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

@des46893

Make sure you are comfortable with the house rules before making a decision.

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Yes, being comfortable with the rules is important for the health and safety everyone. Everybody has different needs, and comfortable lodging is about our caregivers as well as the patient. As in all things transplant, there is not a one-size-fits-all. I believe that is why the tour is required, so that we can learn about the requirements and make the choice that is in our best interest.

Liked by jodeej

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@rosemarya

Yes, being comfortable with the rules is important for the health and safety everyone. Everybody has different needs, and comfortable lodging is about our caregivers as well as the patient. As in all things transplant, there is not a one-size-fits-all. I believe that is why the tour is required, so that we can learn about the requirements and make the choice that is in our best interest.

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I think it's also for the best interests of the other guests. You may be clean and safe, but you want everyone else to be, too.

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Happy 2019 everyone! I am so glad to see that this group has gained so many new members for the new year. The discussions have been informative and helpful to so many. You should all be proud of your desire to share your stories and assist each other in such a meaningful way.

Today's blog post is an interesting topic. Transplant tourism has been a phrased used in an international sense for years to describe patients who visit other countries to get their transplants. This blog redefines transplant tourism as a phrased used for those who travel to different states within the U.S. for transplant. There are many reasons for patients to travel, and the authors of the source behind this blog describe some of those reasons and why there is a need for some patients to travel around the country for the best care. Let us know what you think, and feel free to share your own travel stories!
https://mayocl.in/2FGLLNf
Have a wonderful week!
-Kristin

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Hello everyone! If you are in the Midwest, I hope you are staying warm today. Our temps here in Minnesota are reaching record lows this week. If you live here or are visiting Mayo Clinic, be safe when traveling around or going outside. Days like today, we offer high praises to the person who designed our skyway and pedestrian subway system so our patients and employees don't have to go outside to get from place to place.

Today's blog post is helpful for anyone who has a local doctor and a transplant doctor. The partnership between any number of doctors who are caring for you is an important part of your treatment success. At Mayo Clinic, we partner with your local care team to ensure that your transplant care is understood and carried out by anyone who is part of your medical team. Local physicians are critically important in providing us with information about your medical situation when you seek care locally. Communication is key to a successful life after transplant.
https://mayocl.in/2G97jSQ
Have you experienced good communication with your care teams? And what part did you play in helping this communication to take place?
Stay warm and have a great week,
Kristin

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@keggebraaten
I am from south Texas
The weather is better down south. On topic its has been more of a chore for me to get my Drs and the mayo to be able to communicate. I dont know of it's the new software or the distance. I usually have to print the result and send if yo my Drs or they stay on hold with the desk. There is a need of improvement. It might be the distance. But I do play a big part in making sure I do gats to who it needs to.
God Bless
Jerry Drennan

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@keggebraaten

Hello everyone! If you are in the Midwest, I hope you are staying warm today. Our temps here in Minnesota are reaching record lows this week. If you live here or are visiting Mayo Clinic, be safe when traveling around or going outside. Days like today, we offer high praises to the person who designed our skyway and pedestrian subway system so our patients and employees don't have to go outside to get from place to place.

Today's blog post is helpful for anyone who has a local doctor and a transplant doctor. The partnership between any number of doctors who are caring for you is an important part of your treatment success. At Mayo Clinic, we partner with your local care team to ensure that your transplant care is understood and carried out by anyone who is part of your medical team. Local physicians are critically important in providing us with information about your medical situation when you seek care locally. Communication is key to a successful life after transplant.
https://mayocl.in/2G97jSQ
Have you experienced good communication with your care teams? And what part did you play in helping this communication to take place?
Stay warm and have a great week,
Kristin

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@keggebraaten I had my transplant at Mass General Hospital (MGH), and live in southern NH. The name of my PCP is on all of my reports from MGH, and they respect the role of the PCP and will not “step on that doctor’s toes”. MGH handles anything related to transplant, and if a medication is prescribed for me I check it with them, but any other exams and tests they defer to the PCP.

Anytime I go to MGH they FAX reports from my visit there to my PCP. My part was simply to make sure they had the contact info for my PCP. They even called on the day that I had my transplant to keep him totally in the loop. Any of my doctors up here in NH also FAX their reports to MGH.

I like that they do not try to play God and think that only know all the answers, even though I am sure they do and would step in if they were concerned with a treatment prescribed by a different doctor.
JK

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@keggebraaten

Hello everyone! If you are in the Midwest, I hope you are staying warm today. Our temps here in Minnesota are reaching record lows this week. If you live here or are visiting Mayo Clinic, be safe when traveling around or going outside. Days like today, we offer high praises to the person who designed our skyway and pedestrian subway system so our patients and employees don't have to go outside to get from place to place.

Today's blog post is helpful for anyone who has a local doctor and a transplant doctor. The partnership between any number of doctors who are caring for you is an important part of your treatment success. At Mayo Clinic, we partner with your local care team to ensure that your transplant care is understood and carried out by anyone who is part of your medical team. Local physicians are critically important in providing us with information about your medical situation when you seek care locally. Communication is key to a successful life after transplant.
https://mayocl.in/2G97jSQ
Have you experienced good communication with your care teams? And what part did you play in helping this communication to take place?
Stay warm and have a great week,
Kristin

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My local hospital, my nephrologist in Sioux Falls and Mayo Clinic all use the same software system. My PCP and my nephrologist have both told me that they can access all my reports and test results at Mayo. I need to find out if Mayo can access my information at my local hospital. Haven't had my transplant yet. Hopefully sometime this summer. But my entire care team should have access to everything that is going on.

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After my return home from transplant, my first task was to make contact with my PCP. His name and contact are on all of my reports from Mayo and he gets copies of visit summaries. He takes care of all of my routine and non-liver/kidney transplant issues. He is is my first line of defense locally and will refer me to specialists when he thinks it is necessary. He is happy to cooperate with Mayo and he tells me, "I don't know about that, I think you should ask Mayo". In critical situation he has sent me to ER, where there have been contacts made with Mayo by ER doctors, or the hospital doctor. He knows me well because I have been his patient for many years. In fact he was the doctor who first suspectd that I had a liver issue, and referred me to GI.

My local hospital and satelites clinics, are improving their computer systems. For a period of time, the FAX did not always make it to Mayo with my routine lab results. On several occasions have had to ask them to re-send. Twice my prograf kit was lost lost in transit.
Mayo does connect with the records dept when needed.

Mayo Transplant Dept has a 24/7 phone contact that I have used on several occasions. And my nurse coordinator is easily accesible via patient portal.

I appreciate my local care givers because they recognize my need for prompt attention and care.

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@marvinjsturing

My local hospital, my nephrologist in Sioux Falls and Mayo Clinic all use the same software system. My PCP and my nephrologist have both told me that they can access all my reports and test results at Mayo. I need to find out if Mayo can access my information at my local hospital. Haven't had my transplant yet. Hopefully sometime this summer. But my entire care team should have access to everything that is going on.

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@marvinjsturing I think there is more to it than just software, the medical facilities need to be connected. My local doctor is on the same software as MGH but they are not connected. They keep up to date via FAXes. MGH is connected to the hospital where I had my TKR so they are both on the same portal.
JK

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I am always talking to doctors, and nurses. We need to have a synced, or what ever the best word would be. A doctor should be able, to put in my information, name, birth date, etc., and get all my medical information.

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I know it can seem to be extra work and additional time, but I always download the labs and medical reports from my local doctors and upload them to my nurse coordinator at Mayo. I can even send my blood labs to her before they are faxed by the lab company. If there is something in particular my local doctor is looking at or concerned about, I also make a note to communicate that to my Mayo coordinator. it's just my double security, just like a house alarm or two step security online. I am committed not to let anything fall through the cracks. It took me a little time to understand how to accomplish this technically, but it has helped so much. I just celebrated my second year after my heart transplant and I haven't seen a Mayo heart doctor in 14 months. Still waiting for my 2 year appointments. So my local docs are critical for my health. On the other hand, I was sent to Mayo for a cataract, because my local ophthalmologist did not feel confident operating on a heart transplant patient. Same with my orthopedic surgeon. He wants me to have a hip replacement at Mayo. So it's a game of balance and keeping open and flexible. There is no magic button here. Carry on, my sisters and brothers. We are special!

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@estrada53

I know it can seem to be extra work and additional time, but I always download the labs and medical reports from my local doctors and upload them to my nurse coordinator at Mayo. I can even send my blood labs to her before they are faxed by the lab company. If there is something in particular my local doctor is looking at or concerned about, I also make a note to communicate that to my Mayo coordinator. it's just my double security, just like a house alarm or two step security online. I am committed not to let anything fall through the cracks. It took me a little time to understand how to accomplish this technically, but it has helped so much. I just celebrated my second year after my heart transplant and I haven't seen a Mayo heart doctor in 14 months. Still waiting for my 2 year appointments. So my local docs are critical for my health. On the other hand, I was sent to Mayo for a cataract, because my local ophthalmologist did not feel confident operating on a heart transplant patient. Same with my orthopedic surgeon. He wants me to have a hip replacement at Mayo. So it's a game of balance and keeping open and flexible. There is no magic button here. Carry on, my sisters and brothers. We are special!

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Good for you taking charge of your healthcare. It is something that I, too, have learned to do after my liver transplant. And you are right about it not being easy. But as transplant folks, we've been through too much not to own it and make sure all our docs are on the same page.

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Definitely agree with you. Take care.

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@keggebraaten

Hello everyone! If you are in the Midwest, I hope you are staying warm today. Our temps here in Minnesota are reaching record lows this week. If you live here or are visiting Mayo Clinic, be safe when traveling around or going outside. Days like today, we offer high praises to the person who designed our skyway and pedestrian subway system so our patients and employees don't have to go outside to get from place to place.

Today's blog post is helpful for anyone who has a local doctor and a transplant doctor. The partnership between any number of doctors who are caring for you is an important part of your treatment success. At Mayo Clinic, we partner with your local care team to ensure that your transplant care is understood and carried out by anyone who is part of your medical team. Local physicians are critically important in providing us with information about your medical situation when you seek care locally. Communication is key to a successful life after transplant.
https://mayocl.in/2G97jSQ
Have you experienced good communication with your care teams? And what part did you play in helping this communication to take place?
Stay warm and have a great week,
Kristin

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@keggebraaten my situation is a little different. My transplant journey involves 2 different centers. The first is one I won’t name and the second is Mayo in Rochester, MN. I had a pancreas transplant in 2005. I was satisfied with the pretransplant evaluation. The transplant itself was fantastic. It was like my own personal miracle. Unfortunately as time went on (after about 3 months – a year) the follow up turned out to be really lacking. My local providers were & are great but I struggled along with very little involvement or support from the transplant team. In 2016 I was having some serious decline in kidney function and I met criteria for kidney transplant evaluation. I ended up going through evaluation at the previous facility and also at Mayo. I was approved and accepted for transplant at both centers. I chose Mayo. There’s no comparing the two because the difference is amazing. Mayo is thorough, detailed, has stellar organization & communication & hopefully great follow up. There is good communication between the Mayo team and my local providers. I only wish the Mayo team was monitoring my first transplant because I’ve lost confidence in the previous center. I pointed out that I heard that “once you become a transplant candidate at Mayo, you become a lifelong Mayo patient”. Unfortunately I guess that principle is not retroactive. I wish!

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@contentandwell

@marvinjsturing I think there is more to it than just software, the medical facilities need to be connected. My local doctor is on the same software as MGH but they are not connected. They keep up to date via FAXes. MGH is connected to the hospital where I had my TKR so they are both on the same portal.
JK

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Yes, I know. I worked in IT for 20 years. But most people on Connect wouldn't understand (or care) about what happens behind the scenes.

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