April Fools in the hospital

[jeannea]

This must be what passes for April Fools Day in the hospital. Yesterday they said I could go home today and today they said Nope! My Prograf levels still aren't right after my transplant so here I sit. I know they're being cautious after the PRES 3 years ago. But I want to go home to my own comfy quiet place. Where no one has any needles.

Help wish my levels up to the right place please!

[boswife]

Aww, I wish AND

[cassandra]

more wishes from me, and I'll ask my dad for prayers honey.

keep strong, and love Cas

[Sax-O-Trix]

What's "PRES"?  Being in the hospital sucks anytime, sorry to hear you are there:(

[jeannea]

PRES is what happens when Prograf levels get way high. I had seizures, was on a ventilator, had encephalitis, almost died. Posterior Reversible Encephalopathy Syndrome. It's buried in the labeling of Prograf but no one tells you about it. But when I had it I had a LOT of problems going on. It wasn't as simple as taking too much.

[Sax-O-Trix]

Program/Tacro can be deadly...  I hadn't heard of PRES.  I hope everything works out for you.  What we go through!

  I ended up with TTP/HUS two days after my transplant because of Tacro (Prograf).   I could have died.  Basically, your red blood cells split in half and can no longer carry oxygen.  Lucky for me, one of the doctors caught it through the extensive blood work that one is subjected to after a teansplant.  After emergency and then a month of Plasmapherisis and blood transfusions, I lived to tell about it.    Unfortunately, HUS can recur once you've had it and it did damage the new kidney .  Scary crap.

P.S.  I was switched to Gengraf (Cyclosporine) much to the dismay of the transplant team.  I also take Mycrophenolate (Cellcept) and Prednisone (much to my dismay!).

[jeannea]

Thanks for all the best wishes. I came home yesterday. My transplant is a week old now. We're watching the levels closely. I am so relieved to be home. There's no place like home!

[SteveK87]

Thanks for all the best wishes. I came home yesterday. My transplant is a week old now. We're watching the levels closely. I am so relieved to be home. There's no place like home!

 

Glad to hear you're doing well.

[Poppylicious]

Glad you're home; you must be relieved to be there!  Hope all your levels get themselves sorted. 

*huggles*

[Whamo]

Strange things happen in hospitals.  Once my wife answered a "red alert" call from a blood pressure monitor.   Some fool was having sex in his or her hospital bed with their friend, setting off alarms, and almost killing themselves.

[Rerun]

Jeannea, how goes it?  We need a report.

 

[jeannea]

I've been home a week. Had a great Easter with family although I couldn't go to church because of the crowd. Last week my Prograf level was messed up. It got all the way to 31 which is bad. I stopped it for about a day and a half and got blood tests every day for 3 days. Now it's at 10 which is ok.

I went to clinic this morning. My wound is still open but healing. My mom changes the dressing for me. I can sleep in bed - yay! - and shower with a little help.

I had a big milkshake the other day with no binder! So life is good.

[WishIKnew]

Just saw this about the high prograf - I just got a call saying mine is 30.  They are going to hold it for tonight and cut it bak starting tomorrow.  Glad to hear yours got evened out with no major problems.  The possibilities are terrifying!

 

[jeannea]

The possibilities are terrifying and have happened to me. If yours is that high have someone keep an eye on you. If you start having any mental changes - confusion, trouble making decisions - call your coordinator right away. Don't wait for the seizures to start. But if you're not taking it for a day or two you should be ok.