Is it worth to get transplanted? - Kidney Transplant

Kidney Transplant
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Is it worth to get transplanted?

hope1419
hope1419

I have been following the forum in this site for a while. However, everytime I read many of the threads, I end up wondering if it is worth going through it. Currently, I am relatively healthy, although my creatinine is 3.6, my BUM is 49, and my GFR is 13. I have been in the list for almost a year. I had gone to GFR 10, so I started a campaign looking for a donor last September. Amazingly I received good response, and one of the candidates was chosen to complete testing, and she is a match. She is ready to give me her kidney, and I thought I was, too; but now I am not so sure. I have no doubt about how blessed I am, and that a transplant of a kidney donor is the best case scenerio. However, after reading about all the issues people have had not only in the short term, but also in the long term, hours before going to talk to my doctor, I am panicking. I understand the kidney transplant is going to extend my life. However, will my quality of life be better if I just do nothing, and avoid all the side effects of a transplant? How long would I live without one? How well would I, and most importantly, my family live? I would like to hear about successful stories. I am 48 years old, and I have a 14 year-old child. My reasoning to pursue the transplant in the first place was to live long enough to raise her until she is independent... but if all the expenses, care and side effects that may come after transplant will actually make her life harder having to take care of me, instead of me being there for her... I just makes me wonder. I appreciate all types of feedback.

39 Replies
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The entire process was not easy, and there are still days now (almost 5 years post) that I am overwhelmed by the gravity of this situation - my future, medical costs, prescriptions, the nightmare of insurance(s), sorting my pills out, taking care to eat properly, watching exercise, will I live long enough to retire, what happens if I lose my job and insurance (again) and so on. At times I feel completely alone, though I have a good support network. I am also 48 and understand where you are coming from, but considering that I would be deceased had I not found a donor, for me, it remains worth it.

Thank you for your insight. The thought of a life causing more trouble to my family, made me wonder. But, it is true, life is better.

Do you live in the US? Healthcare system is a nightmare here.

I do, and yes it certainly does.

I think dialysis, which will be your alternative outcome, is far worse than a transplant. While the medical expenses in USA are unforgivablely complex and costly because of the broken insurance system, the care we offer is excellent. For every "down side" you read about there is a strategy to treat. You get your independence and functional good health from the gift of a transplant and I think it is something you should look forward to. Any cajor changes, both good and bad, can cause people anxiety. It is perfectly normal to worry. However don't let the anxiety confound how you evaluation things objectively.

hope1419
hope1419
in reply to LisaSnow

Thank you for your kind words. I guess I need to learn about the strategies. You are right dyalisis would be worst. All these changes are stressful, but I need to overcome my fears and have a better thankful attitude.

WYOAnne
WYOAnneNKF Ambassador
in reply to hope1419

Only you can decide whether a transplant is the answer for you!

I was your age when I had my transplant. My donor was a 16 year old deceased donor. I did have problems at first with the immunosuppressant drugs. I found the most important thing is to tell your transplant team any problems you are having. My meds were adjusted and my side effects got better. I was able to go back to work and for me I led a normal life with great quality. I went on to see my daughters graduate from college, marry and now have grand sons! My husband and I travel a lot here in the US, Mexico, Canada, Caribbean and Europe. You can travel with dialysis....

I was lucky enough to only be on dialysis for only 6 weeks before my transplant. I consider my transplant a true GIFT of life!

Having a living donor is suppose to be the best as far as statistics go for the longevity of your kidney. Most doctors will also tell you that having a transplant before having to start dialysis is key.

You should talk all of this over with your doctor and make a decision. Just because some people have had many problems doesn't mean that you will. And dialysis is not without it's problems too.

Best of luck to you! Keep us posted!

Got my transplant 16 months ago at age 49. I have teenagers and a spouse who need me. Doing great. Some minor side effects. Went back to work full time 3 months post transplant. Best decision I ever made.

Having had two transplants, the first lasting 21 years, and the second carried out a year ago, and having spent some time on dialysis, I would not ever hesitate to have a transplant. The side effects are minor compared to how dialysis affects the body. You could stay on a low gfr for quite a while, but my understanding is that it will decline at some point to low enough to feel ill. You will then struggle to be a parent. You are so blessed in having someone come forward to give you a transplant. My gfr went down to 11 and I still felt okay; but you do not realise how much better you will feel with a transplant. I understand the second thoughts. By the way, I am 56, have worked full time as a School Deputy Head up until a couple of years ago, and can assure you that my second transplant was virtually pain free - more discomfort and frustration with not being able to move freely in hospital. I was out on day 5 and very quickly after, walking and then jogging round the garden. A few minor gastro issues this time, but nothing compared to being on dialysis.

Tomorrow will be my one year Anniversary of my kidney transplant. Last year when I was going through the process of getting approved and getting all the testing done I never hesitated because I knew this would extend my life. I was fortunate not to have to go on dialysis and for that I am truly grateful. I will be 69 next month and look forward to each day and happy for the gift. I don’t think anyone enjoys having to take their meds, watch their diet, get enough sleep and drink enough water but that’s what we do as we age to prolong time with our family and friends. At the time of my transplant my GFR was 12 and my creatinine was 3.75 and I was really tired all the time. I had hired a dietitian and went on a plant-based diet which I really believe extended my life until I could get the transplant. I accepted a kidney with hepatitis C and got called within two weeks of my waiver. I did a 12 week treatment and I no longer show symptoms of hepatitis C. I believe you’re going through doubts which is normal, maybe even a little scared but the procedure is so automatic these days with all the technology that the doctors have these days. I did so well that they actually let me go home a day early. After any major surgery you do have a recuperation time. I’d say you are weak that first week but each day you get stronger. The transplant team is phenomenal, at least mine is. Once you receive the transplant you’ll see the difference in your health. It’s like the body just gets its ducks in a row. I was lucky and got a cadaver kidney from a 20-year-old. So hang in there, I know I feel wonderful.

I just celebrated my second transplant 10 year anniversary last week. Transplants aren’t perfect, but they are better than dialysis. I was on CAPD and later hemo for 2 years waiting for my first transplant. For the second one, I was on hemo 8 years. You may feel your quality of life is okay now, but I guarantee you the longer you’re on dialysis the harder it is on your body. I became weaker, more tired, and had so many graft problems. If you are concerned about being a burden to your family, it’s my opinion that remaining on dialysis raises the stakes of that happening. The thing many don’t understand or forget, is that transplants are a form of treatment too. Yes, there are side effects to medications. Yes, medications are expensive. But Medicare covers the first few years. Transplants require work. Learning. Diligence. Being aware. But, in return, you will have a life to share with your daughter and family where you don’t have to rely on a machine to live. You have been blessed with a live donor. I hope you will take this opportunity and run with it.

I celebrate my 1 year transplant anniversary Friday. I was so much better kidney-wise when I left the hospital after 4 days. It is major surgery so it takes time to recover. I was back to work in 3 months and have had pretty smooth sailing the whole time. I have PKD and was getting sicker slowly for 20 years, then much faster decline the last six months. You get used to it, and don't realize how sick you are until it stops. I am 65 and otherwise healthy. I will retire in few years and my wife and I are looking forward to an active retirement. Dialysis does not provide the same level of kidney function and ties you down usually 3 days a week, not to mention any complications.

I am so glad and blessed that I got my transplant. My matching living donor is my pastor. We are both doing great. The docs have gotten really good at this and I was off pain meds in one day. Every Saturday night is the pill organizer refill night and my family checks to make sure that I am taking my meds. My insurance company was so good about covering everything so far.

I was very stressed about needing the transplant and finding a donor than the actual operation. My last is my donor; I am at a Jesuit hospital; church members have come to the hospital to sit and pray with our families. If anyone was in God's hands that day, it was me. I fell asleep in pre-op waiting for my turn in the OR.

So I would say go for it. It has been such a blessing and restoration in my case. Good luck!

I have had a transplant for 30 years this past July. Mine was a deceased donor. I have far exceeded what any Dr ever thought. I am now 49 will agree with others, the pros FAR outweigh the cons when having a transplant. I have also been fortunate enough to be able to come off all my immunosuppresants also. I know this is a rarety but as time goes i hope there are others out there who get to do this. Dialysis was tough at the age of 18 when i started let alone what it would be like in ur 40's and on up. One thing u need to think of is your graft. I was 16 when i got sick and 17 when i started dialysis. Luckily i waited about a year for my transplant. I was put on a list immediately after diagnosis because my dr said at my age i would run out of graft places before the age of 40. It is not easy. The long term effects of steroids have done alot of damage etc. But i would never go back. The freedom of not having your life controlled 3 days a week, being able to travel freely without worrying about a dialysis unit being close by are such a relief. Yes it takes a bit to get used to your meds but it is no different then if you have other health issues that require daily pills, maybe just a bigger pill box. The pain is not comfortable at first but day 5 after the transplant i was in the clothes i came in and ready to go home although back in those days u were required to stay a minimum of 10 days in the hospital. Keep yourself healthy, watch ur weight and exercise which even as a healthy person you should be doing. And above all, talk to people!!! Be honest with your dr, family and friends. Tell them when your having a tough day. I truly dont think there will be many because i am hoping like me, you will feel amazing after. As for meds etc., there are alot of programs out there for assistance if you need it. This is something your social worker can help you with. If you can afford it, and have it as an option, double insure yourself through your work and spouses work before it gets worse. I believe the govt still helps for a year or so after transplant and of course there are also generic meds too. IN the event you should have a problem with costs. BUT do not feel alone in your concerns. They are legitimate. And ultimately this has to be right for you. I do hope it all works out for you. Many blessings your way.

LisaSnow
LisaSnow
in reply to Yankcg70

What country do you live? In the USA most centers recommend staying on immunosuppressive drugs for life. The dose is reduced as time goes on but never discontinued. It is a serious risk the doctors don't want to take.

Yankcg70
Yankcg70
in reply to LisaSnow

I live here in the US.

LisaSnow
LisaSnow
in reply to Yankcg70

How did you convince them to let you go off all meds?

Yankcg70
Yankcg70
in reply to LisaSnow

I think he realized that he knew the long term effects were going to be not good. Plus my labs were great. Creatine has been at a .07 for decades and maybe when im sick it might go up a point or 2 but then right back down. Ive been blessed with hardly any colds flus etc. So i think he was willing to ween me slowl over the course of a year. With the promise from me of routine labs etc and if i didnt feel right to come in immediately to be checked out

LisaSnow
LisaSnow
in reply to Yankcg70

That's awesome! So you are not taking anything? Not even prednisolone?

Yankcg70
Yankcg70
in reply to LisaSnow

Actually the prednisone was the first to go about 5 years before we started removing the immuran and cellcept.

hope1419
hope1419
in reply to Yankcg70

So, how long have you been without immunosupressants? Did you suggest it or your doctors did? And, where do you live?

Yankcg70
Yankcg70
in reply to hope1419

I had my transplant in 1989 in upstate NY. When i moved to west tx, my i had been with my new dr for about 2-3 years and she is the one who stopped the prednisone. It took about 4 months because your own body naturally makes a small amt of steroids but when you take things like prednisone, it can cause your body to stop making it, so we had to do multiple labs to be sure the body would start/continue its natural process. Then she retired and i found my current dr. I am the one who suggested about 5-6 years ago to stop the remaining 2 meds. He said that after 25 years, the transplant is as much yours as it was the original persons after all this time that we should give it a shot with an understanding that any sign of rejection and it would be back on them. He was very optimistic considering in all these years i had never had a rejection episode. I have truly been very blessed and lucky.

Be blessed for such a gift.

Patient-Empowerment
Patient-EmpowermentNKF Ambassador

Yes! It is worth it all. I'm a living testimonial for this statement of belief. Sure there are risks, but there are risks with dialysis too and dialysis offers far less benefits. The big takeaway is gaining a better quality of life with a transplant.

Do yourself a favor and compare side effects and challenges with dialysis to gain a fair comparison of your options. Nothing replaces the 24/7 function of a human kidney. The machine cannot remove all toxins, or replenish essential vitamins and hormones necessary for health and well being.

I found my fear of costs to be unfounded. (Insurance covered majority of costs). Even after 3 year drug coverage, there are co-pay cards from pharma MFG's that offer zero copays.

No one has a crystal ball and there will always be risks on both sides. Knowing you have an approved donor is such an incredible blessing. Most patients never get this far, and end up losing their only opportunity to get a preemptive transplant, which is the ultimate path to living your best life possible.

Hello hope1419, I am the spouse/sole careprovider of my husband who had his kidney transplant 14 months ago. He was super close to having dialysis with GFR at 13, but a cadaver match was found in 18 months of his waiting for one . The first 2 months he felt a lot better and had energy I had not seen in many years. HE is 59. The past 12 months have been very difficult with so many constant problems that are blood chemistry related which altered his lifestyle 'big time' and the stress I have felt working full time, caring for him, and so many things he could not do it has been the most difficult year of my life, to be honest. Last month, Jan was our first 'good' dr. visit in 12 months, his blood chemistry is normal and super super slowly he is feeling better and though his shaking/tremors from the Tacrolimus antirejection med prevents him from doing fine-detailed hand skilled hobbies he loves, he is moving forward the best he can, as I am too. WE have also thought as you have along the way, was it worth it. HIs brother had a transplant from his wife and the last 18 mos of his life on dialysis (at a center and lastly at home) and he said dialysis was horrible compared to the transplant. Yes the first 1-2 yrs are a bit difficult for some transplant patients, but compared to dialysis, there is not a question that transplant is the way to go to have more life to live on your terms with the people you love. My spouse and I are slowly moving onward in our lives and not yet making 'big' plans to travel or anything. No vacations last year as his red and white blood counts were so very low, no company over, a lot of being together watching television. The caregiver you have needs to be a very strong person or have more than one person. It was only me doing it all and I am strong, but emotionally this past year has been a hell of a ride adventure! I cannot say more than our experience here. I wish you the best!

I had a kidney transplant when I was 12 years old. I am now 72. I would not have lived if

I didn't have the transplant. I have had some ups and downs but it was certainly worth it.

Are you on dialysis? If so how is that working out for you. I think if you have a good match and good medical care you shouldn't worry about having the transplant.

Each person has to decide for themselves where they want to go with this.

Wishing you all the best whatever you decide.

hope1419
hope1419
in reply to swimmings

No, I am not in dialysis. I have to get a kidney removed before transplant because it has stones that may cause infection once I am under immune suppressant medicines. I would have to get dyalisis only if my GFR drops dramatically once the kidney is out and before the transplant, which can't happen until I have healed completely [about 6 weeks]

I was transplanted 15 months ago. My sister was my donor. I was able to return to work in 90 days. I have not had the difficulties many others report having. My gfr was a 6 at the time and I was never on dialysis. There are restrictions but I have traveled, I work full time as a Probation Officer and short of blood work every other week and the monthly infusion, I don't even realize I had a transplant. I have regained energy slowly but I am really starting to notice the improvements. Because I feel so much better I have been able to go on college visits with my wife and daughter. It's all been for the best so far. I hope what ever choice you make works for you.

LisaSnow
LisaSnow
in reply to MaddysDad

May I ask what infusion do you get?

MaddysDad
MaddysDad
in reply to LisaSnow

Lisa Snow---I am sorry for the delay. Every four weeks I receive 475mg of Belatacept(Nulojix). It is an immunosuppressant.

Thank you so much to all of you for your kind words and advice. I am glad to read about your succes and overwhelming YES, it is worth it!

I know something about how you feel. I am 48 next month with a 13 yr old and I go back and forth on if I could do it....but I am just starting the transplant work up, I talked myself into going through with all the testing (I had started and stopped, went into denial etc...) and I don’t have any living donor prospects, so if a transplant is even an option then I would be on the wait list...my opinion is trust your gut, and remember you can continue on with what you are doing now, and delay your decision, especially if your donor and doctors are supportive. It is wonderful you have the choice and ultimately it is YOUR choice and what is best for your life. Blessings to you. ❤️

When my kidney function decline so much, and I was told I has to fer on the list, I was taking care of sick parents who died within two months of each other.I had a total of 4 deaths in the family that year. I then joined a grieving group. While in the grieving process, I came to the realization that I was also grieving the lost of my kidney function and all tha could come with it. I also took some time to start the work up hoping rhe decline was temporary. When I finally passed that I went through with work up because o e thing is for sure, the sooner you are in the list the better, because the waiting is long and you can accrue time. So. Go ahead and get on the list. My daughter was 12 when I got in. When my GFR got to 10 is when I decided to have an article sharing my story and asking for help. Sometimes, we get scared about drastic changes, but, as so many have pointed out, it seems that the alternatives are even worst. You can seek and create an option for yourself. You would be amazed at how many people would want to help, once you overcome the frae of opening up, and putting it out there. For the longest time I never shared any thing about my feelings, but talking about it helps and we need the support of many people to go through this. Good luck with your work up. Think of your child and get it done. Then you will have options, and the cycle of decisions comes back again. Best wishes.

I had a transplant a year ago, and despite some problems it is far better than dialysis hands down. I was on hemodialysis 2 1/2 years, and it was very hard on me. I often got sick while on the machine, my graft required several procedures to keep it working, (it finally failed) and after each treatment I felt so tired I would go straight to bed after returning home. I am 58, and I honestly can say I seriously doubt I could ever do dialysis again, because I was so miserable. Yes it is worth the risk. I hope things work out for you.

nephron tom here: given your age ( I'm 65 ) your kidneys are most likely going to crap out to the point you'll nee hemo or pd....it's an uber personal choice, but I'm opting for living transplant from my brother, to hell with the risks.

I'm an RN and until they perfect an implantable artificial kidney ( 10 years maybe ), the risks associated with any form of dialysis currently available are substantial, real, and life altering.

This isn't to say some folks do "well" on dialysis and adjust without too many problems. Either way, it's a crap shoot. Do your research, and talk to people, both lay and professional. Best of luck.

I had a transplant 13 years ago. I’ve had ups & downs over the years and now mt transplant is coming to the end of it’s functionality. Would I do it again - absolutely with no hesitation. The freedom of no dialysis is worth it. Prior to transplant I was on dialysis and working full time. I was 47 at the time & felt like my life was over. You are fortunate to have a living donor - go for it and thank God for this gift.

LisaSnow
LisaSnow
in reply to Faith1020

So sorry to hear about your graft losing functions. Did it decline gradually due to meds?

I am still recovering from my first transplant 3 months ago. November 5, 2019 was my transplant date. My dad was my living donor and he is doing great. I thankfully did not have to be on dialysis but my GFR was 14 and my creatinine was over 4 so I was in a similar place as you. I highly recommend transplant. It's a treatment, not a cure, but you won't be attached to dialysis treatments and you'll have a lot more freedom in your life.

Hi hope1419,

I am a 42 year old with a 10 year old kid. I had a Kidney Transplant about 5 months ago.

I was diagnosed with CKD 15 years ago. My creatinine went up to 3.8/4 over that period.

While most days were ok, I used to get tired and fatigued towards the end of the day. I was not on dialysis but knew would need that very soon.

It was a difficult decision for me when the offer for the kidney came, even though i had gone through that scenario in my mind multiple times. I was going through the same senitments as you.

I was in the hospital for 4 days after the surgery. I started working (from home) after 7 weeks(part time) and now I am working full time. There are side effects, bad days, days when I am exhausted, axniety about the next blood test etc. But overall it has been good so far.

Hope everything works for you!

Dear hope1419,

I am answering you from My Own experience and, as such, I have NOT read any other Replies....

A Kidney Transplant IS a Wonderful 'thing'... no Dialysis, a Much Better quality of life AND 'Feeling' Much Better too. Yes, there are, Drawbacks.... Anti- Rejection Drugs, for life, and YES these do have Side Effects (susceptibility to disease, aches/ pains/ constipation -you WILL Know about this! Along with possibly...Eye, Ear, Skin (Skin Tags, 'odd' growths, warts, athlete's foot... and so forth)). However, outside of all of this, your Life CAN continue 'Fairly Normally'.

For a few Weeks, probably Months, after Transplantation you will have Very Frequent 'Check Ups'- initially twice a week. These should become Weekly, then Two Weekly...finally about three/ four times a year. About eighteen months, after the Transplant, you can be 'Handed Back' to your 'Referring Hospital, for your Ongoing Care. I now see a, very understanding, man Dr Andi at The Ipswich Hospital. I AM however seen by Professor David Jane's Team, at Addenbrooke's Hospital (were I had my Transplant) Once a year.

Whatever Advice, has been 'Offered' in these Pages, you need to Speak to, your own Transplant Team. They WILL answer, any questions, that you have. One 'Point' that might, well be worth asking, has the Procedure/ Process CHANGED in recent years. I personally doubt, that it, has changed much.... but it might be Well Worth asking.

Can you let us all 'Know' please hope1419? I know that we are ALL sending you, our Prayers.

AndrewT

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