How to find a Kidney

[Ladysingsblue]

How do you go about finding a Kidney donor for someone that has blood type O+ and is not on Dialysis and does not want to be on Dialysis.

64 year-old Male last GFR 11; Coronary Artery Disease; Type II Diabetes

Thank You!

[Jayhawker]

I’m not yet on dialysis and am actively waitlisted waiting for a deceased donor kidney. I was told when waitlisted, pre-COVID, that I should receive a deceased donor kidney in 2 to 2 1/2 years. I’m not sure what COVID will do to that wait time.

Step 1: contact a transplant center for evaluation to see if you qualify for a transplant.

Step 2: If you qualify, the transplant center will actively waitlist you.

Step 3: You can be actively waitlisted at more than one transplant center at the same time.

Step 4: NKF has strategies you can use to seek a living donor kidney which you can try if you are interested in receiving abliving donor kidney.

Jayhawker

[Hidden]

Get registered with a transplant centre. At gfr 11 do regular blood tests because if gfr falls below 10 you start to feel quite sick, don’t be scared of dialysis it will only be temporary until you get your transplant but at least it will clear your body of toxins and keep you alive.

[Bunkin]

I went on waitlist.My friend also started a campaign with pictures and my story. My cousin saw it on Facebook and volunteered to be a donor. She was tested and a match. I’m very blessed to have found someone so selfless. Wishing the same for you

[Jayhawker in reply to Bunkin]

This is great news! Is the transplant scheduled?

Jayhawker

[Bunkin in reply to Jayhawker]

Yes November 13. Assuming bloodwork comes out ok

[Jayhawker in reply to Bunkin]

Wonderful news!!

[Darlenia]

Yes! Some people do get transplants without the need for dialysis. So it's wise to begin now to get on a waitlist at one or more kidney transplant centers. The transplant centers work independently of each other, so their requirements do differ from each other. And it's fine to be cross listed at another center. In our case, our nephrologist wrote a recommendation that he sent to our transplant center, just outside WDC. The center then called us. During our initial visit with our center, a transplant team doctor made it clear that they rely heavily on those referrals to prescreen who they will see. This surgeon told my hubby, "We'd rather give a kidney to a 70-year-old who follows instructions, than to a 35-year-old who still wants to drink and party. According to your nephrologist, you've worked hard in this regard. We like that." My husband's kidneys failed due to Diabetes II, but is now officially on the kidney transplant list at age 71. So it can be done, please don't get discouraged.

Once we were at the transplant center, we were asked us to identify family and friends who were interested in serving as "living donors" - providing a donor kidney to my hubby. Blood type didn't matter. If blood type doesn't match, the "living donor kidney" is simply placed into another person and the person with kidney failure is then be moved to the top of the list; and the very next kidney, when matching, would go to him/her. I offered one of mine but was rejected due to age. Friends and relatives not willing to donate a kidney while living, may be willing to do so upon their own death. This is referred to as a "directed donor kidney" which also helps to move one up the list swiftly. Most of us are unable to procure a kidney from friends and family and rely on a "deceased donor" kidney from someone unknown to them. Generally speaking, waitlists for a "deceased donor" kidney range from A (shortest), to O, to B (longest). Hope this helps. Blessings on your journey!

[Jayhawker in reply to Darlenia]

This is pretty consistent with my experience with the transplant evaluation. Fortunately, I’m A+ blood type. That gave me a shorter wait time for a deceased donor kidney. Also, I live in the Midwest where there are higher percentages of persons who sign the organ donation option on their driver’s licenses. So we apparently have shorter wait times in general than other regions of the country.

As I’ve said several times, I’m still not on dialysis although it may not be long now. I’m also the last person living in my family so will need to rely on a deceased donor kidney from a non-relative...

I was waitlisted at 66 1/2 years of age🐶🐶 I’ll likely be pretty close to 69 years of age when the deceased donor kidney arrives...it will take some time for me to move up on the waitlist. I imagine I’ll be placed on dialysis before the donor kidney arrives. However, I feel fortunate knowing that it should be a relatively short period of time on dialysis before the donor kidney arrives.

Jayhawker

[Darlenia in reply to Jayhawker]

Hi, Jayhawker! I think you might be one of the lucky ones to get a kidney before going on dialysis. You've really worked with your health situation and they see that, I'm sure. Those transplant centers don't follow "the listing" in a rigid way; they can "speed" things up when appropriate. A lot of people hope to receive a deceased donor kidney, it seems. As strange as it may sound, many of us don't want to take kidneys from our children and relatives because we see that they, for genetic or other reasons, will likely have need for both of theirs. And friends and relatives are also watching us go through our troubles and so they suddenly become very protective of their own kidneys too. No quick and easy answers anywhere, it seems. We're probably going to double list with another kidney center to speed things up as our center seems to have a longer list than most. Life is precious. I'm cheering you on, Jayhawker. Please let us know when you get one!

[Jayhawker in reply to Darlenia]

I’m hoping. But this is essentially out of my hands now. I just need to try to stay as healthy as possible and continue to work with my medical team.

Jayhawker 🤞

[KidneyCoach NKF Ambassador in reply to Darlenia]

I'm curious, what do you mean transplant centers don't follow the listing in a rigid way and can speed things up when appropriate. Could you clarify? Thanks Blessings

[Darlenia in reply to KidneyCoach]

At our dialysis center, my husband brought up the topic of cross-listing with other transplant hospitals as ours has a rather long wait. The nephrologist said my husband could certainly do that but, in his experience, our transplant hospital carefully monitors the labs - being very watchful as numbers change. The nephrologist said that for those on PD (our hospital is partial to PD), this watchfulness increases around the 2 year point for potential transplant candidates as PD generally slowly changes in effectiveness around then. So the labs, patient health, donor kidney availability, kidney quality (seniors tend to accept kidneys of lesser quality), blood type, type of dialysis, etc. apparently all play a major role, not just placement on a list. The nephrologist added that in his opinion the "timing" for receiving a kidney wouldn't change much among our current transplant hospital and another one as they pretty much operate the same way.

I'd like to add that we have noticed our medical team, our dialysis center, and kidney transplant hospital are all interconnected (INOVA) and medical information flows immediately to all parties. So what our nephrologist said seems to make sense - that the transplant hospital is quietly monitoring their candidates' health behind the scenes. (I believe the transplant panel meets weekly.) It's also intriguing that wait lists seem to be exceptionally broad and generic - none of us actually receive a number at the outset. So the list is probably the least reliable metric of when one will receive a kidney, in our opinion. Hope this all make sense. It's a complicated world out there.

[Jayhawker in reply to Darlenia]

This is quite different from what I’ve been told by my transplant center.

My center clearly does rely on time on the waitlist as a fairly major factor regarding when you are likely to get a call for a possible kidney.

My center also encouraged those who wished to do so to list with more than one center. They did mention that the Midwest has, in general, shorter waitlist times than other regions due to higher availability of deceased donor kidneys.

My labs, more specifically blood type, were the other relevant data they used to set a general timeframe with regard to when I could expect to receive a donor kidney.

My timeframe was 2 to 2 1/2 years from active waitlisting. I was actively waitlisted on January 10, 2020. Of course that was before COVID. I have no idea how, If at all, COVID will impact all of this.

I do know that my transplant nephrologist thought I stood a fairly good chance of making it to the transplant without dialysis. I’m focused on that goal but am not sure I’ll be able to meet it. However, I’ll give it my best effort🐶 If dialysis becomes necessary, I’ll start PD dialysis.

Right now I’m focused on avoiding COVID while getting to monthly labs as well as managing my CKD as perfectly as possible. I’m still gradually regaining strength from my 10-month ordeal with vitamin D toxicity. So I’m glad I’ve got at least another year before I could begin receiving calls. That gives me time to fully regain my strength.

Jayhawker

[Darlenia in reply to Jayhawker]

It's all quite confusing. Anyway, it's best to speak to generalities. Lesson learned.

[Hidden in reply to Jayhawker]

If the hospital is COVID free then they would be completing transplant surgery as normal. You will need to have a COVID test either 1-2 days before surgery or if you get a call from your transplant center then they will COVID test you just before the operation, take your temperature everyday including weight and blood pressure and keep a diary of all readings, the temperature target is to be below 37.5 degrees Celsius which is 99.5 Fahrenheit.

[Jayhawker in reply to Hidden]

I’m not sure if the hospital is COVID free. I do know that they kept doing transplants throughout our lock down; although, they did discontinue new transplant evaluations for several months.

I have no idea whether they are still receiving the same number of deceased donor kidneys though. Since we’re each staying inside so much more there may be fewer fatal car accidents, etc, thereby fewer available deceased donor kidneys. I have no idea what percentage of these kidneys come from accidents that are less likely to occur right now due to the major changes in our lives. So, I honestly have no idea whether COVID has led to fewer available deceased donor kidneys or not.

Regardless, these are issues over which I have no control. I’m focusing on the things I can control and doing my best with these🐶🐶 Otherwise, I believe the right donor kidney will come when the time is right. I continue to feel most fortunate to know that I qualify for a transplant; not everyone does.

Jayhawker

[Hidden in reply to Jayhawker]

It’s good that the hospital is currently doing transplants throughout lockdown it means that once they find you a kidney there won’t be a backlog of operations, you should get the call and go there straight away to prep for surgery. You’ll be at the hospital for about a week after surgery and will have to visit the transplant outpatients department twice a week for bloods and to see the doctor, so shield as much as you can, stay away from crowds, where a mask when go shopping, avoid peek hours, even if you get amazon deliveries make sure you was your hands thoroughly after touching the box, use antibacterial hand wash and limit yourself to be away from people as much as you can, even after transplant you’ll have to shield for about 6 months.

[Jayhawker in reply to Hidden]

Yes, this is what I’m expecting post transplant. And I’m definitely staying in place other than doctors’’ appointments and labs. I’ve been doing this consistently since last March. I also compulsively wash my hands as well as counter tops, faucets, light switches, etc. I think I may develop obsessive compulsive disorder by the time all this ends🐶🐶🐶

Jayhawker

[Hidden in reply to Jayhawker]

I would also limit who visits you as well at your home, apart from parcel deliveries or food deliveries you should avoid contact with anyone who lives outside your household until the pandemic eases off which it will do once spring arrives, if you get the call for a kidney and you go to hospital and they do a COVID test and you test positive they will cancel the operation and send you home.

[Jayhawker in reply to Hidden]

Yes, I live alone and have not had any company since the pandemic was identified last February. I use instacart for grocery delivery, etc. I follow CDC guidelines. There’s literally nothing else I can do to minimize exposure to COVID. It’s likely still at least a full year before I’ll receive a call for a potential kidney. So, I do my best to avoid COVID exposure and follow my treatment plan perfectly. Then I hope for the best.

Jayhawker

[Hidden in reply to Jayhawker]

Don’t worry too much on the time it takes to get the call, I thought I would have to wait for at least 1-3 years, while fully asleep not expecting anyone to ring I got the call after 3 months, the coordinator said we have a kidney for you come to the hospital straight away. I met 2 surgeons before the transplant, 1 anaesthetic specialist and a young female doctor who took some blood and stuck a big stick down my throat and up my nose for COVID , she came back after an hour and said your all clear, where this gown and start prepping for surgery, I was talking about computers with the doctors and I fell asleep with the stuff they use to knock you out. I woke up like 4-6 hours later with a new kidney in my body.

[KidneyCoach NKF Ambassador]

Oh yes all transplant centers receive information from clinics regarding labs, dialysis treatments, medication every week or so. That is normal.

I just wasn't clear on "following the listing in a rigid way" as there are legal requirements every transplant center must follow or lose their licensing. Also "speed things up? Don't get what that means

Sorry

[Darlenia in reply to KidneyCoach]

Oh! I simply meant "speed things up" if the supply of kidneys increases, if labs show one's situation needs addressing sooner than later, etc. Please note that I used the term "when appropriate" - meaning when it's justified on ethical, legal, moral grounds. As to "following the listing in a rigid way", I was simply trying to make the point that "the list" isn't set in stone. A fair number of people get them sooner, others get them later, etc. Hope this clarifies things.

[KidneyCoach NKF Ambassador in reply to Darlenia]

Okay, thank you. I just want to clarify for everyone that kidney transplants are the only whole organ transplant listings that do not use health status as criteria to give priority for transplant. For instance if you need a liver and your health gets worse and worse your placement on the list is given priority over others. They do this by a point system. Time on list, and other criteria are given points. The more points gives you priority over one with less points. HOWEVER, if you're on the kidney transplant list and your labs are quite poor showing decline in health this will not give you priority on list. This will not give you more points or "move you up" on the list. Kidney Transplant lists are the only ones where your overall general health must be good to receive a kidney. If your health declines your listing status may often be put on inactive status or unlisted.

Kidney transplant lists are usually given points by how many days on dialysis, PRA levels. So let's say someone has been on dialysis 2 years and PRA levels are 35%, age 40, and someone like myself who has been on dialysis nearly 19 years with PRA of 99-100% age 62 and if a matching donor came available for our blood type etc and was perfect for both of us and we were both same age and health I would be the first to be called, not the other one. My time and points (days on dialysis and PRA level) give me priority. If the other person had more health issues making them in poorer and more critical condition the kidney would still go to me. Let's say we both were 62, been on dialysis nearly 19 years but their PRA level was 20%, I would still have priority to receive kidney as my PRA is high making me a more difficult match and would be given transplant opportunity first. Of course PRA, HLA and other matching criteria, blood type, tissue matching etc all come into play, but poorer overall health does not increase chances of receiving a transplant.

Transplant Centers evaluating for a kidney transplant try to weed out people who have a poorer health status. In fact, the worse your health the more likely you won't be approved to be listed at all. They want the healthiest people possible as the availability is lower so they want to be sure the kidney matches with someone who is as healthy as possible in hopes it will last. Deceased donor transplants generally don't last but 1-15 years but there are many exceptions. Living donor transplants generally last twice as long, again with exceptions. Make sense?

Health condition has no criteria or priority status with Kidney Transplant. Often times this is not understood because priority in health status IS given in liver, lung, heart transplants. Since Kidney failure can be managed with dialysis, this criteria does not exist with kidney transplants.

I hope this makes sense and I have not made a mess of explanation. I did serve on the Kidney Transplant Learning Center. Thank you kindly

Blessings

[Darlenia in reply to KidneyCoach]

This makes a lot of sense. In the future, please jump in sooner when you know more than I do. Thank you.

[Jayhawker in reply to KidneyCoach]

Yes, this is exactly what Angela said during my first patient education class as they started the transplant eligibility testing. She said that the waitlist was longer than other organs specifically because we have dialysis, a life saving and sustaining treatment. She also said that because we could live safely on dialysis, those who were sicker were NOT given special consideration. This does, unfortunately, sometimes lead to situations where a person who is waitlisted may pass away while waitlisted.

Jayhawker

[KidneyCoach NKF Ambassador in reply to Jayhawker]

Yes, and currently there are approximately 125,000 individuals on a transplant waiting list. Of those 125,000, about 100,000 are waiting for a kidney. You can see then kidneys are in high demand, while liver, heart, lungs are a small percentage of whole organs needed. Thus of the 100,000 more than 20 on the kidney transplant wait list die daily while waiting and less than 20,000 receive a kidney. The 100,000 listed does not change much despite the deaths and transplants. Shows how many are added to the list. Thanks Jayhawker! Blessings

[Jayhawker in reply to KidneyCoach]

Yes, I’m aware of the data. Consequently, I always say “should I be fortunate enough to receive a deceased donor kidney.” Some interpret that to mean that I have a poor attitude, etc. I don’t see it that way. Instead, I just fully understand the data. I realize that only a select few actually receive a donor kidney. Consequently, I hope to beat the odds but will be at peace either way.

Jayhawker

[KidneyCoach NKF Ambassador in reply to Jayhawker]

Exactly. Living in the midwest and on the "shorter" donor lists I always felt fortunate. Some lists average wait times are 10+ years. Kind of likened my chances to the "hunger games" famous quote. "May the odds be ever in your favor."

In the end I was listed for nearly 10 years. A manager at work asked me " so what do you do just sit and wait?" My response was "No of course not. I go out and live my life. If it happens, GREAT. If it doesn't happen, well thats okay too as I'm out living and making the best of my life anyway." THAT is not a poor attitude, it is being emotionally prepared and accepting of either outcome.

Hope your time is soon. Hugz and Blessings

[Jayhawker in reply to KidneyCoach]

Thank you for saying that. You’ve captured exactly how I feel about all of this🐶 I’m determined to live my life well with CKD regardless of the treatment plan I need or am fortunate enough to receive in the case of a donor kidney.

Jayhawker

[KidneyCoach NKF Ambassador in reply to Jayhawker]

Yes, and currently there are approximately 125,000 individuals on a transplant waiting list. Of those 125,000, about 100,000 are waiting for a kidney. You can see then kidneys are in high demand, while liver, heart, lungs are a small percentage of whole organs needed. Thus of the 100,000 more than 20 on the kidney transplant wait list die daily while waiting and less than 20,000 receive a kidney. The 100,000 listed does not change much despite the deaths and transplants. Shows how many are added to the list. Thanks Jayhawker! Blessings