What is your experience post transplant?

[Powerfalcon]

I am posting for the first time. I am , still working and I have known about my PKD for twenty years. I am just now getting ready for a live donor transplant this December and I am feeling overwhelmed. While I have slowed down significantly these last few months, I find myself very worried that this will be the new normal between the anti rejection medicine and hearing how people are feeling on the posts after transplant. Question: How soon will my life be back to "relative" normal? My mother was on dialysis for twenty years and I have a great fear of that road she experienced. I would love to hear your experiences.

[AndrewT]

Dear Powerfalcon,

I can't answer your question exactly, as I had to give up work when I first fell ill. I developed ANCA Vasculitis, that damaged my Heart, Brain and Kidneys. I did however have a Kidney Transplant way back, in July 2013.

Yes you ill need Anti-Rejection Medication, for the rest of your life- which WILL start at a High Rate but should reduce, fairly quickly afterwards (depending on your own Progress). You will be in Hospital, around Ten Days- assuming all goes Well for you. (If you want any further detail, on the exact Procedures, please let me know. I'm just giving you an 'Overview' for now.) Once out of Hospital there will be regular 'Check Ups', initially Twice a week, although these should reduce quite quickly. By the way 'Things' CAN go wrong, sometimes very wrong, but these instances are VERY RARE indeed. One of the reasons you have to attend the 'Check Ups' very frequently, to being with, is so any Problems can be 'Ironed Out'. Put it this way....On the one hand your are having, part of, someone else put INTO you, which might seem Un-natural....On the Other hand the Surgeons perform these Operations ALL the time- I was the THIRD, my Surgeon had performed, that day!

Will you be Sore/ uncomfortable? Yes you will, but NOT for that long. Will you have to 'be careful' what you eat/ drink? again yes, but again not for long. Will your Medications be Changed/ Amended? Necessarily Yes, of course. How will you feel? I can't answer that...except to say, you won't have to go to Dialysis anymore! As I said if you want a More Detailed explanation, of the 'In Patient' experience, then let me know- maybe nearer the time.

I hope that I have been of some help Powerfalcon. Kind Wishes

AndrewT

[Dara3351 in reply to AndrewT]

I has my transplant in Feb 19. I had the surgery Tuesday morning and was released Thursday night. The Dr’s had me walking the next day. I actually had no pain. They say about 20 pounds of fluid loss is normal. You will need a caretaker 24/7 the first two weeks. You will feel week but each day you will get stronger. My son was great but didn’t let me slide on anything. The transplant team had me take my temperature, weight and BP which I logged into my transplant education folder.

You will need to walk so you will not get blood clots. The hospital will give you a breathing apparatus so your lungs will receive oxygen from the bottom of your lungs as you breath in. You will visit with the transplant team twice a week and get your blood draws so the team can monitor your progress. Eventually you will then get weekly blood draws which will taper to every two weeks and then you will get transferred to a nephrologist who deals with transplant patients. Your meds will change based on your labs.

I was never on dialysis so I cannot help you there. I did accept a cadaver kidney with Hep C, did a 12 week treatment and now my labs show no Hep C.

You will go through lots of emotions but stay positive. You have been handed a gift. My life is not limited in any way.

As in any life we have our ups and downs. Just enjoy the gift.

[DexterLab]

I had a living donor transplant Feb 7. I too was running down, physically and mentally, before the transplant. I was better before I left the hospital. I have PKD as well. My blood pressure went to normal, first time in 20 years, kidney function was near normal after 2 days, and I had bony ankles for the first time in forever. I left the hospital in 4 days, but it could have been 3, except getting meds together on a Sunday was too hard.

Continuing to do well. My stamina is back after about 6 months. It is a major operation. My mental focus was back much sooner. Meds and I are getting along. It seems like a miracle. Good luck!

[Patient-Empowerment NKF Ambassador NKF Peer Mentor]

Hi there PowerFalcon! I'm a post-transplant PKD'er and I'm living my best life ever! I too had a living donor and was able to bypass dialysis. Your best life chapter awaits, though there may be a few bumps in the road during your first 3 months as your labs indicate medication dose changes and your body settles into those changes. I can also tell you that these hiccups are NOTHING compared to what our parents suffered on dialysis! Just plan 6 weeks of pure relaxation and pamper with no pressure from work or otherwise. (And keep yourself healthy and out of harms way, so you won't catch something from anyone else!). After you receive this incredible gift of life, you won't be worrying about when you'll be "able" to do all the things you fear you won't be able to do. You'll be too overwhelmed with immense gratitude and all the blessings that allowed you to get to the other side of this equation. Give yourself permission to let your gratitude swallow your fear. A better and longer life awaits you, if you allow it to flow. - Risa Simon

[Transplant314]

I had my transplant in March 2019 having had PKD for 40 years. I was training to do home hemodialysis for six weeks before my donor came through. I am 63 and I believe age plays a huge part in your recovery time The first three months were tough with different ups and downs such as edema, rising creatinine levels, fogginess, headaches and exhaustion. At four months I turned a significant corner and many of my symptoms stopped. I started to engage in more exercise, went to restaurants etc. tell your transplant team everything going on and question them, drink plenty of water and be patient. Transplant surgery is major and the body takes time to heal.

Seven months out I still have twinges of pain ay the surgical site, worry about creatinine levels and am always aware of my new kidney. But considering the alternative a transplant is the best option.

[Powerfalcon in reply to Transplant314]

Thank you so much for your and everyones replies to my question about what to expect. My big take away is the first three months vary greatly and don't make any big assumptions on how you will feel or be. As much as I thought I was prepared for this life change, I realize nothing can prepare you for the gratitude, fear, confusion and excitement for this next chapter, thanks again

[bakermaker222]

Hi I am 3 weeks post transplant. I am feeling great. I am overwhelmed with graditude and thankfulness. The anti rejection drugs have been really no big deal for me. I wonder about other people's reaction to them.

[Sparklyjo in reply to bakermaker222]

My kids both had no reactions to the , other than the initial shitty situation lol not good when one has his leg in full plaster from top of thigh to toes, it was gross pmsl neither has moon face and to look at them no one believes they are ill/transplanted it's great xxx

[Sparklyjo]

Both my sons had double transplants when the were little , the youngest has a liver and kidney at 25 months and the older had 2 livers aged 4 , we had 3 transplants in 9 months greedy huh? Lol you would know that they had anything done, we forget what they have had done sometimes and wonder why they are tired lol these are major ops, give yourself time to recover, don't rush yourself and make the most if every minute of your new life . Good luck sweetie xxxxx

[Powerfalcon in reply to Sparklyjo]

Thank you and enjoy your boys! I love hearing all of your experiences especially when you forget you have this silly kidney disease.

[Sparklyjo in reply to Powerfalcon]

They have primary hyperoxaluria type one it's actually a liver condition but affects the other organs , it calcified their kidneys . My youngest lads kidneys failed totally at 10 months so was on haemo dialysis for nearly 16 months . It certainly makes you really appreciate your kids and not take them for granted like a lot of people do xx

[Monica4268]

Dear Powerfalcon, first and foremost, it’s a blessing. No matter what comes your way, you are blessed to have been given the gift. As everyone has already expressed, each individual’s response after the transplant will be different. I am a year and half post transplant and doing wonderfully now. Am full of energy, walk over 6 miles daily, constantly moving. However, I certainly did have some i obstacles to overcome after surgery. My transplanted kidney did not work immediately. It took a lot of watching and work on the nurses part to get it going. I was released after 5 days. I did have some issues with my hemoglobin so was readmites a couple of time for transfusions and then scar tissue formed at the connection site of the kidney to the bladder so they had to insert a drain for about 4 months to see if they could stretch it out. I was out of work for about 7 months and then worked from home. But looking back, all of it was worth it because I am not connected to a machine to stay alive, I am living life to the fullest. Go into it with a positive attitude and a grateful heart. You will do great! Good luck 🙏🏻❤️

[bakermaker222]

Hey Powerfalcon, I received a kidney 5 months ago and feel really good. I have never been on dyalisis. I am 68 years old. I actually went home the next day and took no pain meds. I kind of pushed myself because I wanted to get back to normal. At first the drugs can be overwheming, as them were for me. After they taper down it becaomes a lot more manageable. I am very active and feel great. I am so grateful to have gotten this kidney. I am just trying to give you positive feedback. Some days I was more tired. If it happens to you just rest a little more. I wish you the very best.

[hope1419]

I am curious to know if you have had your transplant yet, and how has your experience been. I am going through a similar overwhelming stage, and I received similar responses as you did.