Transplant anti-rejection medications. What's your advice?

Thanks for giving me that link. And yes, I did talk with the nutritionist, but it was mainly when I needed to gain weight. I was about 40 lbs under what I needed to be. But now I am 60-70 lbs OVER what I should be. Altogether, I have put on 100 lbs since I came out. Again, I did need to gain, but I can't seem to stop this. I was Celiac before the surgery, and am not now, so curbing my love for real bread is tough, lol. I will contact them today. I talked to my hubby last night about the Mayo diet, and he is cautiously on board. Thank you very much for your support.

@krsti, I have located a link to information about the Mayo Clinic Diet. I can understand your husband's hesitancy about considering a diet plan. However the Mayo Diet Plan is actually a plan/strategy for healthy lifestyle that offers sound nutritional information along with help[ful recipe modifications - and encourages/teaches good eating habits. In fact, your husband will learn (as did my husband) that it will benefit him, too!

I saw this and want to share it with you and with anyone else who is wondering what the Mayo Clinic Diet is all about. It was posted on the Mayo Clinic News Network on January 5, 2024
- Mayo Clinic Minute: Weight loss and willpower

https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-minute-weight-loss-and-willpower/
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I hope that you will gain some insight from this information.

Kristi, I am curious as to how you were celiac before the surgery, and am not now. It is something that i am not familiar with. Would you care to share what occurred to change this for you?

The liver transplant was the solution to the Celiac situation. Even though the internet tells you it does not happen that way, my Dr at the Mayo said it happens all the time. Amazing!

This is why I love this group, you all validate things I thought were my own quirks! We can gripe to our doctors and nurses but they just read about side effects where we all live side effects. I don't get up so much at night as I did when I was first transplanted but I notice how frequently I need to "go" after taking my evening meds. My husband and I typically watch TV in the evenings and I have him pause our shows every 40 mins to use the bathroom after taking my meds. I always thought it was just me but I guess not. I also find myself much more thirsty after taking meds and I wouldn't ever want to restrict my liquids.

I just found this "Connect" site tonight, and I have been learning so much, lol. I never thought to connect the getting-up-during-sleep to my Tacrolimus. I mean, I've had kids,and thought it was just part of aging. 🙄
I had a liver transplant 8 years and 2 months ago. I was able to dutch the Phoslo and Cellcept the first year. About 6 months post-transplant, I developed a microcellular ductopenic rejection, and received 5 doses of Thymol. I'm here to tell you the "'roid rage" is real! Because I had so many doses of steroids to manage the rejection, I developed steroid-induced diabetes. I finally got taken off Prednisone last week in order to help my blood sugar numbers. But Tacrolimus also raises blood sugar. I was on 4mg Tacro daily and 2mg of Sirolimus daily for over 8 years. Last week my Tacro was lowered 1mg and I'm now taking 4mg of Sirolimus daily. I love getting the medical monograph papers when I get my prescriptions, and Sirolimus is black-boxed. It also said, "Do not take Sirolimus if you've had a liver transplant ". It made me laugh, because I trust my medical team.
Apparently, my immune system is so robust that they really have to stomp it into submission!
I've was so terrified of covid in the beginning. I took 2 shots and 1 booster, but I'm not taking any more shots. I actually had covid last October. Had a headache day 1, nausea/vomiting day 2, nasal congestion day 3, and I lost my senses of smell/taste on day 4 which only lasted 4 days. That's it, no coughing or shortness of breath at all. I realize that since I don't often work outside the home I'm not exposed to a lot of people. I'm so very grateful to be alive!
Question: has anyone had to take Lisinopril for high blood pressure, and then have to stop it because of an allergy? I've never been allergic, or sensitive, to anything in the past. Except, now Lisinopril. My PCP told me to stop taking it 2 months ago because it would occasionally cause face and tongue swelling. And the coughing I thought was due to dust (I live in a rural area) was also due to a Lisinopril sensitivity. Who knew?
I apologize for the rambling, but this is my first experience with a transplant support group. Thank you.

I just found this "Connect" site tonight, and I have been learning so much, lol. I never thought to connect the getting-up-during-sleep to my Tacrolimus. I mean, I've had kids,and thought it was just part of aging. 🙄
I had a liver transplant 8 years and 2 months ago. I was able to dutch the Phoslo and Cellcept the first year. About 6 months post-transplant, I developed a microcellular ductopenic rejection, and received 5 doses of Thymol. I'm here to tell you the "'roid rage" is real! Because I had so many doses of steroids to manage the rejection, I developed steroid-induced diabetes. I finally got taken off Prednisone last week in order to help my blood sugar numbers. But Tacrolimus also raises blood sugar. I was on 4mg Tacro daily and 2mg of Sirolimus daily for over 8 years. Last week my Tacro was lowered 1mg and I'm now taking 4mg of Sirolimus daily. I love getting the medical monograph papers when I get my prescriptions, and Sirolimus is black-boxed. It also said, "Do not take Sirolimus if you've had a liver transplant ". It made me laugh, because I trust my medical team.
Apparently, my immune system is so robust that they really have to stomp it into submission!
I've was so terrified of covid in the beginning. I took 2 shots and 1 booster, but I'm not taking any more shots. I actually had covid last October. Had a headache day 1, nausea/vomiting day 2, nasal congestion day 3, and I lost my senses of smell/taste on day 4 which only lasted 4 days. That's it, no coughing or shortness of breath at all. I realize that since I don't often work outside the home I'm not exposed to a lot of people. I'm so very grateful to be alive!
Question: has anyone had to take Lisinopril for high blood pressure, and then have to stop it because of an allergy? I've never been allergic, or sensitive, to anything in the past. Except, now Lisinopril. My PCP told me to stop taking it 2 months ago because it would occasionally cause face and tongue swelling. And the coughing I thought was due to dust (I live in a rural area) was also due to a Lisinopril sensitivity. Who knew?
I apologize for the rambling, but this is my first experience with a transplant support group. Thank you.

Hi. My husband had the cough from Lisinopril. It is most common side effect. They took him off and his cough stopped. U r not alone.

The same thing happened to my husband. Thankfully, his kidney transplant cured all his blood pressure issues so he no longer needs blood pressure meds. But the cough from the lisinopril kept getting worse and worse until he had to go off it. The cough cleared up almost instantly.

@roxylulu22, This is fantastic! Thanks for sharing.
In addition to your words of hope, I invite you to share in this discussion:
- Snapshots of hope: Life on the other side of transplant.
https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/

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When was his transplant? How has life change for you since transplant?

@krsti, I always choose to believe my Mayo Transplant Team over and above anyone else! I'm happy that this was an option for you.
I can understand how you must be enjoying your new diet, and I feel quite certain that it is why you are now struggling to control your weight. I don't have celiac, but I remember how good everything tasted to me after my transplant. Plus there was no more nausea. I'll never forget the piece of buttered toast that I had for my first breakfast, and it was heavenly! Thanks for the memory:-)
Kristi, I had my transplant at the Rochester Mayo. Where did you get your transplant?