New Transplant Blog Posts

Hello everyone,
We hope this finds everyone well today! We have started this discussion today to announce a new blog post. Every week, we will reply to this discussion to let you know when something new is published. Watch for new information often!

Have a productive and enjoyable week!
– Kristin

@cmael

I’m having a kidney transplant at Mayo Rochester April 6th with my daughter being the donor. I am so fortunate since my age prevents me from being on a waiting list. Although it’s probably the scariest challenge I’ve faced, I’m very grateful to have it done while I’m still feeling good and it’ll be done at an excellent place.My daughter is a very enthusiastic donor and looking forward to a few weeks of r&r..

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@cmael as we chronologically age we are still young at heart, so yes it is a shock to think we are now of an age we once thought of as old! I always am amused when I see a TV story and they refer to a person who may just be in their 60s as “elderly”. I am not ready to think of myself that way!

@cmael

I’m having a kidney transplant at Mayo Rochester April 6th with my daughter being the donor. I am so fortunate since my age prevents me from being on a waiting list. Although it’s probably the scariest challenge I’ve faced, I’m very grateful to have it done while I’m still feeling good and it’ll be done at an excellent place.My daughter is a very enthusiastic donor and looking forward to a few weeks of r&r..

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@cmael – What is the cut off age wise to receive a kidney transplant and who set that age? Is the only way you can get a transplant above the cut off age if you have a living donor, or a related donor?

Liked by jodeej

@cmael

I’m having a kidney transplant at Mayo Rochester April 6th with my daughter being the donor. I am so fortunate since my age prevents me from being on a waiting list. Although it’s probably the scariest challenge I’ve faced, I’m very grateful to have it done while I’m still feeling good and it’ll be done at an excellent place.My daughter is a very enthusiastic donor and looking forward to a few weeks of r&r..

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From what I understand, they don’t really set an age limit for a living donor transplant. They judge each case individually, depending on health and fitness. As far as getting on a list, I think the cut off is around 70. I was told but don’t remember exactly.

Liked by IWantToBelieve

@cmael

I’m having a kidney transplant at Mayo Rochester April 6th with my daughter being the donor. I am so fortunate since my age prevents me from being on a waiting list. Although it’s probably the scariest challenge I’ve faced, I’m very grateful to have it done while I’m still feeling good and it’ll be done at an excellent place.My daughter is a very enthusiastic donor and looking forward to a few weeks of r&r..

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@IWantToBelieve – We covered this topic on our blog back in July. Take a look as I think it will answer some of your questions. https://connect.mayoclinic.org/newsfeed-post/is-there-a-cut-off-age-for-kidney-transplant/

@cmael

I’m having a kidney transplant at Mayo Rochester April 6th with my daughter being the donor. I am so fortunate since my age prevents me from being on a waiting list. Although it’s probably the scariest challenge I’ve faced, I’m very grateful to have it done while I’m still feeling good and it’ll be done at an excellent place.My daughter is a very enthusiastic donor and looking forward to a few weeks of r&r..

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@cmael I've encountered this issue several times over the years. In 2003 my father-in-law needed a kidney transplant. He was listed but we ended up finding a living kidney donor. Both my daughters were tested. They both matched and were potential donors. They decided which one would move forward with donation and which one would wait and pursue donation for me. I have CKD. When they had their transplant my father-in-law was 76 and my daughter was 19.
Now I'm 61 with stage IV CKD. I am listed and also looking for a living kidney donor. I'm becoming more aware and concerned about age restrictions pertaining to donors and recipients. Over the past 2 years of looking for a living donor only a few people have stepped up with willingness to donate. These have been ruled out for a variety of reasons. One was an extended family member cousin who was turned away because she was over the cutoff age to donate. She was told the cutoff is 80 and she was 82 at the time. I know a mother daughter pair who were told the cutoff is 75. Someone else was told 70. Another was told 60. A potential recipient was delisted for being 58. And so on …..
I was disturbed and frustrated by the lack of consistency so I asked the team at my transplant center (Mayo Clinic in Rochester, MN). I was referred to the Transplant Toolkit which also had different answers plus varying providers' answers as well.
The bottom line is that there are national/federal guidelines but individual transplant centers may have different rules, regulations, protocols and criteria. At Mayo each case is dealt with individually. A whole host of factors are taken into consideration (age is only one of them) when evaluating donors and recipients for transplant. Patients are treated like unique people not numbers. This is something I appreciate and trust about Mayo.

Liked by IWantToBelieve

@cmael

I’m having a kidney transplant at Mayo Rochester April 6th with my daughter being the donor. I am so fortunate since my age prevents me from being on a waiting list. Although it’s probably the scariest challenge I’ve faced, I’m very grateful to have it done while I’m still feeling good and it’ll be done at an excellent place.My daughter is a very enthusiastic donor and looking forward to a few weeks of r&r..

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Every center has different guid lines, it is harder on the donor than the recipient ( surgery ) that is. Try to stay positive a watch what you eat and drink, i was on dialysis for 13 yrs. before I was called…..if your not on dialysis yet, count your blessings.

Liked by IWantToBelieve

@cmael

I’m having a kidney transplant at Mayo Rochester April 6th with my daughter being the donor. I am so fortunate since my age prevents me from being on a waiting list. Although it’s probably the scariest challenge I’ve faced, I’m very grateful to have it done while I’m still feeling good and it’ll be done at an excellent place.My daughter is a very enthusiastic donor and looking forward to a few weeks of r&r..

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I was told by my nephrologist the cutoff date to be on a transplant list, which I think was 70. Not sure, but I didn’t ask at Mayo since I had two daughters willing to donate. The daughter that is not donating has a diabetic son that may need her kidney at some point. Sending good thoughts for you to find a donor soon.

@cmael

I’m having a kidney transplant at Mayo Rochester April 6th with my daughter being the donor. I am so fortunate since my age prevents me from being on a waiting list. Although it’s probably the scariest challenge I’ve faced, I’m very grateful to have it done while I’m still feeling good and it’ll be done at an excellent place.My daughter is a very enthusiastic donor and looking forward to a few weeks of r&r..

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@cmael as a prospective liver donor the surgeon at Mayo Rochester told me that I was at the upper end of the age limit for donating. He said that he preferred the donor be under 55, (I was 54 during my work-up) but that the Phoenix clinic allowed up to the age of 60 so Rochester followed that recommendation. Due to anatomy issues I wasn't able to donate, sadly.

@cmael

I’m having a kidney transplant at Mayo Rochester April 6th with my daughter being the donor. I am so fortunate since my age prevents me from being on a waiting list. Although it’s probably the scariest challenge I’ve faced, I’m very grateful to have it done while I’m still feeling good and it’ll be done at an excellent place.My daughter is a very enthusiastic donor and looking forward to a few weeks of r&r..

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@jodeej Thank you so much for trying! The fact that you went through the work up shows a lot of dedication, thoughtfulness, caring, kindness and the list could go on. Please spread the word that living donors are possible and needed.

Happy National Donate Life Month! Today's blog post commemorates this important observance for our transplant community. Help us rally around the cause and get the word out about the incredibly easy and critically important step of becoming an organ donor. https://connect.mayoclinic.org/newsfeed-post/celebrate-donate-life-month/

@kequick

Happy National Donate Life Month! Today's blog post commemorates this important observance for our transplant community. Help us rally around the cause and get the word out about the incredibly easy and critically important step of becoming an organ donor. https://connect.mayoclinic.org/newsfeed-post/celebrate-donate-life-month/

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Happy Donate Life Month !! Also my Happy Transplant Anniversary Month !! But this is not really about me – It is all of us.

Have you seen one of the ways that Mayo Connect Champions is Promoting Organ Donation during this April?
Take a look at: Happy Donate Life Month !! Trending Newsfeed Posts
https://connect.mayoclinic.org/newsfeed-post/april-monthlymission-reaching-200-organ-donors/

Enjoy your day. Enjoy your life.
Rosemary

@cmael

I’m having a kidney transplant at Mayo Rochester April 6th with my daughter being the donor. I am so fortunate since my age prevents me from being on a waiting list. Although it’s probably the scariest challenge I’ve faced, I’m very grateful to have it done while I’m still feeling good and it’ll be done at an excellent place.My daughter is a very enthusiastic donor and looking forward to a few weeks of r&r..

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@cmael, I am thinking about you and your precious daughter. I hope that you are both comfortable in your recoveries.
Gentle hugs,
Rosemary

Happy Tuesday!
We know that April showers bring May flowers, but what does April snow bring? We'd like to know, since we are about to get a half foot more in the Rochester area tonight. 🙂
If you love the Minnesota snow, the Florida beach or the Arizona warmth, you will love today's blog post about patients who travel to a transplant center that's out of their home state. Thousands of people travel to Mayo Clinic from all 50 states and countries around the world, and they ask great questions about how to manage their care far from home. We hope this blog post will answer some of those questions you might have. Traveling for transplant is more common than you might think, and we do everything we can to make your time at Mayo Clinic comfortable, efficient and worth every minute you spend with us. No matter where you are from, this post can help you better understand the questions you will face when choosing a transplant center far from home. Did you have transplant care away from your home state? Comment below with your ideas to help others who might need to travel.
Have a great week!
https://connect.mayoclinic.org/newsfeed-post/qa-for-out-of-state-patients/

@keggebraaten My transplant care is a 10-12 hour drive from our home. Our fastest and most direct route takes us across 2 states and from the middle of one state to the bottom latitude of the state below us. Weather is a huge issue for us, as my care is at Rochester, MN. In our states April snow brings calf-killer storms with heavy, wet snow in large quantities that sticks to the hides of cattle and sometimes weights to much that the animal cannot stand or move. During any storm cattle move away from the direction of the wind and go until they are stopped by an obstruction. Because it is April we have had enough warm weather to melt or at least weaken the ice on any spans of water. Because of these two issues, cattle without an obstruction can easily walk into water, which makes their water weight load even greater and can end up drowning cattle in water that otherwise they could walk or swim through. Needless to say, I do not care for April snow!

We were on the edge of blizzard conditions when I received my call that an organ was available for me. We knew we would probably not be able to make the trip if we tried to drive and, anticipating this, we had people to contact to charter fly us to Rochester, MN — changing a 10 hour drive to about a 2 1/2 hour flight. Since I am a transplant patient, we are able to use the Gift of Life Transplant House for lodging most times we need to travel to Rochester, MN.
There have only been a few times that the houses were full and we had to stay in a motel. We particularly like staying in the houses because it is more like a home, with TV rooms, puzzles and craft rooms, laundry rooms, libraries, communal kitchens and dining rooms, private parking lots and one underground parking area, your own private sleeping room and bath, a transport van, and (most importantly now) rooms set aside for lab draws in each house. When you need daily labs, it is much better for a recovering transplant patient to be able to go from one room to another rather than go out in the weather and take a bumpy and uncomfortable ride to the Clinic Lab and back. The transport van stops at several buildings, so you do not have to get off at a site that may require you to go a long distance to your appointments.

I encourage patients to use the available free wheelchairs to move around the Clinic campus. The campus is large, as you can tell by looking at a map. There are many buildings connected by a "subway" that is actually just an underground walkway that also connects to places near the Clinic campus. It can be quite a distance from one appointment or test to the next and I was debilitated and unable to manage a whole day if I had to walk. Additionally, I walked so slow that we would not have been able to get to appointments on time. Be prepared for long days in the beginning, right when you are at your worst physically and the most information needs to be gathered and evaluated. There are easily available information desks, restrooms and cafes and coffee shops throughout the campus which we found quite helpful since most days started with fasting labs. There are also several labs in different buildings, and several pharmacy outlets so that you can coordinate picking up any meds you need that day near your route off the campus.

Be prepared that you will received a great deal of information verbally and in print from a variety of sources. I have always carried a briefcase, backpack or large bag to carry everything and have something to distract myself while waiting for appointments or tests. This worked well for us because we could hang the bag on the wheelchair handles. If you are well enough to walk, I see many people using a rolling case rather than a bag.

I also encourage you to carry a large bottle of water and possibly some snacks, as the days can get long and you may not be able to go to get something when you are waiting for an appointment.

Pack less that what you think you will need. I always pack too much. Plan to dress in layers, as the buildings can get chilly. I like to wear a simple shift dress and a lightweight large scarf (mine is rayon) or comfortable jeans, a t-shirt and a sweatshirt. What I did not anticipate was that following surgery I would not be able to wear my jeans. We had to go shopping for large stretchy sweatpants and a sweatshirt because I was initially not prepared for the chilly buildings. No matter where you stay, you should be able to find laundry facilities, so now I pack two dress options and two jean (or sweatpants) options and four days worth of undergarments. Then we wash if we are there more than 4 days.

I always sort 3 weeks worth of medications into daily planners and take all my medication bottles in a plastic file box. It helps me remember to reorder in time and adapt to any possible changes in doses of existing medications.

Good luck on your journey to better health.

@2011panc

@keggebraaten My transplant care is a 10-12 hour drive from our home. Our fastest and most direct route takes us across 2 states and from the middle of one state to the bottom latitude of the state below us. Weather is a huge issue for us, as my care is at Rochester, MN. In our states April snow brings calf-killer storms with heavy, wet snow in large quantities that sticks to the hides of cattle and sometimes weights to much that the animal cannot stand or move. During any storm cattle move away from the direction of the wind and go until they are stopped by an obstruction. Because it is April we have had enough warm weather to melt or at least weaken the ice on any spans of water. Because of these two issues, cattle without an obstruction can easily walk into water, which makes their water weight load even greater and can end up drowning cattle in water that otherwise they could walk or swim through. Needless to say, I do not care for April snow!

We were on the edge of blizzard conditions when I received my call that an organ was available for me. We knew we would probably not be able to make the trip if we tried to drive and, anticipating this, we had people to contact to charter fly us to Rochester, MN — changing a 10 hour drive to about a 2 1/2 hour flight. Since I am a transplant patient, we are able to use the Gift of Life Transplant House for lodging most times we need to travel to Rochester, MN.
There have only been a few times that the houses were full and we had to stay in a motel. We particularly like staying in the houses because it is more like a home, with TV rooms, puzzles and craft rooms, laundry rooms, libraries, communal kitchens and dining rooms, private parking lots and one underground parking area, your own private sleeping room and bath, a transport van, and (most importantly now) rooms set aside for lab draws in each house. When you need daily labs, it is much better for a recovering transplant patient to be able to go from one room to another rather than go out in the weather and take a bumpy and uncomfortable ride to the Clinic Lab and back. The transport van stops at several buildings, so you do not have to get off at a site that may require you to go a long distance to your appointments.

I encourage patients to use the available free wheelchairs to move around the Clinic campus. The campus is large, as you can tell by looking at a map. There are many buildings connected by a "subway" that is actually just an underground walkway that also connects to places near the Clinic campus. It can be quite a distance from one appointment or test to the next and I was debilitated and unable to manage a whole day if I had to walk. Additionally, I walked so slow that we would not have been able to get to appointments on time. Be prepared for long days in the beginning, right when you are at your worst physically and the most information needs to be gathered and evaluated. There are easily available information desks, restrooms and cafes and coffee shops throughout the campus which we found quite helpful since most days started with fasting labs. There are also several labs in different buildings, and several pharmacy outlets so that you can coordinate picking up any meds you need that day near your route off the campus.

Be prepared that you will received a great deal of information verbally and in print from a variety of sources. I have always carried a briefcase, backpack or large bag to carry everything and have something to distract myself while waiting for appointments or tests. This worked well for us because we could hang the bag on the wheelchair handles. If you are well enough to walk, I see many people using a rolling case rather than a bag.

I also encourage you to carry a large bottle of water and possibly some snacks, as the days can get long and you may not be able to go to get something when you are waiting for an appointment.

Pack less that what you think you will need. I always pack too much. Plan to dress in layers, as the buildings can get chilly. I like to wear a simple shift dress and a lightweight large scarf (mine is rayon) or comfortable jeans, a t-shirt and a sweatshirt. What I did not anticipate was that following surgery I would not be able to wear my jeans. We had to go shopping for large stretchy sweatpants and a sweatshirt because I was initially not prepared for the chilly buildings. No matter where you stay, you should be able to find laundry facilities, so now I pack two dress options and two jean (or sweatpants) options and four days worth of undergarments. Then we wash if we are there more than 4 days.

I always sort 3 weeks worth of medications into daily planners and take all my medication bottles in a plastic file box. It helps me remember to reorder in time and adapt to any possible changes in doses of existing medications.

Good luck on your journey to better health.

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@2011panc How do you go about chartering a plane, especially last minute? Is it a small private plane that seats just a few people? Can you give me a ball park price of what it cost you from your destination?

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