o blood group kidney transplant

[Boxing]

hello

Anyone with an O blood group how long did it take you to get a kidney transplant while being on dialysis? My understanding is O blood group is hardest because we can only take from O.

Thanks

[Warthog81]

14 months in total on the waiting list, 10 of those on dialysis then I got the call.

[Boxing in reply to Warthog81]

Wow! That is very quick! I hope the day I end up on there I get a call that quick! How have you been on the transplant and how was it on dialysis?

[Warthog81 in reply to Boxing]

One of my friends is type O and he only waited about 8 months for his transplant. I have had a few stomach issues like IBS, my Dad suffers from it and I think the meds just pushed me over the edge etc, before transplant had no issues. Beside that and worrying about infection life is almost normal. Be careful of sun exposure also. Dialysis was not that bad, the worst thing was having to go there and finding it boring. Getting a tablet to binge watch Youtube made it a lot more interesting!!!!! I was 37 when I started dialysis and am 42 now.

[Boxing in reply to Warthog81]

Oh ok fair enough looks like wait times can vary. Dialysis does scare me but everywhere I read a transplant is always better off but there’s a lot of medication to take.

[Warthog81 in reply to Boxing]

I certainly think transplant is best as it generally means an easier life. I can do almost anything now which is good. If I could give any advice it would be to try and not worry. I worried myself silly at the start, then while I was about 7 months from starting dialysis my partner was diagnosed with stage 4 lung cancer. I went from being the "ill one" to the one who had to do the caring. I got my transplant in April 2020 and sadly lost her in July 2020. Up until her diagnosis I had thought kidney failure was the worst thing in the world, I was wrong.

Dialysis was scary the first couple of times I went but I soon got used to it. In many ways it was like a job you had to go to, one you could not quit etc, that is how I thought of it. I found the nurses and other staff were very supportive and really wonderful people, met many great renal doctors also. Everyone was very supportive.

[Boxing in reply to Warthog81]

Thank you for the reply. I’m so sorry to hear about your loss and your a very strong person to handle all of what you been through. Dialysis scares me too but more because they say you can die on it and you don’t have that long to live on dialysis..

[Warthog81 in reply to Boxing]

Thanks for your kindness, greatly appreciated. There were people at my centre who had been on dialysis for years and years. I think that mostly relates to very elderly patients who often have a wide range of other medical issues.

Check out Maddy Warren, she calls herself the dialysis Queen! She cannot have a transplant. twitter.com/queenofdialysis

Look at the life she lives. I think she did parachuting and is now doing open water swimming! If you Google Maddy Warren dialysis queen should bring up some other links. She would travel around the world and have dialysis in different countries. She has been on dialysis for a long time.

[Eyak1971]

There are so many unplanned factors involved in finally getting that call. I found it better emotionally just to concentrate on taking each day as it comes and not putting a time limit on when I will receive a transplant. The transplant is just a treatment like dialysis. It does make your daily life less cumbersome, but it has it drawbacks. The old saying watching a clock does not make time move faster, nor does it get a transplant any faster. Just be positive and know it will happen, and when it does, it will be unexpected. For me, it was that call in the middle of the night when I was resolved that my life would be OK if I just had to stay on dialysis permanently.

[Boxing in reply to Eyak1971]

Thanks so much for the reply. I have been told this that dialysis and transplant are treatments not cures. But do you agree with that a transplant extends your life more than dialysis? How was you on dialysis if you don’t mind me asking? Thanks.

[Eyak1971 in reply to Boxing]

I was in dialysis for 5 years, but I was an older transplant patient. I did both pd and hemo at times. Preferred pd and could have done it for the rest of my life without hesitation. Yes, statistically transplant adds more years, but it also adds, due to medications, the possibility of other medical issues that can affect the quality and length of your life from cancers to bone diseases. The one thing that all patients learn very quickly is that life is unpredictable, and you truly learn how strong you truly are.

[Boxing in reply to Eyak1971]

Glad to hear you coped with dialysis well. I wonder if you on dialysis younger you may cope better as I’m 34 which is quite young for all this but that’s life. When you on dialysis do you not take medication?

[Eyak1971 in reply to Boxing]

Pd in my opinion is less stressful on your body and social and work life. You do take medications on dialysis to keep your certain vitamin levels stable but not nearly what you do after a transplant. The side effects of these medications are rarely discussed before transplant but they usually are one of the major topics of conversation on this forum. Their reactions vary from minor to major as each person is different. But generally their negative reactions do not deter people from be thankful for a transplant.

[Boxing in reply to Eyak1971]

I see yes I have heard PD is best option for work life etc.. did you have any symptoms though? My doctors have never told me about side effects of the medication. My situation basically is either get a living donor to donate or go on dialysis or take this new drug that’s come out to control my 2.5cm tumor in my remaining half kidney but once the tumor gets to 3cm my half kidney needs to come out. Have you had side effects from transplant medication? Do you know how dangerous the side effects of the medication are?

[ShyeLoverDoctor in reply to Boxing]

The most dangerous side effects from transplant meds means you are more likely to get certain cancers.

[Tuna14]

My blood type is O, and I lost my kidney when I was 30. It took me 5.5 years to get a transplant because of my antibodies and the difficulty in finding a match. Surprisingly, my experience with hemodialysis wasn’t as difficult as I had anticipated, especially during the last 1.5 years when I was able to do it at home. During my time on dialysis, I managed to work, take care of my child, and maintain a social life, with some limitations. When I finally received the transplant, my quality of life improved significantly. I’m deeply grateful for this incredible gift, which has allowed me to live a much better life, and I’m hopeful for a healthier and longer future. My kidney transplant was three years ago!

[Boxing in reply to Tuna14]

Wow thanks for the response! Good to hear and congrats for your transplant! How are you coping on the medication? What symptoms did you have on dialysis? And what is your kidney function now?

My egfr is 40 but my remaining half kidney needs to come out because I have 2.5cm tumor am hoping with transplant it will go to normal range.

[hope1419]

Wow 34!. I was 42 when I started my journey with kidney disease, and I was considered young. If you have not started any trearment. I would try to treat with diet and medicine as long as possible. I stayed on stage 3 for about 4 years and all of a sudden, I went from stage 3 to 4 rather quickly. That was scary, but I tried to learn as much as I could about the dyalisis options and transplant. I got on the list as soon as I qualified as my GFR was less than 20. That helps you build waiting time while not in dyalisis, yet.. Then, my GFR went to 13 in the year 5, but stayed there for almost other 3 years. In those years, I kept getting informed. Dyalisis scared me, so I started searching for a living donor. That can potentially accelerate the transplant timing, in addition to giving you better results. I was lucky enough to not get on dyalisis of any kind. Had my living donor transplant a year and a half enough. When I was 51. (My donor was not relates to me, she responded to a news article) Best decision ever. Yes, I take a lot of medications that have some side effects, but transplant gives you a sexond chance in life. I am now 52, back at work, active and trying to take good care of rhe prwxious gift of life ai received!

[Eyak1971]

You have many good questions for someone new to the process. Hopefully others on this forum will respond. You need a gallery of input. But for me pd was quite comfortable as long as you follow instructions to prevent air from entering the system. You become your own nurse so patience is a priority. As far as medication reaction stomach issues are usually the first problem but eventually subside in most cases with proper care. In my cases the prednisone i take to prevent rejection caused avn a bone disease. Prednisone has other side effects that are much minor. I have a history of skin cancer so my rejection medications can make me even more open to additional problems so I follow up with my skin specialist on a regular basis. There are different types of medication and doctors vary in options so always ask your doctor for information. Wishing you the best and keep us posted.

[Italianbabe1]

I'm "0" blood type. Waited to 2 years, until I had a transplant.

[Boxing in reply to Italianbabe1]

Oh ok thanks! How was you on dialysis? And are you ok on the transplant medication?

[Italianbabe1]

Dialysis was good. I am going for my 2 second kidney transplant.

[Boxing in reply to Italianbabe1]

Oh wow.. if you don’t mind me asking how long did the 1st kidney last and how was you on the medication?

[Italianbabe1]

12 years...medication was no problem.

[Winner76]

Hi,

I’m B positive blood and waited 8 years. 7 years on PD and 1 year on Hemo. Meds were mainly blood pressure tablets and vitamins. My main issue was lack of energy, always tired. I’m nearly 5 years post transplant , I have steroid induced diabetes , ulcerative colitis and bone desease. I started my journey when I was 28. Had my second child when I was 36. I think both options can be hard at times but you just keep on going. Love and laughter will get you through.

Good luck

[Boxing in reply to Winner76]

Wow sorry to hear the medications done this to you. I didn’t know the medication can cause diabetes and bone disease etc not something they tell you. My fear of dialysis I read online and it seems like a death sentence basically and that you won’t make more than 5 years etc bit scary!.. and being 34 makes you worry even more! Even thought both options can be hard I would assume most people would prefer the kidney transplant so they can have more of their day to day life back!

[Winner76 in reply to Boxing]

Yes transplant is the best treatment. But dialysis is not that scary . It can keep you alive for 20/30 years if you stick with the diet and try and stay as healthy as you can. Obviously the longer you’re on dialysis the more damage it causes. But a few years on it and then transplant is most people’s journey. You’re young , I’m sure you will handle it well.

[Boxing in reply to Winner76]

Thanks! Does a few years on dialysis cause damage to our organs?

[Winner76 in reply to Boxing]

I done 8 years and I have no damage to any of my organs. I know a guy who is doing dialysis around 22 years and his heart is quite weak now but still living his life. Try not worry too much . Stress is not good.

[Boxing in reply to Winner76]

Thanks! Wow 22 years! How old is he when he started?

[Winner76 in reply to Boxing]

I think he was a teenager

[ShyeLoverDoctor in reply to Boxing]

60% of dialysis patients die by the end of five years yes. It’s been true since the 1970s and has not changed.

[Beachgirl32]

my brother is as type o and he got his transplant after three years he has to travel four hours to get it. I’m type A still waiting after three and half year but I have high antibodies. We both did pd and both had to go to hemo. He really like pd he did it Manual But he got to much fluid build up cause he had a small pin hole in his heart or lungs . They watch him really close on hemo. But he didn’t like it. I got a fungal infection on pd which is rare so catheter had to come out surgeon said once a fungal infection he doesn’t want to put one back in. I thought I would hate hemo but I don’t I actually feel better in it.

If your efgr is 20 percent or lower you can get on the transplant list now good luck to you

[Boxing in reply to Beachgirl32]

Thanks for the reply. How are your side effects outside the infection you got on dialysis? And how’s your brother doing since transplant?

My egfr is 40 currently but my kidney has to come out due to tumors (genetic condition) what is your brothers egfr after transplant? I’m hoping if I do get a living donor it will be higher than 40

[Beachgirl32 in reply to Boxing]

My blood pressure drop a lot on hemo but they put me on 3 meds that bring me blood pressure down when I was in hospital couple of weeks ago for shortness of breath had fluid in lungs. I have to take one blood pressure med to bring up my blood pressure in dialysis day. They are trying to get my ejection fraction up

It been 12 years since my brother transplant his I know his creatinine is like 1.2 he is feeling great

[Boxing in reply to Beachgirl32]

Oh wow doesn’t seem like dialysis is easy!

[ShyeLoverDoctor in reply to Boxing]

It is not. But it is life support. Otherwise you will die.

[Lodilaker]

Type O+ is the most common blood type, but there are other factors such as the sensitivity of your blood, which I understand is when you produce a lot of antibodies towards others peoples blood/tissues. If you have highly sensitized blood they move you to the top of the list as it can take a long time to find a match.. it also depends on your location. Northern CA average wait time 6 years. Your transplant team should let you know.

[Italianbabe1 in reply to Lodilaker]

I am Type 0 + too. Waited 2 years until I had kidney transplant. Had it on Christmas Day.

[CKD2-4]

Hi. I have been waiting for 3.5 years on the list. I am in late stage 4 CKD. No dialysis yet. I keep trying to stay off dialysis by adhering to a strict kidney diet and exercise. I was told at my last nephrologist appointment the average wait time for a O kidney is now 5.5 years.

[Darlenia]

Wait times can vary enormously among the transplant centers in the US. Sometimes, one can shorten the wait by accepting a higher risk kidney - one that may have had an issue of sorts - and may not be "perfect". My husband, an older gentleman, did that so his wait time was very short. He is now 3+ years post transplant and is doing very well. As for transplant meds, transplant centers will start you off with very high dosages and then slowly lower them to ideal levels. We are all different so side effects vary. If side effects are extreme, then the types/combinations can be switched around to improve the situation. My husband had some side effects initially, but now has minimal issues - primarily a very sight tremor in his hands. When considering dialysis or transplant - research indicates transplant is known to extend life and offer a better quality of life for most. I think you may be located in the UK. If so, you may want to check out how kidney transplantation is handled there. Different nations have different protocols and some of shorter waitlists than those in the US. The UK openly displays their information online (including data on specific transplant centers) as well as a calculator to estimate your wait time. See odt.nhs.uk/. I'm glad you're being proactive. As such, you may get a "preemptive transplant" and may avoid dialysis completely. Keep on keeping on! Good things often happen to those who plan well.