How long do most people wait for a transplant?
Transplant wait time: How long do most... - Kidney Transplant
Transplant wait time
Written by
Kbelly
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28 Replies
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Hi kbelly…Depends on many factors including a) living/deceased donor, b ) region/country you reside, and c) blood/tissue matching. I’m sure there are many more.
For example, it took 9 months to get a living donor kidney. I even had to switch my hmo to get into the right transplant clinic for me. There were several delays but it happened much faster than I would have anticipated.
Just remember to be persistent in your efforts towards transplantation. In the transplant arena you have to be your own advocate. Plus, there may be ups-n-down. Still, be persistent. And, don’t hesitate to ask lots of questions.
Pm me if you need more info.
I was put on the transplant list on 9/14 and received a living donor kidney on 9/18 of the following year. A deceased donor kidney wait time depends on many factors as noted by the previous reply. Best wishes!
I waited two years. Every state is different. There are a lot of factors. I went plant based, hired a dietician to help preserve my kidneys. I happened to see an article how patients with Hep C could donate their kidney because it can be cured. I signed a waiver to accept a kidney with Hep C and got one within two weeks. I did a 3 month treatment of Mavyret and no longer have Hep C. I just surpassed my 2 year milestone. Wishing you the best!
Hey Kbelly, yeah just like has been said already there are many factors to when you will get a transplant. Just like Dara3351 I also signed a waiver and got a transplant from a hep c individual and have been taking anti viral and anti fungal medication and have not had a sign of hep c in my system. Your health condition and your blood type are huge in regards to when they will find you a donor. Also if you can find a living donor your what time becomes significantly less then a deceased donor. Best of luck to you and I will be praying that you get a great match. If you wish to ask questions or want to talk to someone please pm me and I would be more then happy to give you more information or just communicate with you. Blessings.
Dear Bbelly,
To answer, your question, in general terms....notwithstanding Covid... about three to five years. This is assuming that, there are No 'additional Problems', and you remain 'Well'. Yes there ARE People who had a Transplant straight away, and never needed Dialysis, and those- unfortunate 'souls'- who are still waiting after twenty years. Both, of these are extremes, I myself was 'Bang On The Money' at- almost exactly- four years.
I cannot predict, the effect of Covid, perhaps a Question for, your own Transplant Team. I also cannot answer Specifically For YOU either, as everyone is Different.... However in my, fairly limited, experience- those who were on Dialysis with me- this has proved 'About Right', notwithstanding any Physical 'Problems'.
I hope, that this, has been of Some Help, at least.
AndrewT
Thank you Andrew.They just changed rules of allocation to distance based as opposed to region which is fair.I was developing a strategy involving multi center listing across the country but do nt know how things will change.I’m willing to wait my time as I’m well and tolerant dialysis well but want to move this all along fast as I can.Any and all suggestions welcome and I hope you are doing well with your transplant and continue to
Could you share more about changing organ allocations to distance-based rather than regionally?Jayhawker
I don’t completely understand the old system but I believe kidneys were not offered outside an organ procurement organizations regio are or don’t know how that was done if they were offered outside but last month I believe it changed to kidneys being offered within 250 nautical miles of where they could me from.so if an OPO did not serve may transplant programs in their region(designated OPO region) kidney transplant waiting was shorter.one of the Dlorida hospitals mention this on their website and I’ve read it as a strategy to decrease wait time. From what I understand this has already been done with other organs but I don’t know how it really changed allocations practically
Interesting, I hadn’t heard about this yet. I have an appointment at the transplant center the first week of August. Although, if the improvement in my renal function continues, I’m pretty sure my transplant nephrologist will move me from active to inactive status... So, this may not be all that critical to me at this point...
Jayhawker
So happy you are improving but how and so you mind if I ask which center?
My nephrologist isn’t totally sure at this point but thinks I may have been dealing with chronic dehydration for at least 7-8 years. If so, I was put on medications during that time that would have exacerbated the situation.
In Jan of 2017, my kidneys suddenly plummeted from GFR of 30-32 to GFR of 8. I moved and began working with a new nephrologist. After I was pulled off the two meds causing extreme dehydration, my kidneys improved to a GFR of 11-12. They stayed there for about a year. They then elevated to GFR of 14-15 where they stayed for the past few years. Then suddenly, this past Dec, my GFR was 18. In Feb it was 19. In March it was 20 at the beginning of the month and 21 the last Fri of March. My next transplant labs are due in about 2 weeks. We’ll see where They are then. I switched nephrologist’s again this past Oct. a few changes were made to my treatment plan to deal with Vitamin D toxicity (an extreme case) and iron toxicity (mild case).
The only change I’ve made since last Nov is to drink more water on a daily basis. I’ve followed a modified vegetarian diet (vegetarian including egg whites 4-5 days a week with meat protein 2 days a week—boneless, skinless chicken breast) for th weed last three years. That probably caused the improvement to GFR of 14-15. I also adhere to a low sodium diet; although, I’ve actually had to increase my sodium intake some about 6 months ago, when I shifted to my current nephrologist. When I increased my sodium intake I also increased my fluid intake quite a bit.
I’m on very few medications: auryxia 1x a day and sodium bicarbonate 4x a day; no BP meds and no Type II meds. (I’m a type II diabetic but it’s controlled without meds with my A1C coming in consistently at 5.2)
So, my nephrologist thinks it’s the extra fluid. That has elevated my BP to the normal range. He’s got me drinking about twice as much fluid right now. But it’s essentially an educated guess. Regardless, he is by far the best of the 4 nephrologist’s I’ve seen since diagnosis. For that I’m very thankful. He and my primary care physician work together on my case communicating with each other regularly. That’s another major bonus!
Jayhawker
Your diabetes is controlled beautifully with diet and excercise alone. That is impressive and fabulous! May I ask how did you get vitamin D toxicity? Did you take too much supplement at some point?
My last nephrologist put me on a prescription medication that elevated my Vitamin D, intentionally. That was to deal with what I now know was a very mild case of hyperparathyroid am, a side effect of the chronic kidney disease.
He should have monitored my Vitamin D levels at least every four months. He didn’t check it fir 14 months. By then it had elevated to the extreme range, what I’ve come to call the YIKES range...
It took 6 months fir it to return to the normal range. All of this for a mild condition that did not require or need treatment.
Jayhawker
Sorry to hear that! What are the symptoms associated with high vitamin D? Most westerners have low vitamin D so I hope yours is now at a perfectly balanced level!
The symptoms I experienced were identical to those we experienced when we need dialysis:Nausea
No appetite
Metallic taste
Fluid retention
Itchy skin (really horrible-entire body)
Foggy brain
Mild headache (continuous)
Breathing problems
Irregular heartbeat
Sleeping nearly all day
It was definitely miserable. It got progressively worse over time.
It’s back in the center if the normal range now. It’s steady.
Jayhawker
Here's a free program that will help you have a successful living kidney transplant experience. havingyourdonorfindyou.org
I went on the Transplant wait list 3 years prior to receiving a deceased kidney that had no issues. I was on dialysis for 2 years to the day before receiving the call that I was secondary for the kidney that I received. Several hours later I was called and told I was now the primary (glory be to GOD). That was 3 months ago. I am praying it will happen for you too very soon.
Thank You. I am with the Medstar Georgetown Hospital Transplant in Washington, DC. I was only list there. I know a few people that are listed at many Transplant lists at different hospitals.
I was very lucky, I waited only a matter of hours. Got a phone call from the transplant team letting me know I was on the list that morning at 10am, and I got the call to go in for the kidney at 10:45pm that night.
Wow.what’s your secret? Congratulations hope it serves you long and well!
It was a weird day, once I got told I was back on the list I actually said to my mum that “wouldn’t it be funny if I got the call today” and then later in the day I thought to make a bag up for when I go in to just grab when I needed to, and about 2 hours after I got the call
Be prepared I guess was my secret haha
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