids can also cause diabetes and 20% of all transplant patients get it if they didn’t have it before.
You can check wait time of all the different centers at a website that keeps track. It’s something like tsxmulitlisting.org. Florida has a short wait, as does Texas Medical Center at Ft Worth, Nebraska, and off course Mayo. Shortest is University of Ohio at Toledo, 8 months.
thank you for all your information my cousin got her kidney at Mayo Arizona’s after only being on the list a short time she actually was blessed got two first one didn’t work within two weeks she got one that work she was Ab blood type . It will happen one day my sister in law think since I’m on a transplant list I must be healthy . I wouldn’t be on the list if I healthy . And trying to tell her transplants aren’t always easy it not a cure fir my disease I have pkd I’m just tired of explaining it to her .
I sent you a chat message. I'd like to add here that we live 130 miles away from VCU. It normally takes us 2+ hours to get there. But that's not unusual. They have patients from everywhere - I ran across a fair number of some patients at that hospital that travelled in from the Norfolk area. And they have the Doorways you can use for extended stays. (You'll need to get the staff to write "an order" to the Doorways to give you a room. It's a place not just for patients but also for their spouses and caregivers. Some people are there for weeks. Our insurance plans (Medicare + Medicare Supplement) covered our visits and exams at both of our transplant centers (Inova Fairfax and Hume VCU). In my opinion, it's important to have a person with you during the initial evaluation, on the day of the transplant and on the day or two before you leave for home - the caregiver will be given instructions on how to prepare food, how to sort the medications, vaccines the caregiver needs to stay away from (live virus) for a while, and so on. (It's important to have someone hearing the same things you're hearing.) I think my hubby was sent home after 5 days. However, he returned for extended stays for a long time due to issues. I stayed at the Doorways when necessary, but also returned home at times to take care of business. No one questioned our arrangements.
Are you saying your husband was sent back to your city after five days . So if he didn’t have complications he would have been able to stay in your town and go there when needed? Oh I callled Vcu today and I got voicemail saying they will return my call in 24 to 48!hour since tomorrow Friday I’m going to call again tomorrow my letter say I need to set up a in person appointment by 4/28 if I don’t my file will be closed I don’t know how good they are in returning voicemail so they will be getting calls from me until I get to talk to someone .
My son is going to take me to VCU he gave me list of dates he can do hopefully I’m able to pick a date .
Thank you for your reply and for your chat appreciate both .
Yes. I believe he was released after 5 days. (He received his kidney over midnight and if you include that night it would be 6 days.) So we hopped into the car and left. Hubby had to go back every two weeks for follow-ups for a time. But he wound up with a-fib and a ureter leak (urine poured through his incision) at around three or four weeks at home. So then that led to more overnight stays at VCU. But please don't worry about this for yourself - a ureter leak only occurs in about 2% of kidney transplants. Just be aware that things "may" happen. And if they do, the transplant teams are really, really good at turning matters around. My hubby is now almost 3 years post transplant is doing great.
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