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
- Explore Mayo’s Transplant Center.
- Request an appointment.
- Get support from other transplant patients in the transplant discussion group on Connect.
Connect
So my husband went through a liver transplant. I want to know if anyone that has had a liver transplant gone through the same process. When my husband got out of the OR he was very disoriented which I did expect. 5 days after though he’s still very much disoriented. Knows names and his name but his words are repetitive and inconsistent. His sentences consist of “I talk you now?” “You talk me now”. MRI doesn’t show signs of stroke and EEG shows no signs of seizures. Can anyone help me please.
Hello,
I'm Stephanie and I had a kidney transplant six years ago. I experienced significant brain fog after surgery. Within a few days, I could read, but had trouble remembering what I read from one page to the next. I listened to the medicines they placed me on, but could not memorize. I could write simple texts and emails. I could watch hgtv shows, but had trouble following shows with complex story-lines.
What you are describing sounds fundamentally different than the brain fog I experienced. You may have already done these things, but I would;
* request a neuro consult. I would research which neurologist you would like him to be seen by.
* communicate you do not feel safe to take him home until some diagnosis and assessment is provided, so you can determine the level of care he is going to need. (The words: I do not feel safe taking him home...... are key alert words the hospital has to take seriously)
* request speech therapy in addition to whatever physical therapy they normally provide.
* be the very squeaky wheel.
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5 ReactionsSorry I meant to mention, the drugs patients are on after a transplant can make them woozy and everyone responds differently to those meds. Maybe discuss a different type of pain medication? And discuss possible side-effects of the drugs he is on, with a doctor. Set an appointment with the doctor if necessary. Write out your questions, as some doctors do their rounds super early in the morning before most of us can gather our thoughts.
Sending you prayers of hope and healing!
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3 Reactions@woodstock1959 I was a complete mess after my transplant but I had a stroke a seizure a brain bleed and a few days in a coma 2 collapsed lungs but after all that I was not all there for at least a couple of months truthfully now 3 years later I am doing great just be patient my surgery was 13 hours long being under for Long periods takes a toll give lots of leeway everyone is different it’s not a cookie cutter ordeal
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2 Reactions@pgruetz thank you that’s encouraging. My kids tell me a day at a time. I’m just scared.
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1 Reaction@woodstock1959
The recovery takes a year so being patient is key don’t rush anything or he will be back in surgery it happened to me and 2 1/2 years later I finally felt decent I’m 66 so recovering was slower my favorite part was getting out of the hospital no doubt I hope everything goes well
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2 Reactions@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
@stephanierp yes they are doing speech, PT and OT therapy. He was seen by a neurologist and he said it was post delirium. I just take it a day at a time. I am worried it won’t be reversible. I have been praying a lot.
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2 Reactions@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
@woodstock1959 I will join you in prayer.
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