Kidney Transplant help

[Highgfr]

Hi everyone! Hope everyone is having a wonderful Sunday. I got a call from a gentleman who’s been trying to test as a living donor for me. Mayo Clinic has approved him. We are so excited, grateful, thankful, humbled and yet nervous at the same time. ****Can anyone tell me what they have experienced when they had their kidney transplant and then immediate weeks afterwards. How you have dealt with the medicines, which ones worked best for you? The surgery itself? When do they start reducing the meds? What do I need to look out for the most and how can I make it easier at the time of surgery and afterwards. I go to Mayo over the next few weeks to be rechecked and make sure I’m ready for surgery. Lord willing, the surgery would be mid or end of July. I started hemodialysis three weeks ago and waited until I could hold on as long as possible. I was at a GFR of 5. It has gone fine except for having a baby fistula and getting used to the needles. Haven’t had much improvement since starting dialysis but staying positive and believing the Lord for each time to get better and better. But, thank you so much for this forum and for all the help so very many of you have given to me with my crazy questions and lack of knowledge. You all have helped me more than I can begin to say. God Bless each and everyone of you. ***So, if any of you awesome transplant patients can share with me some tips I will be forever grateful. Thank you thank you. ❤️❤️

[Bassetmommer NKF Ambassador]

you might want to ask this is the kidney transplant forum It is a sister site to this one

[Tolmezzo]

Hello, do not be to much worry about what is best to do before and after. Your transplant team will advice. Trust them and follow instructions. Surgery will take around 3-4 hours. You will wake up in a new life. You are blessed to have leaving donor. Rgs

[Highgfr in reply to Tolmezzo]

thank you for such good advice. It is greatly appreciated. God has been in this from the beginning and we looked to him for every step of the way. Thank you for the information about how long the surgery takes. I ask different recipients how they handle the medicines and if they’ve had any issues with any cancer showing up. God willing, I will have no issues and the good Lord will keep us all protected. We are so excited and feel so very blessed and humbled to be given such a gift. Thank you again for your input and your encouragement. God bless you. ❤️❤️🙏🙏

[Porter20]

My kidney transplant was such a blessing and went so fast and healed so well. It was absolutely no pain just a bit of discomfort from surgery. The blood draws were the only thing that seemed to be annoying just because you go so often and I had my transplant in the thick of Covid.

Best of luck to you hope yours goes as smooth as mine did.

[Highgfr in reply to Porter20]

thank you so very much for your response. It is nice to hear how wonderfully it went for you. What a blessing. Can you give me any advice on the medicines you have to take and what works best for you? Also, how did you adjust to the new diet and are there things I need to really watch out for more than others? Thank you again God bless.

[Porter20 in reply to Highgfr]

I take Prograf 2.5 twice daily and myfortic 180 twice daily & prednisone .5 daily. I feel fortunate not many side effects.

I hand a small hand trimmer that went away and my hips & back hit some. Mostly if I have a lot of dairy it seems. Otherwise I eat what I want. I watch carbs because I am pre-diabetic from medications. I have been released from transplant and go nice yearly now. I go every 4 months and have bloodwork monthly. My eGRF is 1.28 but my normal is 1.45-1.72 so, my kidney is doing better than expected currently.

I hope it stays this way for many years to come. I have a living donor kidney and was blessed with a fabulous Nephrologist during transplant.

I wish you only the best! God Speed. The Lord is the great healer! Give it to him.

[Highgfr in reply to Porter20]

AMEN! Yes He Is!! Thank you for sharing such wonderful information. It will certainly be a help in the days ahead. All we can do is put our trust in Jesus and know that he is in charge in everything. You take care, keep the faith, and congratulations on a healthy kidney. God bless you !! ❤️❤️🙏🙏

[Porter20 in reply to Highgfr]

Thanks🙏🏻🥰

[Ziggydoodah]

I'm still on dialysis. However I became friendly with a woman, whose husband was to be her live donor. She agreed to text me after her operation. I was expecting to hear back from her a week after. Three hours later, she texted me to say it went well. I was speechless. Another two hours later, she sent a photo sitting in a chair with a thumbs up and a huge smile. That was 6 months ago and she us thriving!!! Wishing you all the best my friend x

[Highgfr in reply to Ziggydoodah]

Hi Ziggydoodah!! YOU just made my day. Thank you so much for the update. Congratulations to your friend. So glad she is doing so well. What a miracle. Thank you for your encouraging words!!! Mayo transplant scheduling called to line up my pre surgery testing to make sure I am still clear for surgery. It is this week and next week. Please pray that I still check out ok and surgery can move forward. Thank you!! God has been so good during this journey...I could never deserve his grace and compassion. Praying that you are doing well and wonderful things are in store for you! You are always such a blessing! Love and hugs!!

[hope1419]

I had my kidney transplant 3 months ago, also from a living donor. I was as nervous about it as you are. I'm 50 and I hadn't reached dyalisis, but I want to guess I was close. The surgery itself was really simple for us. No complications. I was surprised at the size of the incision,, but ir got sealed instead of stapled, which was a blessing. I was advised at the transplant center to start walking rhe next day. Little by little. The medicines have been the hardest part of all for me. Not because of side effects yet, but hust because the amount. I started taking 40 pills a day. That was surprising. They talked to me about 3 kinds of meds preTransplant, what I didn't know is that you may get upto 7 pillos of some twice a day... on top of what I was already taking, and other ones to prevent infections. My new kidney works so well that now ai have nmbeen draining my electrolytes. So I have to take magnesium and phosphorus. At fist it is a balancing act, but your transplant team guides you through it. Remember antirejecrion meds are for life. They have to find the right amount for each patient and it takes a while.I was fortunate to be at the hospital only 3 days. However, as I live far from my transplant center and had issues with electrolytes, I had to stay near them and away from home for about a month. You need to have one or more caregivers to help you around the first weeks after surgery.

Before your appointment, have a list of questions for your team. They can answer better. You will notice improvement right away, especially from a living donor.

I was very concerned about being immuno compromised. I had people deep clean my house and where I was staying. However, it has been easier than I thought. Be alert to tips on what not to eat (raw or not fully cooked items like eggs, or meats,) clean fruit and vegetables really well. I got really good tips in this forum. I have started to go out wear a mask, and be mindful of people around you. I read several posts from this forum and kept notes on. What to watch for. I was so nervous. But at the end, transplant os the best option. I comes with its own baggage, but it is a new lease in life. I am still nervous about going back to Work, but I trust God will show me the way.

Trust in God. He put your donor on the way for a reason, and He will get you through it.

[Highgfr in reply to hope1419]

I can’t thank you enough for all that amazing and informative information. Thank you so much for sharing your experience and the pros and cons you had along the way. I shared it with my family and they are appreciative as well. You answered many of my concerns and showed me a picture of one possibility. I know everyone is different, and we are praying that I handle them as well, and will be very careful with the food I eat. I know I have a lot to learn, but God is there still at all, just like you said. He goes before me, behind me and all around me. My hope is in Him! And with that promise and with that knowledge, we are praying that all goes as well as it has for you. So very, very happy for you. You are truly blessed. Congratulations on your new lease on life. Yeehaw. I will let you know how things go. I have my annual check or what they call the recheck this coming week. Please pray that all my parameters are still as good as the first time I was approved and we can move straight into transplant. Thank you so very much. Nothing better than prayer warriors. Take care and God bless. (Please pray that I can handle the nuclear stress test better than last time. I passed it, but it was so hard. The pressure on the heart and the difficulty breathing through the end of that nuclear test is really something. Maybe it was just me, but I hope I do it ok. Thank you again for your prayers.)

[hope1419 in reply to Highgfr]

I am glad to help. Look at my previous posts about my doubts and transplant. You may find some info there.

[Highgfr in reply to hope1419]

Will do and thank YOU! By the way....did you have any side effects from any of the meds? What do you focus on eating now that you have the transplant. Any tips or advice to help avoid infections or risks?

[Jamok]

Hi, congratulations on finding a generous, kind and selfless living donor who is your match!

My kidney came from a deceased, brain dead on life support (similar success rates to a living donor)9 yr old girl with a Kdpi rating of 19 free from disease. I’m 60 and this kind of kidney never goes to someone my age. God’s involvement is undeniable, it is a true miracle!

I am 3 months out from a preemptive transplant and my recovery has been slow but steady. Everyone’s experience is different. The surgery went well with my kidney working immediately. I was surprised to wake and to find that the kidney was placed on the left side where a ct scan confirmed I had diverticulosis. I regret not asking about placement as I assumed it was going on the disease free right. I have been having GI issues and I am thinking the displacement and handling of my colon during surgery has contributed.

I did have quite a bit of incisional pain. It felt like a severe side stitch. They had me up and walking within 12 hours of the surgery and I discovered that if I got the IV pain Med. right before I had to walk it was so much better! I had my surgery on Monday and was sent home on Wednesday with the catheter still in place. I had to go to the Transplant Center on Friday to have it removed and that was the hardest day! I had to use a wheelchair to get from the hospital lobby to my appointment because it hurt too much to walk and I was exhausted. Catheter removal was fast and painless and the freedom from the bag was great. The first month is a busy one with labs 3 days a week and transplant center visits once a week. Three 1/2 weeks after surgery, they removed my ureter stent which was not a big deal at all. The staple removal at three weeks was a bit painful and I’m glad I took a norco prior to the procedure. The second month I had to get bloodwork 2x a week and third month once a week. Transplant center visits are once every two weeks. It all goes by pretty fast.

My transplant center is considered steroid free. I received high doses of dexamethasone during the surgery and was tapered off by the end of the first week. They also gave me an induction drug during my surgery which keeps your immune system super low for the first 2/3 months which is why I have had to be pretty isolated during this time. My immunosuppressive drugs are Envarsus 7mg once a day and Myfortic 360mg pills one in the morning and 2 at night. I was taking generic capsules but had horrible stomach cramps so they switched me to the slow release Myfortic. I’m also on a sulpha based antibiotic, an antiviral, baby aspirin, and Pepcid. My kidney failure was from a genetic mutation called ADTKD MUC 1 so I don’t take diabetic or blood pressure meds.

Everything has been going pretty smoothly and with every week that passes I’m feeling more like myself. After the first 6 weeks I began to feel a sense of joy and hope for the future and now 6 weeks later I am getting my passion for life and motivation back. I’m still struggling with my GI issues mainly some mild discomfort and tenderness mostly in the area of the surgery but hopefully this will improve when they start tapering me down IF after they do the kidney blood test to check for any subtle rejection, everything looks good.

I, too, am concerned with the increased cancer risk especially since I experienced a non-invasive cancer in the past when I was taking Medrol steroids. Kidney disease is a bigger threat to my life so I don’t focus on the what ifs. Instead I’m going to do everything I can in my power to stay healthy like wearing sun protection and keeping up on skin, breast and colon screenings, exercising, and healthy eating. And then I’m relying on our Heavenly Father who has brought me this far to continue to guide and protect me until the number of my days here have been fulfilled. I’m going to live a life worth my little kidney bean’s sacrifice with gratitude and purpose while focusing on being a blessing to others.

I hope I answered some of your questions. It’s an exciting time and I’m praying all goes well for you. Happy to answer any other questions any time. Take care, J

[Highgfr in reply to Jamok]

WOW! What an incredible journey you have been on. Thank you so very much for sharing and breaking it down for me. It is so amazing how the Lord worked it all out and has truly been with you this whole time.What a MIRACLE! This helps so much and your experience is beyond value. You should write a book!!!! I greatly appreciate the info about the meds. I pray the doctors reduce my meds quicky and I can tolerate them all. I do better with brand than generics. Do they cost much???? Was any one specific med harder to take than others . When I was 36 I lost my left kidney to cancer, a rare form. Have had No other cancers except a tiny mole we caught and was a melanoma trying to start. Had it removed thank the Lord. I'll miss bathing in the sun but it's a small price to pay for such a gift. ***Can you tell me what is the main focus of your diet since transplant and what cautions you have to take since translant? I have heard and read we have to wash everything and some foods are off limit. Right?