What does your post transplant medicine routine look like? Everyone keeps telling me it's critical I stick to the routine, but I don't know what to expect. Is it once a day, twice, six times, ten times?!? What am I in for?
I’m at twice a day now at a year and a half out. It wasn’t very long post surgery I was at twice a day.
i’ve heard it can be hard to adapt to but I was in such a medication routine pre transplant it wasn’t hard to adjust. I do the bulk of my pills at 8:30 in the morning (transplant medications and supplements), which I have an alarm set on my phone to remind me. And then I have one transplant med now (used to be 3) I take at 8:30 in the evening and I have another alarm set for that one. I also lane my alarms (on iPhone) so when I look down to turn off my alarm it says what it’s for. They also have a different sound than my other alarms, and whenever I hear the sound I’ve come to associate it with meds. Which is great until I’m out in public and hear that song 😂
Twice a day now since transplant. It's obviously less intensive than my pre-transplant regimen of aerosols, vests, etc.
In the beginning I was super strict and regimented about my twice a day routine; for instance, must be every 12 hours, drink with a lot of water, pills were organized in their little pill boxes.
Now that I'm 11 years out, I'm less strict and don't beat myself if I miss a dose. I don't have the pill boxes anymore and if I don't have water, it's ok. But everything is still normal therapeutic wise so all good.
I take my meds four times a day I am a year and one month out from my transplant, I do use the week oill box that is broken down morning noon night and bed my night pills I take at 5 and my bed at 9pm.
I take medications 3 times a day. I use a pill organizer and set alarms on my phone and Apple Watch. I also have little pill baggies to take with me for when I won’t be home at medication time.
I only take meds once a day. I was on Cellcept, which is a twice a day medication, but then I got CMV from my donor kidney. It was too much suppression, so they took me off of it for life or they said the CMV would come back. Now I just have prednisone and envarsus. Envarsus is time released, so I take my meds at 7:30 in the morning every day.
At the beginning it was wild how many meds I was taking at all times of the day. I'm 3 1/2 years post and glad that it has slowed down.
Gosh…everyone seems to have it down real well. TServold it will get easier even if the number of pills are the same for you as time goes on. Don’t let it overwhelm you. At first I didn’t use a pill box so I could learn the meds but that is the hard way. Use a big pill box which has a place for morning, noon, dinner and bedtime. Since I take them twice a day I can fill the box up for 2 weeks (using a black line to indicate the first week from the second week). I use my alarm on my phone and sometimes I get mad cause it goes off and I don’t want to get up and take it but I do. If not, hit the snooze and throw something in the middle of the floor so you don’t forget! Taking meds are okay and well worth it. Follow your doctors recommendations (that sounds better than orders)! Good luck.
I agree that at first being organized and have everything planned for the week is a great idea. I am 10 years out of my second transplant, so I know if I forget something tonight I won’t reject. Just get back on the routine tomorrow. Things will happen, that you can’t help. If you are concerned contact your transplant team, that’s why they are there 😊
Twice daily immune suppressants as well as anti infective meds such as antibiotics, antivirals and anti fungals, as well as any blood pressure meds you may have been on (can hopefully be reduced soon after transplant). The anti invectives will be removed after three months but the immune suppressants are life long. There may be addl drugs over time since side effects may occur.
I definitely use a pill dispenser since I would not be able to take all drugs twice a day directly from the packaging. Makes it so much easier but I hate the weekly dispensing of drugs and having to think about refills (see my post).
I agree that if concerned about anything, contact transplant team. I was more concerned earlier in my transplant years but now my routine and trusting what I’m told makes things easier. I get upset at myself if I’m running late on my pills…that’s my job!
It is our job to keep the organ(s) we are blessed to have. Just a thought…if we are told to stop a medication and have no more in stock, can use pill identifier on the internet so we are sure to pull the right medication.
Being organized is so important so you do not miss or run out
Thank you everyone for your input. Thankfully, I am pretty organized by nature, and I am used to a medicine routine having been on insulin, and others, for 23+ years. You have all provided excellent tips, thank you!
I use the alarm on my phone to make sure I don’t get busy and forget my meds. I take 25 meds twice a day and 1 med mid day. That’s my regular meds and post Transplant meds. I take my meds in pouches if I’m not going to be home.
@TServold hi well the first 3-4 months it’s rough pills every 12 hours the mouth swash drops to prevent bacteria due to your medications and others depending on the patient and depending on how well you are responding on the treatment they’ll lower the dosage and will lower the appointments to see your nephrologist even when you see your nephrologist ones a year you’ll have to do blood test every month other thing is the pill tray that helps a lot and putting on the calendar all the time you’re supost to take pills it will remind you if its 10-2-6-10 hope this helps