After transplant questions.

[Kayholio]

I'm sorry, I'm sure these questions have been asked numerous times, but I can't seem to find a thread with them in it.

So, there's talk about me starting the process for a transplant, i.e; picking a center, all that stuff. My questions aren't about the procedure itself, but the after procedure stuff. I've heard that you have to get fed through a pic line, is that true? I'm young(23) and I like to do things for myself, I don't want to have to get fed through a tube and whatnot. Also, how long after the surgery can I get up out of bed and start moving around and whatnot? I just want everything to go smoothly. Thanks in advance.

[Rerun]

You don't get "fed" through a pic line.  The pic line is so they don't come stab you with needles six times a day.  They have to monitor your blood for labs to make sure your new kidney is working.  You will have a catheter up your whoo hoo to drain urine.  They get you up right away to make you start moving. Dragging your IV pole and pee  You will have pain medicine through your pic line and any antibiotics needed. 

A transplant is not for wimps, but it is worth it on the otherside.   You will do fine.     

[KarenInWA]

Kayholio, I just went through this myself back in November. First off, there was NO feeding through a pic line! I started off with a liquid diet for breakfast (this was day after tx), graduated to a normal lunch, and had a turkey dinner with all the trimmings for dinner! (and yes, all in the same day - the day after surgery for me was Thanksgiving).  The first time I got out of bed (with help) was the next morning to get weighed. First few times you get out of bed, you will need help, but that is to be expected. They also will walk with you those first few times. Soon enough, you will be getting out of bed on your own, and going on walks on your own. I believe for me I started doing that 2 days after surgery, no later then that, anyway. I also took a shower the very next day, with help of course. My experience went way better than I expected. Now, granted, different centers may do things differently, but that was my experience. I am in the Seattle area.

And yes, what Rerun said about the pic line. What's nice about that is they don't poke your arm when they take your blood. What's annoying about it is it's in your neck, and the removal is more annoying than anything (you have to lie flat in bed for 30 minutes). Thankfully, pic line, catheter are all put in while you're under in la la land during surgery. The removals of both aren't bad, just annoying. The removal of the catheter is quick and painless.

KarenInWA

[Kayholio]

Thanks for the replies..how long do you have to have the catheter in you're..you know.. >.>

[KarenInWA]

Thanks for the replies..how long do you have to have the catheter in you're..you know.. >.>

My surgery was on a Wednesday, the catheter came out on Monday. I left the hospital on Monday. If I had left sooner then that, I would have gone home with the catheter. Kind of glad they kept me in til Monday...

KarenInWA

[Kayholio]

Thanks for the replies..how long do you have to have the catheter in you're..you know.. >.>

My surgery was on a Wednesday, the catheter came out on Monday. I left the hospital on Monday. If I had left sooner then that, I would have gone home with the catheter. Kind of glad they kept me in til Monday...

KarenInWA

Well, that's not as bad as I thought it would be. *sigh* This is a lot to take in, and like I said, I just want things to be smooth with everything. It's mostly the side effects of the anti-rejectory drugs that I'm concerned about.

[wj13us]

I was in the hospital for 4 weeks following my transplant.  But that was in the early 70's.....I hear they improved things since then.

Bill

[KarenInWA]

Side effects from the anti-reject meds can vary. I am on generic Prograff (tacrilimus) 2mg in the am, 1.5mg in the pm, Myfortic 360mg a day (started out at 720mg twice a day, has been cut down so much because I absorb it well), and prednisone 7.5mg a day. The main side effect for me was from the Myfortic - stomach cramps and diahrhea. I also had little to no appetite most of the time. Now that it has been cut down so much, I no longer suffer from those symptoms.

Prednisone hasn't been a big deal for me, but I know that is not the case for a lot of others. I had real high IV doses while in the hospital, 500mg, then 250mg, then 125mg, 75mg, then a one-time oral 50mg. After that, I was on 20mg for the first week or so, then reduced to 10mg for a month, now on 7.5mg, and soon, will be on 5mg. No moon face, increased appetite, increased facial hair, or weight gain for me.

Now, about that weight gain. They will pump you up with fluid while in surgery, so you *will* weigh more right after it. Do not be alarmed!!! This is to test your new kidney. Eventually, the weight *will* go down! At least, it did for me. Just keep in mind, that the initial weight gain IS normal!

KarenInWA

[Kayholio]

Side effects from the anti-reject meds can vary. I am on generic Prograff (tacrilimus) 2mg in the am, 1.5mg in the pm, Myfortic 360mg a day (started out at 720mg twice a day, has been cut down so much because I absorb it well), and prednisone 7.5mg a day. The main side effect for me was from the Myfortic - stomach cramps and diahrhea. I also had little to no appetite most of the time. Now that it has been cut down so much, I no longer suffer from those symptoms.

Prednisone hasn't been a big deal for me, but I know that is not the case for a lot of others. I had real high IV doses while in the hospital, 500mg, then 250mg, then 125mg, 75mg, then a one-time oral 50mg. After that, I was on 20mg for the first week or so, then reduced to 10mg for a month, now on 7.5mg, and soon, will be on 5mg. No moon face, increased appetite, increased facial hair, or weight gain for me.

Now, about that weight gain. They will pump you up with fluid while in surgery, so you *will* weigh more right after it. Do not be alarmed!!! This is to test your new kidney. Eventually, the weight *will* go down! At least, it did for me. Just keep in mind, that the initial weight gain IS normal!

KarenInWA

Now see, I was on Myfortic(which I'm assuming is the generic form of CellCept?) when I was 10, until I was 18 and I had no issues. It's mostly the increased risk of skin cancer and diabetes that I'm concerned with :/

[KarenInWA]

I can totally understand your concern, Kayholio. I have those same concerns myself. I did bring diabetes up to the dr's, because my mom is type 2 diabetic. I was told that with the low doses, that "shouldn't" be a problem. So far, my blood sugars has been well within the normal range, but, of course, I've only just begun with all of this.

As for skin cancer, yes, I will need to learn to be religious with the SPF! So far, it has not been a problem with all this wintery weather. But, still important to at least use SPF 30 on any exposed skin even in this weather. Fun.

KarenInWA

[Kayholio]

My grandmother had diabetes, though I'm not sure which type. I live in South Carolina, so it can get really hot here in the summer time, but I don't go outside that much..only to check the mail/take the garbage out and whenever we're going somewhere..but as long as I use sunscreen and whatnot, I should be ok.

[chris73]

Hello, After the first yr of tx for me i worried about everything that could go wrong after tx,i realized i had no control what happens after i do my part to keep my kidney..eat right, take my meds,sunscreen, exercise and keep all my Drs appointments.My pain was well managed while i was still in hospital,i think worst part when the removed the Foley catheter out of my wee wee after that seems like things went real smooth for me.look back on the procedure it was a piece of cake..I would worry about the whole hospital thing...would suggest putting all your attention getting everything done for the transplant process..Good luck with eveything!! Anymore questions? just ask even though it may be a repeat question..anything to rest your mind on the tx process..Chris

[RichardMEL]

Karen lives in a city with very few sunny days - even in summer - so no worries there re skin cancer!!!! *duck and cover* !!!!

Seriously though, everyone's experiences tend to be different. I had my damn catheter in for 9 or so days but really it wasn't as bad as it sounds. After all once it's in it's in and doesn't really hurt or anything. I had a nurse make up this nifty "carry strap" for it so I could walk around with the catheter bag not dragging all over the floor, and it made showers easier (yes men, you can imagine what I'm talking about!!!  ).

Speaking of walking - one  of your original questions was about getting out of bed etc - it isstrongly encouraged to get up and about ASAP after tx - usually the next day. Yes, the first few days with drains and lines can be a bit of a struggle to manipulate everything or keep hold of everything, when moving around but as stuff is taken out it's easier and easier. After a few days I was wandering the halls, making my own cups of tea, going and visiting my mates in dialysis, buying the newspaper etc. It was great !!!

I did have to allow for extra time to keep track of all the awesome emails of support from all the awesome IHD people who sent them to the hospital (the staff doing that thought I must eb some kind of celebrity or something as they brought in page after page of printouts! lol).

Yes, tx is scary but it totally beats the alternative, in my view!

[kellyt]

No feeding through a pic line for me.  I was given the same bland, yucky food all the other patients in the hospital were given.  I lived off salad, bread rolls and tea the entire week because everyrhing else they gave me was gross.