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.

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!!!

REPLY
@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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Congratulations! I am so excited for you, it's an amazing experience.
I've heard the expression, there are no dumb questions but I sure had some silly ones (non medical) to occupy my brain the week before I left for surgery. If you have any questions, I'll be more than happy to help.

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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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@onecentwalsh, Thank you for sharing your news!

May God bless you, your medical team, and your future recipient.
Rosemary

REPLY
@mauraacro

I’m sure I’ve forgotten some of the things but I’ll try to go in order of how it went for me and maybe it will jog my memory as I go.
In October, I signed up on the breeze Mayo site to test as a donor for a named recipient. I was contacted by someone within a few days and she asked various questions about my health and health history. She said if I got things like my colonoscopy, mammogram and pap out of the way, things would go faster, so I had those done. I received a blood lab kit in the mail, my doctor did the draw and I shipped it to Mayo.
I didn’t match on all of the things that can match but she had no antibodies that would reject my kidney so I passed that part. I think I was shipped 2 more blood draw labs and a 24 hour urine collection kit that I did here and shipped back.
The scheduling nurse set up my appointments at Mayo, I still can’t believe how organized and well run it is. I got there at 6AM on December 12th for blood and urine testing and needed to go back for 3 more of those throughout the 1st day. I met with the nephrologist, received an 18 hour blood pressure cuff, had a renal function test, met the surgeon, the donor advocate, financial services and the donor coordinator,
The second day I had a CT scan, got the results of the BP cuff, met with the social worker and a nutritionist, had an electrocardiogram and a stress test, more blood draws, a chest xray and finally back to the doctor for the results. I was asleep in his office in the 4 minutes it took him to come in to see me. We went over my results and he said he would recommend me to the donor board as a candidate.
After I got home, I received calls from the advocate and the social worker. They were checking and and seeing how I was doing and if I was still interested after I had some down time. A few days later I got the call that I was accepted and we talked about a good date for my schedule. The recipient’s side does the surgery scheduling and they called me that day with confirmation.
I’ve since had 1 more blood draw that I shipped to Mayo but I think that’s all I have left to do here besides pack and fill out paperwork. So far, for my pre-op in Rochester, I have 2 more blood and urine tests scheduled as well as appointments with the doctor, surgeon and advocate.
If I could do anything different, I would eat more (or better) when I wasn’t fasting and get to bed earlier because it was hard to sleep with anticipation for the tests. I had a paper schedule and made notes on it that said things like, “fast after 7, 1 cup of water between 12-5. Eat between 9-945. 2 hour fast for test at 11:45” that was invaluable because there were a lot of eat/don’t eat on my instructions. I got to some appointments as much as an hour early and sometimes they were able to take me and sometimes not. I think I would have felt more rested if I had, well, rested during those times instead of trying to beat the clock. I learned that the elevators in the Charlton building are super slow but the volunteer on the lower level is a font of Rochester information.
This was probably way more than you meant for me to reply with but it was nice to get it out!

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@onecentwaish How wonderful! Being a non directed donor is so needed and so appreciated by those on the wait list (100,000 assuming you are donating a kidney). Thank you for your selflessness! Can I ask what lead you to making such a generous offer?

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@hkvanhouten

I donated to my sister in August 2015. I had some blood/urine tests and office visit the day prior to surgery. I picked up a Rx for a laxative to clear my GI tract the night prior. I thought it would keep me up all night but it didn’t. The next morning my sister and I both reported around same time and our pre-op rooms were across the hall from each other. I gowned up and they took vitals then took me down to holding area for surgery where I talked to members of anesthesia and surgery team. My sister came down shortly after me and they put our beds next to each other so we could talk. Then it was off to the OR, back to recovery and eventually my room. I do remember seeing my sister in recovery. The nurses were very good about keep us in close proximity to each other. You will have a urine catheter in for approx 24 hours so they can closely monitor your urine output. I was on IV pain meds for about a day. I switched to orals for about 4 days then just plain Tylenol. I think I was discharged on day 3 or 4 and no further follow-up for a couple months then six months and one year. The social worker and transplant coordinator both checked in on me the first couple weeks. It will be hard to get in/out of bed. Use the “roll” technique they teach you in the hospital. I slept in the recliner a few nights though I was at the mercy of someone to put the footrest down if I needed to get up. Pulling open doors was also painful. I used the pillow they will give you while riding in the car. Pack some comfy loose fitting pants for post-op as don’t want anything tight fitting over incision until it heals. Best of luck on the 12th…you are doing a great thing!

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@hkvanhouten Thank you for donating! Not only did you give your sister life you kept the waiting list from not growing for those that are not fortunate enough to have a living donor.

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@mauraacro

I will follow up after I’ve processed a bit, this has gone so quickly. I said I’d post from the hospital, I can’t do that because I’ve already been released! My surgery was at 8 yesterday morning (Friday) and I was cleared to leave around noon today (Saturday). I had the option to stay tonight but my labs and “output” were good and there was no medical reason I needed to stay. The recipient is also doing well, she will be out Monday.
I’m going to eat & go back to bed, I’ll fill in more details later

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@mauraacro Congratulations for a successful donation and saving someone's life!!! All the best for a smooth recovery.

REPLY
@rosemarya

@mauraacro, Amazing!
Your priority is to take care of yourself.

Gentle hug and prayers for you and your recipient, while you both recover.
Rosemary

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@mauraacro Thank you for sharing! I will definitely be referring potential donors for me to this informative conversation so your selfless deed will continue to help.

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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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@onecentwaish This is so wonderful! I love how the chains impact so many more people. It's great that it can work "around" your work schedule. Again, how did you learn about living donors and what lead you to making such a sacrifice?

I'm in end stage renal disease (I have Polycystic Kidney Disease) and am not quite on the waitlist (probably some time this calendar year) but I do know the challenge of eating low salt. I thought I did it for years but when I joined a study at Mayo I learned there was so much more I could do. The simple things are not salt on your food after it is cooked (my exception is corn on the cob during the season) and I always half the amount of salt a recipe calls for (you don't really notice the difference). Garlic is a great seasoner in place of salt if that pleases your taste buds. Fresh food vs. processed is ideal but If you buy canned food try to find low salt options which are becoming more prevalent. Also, you can drain canned food (i.e. beans, corn) and rinse it to help reduce the salt. Honestly, the hardest time to control salt intake is eating out. I've concluded one reason that restaurant food (fast food or a fancy place) tastes so good is because they use A LOT of salt!

Best of luck! People like you give me hope. THANK YOU!

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@mauraacro

I’m sure I’ve forgotten some of the things but I’ll try to go in order of how it went for me and maybe it will jog my memory as I go.
In October, I signed up on the breeze Mayo site to test as a donor for a named recipient. I was contacted by someone within a few days and she asked various questions about my health and health history. She said if I got things like my colonoscopy, mammogram and pap out of the way, things would go faster, so I had those done. I received a blood lab kit in the mail, my doctor did the draw and I shipped it to Mayo.
I didn’t match on all of the things that can match but she had no antibodies that would reject my kidney so I passed that part. I think I was shipped 2 more blood draw labs and a 24 hour urine collection kit that I did here and shipped back.
The scheduling nurse set up my appointments at Mayo, I still can’t believe how organized and well run it is. I got there at 6AM on December 12th for blood and urine testing and needed to go back for 3 more of those throughout the 1st day. I met with the nephrologist, received an 18 hour blood pressure cuff, had a renal function test, met the surgeon, the donor advocate, financial services and the donor coordinator,
The second day I had a CT scan, got the results of the BP cuff, met with the social worker and a nutritionist, had an electrocardiogram and a stress test, more blood draws, a chest xray and finally back to the doctor for the results. I was asleep in his office in the 4 minutes it took him to come in to see me. We went over my results and he said he would recommend me to the donor board as a candidate.
After I got home, I received calls from the advocate and the social worker. They were checking and and seeing how I was doing and if I was still interested after I had some down time. A few days later I got the call that I was accepted and we talked about a good date for my schedule. The recipient’s side does the surgery scheduling and they called me that day with confirmation.
I’ve since had 1 more blood draw that I shipped to Mayo but I think that’s all I have left to do here besides pack and fill out paperwork. So far, for my pre-op in Rochester, I have 2 more blood and urine tests scheduled as well as appointments with the doctor, surgeon and advocate.
If I could do anything different, I would eat more (or better) when I wasn’t fasting and get to bed earlier because it was hard to sleep with anticipation for the tests. I had a paper schedule and made notes on it that said things like, “fast after 7, 1 cup of water between 12-5. Eat between 9-945. 2 hour fast for test at 11:45” that was invaluable because there were a lot of eat/don’t eat on my instructions. I got to some appointments as much as an hour early and sometimes they were able to take me and sometimes not. I think I would have felt more rested if I had, well, rested during those times instead of trying to beat the clock. I learned that the elevators in the Charlton building are super slow but the volunteer on the lower level is a font of Rochester information.
This was probably way more than you meant for me to reply with but it was nice to get it out!

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@IWantToBelieve, I think you were directing several of your recent posts in this discussion to @onecentwalsh.

REPLY
@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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Thanks so much. I will ask when and if I think of anything!

REPLY
@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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Thanks for all the info. I began my donation story trying to be a donor for an acquaintance. Her daughter ended up being a match and they have surgery scheduled for may 16th!!!
So, I figured that I had gotten that far, and I felt very called to be donating, so I continued with the process as a non directed donor.

As for eating, I've been a member of weight watchers for fives years, having lost 65 lbs the first two and have maintained my goal weight for three. I eat very well, mostly whole foods, lots of veggies and fruit abd protein. I just have to season with salt less. I use lots of other things too.
Anyways, blessings to you and your health journey. Praying for you.

REPLY
@mauraacro

I’m sure I’ve forgotten some of the things but I’ll try to go in order of how it went for me and maybe it will jog my memory as I go.
In October, I signed up on the breeze Mayo site to test as a donor for a named recipient. I was contacted by someone within a few days and she asked various questions about my health and health history. She said if I got things like my colonoscopy, mammogram and pap out of the way, things would go faster, so I had those done. I received a blood lab kit in the mail, my doctor did the draw and I shipped it to Mayo.
I didn’t match on all of the things that can match but she had no antibodies that would reject my kidney so I passed that part. I think I was shipped 2 more blood draw labs and a 24 hour urine collection kit that I did here and shipped back.
The scheduling nurse set up my appointments at Mayo, I still can’t believe how organized and well run it is. I got there at 6AM on December 12th for blood and urine testing and needed to go back for 3 more of those throughout the 1st day. I met with the nephrologist, received an 18 hour blood pressure cuff, had a renal function test, met the surgeon, the donor advocate, financial services and the donor coordinator,
The second day I had a CT scan, got the results of the BP cuff, met with the social worker and a nutritionist, had an electrocardiogram and a stress test, more blood draws, a chest xray and finally back to the doctor for the results. I was asleep in his office in the 4 minutes it took him to come in to see me. We went over my results and he said he would recommend me to the donor board as a candidate.
After I got home, I received calls from the advocate and the social worker. They were checking and and seeing how I was doing and if I was still interested after I had some down time. A few days later I got the call that I was accepted and we talked about a good date for my schedule. The recipient’s side does the surgery scheduling and they called me that day with confirmation.
I’ve since had 1 more blood draw that I shipped to Mayo but I think that’s all I have left to do here besides pack and fill out paperwork. So far, for my pre-op in Rochester, I have 2 more blood and urine tests scheduled as well as appointments with the doctor, surgeon and advocate.
If I could do anything different, I would eat more (or better) when I wasn’t fasting and get to bed earlier because it was hard to sleep with anticipation for the tests. I had a paper schedule and made notes on it that said things like, “fast after 7, 1 cup of water between 12-5. Eat between 9-945. 2 hour fast for test at 11:45” that was invaluable because there were a lot of eat/don’t eat on my instructions. I got to some appointments as much as an hour early and sometimes they were able to take me and sometimes not. I think I would have felt more rested if I had, well, rested during those times instead of trying to beat the clock. I learned that the elevators in the Charlton building are super slow but the volunteer on the lower level is a font of Rochester information.
This was probably way more than you meant for me to reply with but it was nice to get it out!

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@rosemarya – yes and I did. I see it in the post above your comment so I'm confused with your comment.

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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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@onecentwalsh – Congratulations on the weight loss! I lost 46 pounds from June to Dec. 2017 in preparation for a kidney transplant. I maintained my goal for 2.5 months and just started to try to lose again as I want to lose another 30 to have a healthy BMI. Your good changes have allowed you to be a donor so that is an amazing bonus for you and another lucky individual. Many thanks to you for continuing on the donor journey even though your original recipient got an organ from someone else. It would have been so easy for you to be relieved and say you tried to do the right thing and not continue the donor process. Best of luck to your future health, and thank you for your prayers as I believe they work.

REPLY
@mauraacro

I’m sure I’ve forgotten some of the things but I’ll try to go in order of how it went for me and maybe it will jog my memory as I go.
In October, I signed up on the breeze Mayo site to test as a donor for a named recipient. I was contacted by someone within a few days and she asked various questions about my health and health history. She said if I got things like my colonoscopy, mammogram and pap out of the way, things would go faster, so I had those done. I received a blood lab kit in the mail, my doctor did the draw and I shipped it to Mayo.
I didn’t match on all of the things that can match but she had no antibodies that would reject my kidney so I passed that part. I think I was shipped 2 more blood draw labs and a 24 hour urine collection kit that I did here and shipped back.
The scheduling nurse set up my appointments at Mayo, I still can’t believe how organized and well run it is. I got there at 6AM on December 12th for blood and urine testing and needed to go back for 3 more of those throughout the 1st day. I met with the nephrologist, received an 18 hour blood pressure cuff, had a renal function test, met the surgeon, the donor advocate, financial services and the donor coordinator,
The second day I had a CT scan, got the results of the BP cuff, met with the social worker and a nutritionist, had an electrocardiogram and a stress test, more blood draws, a chest xray and finally back to the doctor for the results. I was asleep in his office in the 4 minutes it took him to come in to see me. We went over my results and he said he would recommend me to the donor board as a candidate.
After I got home, I received calls from the advocate and the social worker. They were checking and and seeing how I was doing and if I was still interested after I had some down time. A few days later I got the call that I was accepted and we talked about a good date for my schedule. The recipient’s side does the surgery scheduling and they called me that day with confirmation.
I’ve since had 1 more blood draw that I shipped to Mayo but I think that’s all I have left to do here besides pack and fill out paperwork. So far, for my pre-op in Rochester, I have 2 more blood and urine tests scheduled as well as appointments with the doctor, surgeon and advocate.
If I could do anything different, I would eat more (or better) when I wasn’t fasting and get to bed earlier because it was hard to sleep with anticipation for the tests. I had a paper schedule and made notes on it that said things like, “fast after 7, 1 cup of water between 12-5. Eat between 9-945. 2 hour fast for test at 11:45” that was invaluable because there were a lot of eat/don’t eat on my instructions. I got to some appointments as much as an hour early and sometimes they were able to take me and sometimes not. I think I would have felt more rested if I had, well, rested during those times instead of trying to beat the clock. I learned that the elevators in the Charlton building are super slow but the volunteer on the lower level is a font of Rochester information.
This was probably way more than you meant for me to reply with but it was nice to get it out!

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@IWantToBelieve, Great question. Let me clear the confusion.
I noticed that the @name was not highlighted in blue – so then I saw an "i" instead of an "l" in the spelling. That is easy to do when keying in a name. So I copied and pasted the @name, thus assuring that it was directed to the correct email. This happens fairly regularly. It is just something I do as a mentor.
Rosemary

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@mauraacro

I’m sure I’ve forgotten some of the things but I’ll try to go in order of how it went for me and maybe it will jog my memory as I go.
In October, I signed up on the breeze Mayo site to test as a donor for a named recipient. I was contacted by someone within a few days and she asked various questions about my health and health history. She said if I got things like my colonoscopy, mammogram and pap out of the way, things would go faster, so I had those done. I received a blood lab kit in the mail, my doctor did the draw and I shipped it to Mayo.
I didn’t match on all of the things that can match but she had no antibodies that would reject my kidney so I passed that part. I think I was shipped 2 more blood draw labs and a 24 hour urine collection kit that I did here and shipped back.
The scheduling nurse set up my appointments at Mayo, I still can’t believe how organized and well run it is. I got there at 6AM on December 12th for blood and urine testing and needed to go back for 3 more of those throughout the 1st day. I met with the nephrologist, received an 18 hour blood pressure cuff, had a renal function test, met the surgeon, the donor advocate, financial services and the donor coordinator,
The second day I had a CT scan, got the results of the BP cuff, met with the social worker and a nutritionist, had an electrocardiogram and a stress test, more blood draws, a chest xray and finally back to the doctor for the results. I was asleep in his office in the 4 minutes it took him to come in to see me. We went over my results and he said he would recommend me to the donor board as a candidate.
After I got home, I received calls from the advocate and the social worker. They were checking and and seeing how I was doing and if I was still interested after I had some down time. A few days later I got the call that I was accepted and we talked about a good date for my schedule. The recipient’s side does the surgery scheduling and they called me that day with confirmation.
I’ve since had 1 more blood draw that I shipped to Mayo but I think that’s all I have left to do here besides pack and fill out paperwork. So far, for my pre-op in Rochester, I have 2 more blood and urine tests scheduled as well as appointments with the doctor, surgeon and advocate.
If I could do anything different, I would eat more (or better) when I wasn’t fasting and get to bed earlier because it was hard to sleep with anticipation for the tests. I had a paper schedule and made notes on it that said things like, “fast after 7, 1 cup of water between 12-5. Eat between 9-945. 2 hour fast for test at 11:45” that was invaluable because there were a lot of eat/don’t eat on my instructions. I got to some appointments as much as an hour early and sometimes they were able to take me and sometimes not. I think I would have felt more rested if I had, well, rested during those times instead of trying to beat the clock. I learned that the elevators in the Charlton building are super slow but the volunteer on the lower level is a font of Rochester information.
This was probably way more than you meant for me to reply with but it was nice to get it out!

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@rosemarya – Well that makes sense because I thought onecentwaish sounded odd. It still looks like an i to me so maybe I need an eye exam! Thanks for making the correction for me.

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