I made a post about eight months ago titled, "Just found out I need a kidney transplant" soon after I got the news. I was mostly worried at the time about whether my mom would be able to be my donor and who would take care of me/us after the surgery. I can now report, my mom cannot be my donor, and I have not been able to find anyone I know to donate. I am officially on the list, but it doesn't seem like they'll be calling in the next few days or anything.
My kidneys are getting worse and worse. My doctor told me I'd need to start dialysis/get a transplant when I got to a GFR of 10. I had my blood drawn today and my GFR is 11. I'm scheduled for a fistula surgery in the next couple of weeks so I can do hemodialysis. I am not able to do peritoneal dialysis. After the surgery, it will still be a couple of months before they can even use that spot for dialysis, and it sounds like I'll need it sooner.
I'm stressed. I can't find a donor. I can't do PD. This fistula surgery is going to disrupt my life, and I won't even be able to use it for dialysis when I likely will need to. I'm feeling hopeless and defeated.
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Spaghetto
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Deep breath...... you will be ok. I know exactly what you are feeling. The first thing is, how do you feel with a GFR of11? If you are feeling ok, and none of your labs have really bad numbers, you can wait. I wish I had. I was at a GFR of 7 but with my Cystatin C was 11. That is a more reliable number. I had no edema. My potassium was up there, but not more than it had been. I went for a water aerobics class the Thursday before I started.
So here are the things to consider. Get the fistula. Let it heal. Work out with a rubber ball to strengthen it. Are you going in center or home? Either way, they will be used to a new fistula. Make sure that a nurse cannulates you for a while and not a med tech. It is your right to ask for the right treatment.
If you are feeling ok still.... keep to a strict renal diet. Drink your water to help keep the kidneys flushing. Do you have edema? If yes, then be careful with too much water. If no, guzzle away. Watch the salt and other minerals such as potassium and phosphorous. NO red meat at all at this time and limit your protein as much as you can to about 50 mg a day. Its not much, but protein is hard for the kidneys to deal with. Watch the diary, too. If you are not already, stick to a plant-based diet as close as you can. Stay away from high additive foods and fast foods.
Exercise. Get the blood flowing as much as you are able to do. Walking and swimming are good. Do not overdo it either because that will raise your creatinine.
Watch your labs. But remember they are just numbers. What you want to pay attention to is the speed of decline. Take a look back and see how fast the kidneys were going downhill. If it seems there is a rapid decent, then make you plans for whatever program you are going to do. If you are doing in-center, go there and look at it. Meet the people and staff. Get comfortable. If at home, make sure you get educated on ALL that is involved. It is a lot, but the freedom of having your own schedule is great. Be prepared, and it will help with the transition.
Just for reference, I was bounced between 13 and 9 for over a year.
If you need to go on dialysis before the fistula is ready, they can always put in a catheter to tide you over. The road looks so long and scary when you are standing at the beginning of it, but life will go on. Hang in there, dear one.
My whole plan was to get the fistula and let it heal and then it would be ready before I needed dialysis but it doesn’t seem like that’s going to happen. I’m glad they can do a catheter and I’m not just doomed. Thank you for your reply, I appreciate it.
oh I am going to tell you, if you can go without a chest catherter, then do so. they are not the easy answer you think. It will truly impact your life from showering to what you wear. Try to get the fistula going.
This is why, if anyone sees the labs showing a decline, especially rapid, get a fistula. I know people who have had them ready for years before they needed. A well healed fistula is a happy fistula.
Kindey failure is very difficult to cope with. Many people with kidney failure become really depressed, some suicidal, may need medication, therapy, etc, to help them get by. No one can understand the feeling of having kidney failure if they haven’t experienced it, period. They don’t know what it’s like walking around with useless organs that are vital to your survival and being dependent on dialysis to save your life. It is a terrible thing, truly. The good news is, it will keep you alive, and you are already on the transplant list. A transplant is still only a treatment, not a cure, and even a transplant doesn’t last forever ! That shocked me since I thought you got a transplant and were set for life. No. Very unlikely. Second transplants are common, sometimes even third.
I was positive my sister was going to be a perfect match (1 in 4 chance) and I could avoid dialysis completely! It was only when she started the testing did she reveal she had been on a medication for years that could cause kidney damage. I had no idea. Then she quit partway through testing because her urologist advised against donating.
I could not believe I was going to end up on dialysis after all.
My friend had always said he’d donate, but turned out having a kindey stone disqualified him. I knew he had had a kidney stone but didn’t really figure out, Gee, why would I want a kidney that had made a stone? Duh. Of course they don’t allow people with kidney stones to donate. I felt like it was the end.
Everyone told me how horrible dialysis was going to be, from my dentist to my best friend! Guess what. It keeps you alive. Period. Wait until your GFR gets low enough when you will someday feel like you are walking around half dead, which you are. An organ system has failed. When that comes is different for everyone. Kidney function can fluctuate which is what is so difficult, but the overall trajectory is down.
I never wanted to be “on dialysis.” I had two people willing to donate a kidney, and all of a sudden, none. Wow. I begged everyone I knew to donate. No one would.
You are on track to get a fistula which is the best thing you can do.
As some have said, there is some leeway about GFR on dialysis. They used to start people when their GFR was below 15. Then they found that “early start” dialysis didn’t help anyone.
The thing is, my GFR was 6, but my potassium wasn’t horrific, other blood levels were off but not critical, and yet my doctor didn’t understand why I complained of being tired all the time. That’s what I didn’t get. I was clearly being poisoned. I had to change doctors because my doctor was far from my house and I did not want to drive possibly an hour and a half in traffic to a dialysis center from my house three days a week.
People told me “Oh you will feel so much better on dialysis once you start!” Well….kind of…eventually. I still didn’t feel great, like I had before kidney failure. I did feel quite better in some ways and was angry my doctor made me wait so long. He should have started me sooner. I do get why he didn’t want to, but he really should have. I’ve let it go.
There’s a reason they call us dialysis warriors. At first I thought it was stupid, then I realized it really isn’t. Dialysis is a lot to handle. You didn’t ask for it, but you have to deal with it, and yes, your life will change radically. It’s awful but again - you are alive. Appreciate the good days, and the good things you do have.
Early on in dialysis I complained to my doctor, ”Dialysis is hurting me!” I would get painful cramps during dialysis, someone people throw up, etc etc. I’m sorry there is a lot that is unpleasant, really. My doctor said “Dialysis is keeping you alive!” It totally blew my mind to realize I could be dead, right then, gone, never to experience the living world, petting my kitten, reading book, being with my family who I would leave behind.
It is discouraging to not have potential donors. Do not give up. I had a friend volunteer totally unexpectedly. It was hard when he failed the health tests. I was completely determined to find a willing living donor, to persuade a total stranger donate to me. It does happen. I did indeed have one woman go through the testing and she failed. You have to be very healthy to donate. I got listed at a second transplant center. Undeterred, I put a paid notice in a paper, and another woman offered to donate to me. At the same time, I was working to get on a transplant list in another state with a shorter wait time. Making phone calls, filling out applications, and brainstorming other ways to find the next living donor in case this one failed the tests. She was still trying to get an appointment for her first evaluation when I got “The Call” as they say.
You are on the list. Call your transplant coordinator and ask, when am I likely to get a transplant? No, it’s not going to happen in a few weeks, unlikely. The average wait time is 3 to 5 years depending on your blood type and where you live and whether or not you are “hard to match.” My transplant coordinator told me, “Most people I see with your profile get a kidney in about four years.”
I don’t know if you realize you can be listed at more than one center, and it’s perfectly legal. It’s called multi listing. You can’t be listed at more than one center within a certain mile radius because they all “draw“ from the same kidney pool. Wherever you go, your wait time there starts from the first day of dialysis. However, since you were listed before you started dialysis, you have what’s called “pre-emptive time.” You can move that bonus time around to any center in the US, but only one center at a time. All it takes is a simple one page form.
The second center where I was listed, the Mayo Clinic in Phoenix, Arizona, told me my wait time would be three to four years.After I was listed at Mayo, I was working on getting listed at Nebraska who said about two and a half years.
Guess what. I got a kidney after only 11 months and 3 weeks. My former doctor was shocked when I called him from the hospital and said, You weren’t even on dialysis for a year! I met someone who got a kidney there at Mayo after 7 months. They do the most transplants of any center in the entire US. I was put on Mayo’s list on April 28, 2022. They called on June 11th, 2022 while I was eating breakfast at 7:15 in the morning, and asked if I could be there by 3 pm. I hadn’t even bothered to pack a “go bag” like they suggest, which is a carry on suitcase to bring to he hospital with comfortable clothes for a few days, toiletries, etc. I had made a list of things to chose for the list but hadn’t even done it because I figured it wouldn’t happen for years.
It is not hopeless. It is hard. Difficult. Painful. Isolating. There may be time when you are tempted to give up hope. Don’t. There are support groups for dialysis patients. There is a helpline you can call, at kidney.org, and you can request a one on one mentor from them, for free.
Definitely! There are two paths to receiving a kidney - via live donation or deceased donation. Never ignore the latter. My hubby received a deceased donor kidney exactly one year after going on dialysis. (We had an earlier call three weeks earlier but my hubby was disqualified for a uti.) Since my hubby was older, he was offered a kidney with conditions and we quickly accepted. It has been working for him well for him for over two years. And yes, there are vast differences among the centers. It's incredibly important to list with at least one that has lots of availability and expertise. We were listed at two - the one higher volume center came through for us as we knew it would. I'm sure my hubby would still be waiting for a kidney at our closer, smaller center. Interestingly, the higher volume centers have the researchers and nephrologist with the skillsets to pioneer advances - reclaiming kidneys otherwise overlooked and so forth. Here are two websites, for anyone interested, which actually show the placement and success rates of transplant centers throughout the US. The first site is easy to use; the second site includes travel info and is run by a kidney transplant recipient. In the meantime, dialysis isn't always an "ogre". While it's not wonderful, it does keeps one alive and can actually make one feel and look better. My hubby was better off on dialysis than off of it. It's definitely better than the alternative.
I know it’s shock when you feel like your health is compromised. Makesure you do the excercises when you get the fistula so it’s nice and strong. If you need Dyalysis before hand it can be done. I had emergency dialysis before through a catheter in my neck. I was on dialysis for 8 years before I got a deceased donor that matched me. Average time in Ireland is 2 years. All you can do is follow the kidney diet and excercise when you can. I know it might feel hopeless but it will be ok, keep yourself well that call could come at anytime and you want to be ready .
You can check if your trasplant center has 2 kideny program and if you are eligible for. This program is using marginal kideny most of time coming from >80 donors. The advange is that waiting is normally not more than 1,5Y but most of the time less than 6 month.
It would too long to explain here but it's absolutely safe and statiscally comparable with normal transplant. Check your center and listen for reccomendation. Rgs
Yes, yes, yes! My hubby received an Extended Criteria Donor (ECD) kidney - a kidney with conditions over two years ago. It only took a year from the day he started dialysis, only six months after we were approved. That kidney is working great!
Just try to relax...easier said than done, I know. Things will happen in their own time and will have to deal with it then.
I have tiny veins so surgeon couldn't do a fistula, so he had to put in an AV Graft. I had to do hemo-dialysis. I had a transplant in 1999 from a deceased donor. Before I got the call, I was actively looking for a living donor. My husband was not a match, both of my daughters were, but I only wanted to use one of their kidneys if I was getting desperate. My cousin & my brother came forward and were a good match, but later found out they both had high BP, so it ruled them out. I had a good friend and people at my church and my work offered a kidney. But before they could start their testing I got the CALL from my transplant center. My kidney is from a 16 year old boy that was a 4/6 match. I waited 14 months, and now the wait is more like 5 years.
Have you heard of Domino Transplants, so maybe the person you choose is not a match for you, but maybe for someone else. And maybe this other person has someone that would match you.
I knew someone that advertised there need for a kidney with a yard sign. Some post on Facebook. There was someone that had a t-shirt printed regarding their need for a kidney and blood type. I know they all found a living donor.
Ok i dont know who is doing your fistula but can they not put a perm cath in your chest in the meantime? I needed to have a perm cath put in three times as my fistula needed maturing as my veins so tiny.The radiologist put it in and was using it for hemo the same day.Procedure took 15 minutes, local freezing.But you need a good radiologist inserting it as my first was very painful when freezing came out,the second fell out,and the last one was perfect no pain at all when freezing came out stayed in and lasted 2 years till i got my transplant.As for kidney function everyone different but I started dialysis at 5 percent and had gotten really sick but i was stubborn.
Try not to stress or you will drive yourself crazy.
If you have any questions feel free to ask me Ive been thru it all and are post transplant 16 months from deceased donor.
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