New Transplant Blog Posts

Posted by Kristin Eggebraaten @keggebraaten, Feb 21, 2017

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

Interested in more discussions like this? Go to the Transplants Support Group.

@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.

Jump to this post

@IWantToBelieve We had contacted people we knew had medical issues and found out about people willing to charter for emergency medical transport. Then we contacted the pilots we knew were willing, shared information and came to a verbal agreement. This was 7 years ago, so things may be different now. The man in charge in our town instructed us to call when we needed a pilot. He was not available the night we had to leave, but he called another pilot who brought his plane from 100 miles away, picked us up and then took us to Rochester, MN. In this network I believe each pilot owned his own plane so you could not be sure of the exact plane you would be on. Our was mostly a cargo plane with 2 seats in the cargo area. I cannot commend this man enough. He had come immediately after finishing another job and scavenged the vending machines for snacks. As fate would have it, I went into insulin shock during the flight and had to ask him for something with sugar. We initially asked for a soda, but he only had diet; and then he offered his snacks. He called ahead and arranged for a taxi to take us from the airport to a motel. Right after we landed the storm closed in and everything shut down.

In our area there is now a group called Angel Flights, but I don't have any other information about them. I suggest you contact your local clinics, hospitals and emergency services for emergency air transport available in your area. Good luck to you.

Another alternative for you might be to move to Rochester, MN (or wherever you will be having your transplant) and secure a room in a transplant house or inexpensive studio or apartment to wait for your transplant. Your transplant hospital should have contact information and suggestions to help you facilitate that if it becomes necessary for you.

REPLY
@keggebraaten

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/

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@keggebraaten I wish I had this list when I was considering dual listing. Thankfully a transplant came through for me in Boston which is about 55 miles away so there was no need for overnight arrangments.
JK

REPLY
@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.

Jump to this post

@2011panc @IWantToBelieve I believe it is easy to find rentals in Florida for whatever amount of time you need, for reasonable prices. We considered the Mayo there and the one in MN since the flights to both were approximately the same cost for us.
JK

REPLY
@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.

Jump to this post

if you have insurance???? I live in south texas and I am treated at the mayo in Rochester Minnesota. I have secured a flight with alacura med flight. I had to get the mayo clinic to help convince my insurance that a transplant call is a emergence call. I did ask what out of pocket would cost 40 to 60 thousand depending on my health. check angle flight also. I hope this helps

REPLY
@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.

Jump to this post

Thank you, your answer is very helpful. I'm hoping to have a living donor and avoid all this but that might not happen and I have been wondering how I would get to Rochester in time. I now have some options to investigate.

REPLY
@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.

Jump to this post

Very helpful. Thank you!

REPLY

@IWantToBelieve
I made contact by searching the Web. I filled out 3 questions application for 3 different companies and media flight contacted me and put me in touch with Alacura. I wish you the best. Prayers for you on your journey.

REPLY
@jerrydrennan

@IWantToBelieve
I made contact by searching the Web. I filled out 3 questions application for 3 different companies and media flight contacted me and put me in touch with Alacura. I wish you the best. Prayers for you on your journey.

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@jerrydrennan I saw those applications and I will pursue this avenue when I get on the waitlist if I'm not able to have a living donor. Thanks so much for sharing as it is something I never thought of before.

REPLY

I had worked on securing my flight whil I was having my possible donors screened. I had 11 people sign in and only one made it to be checked at the Mayo. Then was turned down at the last test. If you are able make contact now and they understand what your up against. You might or might not have to use them. I wish the best. I will help with information and prayers.

REPLY
@jerrydrennan

I had worked on securing my flight whil I was having my possible donors screened. I had 11 people sign in and only one made it to be checked at the Mayo. Then was turned down at the last test. If you are able make contact now and they understand what your up against. You might or might not have to use them. I wish the best. I will help with information and prayers.

Jump to this post

@jerrydrennan Thanks for your prayers! I will pursue this once I'm officially on the transplant list. My GFR is 20 now but I get an iothalamate test next month to get an exact reading because my nephrologist thinks it will go up to 21 or 22 once I'm off the study med so hopefully I have a little longer.

REPLY
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