Hello, I just found out I need a kidney transplant. I developed kidney disease from taking a medicine that scarred and damaged my kidneys and they’ve just gotten worse and worse.
After a biopsy, we discovered that my kidneys are even worse than the numbers show.
I am so overwhelmed. My mom could possibly be my donor, but if she is, she wouldn’t be able to be my support system after we both have surgery. I’m not sure who could support us if my mom is my donor. Plus, my mom isn’t in perfect health anyway, so I don’t know if she can even donate. I’m very anxious about finding someone to donate and/or figuring out who will take care of us if my mom is able to donate.
I’m at the very beginning of a long process and I’m already quite overwhelmed.
Thank you for reading, I just had to get this out.
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Spaghetto
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Thanks for sharing. Keep in mind dialysis is an option while you are waiting. It will give you time to think things out and make plans. You can only take one step at a time. Try not to be overwhelmed. I know that is hard. We have all been there. Give yourself time to cry and then take a step. Sharing on this forum was a good first step. Take care and keep us posted.
yes it can be scarcy .first step you have to do is get evaluated at transplant center they will put you through test . You have to get on the waiting list even if you have a donor. My daughter try to donate to me she had to go through a round a test . If your mom can donate to you she will have her on people at the transplant place you are using. My daughter could not cause she did not match me . We could have try a pair exchange but her plate is so full I didn’t want her to do that plus right now she a little overweight and that disqualifies you. If your mom is not healthy they will not let her donate . It all scary I just started dialysis in February. I’m doing pd dialysis . You just have to take it one day at a time sending prayers your way .
I agree with what Beachgirl32 said. You get to go through a wonderful battery of tests to make sure you are safe to transplant, and any donor goes through a bigger set of tests to make sure there is every expectation that they would thrive on only one kidney. They want to have two healthy people at the end. I got my donor kidney just over 4 years ago. The most stressful part of the whole process was having to ask. It's not like selling Girl Scout cookies. My center said to cast a wide net, cause you never know. I ended up asking at my church, cause that's the kind of people that go there. The pastor ended up being my matching donor. We are both doing well.
Good luck. This is a lot of stuff all at once. Get through the testing, and then take on the next thing.
Why hello friend! Firstly, I know this news is very scary and overwhelming. Please know your feelings are valid and you have found a wonderful community who is happy to listen.
I hope that you can find a donor, whether that's your mom or someone else, and wish you smooth sailing in your journey towards transplant. Please don't hesitate to reach out should you need to talk to someone. My inbox is open. 💚
i cried for 2 days when my kidneys failed…but it gets easier to handle. I sent out an email to a select group of people I know asking if they could donate, or if they knew someone. Several folks offered to donate, & I found a friend who was a match via the letter. Then I hired a friend to research which hospital in the west had best 1 & 5 year success rates. If you get on dialysis…they can give u antidepressants that help lift the sadness. I worked fast to get my transplant …so I’d be on dialysis as short a time as possible. If your mom is overweight…she can work to lose weight in 6 mos, but depending on her issues, she may or may not be eligible to donate. No high blood pressure, cancer or other previous issues.
Breathe…& try to stay positive. A kidney transplant is the best organ to fail…as you have another chance if it fails. Other transplants …ie lung, heart or liver normally have 1 chance. Try & keep happy people around you who are supportive. You can do this!
I'm so sorry you are going through this! But you are definitely communicating with people who have been through similar if not identical situations so please reach out as often as you want to. It's all overwhelming so don't try to process everything all at once if you can help it - use the old AA slogan "one day at a time" (trite but true).
I will just say try to work on getting listed if you are not already - then let that transplant center help walk you and your mom through the steps pre-transplant, transplant and then recovery - that's what they are there for. You will receive much much information. Simultaneously work on a list of people in all the circles of your life you can communicate with and think about how to best connect with them - not only as a donor but also asking them to broadcast your need (many people use social media). Take care and reach out anytime. ❤️
Hi Just read your post, do you have a brother or sister? George Washington University Hospital and Mayo Clinic were doing kidney transplants using adipose stem cells which are taken from the donor to the recipient. The beauty is that no anti rejection medication is necessary after transplant which are at the beginning is challenge( your body gets used to them in time). If you are a match with a relative please explain that there is no cost to them and they if healthy can back to work within a short time. Often donor are very frighten and often don't think they can resume life. This is not true unless they have a multitude of medical problems themselves. They then would then not qualify to be a donor. IT does not necessary have to be from a family member or contact. your local church to see if any members of the. congregation would be possible donors.
IF it is possible to find someone to donate they can call Kidney organizations or transplant social workers at a hospital so they could speak to an individual who has already resume life after a transplant. Best of luck to you. Advertise in your local area or newspaper with a photo, you would be surprise the response you have Stay positive. and yes, if need be you can do peritoneal dialysis at home and resume work and daily activity. Also not to be preachy here, if you need to loose some weight do try to go on to a eating plan to loose weight to help you post transplant. Also if you do have a transplant. BE EXTREMELY CAREFUL what you pick up weight wise. I gave myself a hernia just pruning bushes( I thought I was ok and I wasn't strong enough. Best of Luck,
I agree with everyone here. Please take things one day at a time. The first step is to ask your doctor for a referral to a good transplant center. Then, the transplant center will lead you through the steps - they'll ask you to undergo a series of steps to see if you're a candidate. Sometimes one is approved, other times one is turned away. If you're approved, there are two ways of getting that precious kidney. One way is to find a living donor (a friend, relative, etc.) willing to donate a kidney, the other way is to get a deceased donor kidney. In our case, my hubby was urged to find a living donor, particularly within our family. Unfortunately, our adult children have issues that made us very uncomfortable going that route and I was considered too old. So he simply informed the transplant team that, while we would do our best to reach out to others, the best option was likely a deceased donor kidney. And we also told them we would consider all deceased donor kidneys including those with some conditions. As time went on, we noticed some transplant centers had very short waiting times for deceased donor kidneys so we double-listed with one with the better outcomes. (The one center shared labs with the other.) In exactly one year after going on dialysis, my hubby received his precious gift from the center with the better statistics. The donor was deceased middle-aged man who had passed for a time before being found and he also had a fungal infection. (My hubby was put an antifungal meds for a time after the transplant.) My hubby is now two years post transplant and the kidney is performing well. So please step out in faith - follow the process with a center that performs at a high level and has good outcomes. Here are two nifty links that provide great statistics on all centers in the US:
Now, I’ll share a little about my transplant experience with you.
I’ll be 7 months post-transplant on June 16, 2023, this coming week. I’m single and live alone. I have no living family left. While I had friends lined up to come and care for me post-transplant, that didn’t work out. Why? My deceased donor kidney arrived shortly befor Thanksgiving last year. My support team members had either gone to relatives for the holiday or would be leaving within a few days. I didn’t want to ask them to miss the holidays with extended family.
In addition, I fell and seriously injured my right foot 3 days before the donor kidney came; 3 days before I got “the call.”
They moved forward with the transplant anyway, thankfully! I was released from the hospital to a rehab facility for a few weeks to come up with something for my ankle so I could get around my house independently. Then I went home, shortly before Christmas. So my support team members were still doing holiday stuff with extended family while others had picked up COVID while flying for the holidays.
The transplant team social worker helped me find and contract with a home helper organization so I’d have in home help for my first few weeks at home or until my friends were available, whichever occurred first.
I mention all of this fir two reasons: even the best formulated plans may go by the wayside and your transplant center WILL be able to help brainstorm ways to make this work for you post transplant. Just visit openly with them.
And finally, my deceased donor kidney is AMAZING! Neither it nor I had CMV pre-transplant. Still no evidence of CMV. BK virus checks continuously come back clean. It began working immediately and has worked well ever since. I’ve had no issues with the anti-rejection meds and I’ve got IBS so expected I would have problems…
So, take a deep breath. One step at a time. This will work out exactly as it should for you.
I am sorry for your unhappy health news. My journey from diagnosis to transplant took 11 years. Before you take off on your journey, please start NOW being careful what you eat, medicines you take (NO ibuprofen; use Tylenol instead), watch your weight.
Search the net for a CKD diet (drink less water; eat less protein -- especially meat; read labels in the grocery store and try to avoid eating too much phosphorus (including milk, cheese, sugary cereals, sodas) and potassium (bananas, many fruits). I suggest you look up foods high in phosphorus and potassium and then lower the intake of those so you do not degrade your kidney function faster.
BTW: A kidney transplant is NOT a cure. It is a treatment, just as dialysis is.
I got my deceased kidney in Atlanta, GA, Jan 2022 - 7 years after being placed on the transplant list! Be your own best ADVOCATE. When you get assigned to a transplant hospital, see if they have a virtual support group. They all have Social Workers to talk to as well. I still attend virtual support groups and events aimed at educating chronic kidney patients, transplant patients and patients on dialysis (three kinds: PD, in-Center hemodialysis and home hemodialysis).
I read everything I could get my hands on and prepared questions for doctors and visited this site for information as well.
BTW: what is your eGFR (it is one of the items listed on a blood test and is an indicator of how much kidney function you currently have).
The tests to prepare for and be accepted to the Transplant Wait List will take a couple months.
Hi Spaghetto, I am so glad you found this group. Please know that you are not alone. My daughter’s kidneys failed from a reaction to a vaccine and we too did not realize what was going on until too late. Everything will work out. Transplant clinic and dialysis center were great resources for us. I only found Healthunblocked after my daughter’s transplant. You never know where help comes from. Please don’t hesitate to ask friends, family, church, or any groups you are active in. May God bless you and be with you.
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