Post-Transplant Care: What to Expect

Jun 21, 2024 | Kristin Eggebraaten | @keggebraaten | Comments (15)

The path to transplantation often presents a challenging journey marked by hurdles and uncertainty. However, the day of your transplant is not your destination. Your new life is just beginning. Now you must do what you can to nurture and safeguard your new organ, a critical task as you invest in your health and well-being. Let’s discuss some events that will occur for you after you have left your transplant center to live your best life.

Periodic Lab Tests and Medication Adjustments

From the moment you’re transplanted, you will begin a medication regimen that will last the rest of your life. Taking your medications on time and at the proper dosage is critically important to maintaining your health and that of your new organ. Your transplant center will monitor your medication levels with periodic blood draws and will let you know if adjustments are needed. In the immediate days following your surgery, you can expect blood draws often, even once or more per day. As the days and weeks go by, these blood draws will become less frequent, but your transplant center will always be keeping an eye on your medication levels and the function of your new organ. Some of our patients tell us that the person who draws their blood becomes a good friend because they see them more than anyone!

Follow Up Visits to Your Transplant Center

After your transplant surgery, your transplant care team will want to see you back at the transplant center periodically to assess the function of your organ and overall health. The timing of these visits can be different at different transplant centers and dependent upon your medical condition after transplant and the organ you received. For most organ transplants at Mayo Clinic, we’ll ask you to visit four months and one year after your transplant, and then every year thereafter. Talk to your transplant team to find out if, and when, these visits might transition to your local doctor.  Each of these visits is usually only a couple of days but could be more depending upon how you’re feeling and how long you’ve had your new organ.

Unscheduled Occurrences and Visits

As a post-transplant patient, you’ll soon find out that your medical issues don’t always comply with your schedule. You might need to see a doctor in between the regularly scheduled visits back to your transplant center. At Mayo Clinic, we’re always willing to see you any time you need us; however, we also understand that many of our patients are from far away and would rather not hop a plane every time they’re sick. While your transplant center will manage your transplant-related care, it is necessary for you to have a local primary care provider to manage your primary care needs. They can also help to coordinate testing or treatment for post-transplant issues and are a vital part of the team.

When you’re ill, we’re able to communicate with your local doctor for lab work and treatment so you don’t have to travel to see us, especially if your illness is common or not directly related to your organ transplant.

Communication with Your Nurse Coordinator

If you receive your transplant at Mayo Clinic, post-transplant RN care coordinators are available to you by phone and via patient online services during normal business hours. In between your visits to the transplant center, your nurse coordinator or one of their colleagues can assist you with questions regarding illness, medications and new symptoms. Your care team may provide you with a list of concerns, and which ones require your transplant team to be notified. If your transplant team is not Mayo Clinic, be sure you have a communication plan set up with them.

Mayo Clinic transplant care teams monitor patients closely so that each patient gets the care he or she needs when it's needed. This approach ensures the success of the transplant in collaboration with you and your local physician. Your ongoing health after transplant is very important to us and to your family and friends. Making those follow-up visits and communications from your primary care physician back to your transplant center can be an important part of keeping your organ healthy so you can live a long and happy life.

If you are a post-transplant patient, did anything surprise you about your post-transplant care?

HELPFUL LINKS

 

Interested in more newsfeed posts like this? Go to the Transplant blog.

Profile picture for woodstock1959 @woodstock1959

@woodstock1959 I hope they don’t send him home. There is no way I can get him out of bed. He’s 6 ft 189 lbs. I am 5 ft

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@woodstock1959 And again hospitals are required to discharge patients to safe environments, conduct discharge planning, and document safety concerns raised by the family. If they attempt to discharge him before he is able to walk, communicate, or help manage his own medication: remember to communicate - You "do not feel this discharge is safe and you are requesting a reassessment and involvement of a case manager."

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Profile picture for stephanierp @stephanierp

@woodstock1959 And again hospitals are required to discharge patients to safe environments, conduct discharge planning, and document safety concerns raised by the family. If they attempt to discharge him before he is able to walk, communicate, or help manage his own medication: remember to communicate - You "do not feel this discharge is safe and you are requesting a reassessment and involvement of a case manager."

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@stephanierp thank you

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Profile picture for stephanierp @stephanierp

@woodstock1959 I will join you in prayer.

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@stephanierp thank you prayers are always appreciated

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Profile picture for woodstock1959 @woodstock1959

@pgruetz thank you. Day 8 he’s still very confused doesn’t recognize pics of family or me. He says my name later in the day and talking but not making sense. He didn’t have a stroke or seizure. Were you like this

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@woodstock1959
Absolutely I was a mess and didn’t know were I was and my thoughts were very bizarre even when I first got out of the hospital I suffered major depression and had suicidal thoughts I was not in a good place and wished I never went threw it all my brain bleed stroke and seizure definitely contributed to it, I was put on Keppra for over 2 years and saw a neurologist. They did a EEG and other tests on me . My one complaint was there wasn’t anyone that I could talk to my hospital advocate was worthless and truthfully shouldn’t have a job there (not Mayo ) I didn’t know about this site for a year but it would have helped, I’ve only met one person in my life that had a liver transplant . Give it time in a period of 2 1/2 years I was put under over25 hours of surgeries. Keep in mind I was an extreme case and near death (within a couple of days) everything is great now I’m very happy swimming a mile almost everyday but stay in a very small circle of friends and never go in any crowded places ever because of my low immunity and eat extremely healthy no fast food etc . I was a test case for my hospital for over a year for students that attended the college. Give your husband time I was totally out of it for quite awhile and down to only 3 different meds when previously I started on 26 different ones. I believe that was part of it having so many different drugs. I took an IQ test and am above average so I know my brain isn’t shot . I wish your husband well it’s a long recovery road plus during all of this I had to learn how to walk twice and used a walker for months.

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Profile picture for pgruetz @pgruetz

@woodstock1959
Absolutely I was a mess and didn’t know were I was and my thoughts were very bizarre even when I first got out of the hospital I suffered major depression and had suicidal thoughts I was not in a good place and wished I never went threw it all my brain bleed stroke and seizure definitely contributed to it, I was put on Keppra for over 2 years and saw a neurologist. They did a EEG and other tests on me . My one complaint was there wasn’t anyone that I could talk to my hospital advocate was worthless and truthfully shouldn’t have a job there (not Mayo ) I didn’t know about this site for a year but it would have helped, I’ve only met one person in my life that had a liver transplant . Give it time in a period of 2 1/2 years I was put under over25 hours of surgeries. Keep in mind I was an extreme case and near death (within a couple of days) everything is great now I’m very happy swimming a mile almost everyday but stay in a very small circle of friends and never go in any crowded places ever because of my low immunity and eat extremely healthy no fast food etc . I was a test case for my hospital for over a year for students that attended the college. Give your husband time I was totally out of it for quite awhile and down to only 3 different meds when previously I started on 26 different ones. I believe that was part of it having so many different drugs. I took an IQ test and am above average so I know my brain isn’t shot . I wish your husband well it’s a long recovery road plus during all of this I had to learn how to walk twice and used a walker for months.

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@pgruetz Oh my goodness, thats a lot to go through. I am so sorry. Thank you for the encouragement. I wish you all the luck and congratulations in your accomplishments. Depression is a horrible thing to go through. I am battling it and have been for years. Best wishes

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