Dialysis

[Boxing]

Hello All

just wanted to know how many years have or was on dialysis and how did you cope? I may end up here and I am 34.. I hear you can’t live long on dialysis but with a transplant you can not sure how true this is

[Bassetmommer]

Many people live for 20, 30 years or more on dialysis. Do not pay attention to the garbage out there. And the wait for transplant depends on the center. Mine has a five year wait. Another one in the state has a much shorter wait. And it depends on the patient as well. But get going to get on a list somewhere. You can list at multiple places as long as they are not in the same region.

As far as dialysis, there are three modalities. In center...hemodialysis. That requires you going to a center and getting a fistula (which also takes time to mature to be able to use) or a catheter. Peritoneal dialysis, which you do at home. Requires a tube out of your belly. Is very gentle but requires daily treatment. And Home hemo, which requires a fistula and you do all the hooking up. Much more thorough dialysis than PD and gentler than in center. But requires the patient to do everything. I do treatment only 3 days a week for 2 hours.

Figure out before you need anything what and how and get the necessary accesses done. Much easier on the mind and body. there are people who get a transplant without even going to dialysis. Wish I had done the work to get on a list sooner.

[Boxing in reply to Bassetmommer]

Thanks so much for the detailed response.. how long have you been on it and have you had any side effects?

[Bassetmommer in reply to Boxing]

I am on home hemo. My husband and I do it together. I am coming up on a year this Wednesday. I won't lie, it is a lot of work, scary and sometimes overwhelming. But I do dialysis when I want. I can move my days to accommodate my life. I can even skip but I try not to.

I had no symptoms when I started. NO edema or other things. I still do not. The thing that has changed are my labs which have improved drastically. That is why I can do a very light treatment. It is cleaning the blood. I actually sometimes have to put fluid back in so I do not have issues. But the main thing is I am in control. Not the other way around.

[Boxing in reply to Bassetmommer]

Wow so your bloods improved when on dialysis better than when you had the initial lower kidney function?.. I hope if I do end up on dialysis I do get a kidney at some point! My egfr is 40.. but the kidney needs to come out due to tumors (genetic condition)

[Bassetmommer in reply to Boxing]

oh you are a ways off to dialysis. Even if they remove one kidney. You have two. After they remove the defective one, things may improve. I hope it does. I have several friends who have only one kidney and they are healthy and fine.

[Boxing in reply to Bassetmommer]

Oh no basically my right kidney is out.. I have had surgery on the left so I have half a left kidney left. Which is producing 40 egfr but due to tumors it needs to come out.. so your bloods improved when on dialysis better than when you had the initial lower kidney function?

[Bassetmommer in reply to Boxing]

So if I understand correctly, you will not have a total functioning kidney? I know several people who have no kidney function either. My mentor and friend lost her kidneys when she was 14. Got a transplant and it lasted for a while and then failed. She has been on dialysis for 27 years and is doing fabulous. She does nocturnal dialysis at home, in her own bed while sleeping. She does 8 hours, four days a week. Works, three jobs and is a kidney advocate and mentor.

And yes, my BUN, or blood urea nitrogen is the best it has ever been since diagnosed with CKD in 2006. My potassium is under 5 for the first time since 2018. My phosphorous as well, but I am on a blocker. Anemia is gone. Creatinine is coming down and way better from when I started. Still, none are perfect, but sheesh, I am stage 5.

[Boxing in reply to Bassetmommer]

Yep that’s correct if I go on dialysis I will be on it with zero kidneys none whatsoever. Glad to hear people close to you are doing very well on dialysis. I thought dialysis causes anemia, potassium issues bone issues because they say to keep your kidneys as long as possible I didn’t realise my bloods will likely go normal ice you do dialysis..

[Bassetmommer in reply to Boxing]

They are not normal numbers, just better. Dialysis can cause anemia, and I did have an issue at first. But with proper medication I went from 8.5 to 11.6. Now I am not on any medication for it. Once you are on dialysis, you do labs every month. I actually draw them up myself and run them to the center to send to the labs. My potassium just came down on its own to 5 and the phosphorous was down to 4 with a blocker. That's the bone issue. It works great and it's only a pill in the am and a pill at dinner. Simple. It's a new lifestyle. You are young and I would start talking to a transplant center to see what is involved, even with your GFR at 40. You need to jump on a list asap when and if your GFR goes below 20. The more prepared you are, and being young, they will probably expedite you. Keep asking questions and we are here for you.

[Boxing in reply to Bassetmommer]

Thank you so much! Yes my situation is egfr 40 but I cannot wait till 20 as I have tumors so the kidney needs to come out. The largest tumor is 2.5cm but at 3cm they said they will take it out so technically I am going to ask if I can go on the list from now. I am in England so let’s see what the doc says! My reduced kidney function has caused my BP to rise so I do take Ibersartan at 150mg and it’s well controlled with this. At my age even if I get a transplant in 3 years I would expect I will need another one at some point so I do see that my life will be on an off dialysis and transplants.

[Bassetmommer in reply to Boxing]

Maybe, maybe not. Some transplants last for years and years. Your attitude really is good and I think you will do well. Yes, talk to the doc about moving on to the list asap.

[Boxing in reply to Bassetmommer]

Deffo thanks!

[PostivelyJo]

Search Maddie Warren or follow her on @queenofdialysis she has been on dialysis for over 25 years. She can’t have a transplant due her unique circumstances as she rejects the kidney. One donated by her father rejected .

She gave up a high city job to work for Quanta who make the new age dialysis machines . She is an advocate for kidney health, done TED talks, you name it. Her approach to life is awesome, she is a complete inspiration and knows her stuff. Start with her

[Seanthesheep]

Hi. Don't listen to anyone other than your renal team. I was three years on dialysis and am now four years post transplant and am very well. It's a bit of a journey but take control of your condition and be patient. Outcomes are generally very good.

Good luck

Sean

[Boxing in reply to Seanthesheep]

Hi Sean thanks for the reply. How was you on dialysis? Any side effects?

[Seanthesheep in reply to Boxing]

Hi Boxing.I opted for peritoneal dialysis which was great. I suffered no side effects and I had full control of my condition. The support was very good from the renal team. Any problems and they would see you that day.

Sadly that lasted for only two years and I had to switch to Heamodialys.

My switch came right at the start of covid so it was difficult. I had to attend the late session. Wear a mask and wait in a cold car park. When I got a call from the transplant coordinator it was the happiest day of my life. I only had 11 months on Heamodialys but it seemed like an age.

Transplant Was brilliant. Felt so much

My better within days and have had four good years with only a few side effects.

You have nothing to fear from dialysis. You get very well looked after and you will feel better than you did. My gfr dropped to 6 before I started and I felt s**t.

You will be surprised how many young people are on dialysis but you will get through and lead a full and normal life. My kidney is four years old and as good as the day I got it.

You need to keep fit and healthy and who knows. Good luck !

[Boxing in reply to Seanthesheep]

Thanks for the detailed response much appreciated!

[PTS520]

I've been on dialysis three and a half years. My blood work has improved greatly including my hemoglobin from 5 years between10 and 11 to now consistently between 13 and 14. Do in center hemo mwf at 5am and the go home and work a full day. It is time consuming, but I like in center. Meet some nice people including techs and nurses. I am very fortunate, but I am on the younger side for dialysis being in my mid-50's. The people that struggle are older people with heart problems. Fortunately, my heart is strong. At your age you should do well. Just keep a positive attitude. I was listed for transplant a month before I started dialysis and now I am listed in three places. Hoping for a transplant in the next year or so, but that is just a different treatment not a cure with it's own downsides. Best of luck to you, but don't fear dialysis. It doesn't need to be the end of the world. You can live a full life, although it can be tiring at times.

[Boxing in reply to PTS520]

Thank you so much for the detailed response! I would have thought dialysis makes your haemaglobin worse then when you have your own kidneys that are diseased. Interesting to here that sometimes thing can be better than you having you diseased kidneys

[ShyeLoverDoctor]

First of all, I am sorry it has come to this for you. However, we get what we get in life. All we can do is make the best of it.

I urge to learn as much as possible about what kidneys do, how they work, and what medications you will need once you have no kidneys. Read all the packages insert. Find out how each medicine works.

It took me a couple of years, but I’ve learned a ton about kidneys and transplants. And I’m still not a kidney doctor, a nephroogist. Nephrology is a difficult specialty to learn. I mean, I respect all doctors, but nephrologists are extra *smart*.

Dialysis is life support. As is kidney transplant. Kidney transplant is a treatment, not a cure. Once you start on dialysis, your life expectancy is shortened. That all changes with a transplant.

Yes, plenty of people do live on dialysis for 10, 20 years. However, the majority do not. 60% are dead within 5 years. But you have to look at which 60%. If you begin dialysis at a younger age, you will live longer on it. People who start it are often in their late 60s, 70s. They have other conditions like high blood pressure, diabetes which damages their other organs - like their heart.

My friend D. Is on year 12 of dialysis. He had to quit his job at year 10 he was too tired all the time.

So you’ve got Grf 40, and sadly it’s going to go away. You may not realize this - many don’t know, not even doctors! - dialysis only replaces 10% of what normal healthy kidneys do. 10%, that’s it. You’re still ill. Normal kidneys work 24/7, so that’s 168 hours of filtering per week. In center dialysis is 4 hours, 3 days a week - that’s only 12 hours of filtering! People do it at home so they can get more time in.

Peritoneal dialysis is much gentler on your body but I just did not want a permanent catheter I had to take care of and have the risk of infection. The surgery to get one takes a month to heal. A dialysis fistuala takes 3 months. You need to decide right now which you want. Get it done ahead of time. Otherwise you end up with a chest catheter which has a risk of deadline infection since it goes to your heart. Keep in mind PD requires a lot of supplies, bags of liquid called dialysate, and you need a place to store them. And you need to keep the room where you do it, sterile.

I did in-center dialysis, and it was exhausting. After a session, I was so tired I could do maybe one errant, then have to rest the entire rest of the day. I felt run over by a car. It was awful. I had painful muscle cramps during sessions. I sometimes cried when I was done after I got home.

The only thing that kept me going was the hope that I would someday get a transplant - and I did. Transplant hasn’t been easy, the medications are a lot to deal with. But it beats dialysis.

Yes, I wanted a “pre-emptive” transplant where you skip dialysis entirely. It did not work out because my sister (who I had been wrongly counting on) really didn’t want to donate, dragged out the evaluation process and quit halfway through. The other friend I had been counting on, turns out he had had a kidney stone and didn’t realize that made him ineligible. Another friend tried to donate, but wasn’t healthy enough. I tried to find other donors - gave speeches, ad in magazine, facebook, etc.

How long you wait depends on blood type, how sick you are, AND which transplant center you go to, because some have a longer wait time than others. Have no idea what it’s like outside of the US. You need to find out, look around, see how many you are allowed to be listed at.

By the way, I know someone who is 77. He has had 3 kidney transplants, one after the others and has had a total of 12 years of dialysis in between them. All deceased donors.

I was listed at a center which had an average wait time of 2-3 years. Guess what - I was transplanted after only 11 months and 3 weeks on dialysis. Someone died young and I was lucky enough to end up with their kidney. I was transplanted June 11 of last year and I still think of my donor almost every single day, because of course I still worry about will this new kidney stay healthy. So far it has. I count myself very very fortunate,

I wish you the best of luck.

[Hidden]

Not True at all it all depend on your age and how u will control your diet just control on your food water and follow diet chart strictly I am also a dialysis patient and in my center there is an old man who is on dialysis from last 24 years he also do his job and daily work all because of good food diet nothing to worry about just be happy and follow doctor advice.

[mingmiley]

I'm on dialysis 15years, I just depend on the Lord. I go to church and Bible study and prayer meeting, that keeps me going. Lord protected me. May you love Jesus also. God bless

[redpanda67]

I’m a long-haul dialysis and transplant patient. I was on dialysis for 9 years before receiving my transplant, which I’ve now had for 20 years. However, I spent only about 4.5 of those years on the transplant list due to thyroid cancer and various complications that temporarily removed me from consideration. I started dialysis at 21 and received my transplant at 30. I’ve met people who have been on dialysis for over 20 years, even back in the 90s.

It’s not easy, but as others have suggested, it’s best to get your fistula or graft now while you are still healthy if you plan to do hemodialysis. Back in the 1990s, when I started dialysis, the advice was to have a vascular access prepared even if you intended to do peritoneal dialysis (PD). This was because, in case of any issues with PD or if hospitalization occurred, hemodialysis was often more effective at ultrafiltration (removing toxins). I’ve experienced both types of dialysis, and each has its pros and cons. Ultimately, I began with hemodialysis, transitioned to PD, but had to return to hemodialysis due to frequent infections. I used to tell new dialysis patients—as the “dialysis veteran” at just 25—that dialysis is like having a part-time job. It’s not your entire life; it’s just one part of it that enables you to keep living and doing other things you love. Everyone finds their own groove and adapts in their own way.

For me, I coped by going to school. I had a couple of very rough years—not entirely due to dialysis—so I wasn’t able to do much. But I had friends who kept me engaged and involved in activities, pushing my wheelchair through malls, taking me out to dinner, and making sure I stayed connected. Once I was back on my feet, I moved into an apartment on my own and went back to school full-time while doing hemodialysis. I maintained a good schedule, and school kept me occupied both mentally and physically, helping me avoid focusing my entire life on dialysis. I finished my degree with a double major in chemistry and biology, just two months before my transplant. Three years after my transplant, I went to grad school for a PhD, and I now work in drug development for kidney disease.

Dialysis and transplant are all individualized. I was told numerous times my transplant would only last for 5 years because I only had a two-point match. I had my 20 year anniversary in August. Remember - the statistics are averages and they don't take into account your overall health, age, and lifestyle.

Redpanda67

[mingmiley]

I'm 74, I'm on dialysis 15 years, i faithfully take my binder, phosphorus binder. not to overtake any potassium-rich fruits. At regular time, tried not to over eat, over drink, so my usual pull out amount is 2KL, Usually at the last hour of dialysis my body'll feel very stressful, I'd ask them to turn down the target, so I won't be too hard on myself. I used fosrenal one tablet, twice a day, it did very good work to control my phosphorus so i won't damage my bone. Before I started this dialysis I had a kidney transplant for 16 years. If it were'nt because my sudden onset of mental illness, it would still keep going. However, right after I lost this kidney, The Lord led me to see a psychaitrist, he prescribed a mental medicine and I got well, that's why I am keeping on dialysis for the 15th years./ In our center a gentleman did dialysis forty-some years now. they said he followed the diet very good, he always got good lab report.