Post Transplant Regimen - It does get better, RIGHT!?!?

[smcd23]

Holy cow, I am exhausted and completely overwhelmed. Tony came home today with his new kidney, and with a whole new list of stuff we need to do. 

We have over a dozen meds - Prograf and CelCept which I expected. Then a blood thinner injection, oral blood thinner, 3 blood pressure meds, tums, calcitriol, 2 vitamins, Valcyte, Bactrim, Nexium, pain med, mouth rinse and maybe 1 or 2 I can't recall from memory. He is literally taking one medicine or another at midnight, 3am, 6am, 8am, 9am, noon, 3pm, 4pm, 5pm, 6pm, 8pm and 9pm. I must have had a bewildered look on my face when she gave me the medication card, because the coordinator left and came back with several that broke it down by time for me. Someone please, PLEASE tell me this gets better?! I know he has 1 or 2 extra meds for his calcium due to the parathyroidectomy he had a week ago, but I swear this list is way longer than the one they gave us previously telling us what to expect.

And he is peeing, a LOT. Which I know is awesome and we are keeping track of input/output, but he is up every 1.5 - 2 hours to pee. He still has a stint from the new kidney to the bladder because they don't want him to put too much pressure on his bladder right away since he wasn't peeing for awhile before transplant, but good God, the man can't catch a bit of sleep. I am hoping this goes away a little when they take the stint out. They had urology do a test on him to see if he still had reflux and to see if his bladder was still working right, and during the test they put a cath in and filled his bladder then he had to pee while they measured the pressure and output. At that time his bladder held close 600ml before he said he had to pee. Those who are post tx - does this frequent urination thing go away with time? Or even if the time between trips to the bathroom increased so he could get some decent sleep, that would be awesome.

We go back for our first follow up on Friday... I hope they don't add more meds (I would be fine with them stopping some) because I've already forked over a small fortune and I think I will go bankrupt if I have to do this every month. We can't get any copay cards because I have health insurance through my employer the Federal Government, and you can't use copay cards with Federal insurance. The social worker said she'd get us some gas cards because it's 84 miles each way to the hospital (and I'm saving receipts for tax time!) which will help a little, but damn!!

Oh, and they gave me a note to stay home the rest of the week. I had planned on going back to work tomorrow because I didn't think so much would need to happen during the day. I figured he'd have one dose of meds during the day, maybe 2 but not the 5 he would have to take between the time I leave for work and the time I get home. I really don't want to take any extra time off because I have none and we need the $, but goodness, this is a lot to adjust to!

[Chris]

First, that med schedule does not seem right for home use. He shouldn't have to be getting up to take meds in the middle of the night so that his body can rest and recover. I would definitely ask about that. See if you can take more meds together or 30 min apart.
 
Yes it does get better, medications will dwindle down, but different ones maybe added over the years. Some of those listed are temporary meds.
 
I am like Tony after each time I am discharged from the hospital. The IV drip wants to get out along with what I have taken in. It will get better over time also because the bladder needs to stretch since it has shrunken a little due to kidney failure.
 
 

[jbeany]

It gets better, really!  His bladder will stretch and accustom itself to the feeling of pressure, so he doesn't pop up like a jack in the box all night long.  I sleep soundly a lovely 9 hours straight now.  The meds will level out, too.  I would call and demand they do something about the crazy scheduling though.  That's insane!  Some of that must be able to be taken at the same time.

[lainiepop]

I'm 3 wKs post transplant  & take 9 diff meds, 2 will stop after 6mths. I take them all in the morning then one set OF rejection drugs at dinner time  & another before bed. Not too complicated, I came home with all of these. I am weeing about every 3 to 3 and half hrs now  & twice at night, doable, but was tired this morning.

[RichardMEL]

YES! It really does get better.

Remember he got his transplant less than a week ago - I mean that he is home is incredible to me (but then again I spent 10 days in the hospital). All that stuff like the thinners and mouth washes and all that are to stabalise him and/or prevent infections at this absolutely critical time (eg: bactrim, the mouth wash etc). As the kidney settles in the meds will be altered and a lot removed. Some like Valcyte and Bactim he will have for 3-6 months, but others may well be taken away soon - I would imagine the tums, calcitricol etc shouldn't be needed as his labs come into line.

It is overwhealming but it's still so new (I'm also surprised they're giving him a few days off without labs or a clinic? I had daily clinic for a month post-tx - but I know some units are different). I imagine you might see some real variation in meds and doses initially then things being removed as he settles.

So hold on to the ride, enjoy the pee (you know what I mean!!!) and prepare for a more normal life!!!!

 

[willowtreewren]

Breathe, breathe, breathe.

It DOES get better, just as others have said. Now that Carl is 16 (almost 17) months post TX, the med schedule of 2x/day is just part of his routine. We had to fork over lots of $$$$ in the beginning, but now after our (high) yearly deductible everything is covered. There will be fewer meds over time, too.

 

Aleta

[smcd23]

Chris - the med schedule is nuts because he is on K-Phos and Tums for calcium and they have to be taken 3 hours apart, and the Tums can't be taken with food. So that's the middle of the night stuff. 2 of the blood pressure meds are 3x a day so those are at 8, 4 and midnight. And then the main drugs like the anti rejection stuff is at 8 and 8. As time goes on, like when the Tums and K-Phos are gone I think we will try to move everything to 7 3 and 7 but we are following what they sent us home with.

It's not as bad as I thought it was going to be today, but we haven't had the VNA come by yet. His BP is high still but they upped 2 of the meds that he takes later today and tomorrow and they may give him different ones when we go back on Friday.

I think they don't have us doing daily labs because he's been stable on the rejection front since he came out of surgery. The only thing they have to adjust is the blood chemistry stuff - calcium, potassium etc. They said he met all their requirements for discharge - stable, urinating on own, moving about on own, eating solids because he was apprehensive about doing all of this at home, too. Our facilities schedule is clinic on Tues and Fri. Our old facility was only 2x a week too.

I am going to go take a nap until his noon meds. *yawn* it's been exhausting, physically and emotionally. Then I am going to get his meds together for our trip up there on Friday. I have no idea how long the labs are, so I am thinking I should pack all meds up to dinnertime? I have no idea. It's a 1.5 hour drive so I think we will be gone half the day, if not longer.

[lainiepop]

 I'm 3 wks post transplant  & going twice a WeeK to clinic too, had daily bloods When in hospital. this is standard in the uk, then goes to once a Week etc. those travelling further to clinic were told to bring an overnight bag just in Case. I went back in hospital Last week cause had an infection, bit rubbish !

[Chris]

If you sign up on the prografs website of transplant living you will get a large 7 day 4 compartment pill box along with other things, CellCept doesn't offer as much info and send you a portable CD player. Trying to think of who else sent me pill boxes, but I use one by Timex that also has an alarm in either voice announcements or beeps that was given to me at an IHD meet.

[bleija]

just signe up for for prograf, saw a pic of the box, about how long do u remember did it take for them to get it to you...i am scheduled for my transplant in less than 3 weeks, 20 days... i still cant beleive its getting this close  its kinda surreal

[olivia]

Congratulations on a successful transplant!

And so the rollercoaster ride has started.
It does get better, less meds, less apts. But it takes a while to get better.
The ups and downs will probably always be there, as we find the new normal.

Good luck to both of you.
Olivia

[willowtreewren]

smcd23,

You may not have the option of changing the time for your meds. Carl takes his at 9:00 and 9:00 because when he has his transplant clinics, he goes in at 8:00 AM for the blood draw. They want to see what his levels are at the end of the time frame.

 

Aleta

[Poppylicious]

Those damn pills!

Blokey takes hundreds a day ... HUNDREDS!!!  Well, I may be tweaking the truth a little there, but it feels and looks like it's hundreds.  However, he does (now) only take them twice a day (9.30am and 9.30pm).  Every other Friday night he sits in front of the tellybox with his two big one-week pill boxes and a box-mountain of pills and lovingly fills each morning and evening section up - it takes him about an hour and we have at least one little panic because he thinks he's run out of something when he hasn't.  If you asked me what he takes I wouldn't have a clue, but he has it lodged tightly in his memory. Medication is his baby and I try to steer clear of it, except to pass him a box of CellCept or Advagraf or whateverelseitishetakes.

But definitely get at least two big seven-day pill boxes.

It will get better!

*huggles*

[jeannea]

Everything feels overwhelming at first. There's almost a bit of being in shock at this big change. It does get easier over time. I promise. Although 2 mos later I'm still surprised when I have to pee in the middle of the night.

[smcd23]

Thanks! We have the Prograf box. They gave it to us at discharge. I bought a nicer, east to open one at the drug store. I am going to look for the Timex one online because I think that will be helpful when I go back to work. Otherwise I'll be calling 4x a day and flipping out and rushing home if he doesn't answer to make sure he took everything and is okay. I just guess I was delusional and thought things would be easier post transplant. But now instead of "nagging" about setting up his PD, I've turned I to the clock and pill nazi. 

[Chris]

just signe up for for prograf, saw a pic of the box, about how long do u remember did it take for them to get it to you...i am scheduled for my transplant in less than 3 weeks, 20 days... i still cant beleive its getting this close  its kinda surreal

About 4 to 6 weeks.
 
 

[Chris]

just signe up for for prograf, saw a pic of the box, about how long do u remember did it take for them to get it to you...i am scheduled for my transplant in less than 3 weeks, 20 days... i still cant beleive its getting this close  its kinda surreal

About 4 to 6 weeks.


 

Thanks! We have the Prograf box. They gave it to us at discharge. I bought a nicer, east to open one at the drug store. I am going to look for the Timex one online because I think that will be helpful when I go back to work. Otherwise I'll be calling 4x a day and flipping out and rushing home if he doesn't answer to make sure he took everything and is okay. I just guess I was delusional and thought things would be easier post transplant. But now instead of "nagging" about setting up his PD, I've turned I to the clock and pill nazi. 

Walgreens if you have that nearby is were they sell it here, but also know of a mail order place.
 
Another option is to use a cell phone or a 4 alarm watch. I use my iPhone also as remionders when I am out and have a talking watch. The phone works best in noisy areas because it vibrates since sometimes you can not hear the phone (depends on ring volume level to) Some pharmacies will send text message reminders to take meds also, then there are smartphone apps,(I have a few).

[smcd23]

I downloaded the drugs.com pill reminder for my iPhone but since Tony doesn't have an iPhone or android yet I am going to download it to the iPad because that's home with him all day, and the reminder will work even if the program is not open I'm sure he will get mad when the notification interrupts his Angry Birds game. But when he gets we enough to go to work he we will need some other system.

Tonight setting up the overnight pills (which I taped in little baggies from the shelf above the toilet with the med name and time on them so he will see them when he gets up for the bathroom) wasn't as bad, and neither was planning the pills for Friday to take with us to his appt. I am starting to figure out what and when so that's good. He knows too I think because he asked at noon why he has 2 pink gelcaps (bp med) and not one like before, and I told him they upped his dose of that by phone today.

But then the visiting nurse came and now I have to flush and put Heprin in his pic line once a day, too. Ugh.

[MooseMom]

If I ever get a transplant, I think I'm going to need a wife!  Seriously, I can't imagine my husband managing my tx aftercare.  I've been taking 30 pills a day for 8 years now, and he hasn't a clue, and I certainly don't expect that to change should I get a new kidney.

Do most people who have a tx need someone to sort out their meds like you're having to do for Tony?  Seriously, I'm starting to get a bit worried.  I really don't want my husband to get this stressed, you know?  I don't want to have to ask him to tape up little baggies over the toilet!  LOL!

[smcd23]

MooseMom- no, I don't think you will need a wife. Tony is a bit more complicated because he had the parathyroid surgery last Monday and needs supplements for that every 3 hours. And has the clotting issue. And he is tired from being up peeing so much and is super sensitive to pain meds that he was/is too groggy to keep track himself. I think once things settle a bit and he's off the supplement type meds he will be okay. Then it would really just be meds 3 to 4 times/day which he can do so long as its planned out for him. I'd be home for 2-3 of the doses anyway. If you've been on that many meds you will do fine. Tony used to take 4 in the am and 2 in the pm and had 1or 2 that were as needed (sleeping pill and pain pill for arthritis flare ups) And if you do need a wife I'll come help, by then I'll be an old pro at this  The only thing he technically needs help with are the injections and flushing his pic line BUT both of those things he *could* do himself if he had to - he just would have to use his stomach only for the shots (whereas he prefers the fatty area on the back of this arm) and he'd need an extension on the pic line to do it himself.

Our tx team said he needed me home this week I think more to help him get around but he's doing just fine, just slower moving. It's been near 100 today and will be tomorrow and 90 on Friday so I'm sort of glad I'm here. I wouldn't want him taking the dog out in that heat. He doesn't have to walk him but I think just standing in that heat would be a lot.

[noahvale]

^

[smcd23]

When we had that meeting per-transplant I said I'd be available to drive him, not realizing he needs 1 on 1 care for the first week. I dont recall it the last time but then again he only left with an incision to take care of and not a kidney, too. I was home alone caring for myself 3 days later (I had donated the first time so I was cut up, too) and I think the 2nd week he stayed with me in my apartment so we had each other for company.

I wish he has the option of staying in a halfway house closer. We're 1.5 hours away so the 2x a week check ups are not just time consuming but expensive. Good thing gas prices seem to be going down!

[Chris]

MooseMom, you'll be fine.
When I was discharged I had the option of staying at RIC nearby for a week or 2, or go home and have a home health nurse comeby everyday to do certain infusions and check up on me twice a day then once a day. I had to do my own heparin and saline injections into my line. They give you enough supplies and was told to prefill the syringes for a week, which was easy and was just part of setting up my meds for the week. My center knew I would not have anyone at home during the day through the week too. Doing things on my own tho is just something I am use to too even when not feelin the best.

[noahvale]

^

[smcd23]

No they don't, their only hostel is for the families of children in the children's hospital there. The social worker said shed try to get us some gas cards, and they do give meal vouchers on clinic days at least.  But I just wish he could have stayed an extra day or two... I get nervous so easily. He's been peeing every 1.5 hours but he just went 4 or 5 without peeing and I'm freaking out. His input was less than his output by a few hundred ml so maybe output is slowing down now that all the IV fluids have worked their way out?? It's silly things like this that make me worry and wish he was still up there because I just dont know and I'm so paranoid!