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.

@onecentwalsh

Officially accepted as a non directed donor this past Wednesday!!! Everything looks good for me health wise. I will be donating in may, as I'm a teacher and will be finishing out my spring as to not take too much time off of work for recovery.
They will be now doing their job to find a match and create a, hopefully, long string of paired donations starting with mine! I'm excited and really can't wait to see what God has in store for this process. Will post again as I get closer to surgery.
In the meantime, I'm working on a few diet changes- less salt intake especially!!!

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@onecentwalsh People like you inspire people like me. Thank you for sharing.

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@onecentwalsh

Officially accepted as a non directed donor this past Wednesday!!! Everything looks good for me health wise. I will be donating in may, as I'm a teacher and will be finishing out my spring as to not take too much time off of work for recovery.
They will be now doing their job to find a match and create a, hopefully, long string of paired donations starting with mine! I'm excited and really can't wait to see what God has in store for this process. Will post again as I get closer to surgery.
In the meantime, I'm working on a few diet changes- less salt intake especially!!!

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@beckyjohnson This is a completely open offer. I had all of the information I needed to prepare from Mayo but it was reassuring to talk to someone that had gone through it.
I am a donor and, as far as I can tell, completely healed. I have some testing & appointments in a couple of weeks and will find out if that's true.

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@beckyjohnson

I've just read all the posts from "transplants – changes after transplant" & replied to some of them. One thought usually leads to another so I decided to post emotions because it isn't as concrete – say as the literal kidneys being transplanted.
Emotion 1: just getting accepted as a donor creates the feeling of uncertainty
Emotion 2: try as I might to remain steadfast I find myself concerned with finances even though I know the burden of surgical cost does not rest on my shoulders
Emotion 3: LOL knowing part of my body going in to someone else's body brings new meaning to "You're rubbing off on me"
Emotion 4: there is a tad bit of fear that my body may miss its organ & retaliate
Emotion 5: now I'm questioning my logic due to emotion 4
Emotion 6: calm emotion 5 because I fully believe in following my heart
Emotion 7: questions questions questions (what, why, how, who, where, when)
Emotion 8: hybrid fusion of logic & emotion
Emotion 9: LMBO even though I should have thought of all this before making my mind up I couldn't because I had to make this decision to ellicit these emotions

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Emotion 15: Joy. After objectively rereading "The Journey from the Donors Side" I recognized an uplifting pattern – that is every donor experienced the emotion of genuine joy at some point along the journey. That is a blessing in and of its own

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@onecentwalsh

Officially accepted as a non directed donor this past Wednesday!!! Everything looks good for me health wise. I will be donating in may, as I'm a teacher and will be finishing out my spring as to not take too much time off of work for recovery.
They will be now doing their job to find a match and create a, hopefully, long string of paired donations starting with mine! I'm excited and really can't wait to see what God has in store for this process. Will post again as I get closer to surgery.
In the meantime, I'm working on a few diet changes- less salt intake especially!!!

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@mauraacro Thank you very much. If your not heaven sent your as close to it as it gets.

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@beckyjohnson

I've just read all the posts from "transplants – changes after transplant" & replied to some of them. One thought usually leads to another so I decided to post emotions because it isn't as concrete – say as the literal kidneys being transplanted.
Emotion 1: just getting accepted as a donor creates the feeling of uncertainty
Emotion 2: try as I might to remain steadfast I find myself concerned with finances even though I know the burden of surgical cost does not rest on my shoulders
Emotion 3: LOL knowing part of my body going in to someone else's body brings new meaning to "You're rubbing off on me"
Emotion 4: there is a tad bit of fear that my body may miss its organ & retaliate
Emotion 5: now I'm questioning my logic due to emotion 4
Emotion 6: calm emotion 5 because I fully believe in following my heart
Emotion 7: questions questions questions (what, why, how, who, where, when)
Emotion 8: hybrid fusion of logic & emotion
Emotion 9: LMBO even though I should have thought of all this before making my mind up I couldn't because I had to make this decision to ellicit these emotions

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Emotion 16: Sincerity – from the depths of my soul I have believe that every single person posting on Mayo Connect have faith in something far greater than any one of us. Because of this we are able to connect with honesty & bond with purity

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FYI in general. I have taken to "Like" every post for these reasons:
1. It shows everyone I appreciate their courage for posting &
2. It allows me to notice posts I've missed as I'm following our discussion
When something relates to my personal journey or fancies my curiosity or gets my attention on any level then I reply in earnest

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@beckyjohnson

I've just read all the posts from "transplants – changes after transplant" & replied to some of them. One thought usually leads to another so I decided to post emotions because it isn't as concrete – say as the literal kidneys being transplanted.
Emotion 1: just getting accepted as a donor creates the feeling of uncertainty
Emotion 2: try as I might to remain steadfast I find myself concerned with finances even though I know the burden of surgical cost does not rest on my shoulders
Emotion 3: LOL knowing part of my body going in to someone else's body brings new meaning to "You're rubbing off on me"
Emotion 4: there is a tad bit of fear that my body may miss its organ & retaliate
Emotion 5: now I'm questioning my logic due to emotion 4
Emotion 6: calm emotion 5 because I fully believe in following my heart
Emotion 7: questions questions questions (what, why, how, who, where, when)
Emotion 8: hybrid fusion of logic & emotion
Emotion 9: LMBO even though I should have thought of all this before making my mind up I couldn't because I had to make this decision to ellicit these emotions

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Emotion 17: Excitement Yea I've been approved for the 1st level of donor tests

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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

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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Emotion 18: Motivation albeit emotion 17-joy should be in this post as well. Now that I'm on to testing I'm deep in research. Is there a way to group all these emotions? But then they would not be time appropriate… hmmm? Motivation is a positive emotion because it keeps me focused & informed.

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This is an unbelievable eye opener. Apparently Medicare cuts off funding for antirejection medicine 3 yrs. after the recipient recieves a donor kidney (not sure about other organs). Some problems I'm having wrapping my brain around this fact (at least for some patients) are what happens when they cannot afford the medicine, what becomes of the donated kidney, what emotions are derived from both donor (who believes this is a life changing gift meant to last a lifetime not a mere 36 months) & recipient (who must have an overwhelming feeling of hopelessness to say the least). I'm so heartbroken that I'm relying on pure faith to get an understanding that is acceptable

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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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@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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@beckyjohnson

This is an unbelievable eye opener. Apparently Medicare cuts off funding for antirejection medicine 3 yrs. after the recipient recieves a donor kidney (not sure about other organs). Some problems I'm having wrapping my brain around this fact (at least for some patients) are what happens when they cannot afford the medicine, what becomes of the donated kidney, what emotions are derived from both donor (who believes this is a life changing gift meant to last a lifetime not a mere 36 months) & recipient (who must have an overwhelming feeling of hopelessness to say the least). I'm so heartbroken that I'm relying on pure faith to get an understanding that is acceptable

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Yes that is Medicare's policy as of right now, it used to be one year twenty or so years ago, there are some medication assistance programs, I think there's links on the NKF website. It doesn't make good sense because it cost more for dialysis…but there's a lot of things that don't make since these days.

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The reason I'm a donor is because I truly care about each & everyone of you, your unique testimonies that shaped you & what brought you to this point & beyond today. Together with hundreds of thousands of voices we fight the "good fight" for access to life saving medication regardless of ones financial status. The following links are a result of our collective voice.
ADVOCATE to get immunosuppressive prescriptions for under insured & economically disadvantaged:
http://www.kidneyfund.org/advocacy/; https://www.ncbi.nlm.nih.gov/books/NBK225251/;
https://nkfadvocacy.wordpress.com/immunosuppressive-drug-coverage/
BLOGS
http://www.kidneyfund.org/kidney-today/protect-immunosuppressive-drug-coverage.html
PRESCRIPTION ASSISTANCE
https://www.americantransplantfoundation.org/receive/; https://www.kidney.org/patients/resources_Prescription; https://www.phrma.org/advocacy/access/patient-assistance; https://advocatemymeds.com;

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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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@donnan As a donor it doesn't make sense to set my kidney up for failure which is exactly what it is when the recipient is cut off & denied their medicine based on their financial status. I was very pleased in researching this grave matter I found hundreds of thousands of people advocating for life safe prescription assistance. I posted a variety of Advocacy/ assistance links in Journey From the Donors Side for anyone who is interested in advocating for the under insured, economically disadvantaged and/ or in need of immunosuppressant prescription help. I can handle the idea of failure due to medical cause but not because of deliberate financial failure as in withdrawing prescription assistance.

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