Kidney transplant - The Journey from the Donor's Side

Posted by mauraacro @mauraacro, Jan 2, 2018

I’m headed to Rochester on the 10th for surgery on the 12th. I’m excited and nervous! I didn’t know the recipient but have gotten to “meet” her and some of her daughters through phone calls and emails.
I’ve had labs done at my doctor’s office and went to Mayo a few weeks ago for a million more tests. My case was presented to the donor board a few days before Christmas and I was approved and notified the same day. It seems like everything took so long and now is going so fast.
I’m interested in hearing from donors but haven’t had a lot of luck. It seems like the recipients are the ones who post the most, which gives me some info and reassurance but it would be nice to hear from the other side too.

@rosemarya

@beckyjohnson, The transplant process is different and similar for each recipient whether they receive organs from a living or a deceased donor. All transplant recipients will take anti-rejection (immunosuppressant) drugs for the rest of their lives. You, as a donor, will not need these medications, nor will you need to make the life changes that are necessary for recipients. Also, you don't need to worry about the life changes that many recipients have shared in other discussions.
When anyone is evaluated for transplant donation as a recipient, or donor, there is are complete medical evaluations to determine if the patient is able to withstand the surgery and also to rule out any complicating medical issues. There is also a very thorough workup and conversation with the recipient about current and future medication and insurance issues.
This is, as I have said, a very complex journey. There are National standards that every transplant center must adhere to. If you are evaluated and are eligible to move forward, then you will be made aware of the things that will apply to you. Of course, take a list of all of these questions with you. We, here, are not the experts.
I want to add that this is an eye opener for you because you have not been around the world of kidney disease and dialysis. For those of us with the kidney issues, it is a fact that we already know. That is why we have insurance. That is why a social worker is on staff to provide resource information. When we receive a transplant – Gift of Life – we accept each day for the gift that it is, freely given without any expectation or guarantee.
Hugs and Hope,
Rosemary

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@rosemary Thank you for clarifying recipients need their antirejection medicine for as long as they live & that it is the same thing as immunosuppressant. If I did not care about people (Strangers included) I would not be subjecting myself to testing, surgery & the loss of my own organ. Albeit I'm not as scrutinized as the recipient but I'm also not the one in need. Therefore I feel it is important to pay attention to their stories.
Medicare is insurance that clearly falls short of providing for the needs of recipients after 3 short years of (presumed) improved quality of life. More people than not lack the financial ability to pay excessively high premiums for pre existing conditions or extremely high costs of immunosuppressant.
As a sociologist I researched this grave matter & found some (I hope) helpful links which I posted in Journey From the Donors Side. Giving an organ is not an easy come easy go gift. It is one person's loss is another person's gain regardless of rather it is a living or deceased donor.

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@donnan

Health insurance determines where I live. I spent almost 51 years with brittle type one diabetes thus insurance wasn't fun. Since my one year anniversary of my transplant I had to move across the country to now be seen at JAX Mayo. I'm 62. Will be checking in with the transplant insurance department at Mayo 6 months prior to my 65th birthday. They will guide me as to which insurance includes them. Next I check out the plans to figure out which is best for prescriptions. You need to stay 5 steps ahead and that's time consuming but well worth it. I have found the JAX Mayo transplant – department to be absolutely wonderful.

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@ca426 Well I'm part of the human race who live & breath for the betterment of life. It is a cruel thing to give hope for a quality life then take it back a few months later because one cannot afford a great insurance policy or high dollar prescriptions. There is so much wasteful spending that it boggles my mind this is perfectly acceptable to some people.
I'm well aware that we face resource depletion, overpopulation, mass polution and other world class issues but medical care should not be one of them. I'm by no means a push over but I am a philosophical humanitarian & as such I have an obligation to "Pay it Forward". Everyone who has ever recieved anything from anyone without expectations should also feel that sense of responsibility to pay it forward. But that's just me looking through my rose colored lenses again.

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@beckyjohnson

Im so excited due to the new donor kidney transplant coordinator & my conversation earlier today. She asked questions that needed more clarification from the initial application. I'm also required to have a current colonoscopy, pelvic exam/ pap smear and mammogram. She is sending a blood pressure cuff to be worn continuously for a designated period of time (24 hrs I think). She also working on scheduling 3 days of appointments to include a lot of bloodwork, stress test, echocardiogram & much more that I cannot recall. I will also be meeting her in person along with counselor, donor advocate, surgery team, financial consultant & dietician to name a few. We are aiming for the last week of this month. Yea! A final thought as an altruistic donor it is very possible I will not get to meet my kidney recipient. For me this is a downside that I had already decided to accept thanks to this Mayo Connect discussion.

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@beckyjohnson I just thought of a tip for your 24 hour blood pressure cuff.
I had to wear one for 18 hours. It was attached to my arm like a regular cuff and I was provided a small purse that held the monitor that I wore across my body. It wasn't much different than carrying a purse all day but I was worried that it would slip off in my sleep and I'd have to start over. I wore a long sleeved, long length t-shirt to bed and it held the cuff and the "purse" in place. It looked really dumb but I slept better knowing it would stay put.
I also had to do a 24 hour urine collection and luckily was able to do that at home. I'll have to figure out how to MacGyver something to carry around during my follow up appointments. Maybe a stylish cooler bag to carry through the streets of Rochester?

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@beckyjohnson

Im so excited due to the new donor kidney transplant coordinator & my conversation earlier today. She asked questions that needed more clarification from the initial application. I'm also required to have a current colonoscopy, pelvic exam/ pap smear and mammogram. She is sending a blood pressure cuff to be worn continuously for a designated period of time (24 hrs I think). She also working on scheduling 3 days of appointments to include a lot of bloodwork, stress test, echocardiogram & much more that I cannot recall. I will also be meeting her in person along with counselor, donor advocate, surgery team, financial consultant & dietician to name a few. We are aiming for the last week of this month. Yea! A final thought as an altruistic donor it is very possible I will not get to meet my kidney recipient. For me this is a downside that I had already decided to accept thanks to this Mayo Connect discussion.

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@mauraacro Since I sleep alone I doubt exterior beauty matters. Thank you for the tip. I've been accused of having the patients of a saint. If those same people saw me now? I have not recieved my cuff yet. How long does it take? Shouldn't it have been here by now? Oh wait…was it just 3 days ago my coordinator said she would work on it? It feels like a week. Now I get it. Waiting is sooo hard, even for me lol.

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@mrasmith15

Thank you all for the great information! I'm so glad I found this site & group! It's so nice to hear how everything is doing on the donor end. I am now officially a living kidney donor for my husband! I had my evaluation the first week of March and we found out last week. We haven't set a surgery date yet but we anticipate it will be this summer.

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@mrasmith15 How are you doing? Do you have a surgery date?

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@beckyjohnson

I decided to be a donor this week although I've considered it at least 2 yrs. & have done some research. Because I need to do this during the FL primary school year summer break I'm concerned with timely progress. I did the online health questionnaire as well as left a voicemail message yesterday morning stating my intention.
Is donating during this summer break a realistic goal?

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@beckyjohnson my first transplant experience was in 2003 at the U of MN. My father-in-law needed a kidney. My daughter ended up being his living kidney donor. At that time she was a 19 year old college student. She completed her pretransplant evaluation in March during her spring break and they had their transplant surgery in early April that year. (Both of them were at my house under my care and keeping during that journey.) My daughter missed a week or two of school after surgery but profs & friends were very accommodating for her to keep up from my house. She went back to school in April, finished the school year and began a grueling summer job. My point is, much of the journey involves “hurry up and wait” but things can move quickly once you go through the hoops. Did you clear the health questionnaire and have you been able to move on to donor evaluation scheduling? As you do that there will be more waiting involved before you find out the final answer. If you get the go ahead, it will be doable!

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@beckyjohnson

I decided to be a donor this week although I've considered it at least 2 yrs. & have done some research. Because I need to do this during the FL primary school year summer break I'm concerned with timely progress. I did the online health questionnaire as well as left a voicemail message yesterday morning stating my intention.
Is donating during this summer break a realistic goal?

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@cehunt57 Yes I did clear the donor questionair. My transplant coordinator is working on getting the 24 hour blood pressure cuff… which I think will be sent to me. She is also working on getting back to back 3 days of testing the last week in June. Your daughter is a very brave & loving lady to give up a kidney at such a young age. What a blessing she is – an earth angel for sure.

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@beckyjohnson

I decided to be a donor this week although I've considered it at least 2 yrs. & have done some research. Because I need to do this during the FL primary school year summer break I'm concerned with timely progress. I did the online health questionnaire as well as left a voicemail message yesterday morning stating my intention.
Is donating during this summer break a realistic goal?

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@beckyjohnson yes I agree, but I am biased. That was 15 years ago. Now I have CKD and will be needing a kidney. That girl already donated one to her grandpa but she contacted Mayo wondering if she could donate part of her liver to someone on my behalf in exchange for a kidney for me! She was trying to take the paired donation exchange principal to a whole new level and thinking outside of the box! It was a good and generous intention but is not how they roll at Mayo. There are reasons why Mayo deems this would not be a good option. So this daughter of mine is 34 now, has completed college & grad school. Has worked/is working at various careers, is married, is mom to 3 of my granddaughters and is currently attempting to launch an endeavor to be a surrogate mom for a couple that can’t have a child biologically! She is a testimony of what can be done by a living kidney donor.

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Has anyone heard of going from an altruistic donor to a directed donor? I've heard of directed donors becoming paired donors which is quite similar to non directed donors.

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@beckyjohnson

Has anyone heard of going from an altruistic donor to a directed donor? I've heard of directed donors becoming paired donors which is quite similar to non directed donors.

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I don't know how it all works for sure but the social worker should be able to guide you through it.
From my understanding of a having a directed donor & going to a paired donation is this. You want to donate to Mary, you are not a match with her but are eligable (healthy) to donate. Joe is eligable to donate but doesn't match his buddy Steve. Mary is still your "person" but your kidney actually goes to Steve & Joe's goes to Mary. As long as you follow through with your donation, Mary is guaranteed a kidney. If you opt out, you & Mary are both out of the pairing (even if Joe matches her perfectly)
At any point during the process you (donor) can back out. The reason will not be given to the recipient. I don't see why you couldn't decide to go the route of a directed donor &/or a paired donation.

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@mauraacro we have the same understanding. But I started out wanting to know who I donate to then learned from my coordinator that I'm considered an altruistic donor who likely will not know my kidney recipient. We may each sign a waiver to get in touch with the other but if one of us refuses then both of us will remain anonymous.
However my daughter personally knows a couple who have been married over 3 decades & he needs a kidney. This is how the question came about. The answer is apparently evasive since no-one knows of this type of change happening. But I'm going forward with the donation regardless of who gets my kidney.

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@beckyjohnson I don't see why you wouldn't be able to switch from an altruistic donor to a named one, especially this early in the game.
Transplants are new to us but not to Mayo so I bet they just take the info given to them and run with it. If you add in new information, I'm sure they can figure out how to make it happen.

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@beckyjohnson & @mauraacro I’m an organ recipient so maybe I shouldn’t weigh in here (deceased donor pancreas transplant). Now I’m waiting on a kidney transplant. I don’t know when and where it will come from. I’m listed, but am also looking for a living kidney donor. I am so grateful for my pancreas transplant. I had the opportunity to send a letter to the donor family to thank them, tell them about myself and extend an invitation for some follow up contact. This was done through a coordinator/social worker. I never got any response back. I’m just saying most recipients would like to meet &/or know something about the donor. It must be comfortable & agreeable for everyone involved. Mayo has so much experience with every kind of scenario I’m sure they will sort it out in the proper time and way for everyone’s best interest. What you are trying to do and have done is a tremendous thing. Thank you.

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@cehunt57

@beckyjohnson & @mauraacro I’m an organ recipient so maybe I shouldn’t weigh in here (deceased donor pancreas transplant). Now I’m waiting on a kidney transplant. I don’t know when and where it will come from. I’m listed, but am also looking for a living kidney donor. I am so grateful for my pancreas transplant. I had the opportunity to send a letter to the donor family to thank them, tell them about myself and extend an invitation for some follow up contact. This was done through a coordinator/social worker. I never got any response back. I’m just saying most recipients would like to meet &/or know something about the donor. It must be comfortable & agreeable for everyone involved. Mayo has so much experience with every kind of scenario I’m sure they will sort it out in the proper time and way for everyone’s best interest. What you are trying to do and have done is a tremendous thing. Thank you.

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@cehunt57. Of course you should weigh in here! If everyone knew what was going on for both sides think of how much easier life would be.
I'm sorry that the donor's family didn't get back to you but am so glad that the donor chose to use the end of their life as a life saving method for others.
Good luck to you

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@mrasmith15

Thank you all for the great information! I'm so glad I found this site & group! It's so nice to hear how everything is doing on the donor end. I am now officially a living kidney donor for my husband! I had my evaluation the first week of March and we found out last week. We haven't set a surgery date yet but we anticipate it will be this summer.

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@mauraacro Thank you for asking. My husband is having his surgery next week on the 21st, I am scheduled for the 25th. Although I was deemed a good match they found a better size match and I am now doing the paired donation. My husband's kidney is coming from Florida and I believe mine is going to Arizona. My husband is so ready to start feeling better!! We have been trying to get everything ready for our stay in Rochester, we have a duplex through Serenity House. We are nervous but excited for this journey. We have a great support system and have a bunch of family members coming down for the first week to help in any way.
Even though I don't post much, I have really appreciated reading about everyone & their experiences! I know I will continue to come to this discussion as we are going through this.

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