What helps with post liver transplant fatigue?

@contentandwell you are so right. I also had a great surgical team and mine lasted 8.5 hours. I was called at 12 noon and the surgery began at 5pm. I was wheeled out at about 1:30 am. I came to surrounded by my kids and mother. Best thing I have ever seen, smiling relieved faces.

I was looking for some knowledge because my boyfriend had a liver transplant in 2016 and is still extremely fatigued. He doesn’t have a primary care physician and doesn’t like to bother his team. He is also diabetic and has neuropathy. I don’t think he’s the best at following his diabetes. He tells me he does take his anti rejection meds. I’m always worried about him. His sugar has gone up over 600 at times. I feel it’s bc of poor management. Can anyone please offer some help. Thank you. Karen

Hi,@karenmarian2. I see that this is your first post, and so Welcome to Connect. I had my transplant, liver and kidney, in 2009. The concerns that you have mentioned like not having a primary care physician (PCP), uncontrolled diabetes, and fatigue also concern me. It is apparent that you understand the necessity of adherence to the anti rejection medications, and so does your boyfriend. That is a good thing because it shows that he does want to comply with one of the major post transplant requirements.

I am wondering whether you were with him in 2016 when he got his transplant. This could be a good opportunity to either review, or to have a talk with him about his post transplant responsibilities. When we are taking antirejection medications, there are required routine blood labs to monitor and maintain a safe level of the meds in our body. Those lab results should give the prescribing physician evidence of the uncontrolled diabetes. Who is in charge of prescribing and monitoring his medications?
How long have you been with him?

Thank you so much for responding. I was not with him when he had his transplant. We are old childhood sweethearts. I have been in a long distance relationship with him for a year and a half. I know he is good about getting his labs done. My main concerns are I don’t think he realizes how important it is to monitor his diabetes. I have a hard time getting straight answers out of him. For example I may ask how was your reading this morning and his response is I took my insulin but didn’t check my level. I believe he is to check it 3 times a day. I don’t know if he is to take more insulin. Very confusing. I also think this may play a large part with his extreme fatigue. I’ve been after him to find a primary care physician. I don’t think he understands how vital that is. He doesn’t like to discuss his health a lot. I know if I was with him he would be feeling better due to the fact I would make sure he was following a regimen. He always brags about how healthy he always was. I told him if he was getting routine physicals all along he wouldn’t be in the position he is in. I worry constantly.

I forgot to mention his transplant team is the only set of Dr’s he sees.

@karenmarian2, It is obvious that you are a caring individual who wants the best for your boyfriend. First, I would like to say that he is doing the absolute best thing possible by being seen by his transplant team, taking his meds, and getting routine labs! The required routine labs are used to monitor the level of his immunosuppressant (anti rejection) medicine in his body., and also to show the transplant team about other health concerns like blood sugar/diabetes, iron, thyroid etc levels. Even though he doesn't currently have a PCP, he is being monitored. And I would like to think that his transplant team is giving him advice and directions for keeping the diabetes under control.
Karen, I have been married to my husband for 46 years. He was my caregiver during my transplant. Early on, he drove me crazy with reminding me to
take my meds or checking if I took them. He did it because he cares, but annoying anyway, like he was hovering over me.
Is it possible that your boyfriend feels like you are mothering him or don't trust him about complying with his health requirements?

I'm tagging fellow transplant caregivers like @gingerw @tasher3433 @jodeej who might offer some tips.

Karen, I rather like @rosemarya's suggestion about asking your boyfriend if he could review his care with you, specifically his diabetes care. It's obvious that you care about him and his health, but asking daily questions might be frustrating for both you and him. When I asked my dad too much or too often about his blood sugar levels, the less he told me. It was a catch-22.

How might your concerns be put at ease? What could he change in his communication with you? What might you change?

Hello @karenmarian2, let me also welcome you to Connect. And, thank you for your support of your boyfriend! Being a transplant recipient isn’t easy, obviously. And, it’s vital that we take extra great care of our health and eat well. In particular, it’s vital that we really do what is needed to address common health issues, including diabetes.

Our medications can compound these common diseases. After my transplant I did a lot of research about post transplant complications. I found my glucose was rising, even though I had a good diet and seldom ate refined sugar. Now, I avoid all refined sugar and white flour, etc. Here’s a blog I wrote that introduces some of the impacts that our immunosuppressants can have on our health and how healthy eating may help - https://connect.mayoclinic.org/blog/transplant/newsfeed-post/whats-on-my-plate-a-transplant-recipient-perspective/

As a transplant recipient, I also recognize the value of speaking with my team doctor and nutritionist about addressing these concerns. Perhaps your boyfriend can be persuaded to check in with his team about diabetes care.

@colleenyoung Thank you for asking me in to this conversation.

@karenmarian2 As others have mentioned, welcome to Mayo Clinic Connect. It's a difficult situation for you, seeing this is a long-distance relationship. I know his transplant team is his sole medical at this time, but he must have had a primary care doctor prior to transplant. Wonder what happened to them? Maybe he can ask them for a referral to a PCP if his old doctor is no longer in the picture.

Going gentle on your approach may get you answers without anger. By telling him you love him, letting him know that to understand his daily care will go a long ways in easing your mind. He probably would be care-compliant, or not, whether you were right there with him, or not. My husband is a kidney transplant recipient, and he is faithful about his medications [even saying he is grateful I remind him, most of the time!] but got into some less-than-stellar eating habits. It took a poor labwork result recently for him to understand he had to modify his ways. But I needed to let him make his own mind up, which was difficult for me.

Letting your boyfriend know and hopefully understand that you care deeply for him, and you want him around for a long, long time, he will understand the reasons you seem to "nag" him. Do you think he would feel less aggravated if he understood this? Any chance in the future you two would be in the same city?
Ginger

@karenmarian2 , It's been a couple of weeks, since we last spoke. I can understand how difficult this must be for you as you are at a distance from your boyfriend. Anyone of us would feel the same way!
How are you getting along with this worrying about him? Do you think he will discuss these issues with his transplant team next time he sees them?