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Once you embark on the transplant journey, you will find yourself intricately connected to your transplant team. From pre-transplant visits to yearly follow-ups after transplant, you might feel like you see your transplant care team more than you see your extended family. At many transplant centers including programs at Mayo Clinic, after receiving your organ you continue your relationship with them for life. However, that lifelong relationship doesn’t mean you shouldn’t have other people on your team who can care for you when you don’t necessarily need your transplant team.
Having a local doctor who can care for your general health before and after transplant is typically required. Whether you choose a specialist or a family practitioner, your home provider can work with your transplant team to coordinate your care.
When you have a medical issue, who do you contact – your transplant team or your local provider? Here are some general tips regarding who to call when you have an issue or question about your medical situation. If your transplant center has given you information that differs from this list, you should follow their recommendations. In all cases if you have a medical emergency, you should call 911 or go to your local emergency room.
Medications
Immunosuppressive medications need to be taken consistently and correctly. If you miss a dose of your immunosuppressive medication, contact your transplant center team for instructions.
Transplant medications can be expensive. If you are unable to obtain your medications due to cost or pharmacy issues, be sure to contact your transplant care team.
Whether a new medication is prescribed by your local doctor or you obtain it over the counter, you should contact your transplant team prior to taking anything new. Some medications are safe to use with your transplant medications but some may not be safe. Your local provider should be able to manage all of your non-transplant medications, but if you have questions about a certain medication, contact your transplant pharmacist.
Symptoms of Illness
If you are feeling ill or having symptoms of illness, contact your local doctor. Common cold symptoms, minor aches/pains, minor injuries, and other common symptoms should be able to be addressed locally. Your local provider can collaborate with your transplant team to ensure that the course of action suggested is safe for your transplanted organ. After you visit the local provider, notifying your transplant team is important.
If you are diagnosed with any form of infection (urinary, bladder, pneumonia, etc.) or have been recently hospitalized please contact your transplant nurse coordinator. It is also important to report any changes made to your immunosuppressant medications by your local provider. Reporting any malignancies such as cancer to your transplant team is important as well.
In any emergency situation, you should call 911 or go to your local emergency room.
Life Changes
If you have changes in your life that might affect the care of your organ, you should let your transplant care team know. These might include a change in your insurance coverage, changes in your employment, recent hospitalizations, accidents, or diagnosis of a new disease or illness. To provide you with the best transplant care, your transplant team relies on a collaborative relationship with you as the patient and your primary provider.
Remember, if you have questions specific to your personal situation, it’s always best to contact the transplant team caring for you.
What have you done to help keep your doctors updated on changes to your condition?
HELPFUL LINKS
- Contact Mayo Clinic's Transplant Programs
- Explore Mayo’s Transplant Center
- Request an appointment
- Connect with others in the transplant discussion group on Mayo Clinic Connect
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@keggebraaten Great info. Each transplant center does have its own protocol too of which the patient needs to be aware.
If I have an infection - "If you are diagnosed with any form of infection (urinary, bladder, pneumonia, etc.) or have been recently hospitalized please contact your transplant nurse coordinator." like a UTI which I did recently have, my transplant team is not involved. My PCP and or urogynecologist are the ones that handle that. I do run every medication that is prescribed by my transplant team though.
My local provider (my PCP) would never cross the line and change anything about my immunosuppressants. He is very respectful of their position and they are of his. The transplant team makes it known, they are there for the patient for anything to do with their transplant. Other issues should be handled by an appropriate doctor. Again, I do check with them though, whether it be for an antibiotic, an osteoporosis medication, my thyroid medication, or medication for my Barrett's Esophagus. I think part of their position may be that they do not want to step on the toes of the patient's PCP, which could cause some resentment. That is just my supposition. I do like that they do not hold themselves up to be the "all-knowing" medical presence for their patients, they are there for transplant issues.
If I have a high temperature, as I did one night in 2017, we did call transplant. I think my temp was 104°. They told me to get down there immediately. I was glad I did because it turned out to be Legionnaire's Disease and they put me right into the transplant unit to be cared for by nurses and doctors most familiar with transplant patients. Needless to say, I really love my transplant center, MGH. They have been wonderful in every way.
JK
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1 Reaction@keggebraaten Funny timing on your post I just recently mentioned to my team about reporting an issue not necessarily transplant related. I saw a couple of drops of blood while urinating and was told that would be covered by your pcp . So I definitely get confused at times about what is transplant related or not. What prompted me to report it was there was a questionier I answered that asked questions in that area and i did not report it. so I figured I better report it since I thought they may want to test for blood in my urine during the next blood work.
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2 Reactions@danab and @contentandwell - you both hit the nail on the head. The mutual respect that transplant teams have with local doctors is so important. Your local providers tend to know you best because they've been with you for the long term, and our transplant providers rely on that knowledge to do what's best for you from a transplant perspective. Also, this post is not meant to limit the reasons why you should contact your transplant team. If you think you should call, then call (or message through the online services). Our team is here for you 24/7. This post was just meant to help guide you in those decisions when you might be stressed or ill and not really know what to do. I hope it helps!
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2 ReactionsIt was for me that I'm also trying to limit exposure as much as possible. I was already getting blood work actually today and now Ill have to probably have to go to another lab once I see my pcp in a couple of weeks to test for this. Also it was also a question on the pre-appointment questionier so I'm wondering why they asked it in the first place. I'll be asking that today when I see the doctor.
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