Liver
Decreasing Meds and Labs: Its good, but scary.
August 7, 2023
in Liver
I am nearing my 4 month mark since LTP and I am down to just 1 mg of prograf daily ( .5 twice) and bactrum once a day. I was taken off cellcept mid-July. They are also just checking my blood bi-weekly.
I feel great and blood work, including liver and kidney functions are near perfect. However, I am a little apprehensive about the it all. Is this normal and am I stupid for being scared?
1 - 10 of 10 Replies
I think its pretty valid to experience some nervousness and anxiety around labwork, medication changes, etc. Its an adjustment but give yourself time to adapt and remind yourself that they wouldnt be doing this if they didnt feel you were ready!
Oleballcoach Hi, I am so excited for you, I cannot wait for the day to be off some of my meds. I unfortunately am almost 3 yrs LTP. I take 6mg prograf a day celcept 1000mg twice a day. I experienced an acute rejection 11/22. just grateful to be off prednisone, I was just recently diagnosed w/3b ckd. 4 months LTP to be on such little immunosuppressants is fabulous, I am so glad labs r stable.
It is a little nervous when they start decreasing but like fern22 they know what they r doing. The best thing is the labs will keep a good check on things that is how they caught my rejection.😊💚
Continue good health!!
PS Thanks for bringing this topic up.
Thanks to you and fern22 for you encouragement. I am very happy to be where I am just a little anxiety in my optimism. Melsamm, I am so sorry for your rejection. I am glad that they caught it, and I pray you continue on your road to recovery.
👍 thank you to.
Transplant Patient
I remember especially earlier on in my transplant journey every med adjustment felt really disorienting to me. Even the "positive" changes, like being able to decrease a certain med, felt really unstable to me. And I think a lot of that for me personally had to do with I'd followed a rigid system for so long, and I had an idea of what was going to keep me safe, and any change to that felt really destabilizing to my nervous system. I'd created this identity around being sick and my treatments, and I didn't realize how foundational that was to me until it started shifting. Even positive changes can feel disruptive if we don't have practice in handling them.
We've all been through something that's really hard, and traumatic, and we're all going to respond in very different ways. I do often remind myself my team is keeping a really close eye on me, they wouldn't put me in a situation where I wasn't ready. And finding little ways to support yourself, or having people to rely on, when the changes get to be a lot is so important.
Transplant Patient
@ole_ball_coach i am close to four months out as well, after my ld kidney transplant. I have mixed feelings about the decreasing monitoring: I am relieved to be less hooked to the hospital, less need to travel in, and less reminders of having been sick, but I also have less control of my values since we measure less often! On balance I like the freedom but totally understand your fear!
It is awesome you are doing so well. I always have mixed feelings about decreasing meds and appointments. It is scary. Over 17 years I have decreased, stopped, and added so many medications over the years. I still get concerned. Make sure to get your labs on time and listen to your body. Any concerns at all, discuss them right away with your team. 💗
Jeanmarie u are absolutely correct. I was not feeling quite right had my labs and sure enough I was in acute rejection.
I am sure when they start decreasing my meds I am going to be the same way again b-c they were decreasing my meds and that is when I went into rejection , started in 7/22 2 months later I was in rejection.
17 years, WOW. You and your tram must be doing something right. Thank you for the words of wisdom. I know that I am doing very well at this point in the process, but I remain unsure of my changes in my body. I truly do trust my team. God has my hand leading me throuigh this as well.
Melsamm I am so glad that your team found your rejection, and that you are on your way to recovery.
😊💚 yep! I hope at my October visit they will make some changes to my meds🤞🏻