I was diagnosed with PKD at 22 and am due to need a transplant in approximately 2 years or less. The truth is, I'm absolutely terrified. I'm scared of the operation, being in hospital for 5 days, of the immunosuppressants, getting diabetes, getting cancer, so many things. My mental health is really suffering. I am constantly dwelling on it all the time. I just don't feel like I am enjoying my life at the moment.
I am really looking for help and support. People that have been through the experience. Is it bad? Do you really get your life back? I have a 9 month old son and a Wife and I just want to be there for them. Any words of advice you can offer would be really helpful.
Thanks,
T x
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Trismo100
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I was diagnosed with PKD at the age of 60 and managed my decreasing kidney function for 5 years. Eventually I needed a kidney transplant and 3 years ago I had the transplant. The first 5 days after the op were difficult but every day I felt better than the previous. Eventually when discharged I felt like a new person. You have to be very focused on taking your immunosuppressant drugs when your consultant says you should. It becomes just part of life. Now my wife and I travel and enjoy life. You must look after your kidney and attend regular hospital checkups for the rest of your life, but this is little effort compared to the benefits.
Once you are condemned to kidney failure you have to accept the fact that your life is going to be medically compromised in some way and can never be perfect, so the question then becomes how compromised it is going to be. If you are on dialysis, as I was for about nine years, I would say your quality of life is about 20% of normal, first because the treatment takes up nearly your whole existence, leaving little for your actual life, and second because dialysis replaces only about 10% to 14% of your normal renal function, so your health is in a constant decline the longer you endure dialysis.
All of this means that you have to consider a transplant if you really want to live again. For me it has meant a complete return to normal life, apart from the truly minor inconvenience of having to take some pills every day and show up for a follow-up appointment at the transplant clinic every four months. Aside from that, everything about my life is just the same as it was before kidney failure, apart from the worry about the kidney eventually failing (transplants only last about 15 years) and having to return to dialysis.
I know there are some medical risks of transplants, both in the procedure itself (which is fairly routine by now, since it has been done successfully since 1954) and from the immunosuppression (in terms of a heightened cancer and infection risk), but these are far outweighed by the benefits of having at least some life after kidney failure, which cannot really be the case if you stay on dialysis.
Hi, I was 10 when they found out had chronic kidney disease but managed to get to 30 years before having transplant in august last year and can honest say that I’ve never felt better I also have young family I did have a infection and white blood cell issues but was easily fixed and feel so lucky to have this chance as I know a lot of people still waiting. As the the side effects of the drugs I know many people to get cancer and not be on any drugs just have to look after yourself and know your body I guess and enjoy life with your family I feel lucky everyday to be enjoying life like a normal person compared to no energy all the time. Your be fine!
Hi I had my transplant 15 month ago please dont be terrified I was 62 with diabetes when I was transplanted. I was home in 7days yes it was painful but not has bad as I thought it was going to be I rested and did what my body was telling me to do. After about 10 month I was back out dancing I drove within 8week .the meds were adjusted a few times until I was on the correct dose I have been on holiday twice abroad and now feel a lot better with more energy and have gone back to work for 20hours week. You.ll be fine I'm sure my kidneys were only functioning at 8% when I got my transplant good luck and stop worrying go out and enjoy your life until you need the transplant 😊😊
Hi, i’m 26 years old and i just got my kidney transplant on July 28th 2020. Like you, i was TERRIFIED of getting the transplant. I was affraid of the surgery, having the best match, the side effects of the medication. Trust me i get where you are coming from. But honestly, this transplant has been a blessing. I realize now everything i could do anymore du to dialysis. I never realized how it affected my day to day life. It’s the best decision i’ve ever made for myself. I understand you have a wife and a baby and that you want to be there for them. The best way you could be there form them is to be the healthiest version of yourself and to feel good inside to be able to give them all your attention and love.
If you ever have questions, don’t hesitate to ask me
My transplant experience was not all rosy especially for the first 3 months due to adjustment of medications but it was all worth it at the end (still adjusting medication lol!). The risk of diabetes and cancer may be increased for some, but you have control over how well you manage that risk. The no. 1 benefit of getting a transplant to me is that you have MORE CHOICES on how to, and how well you live your life. For me, that is the key to a quality life.
I’m so sorry you are afraid of a transplant. Best decision ever for me. I was lucky as I never went on dialysis. I think that would be worse. The worst part for me was waiting for a kidney. I was walking the next day and did so well I went home a day early. I am now 18 months post transplant and doing great! I watch my diet and drink my water. I used to worry about everything. If you can’t change it, why worry? Live your life to the fullest! Since my transplant I have had an endoscopy, my gall bladder removed (runs in my family) felt great after all this. Just had eye surgery and doing well. I’m 69! Go with the flow! Enjoy your life!
Hey. Don’t worry. I had my transplant two years ago. No problem No pain really. A little discomfort after op. But you are on pain meds so don’t worry. The meds are fine. Just get into a routine. I am 66. I am back scuba diving. Cycling daily. Workout 3 times a week. What you must take care with just now is Covit 19.
I can fully appreciate your worries and concerns and I know it is a shock when you are diagnosed. I was at 11 PKD before I was aware of even having failing kidneys! I was 63 at the time and was offered physiological help to help me and I would suggest you ask your medical team about this type of support.
It's tough to accept you have a life changing problem but with treatment it's not the end of your life but a change in your lifestyle. The biggest change for me was the going onto dialysis I went with peritoneal dialysis to have some control and it does mean a large section of your day is devoted to it but you do have more control over the timing of treatment.
My actual transplant ,after the initial recovery, felt like the restart of my life under more of my control . I did have to take lots of pills after the operation which have reduced over the 5 years since I had it but I do have to take pills every day and attend regular hospital clinic. However my life is back to normal since the transplant and I can do many of the things I used to, possibly with a little less energy! Which I blame on the drugs, and my Nephrologist reminds me I am getting older and he does add "these drugs are keeping you alive"!
Any operation is concerning and my kidney transplant operation was the first time I had stayed for any length of time in hospital but I woke up from being a person that had to do multiple dialysis procedures a day to one that just had to "pop a few pills" each day!
I was lucky enough to get a live kidney transplant from a family member for which I am eternally grateful.
I guess the bottom line is if you don't have the transplant, life will not get any better for you but after the transplant you could carry on with enjoying a reasonable life with you family.
I hope my experience helps and I wish you all the best for in the future.
I had my first Kidney transplant back in 92 at approx 25 diagnosed like yourself nearly 2 years prior. Lasted nearly 29 years😃 Not bad for a cadaver Kidney. Try not to worry yes you do need to make adjustments to your lifestyle but stay positive. It is a stressful process but it's not that painful your well looked after by medical teams and if anything is going south they'll be on it and sort out quickly.
with regards diabetes, keep to a healthy diet and don't restrict yourself just be sensible, Also include some exercise when your able too. I've never really stopped eating or drinking just remember your getting a second chance so don't waste it live your life.
Now I'm on my 2nd transplant post 12 months and this was a living donor., been recently diagnosed with Non hodgkin's lymphoma partly due to one of my immunosuppressive drug. Luckily all looks good and treatment has put in remission hopefully😎, baring in mind had been on that particular drug approx 30 years.
I hope this helps and puts your mind to rest slightly.
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