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6 days ago · Cholangiocarcinoma - Bile Duct Cancer - anyone else dealing with this? in Cancer

@jerrydrennan,
Hi Jerry. I am sorry you have had a communication breakdown with our team. I am happy to try to help. If you are a transplant patient at Mayo, then I am certain you have seen a social worker, probably several times, in your appointment processes. You are very welcome to call the toll free number (866-227-7501) or send a secure online message directed to your nurse, your doctor, or your social worker. Any of them should be able to help with your questions, and your social worker, as stated above, can help you with your communication issue. It's important to us that our patients understand their care and their diagnosis and have a full understanding of what they are reading in their online records. If you have specific questions or want me to send a note to someone on your team, please message me privately and I am happy to do so on your behalf. Thanks!

Tue, Jan 29 1:07pm · New Transplant Blog Posts in Transplants

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

Tue, Jan 29 12:00pm · Transplant Physicians and Local Physicians: A Partnership to Provide Best Care to Every Patient in Transplant

When you are in need of complex care such as organ transplant, your local care team will often refer your case to a specialist. Many times that specialist is located outside the health care system where your local doctor practices. How will your care be coordinated? Will the local doctor know what’s happening with your condition, and who is responsible to tell him that information? Will the local team and specialist agree with what’s best for your treatment plans or will you end up with conflicting information from the two groups? These are all concerns for many patients who need to leave the comfort of their local care team and venture into a larger and more complex medical system for their care. Everyone in your health care circle is responsible for providing communication about you to anyone you have listed in your medical charts….including you.2019-01-23 Local MD Communication Blog

Sharing Your Visit Information

Large health care organizations like Mayo Clinic know that most patients have a local team of doctors and nurses caring for them, and many patients have a long history with those doctors. It’s important to us that your care is being coordinated and continued after you leave our clinic. Our doctors, nurses and medical secretaries are experts at communicating with your home providers using secure online methods, printed letters and notes mailed to your provider, and phone calls when the information is more urgent or needs more explanation. Each time you visit Mayo Clinic, your information will be communicated to the local providers listed in your records, and also to you through your patient online services. Our team is also available for phone calls and questions from your local doctor about your care. This partnership is important – you need your local providers after your transplant visit just like you needed them before your visit to us. The local doctors care for you before your transplant visits and after your transplant surgery for periodic testing, treatments, and for anything urgent that you need between your visits to Mayo Clinic. It’s also important that they communicate with your transplant team regarding that interim care so next time you visit us, we are aware of your updated medical history.

Urgent Care for Patients

In urgent situations when you are at home, your local doctors will care for you. If they need records or advice from your transplant team, they are able to reach someone 24 hours a day, 7 days a week through the Mayo Clinic operators. Each organ group has a doctor on-call to take questions and provide local doctors with information about transplant patients. In cases when the local team isn’t comfortable with transplant-related issues, the transplant and local physicians can work together over the phone, and if the patient requires a visit to Mayo, those arrangements can be made.

Patients as Self-Advocates

Sometimes physicians may not be up to date on your current status due to missed communications or busy clinic days. This is just one reason why it’s important for patients to understand their conditions and advocate for themselves. If you are receiving conflicting information from your local and your transplant care teams, or you have questions regarding the care you are receiving, you should feel comfortable participating in the conversation. You, and often your caregiver, are the best advocates for your medical situation, and you should ask as many questions as you need to until you understand the situation. Making sure you understand your condition and having notes about your treatment plans are important steps in making sure your physicians stay on the same page about your care. We know it isn’t easy, but always attend your appointments with a notepad so you can write notes about your visit and write down your questions for your care team. Your caregiver can also be a great help with this task, and with being your advocate when you need assistance in understanding your care plans.

In medicine, just like in any complex situation, communication is key. The Mayo Clinic system is designed with the patient at the center of the system. Our primary goal is to meet your needs and those of your care team at home so that you can focus on your health and happiness. We are always working to improve methods of communication so we can more easily assist our patients and their local doctors wherever they live.

Have you witnessed great communication between your different care teams? What methods did they use to make sure everyone was up to date on your situation?

HELPFUL LINKS

Mon, Jan 21 9:04am · Just wondering...sometimes after the call, it doesn't work out? in Transplants

@myson,
I’m sorry that you had a bad experience at this hotel. We certainly don’t want your visit as a patient or caregiver to Mayo Clinic to be marred by a bad experience with your hotel accommodations. This facility is located on the campus of Mayo Clinic in Florida but is independently operated. The hotel is actually scheduled to close in a few weeks. The building will be demolished and there are future plans for a replacement. There are several other hotels on or near our campus that are available to serve the needs of our patients.

Wed, Jan 16 10:32am · New Transplant Blog Posts in Transplants

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

Wed, Jan 16 10:20am · Transplant Tourism - Patients Travel Around the U.S. for their Best Transplant Options in Transplant

Domestic transplant tourism is a phrase used to describe the concept of traveling inside the U.S. but outside your home area, or outside of your state, to obtain an organ transplant. Occasionally, patients find the need to travel for transplant. Sometimes they don’t have transplant services in their area, or their local hospital may not have the specialists or equipment necessary for their complex diagnosis. A transplant center outside of their state might be more experienced or be the only one who offers a plan for their particular disease. Sometimes, patients travel to areas where the organs are more plentiful so they can be transplanted more quickly. The choice of where to be listed for transplant and where to receive your organ is a personal one and patients make the choice to travel if it is best for their situation.2019-1-16 Transplant Tourism Blog

In a letter to the editor published in the journal Liver Transplantation titled “Analysis of the Nature and Frequency of Domestic Transplant Tourism in the United States”, the authors examine the statistics of patients who travel for their transplant. The hope of this analysis is to understand the numbers and the reasons for travel in order to help make more educated decisions about future organ allocation policies in the U.S. Prior to this article, much of the study regarding transplant tourism has been conducted on patients traveling between countries, not within their own country.

The authors of this letter studied liver transplant patients who received a deceased donor between January 1 and December 31 of 2017. Patients were excluded if they were transplanted at a veteran’s hospital, transplanted in their state of residence or in a neighboring state. The authors found that of the 318 patients who were included in the study, nearly half of them traveled to one of four liver transplant programs – Mayo Clinic in Florida, Mayo Clinic in Arizona, Mayo Clinic in Minnesota and Ochsner Clinic in Louisiana.

The reasons for traveling for transplant vary. Some patients don’t have a transplant center in their state so they must travel for services. Sometimes insurance plays a part in where people are covered for surgeries, so they must travel to gain their highest benefit levels. There are also situations where insurance companies have contracts with hospitals, so the patients must travel to a certain hospital for their care. Patients can also research the best hospitals for their needs. Online statistics can help patients determine which hospitals have the best outcomes, fastest transplant rates and the most experience in transplantation.

Whatever your reason for travel, keep in mind that you’re not alone. Many patients travel to Mayo Clinic and other transplant centers around the country to get the care they need. Recently in our blog and discussion group, we answered questions about how to navigate travel during this complex time in your journey. Hopefully as researchers and physicians study this trend more, the policies governing transplant will evolve as travel needs change for patients.

Did you travel for your transplant surgery? If so, was it your decision or was it based on factors out of your control?

HELPFUL LINKS

Wed, Jan 2 11:06am · Liver transplant support group in Transplants

@rosemarya and @contentandwell and others,
Great discussion about the transplant list and deceased donors versus living donors. I spoke with our medical director and she may be able to help clarify why the need for all patients to be listed. Doctors perform a thorough evaluation on the recipient whether they are getting a deceased donor or a living donor transplant. The qualifications for receiving a transplant need to be met by the recipient for both deceased and living donation. The reason he is placed on the list is mostly a logistic reason – the United Network for Organ Sharing (UNOS) tracks transplants and patients for both deceased and living donation, and there is only one list. Every patient getting a transplant is placed on the UNOS list. The doctors determine if patients qualify for transplant, and then they determine if living donor transplant is the best option for that patient, but the list we enter the patient into tracks all the information for future use. I hope that makes sense. Please ask if you have more questions.

Dec 11, 2018 · New Transplant Blog Posts in Transplants

Good morning!
If you've been called in for transplant or have started your evaluation process, you likely know that the costs and convenience of lodging during this time is not always great. Hotels can be costly and let's face it, they aren't always clean enough for even the least picky guest, so they certainly aren't the best for a immune compromised patient. That's why Mayo Clinic, and other transplant centers, have made the choice to partner with hospitality houses, so that patients can have an easier – and cheaper- experience with lodging choices. Read more about our transplant house partners in the attached blog and share this info with anyone who might need a place to stay during their transplant process.
Have a wonderful week!
Kristin

https://connect.mayoclinic.org/page/transplant/newsfeed/transplant-hospitality-houses-a-home-away-from-home/