HANK...I have a question.

[robin]

Hank...I have a question for an experienced recipient. Does the prograf make your tongue burn like you have just eaten about 1000 habanerro (spelling?) peppers? Between the prograf headaches, tremors (bad enough I can't videotape and my writing looks like a 5 year olds) and stomach upsets...I have to admit...this tongue thing is the worst. Seriously, I have thought I'd rather have my tongue removed than to deal with this constant annoyance. My teeth also hurt but it's not like a tooth ache...more like I have gritted them so hard...they ache. Does this make sense and does it get better? I was NOT prepared for these side effects. Treatment was much easier for me than this. I'll quit my belly-aching before this gets moved to the rant  . Keep your spirits high...robin 

[RedRodeo]

Robin
    Several wks into tx my tongue was on fire. It was aweful couldn't eat, just constant pain. Missy suggested using Carafate suspension. Next day I went to my primary care md. He never heard of that but was willing to try. And it worked very quickly.
Its a check drug and maybe worth a try.
Red

[hanklive39]

Hi Robin!

I'm not going to ask how you are feeling because you've already answered that question profoundly!!! Just kidding

Anywho, Hmmm, it reads as if you may have some thrush going on inside the mouth if your tongue is burning like you mentioned but then again, I'm no Doctor or nurse so, I'd have the tongue checked out by either transplant or your PCP... There is that possibility because of the high amount of anti-rejection drugs you're on which is causing your immune response to be weakened and therefore, enabling the "Thrush" (if that's what it is???) to "blossom" on your tongue...

In two or three months, they should be weening you off the steroids, and hopefully lowering your FK (Prograf) dosage so hang in there girl I know you're going through the roughest part of the whole transplant process so, don't worry about "belly aching or ranting" dear I'll  always be here to answer if I can, any questions that you may have regarding what you're experiencing

It will get better!!! The only problem is that it'll get better when it wants to get better and unfortunately, not when one wants it to get better... That is the sad fact of reality which is kind of a drag - so to speak

Your tooth pains will eventually subside once they start to ween you off some of the meds...It's caused by the tremors which is a side effect of either the combination of the steroids, and the FK or one or another What I did was to purchase seven  sport mouth guards... One for each day of the week so when my teeth started to grind, I would have the mouth guard in between them, and they helped tremendously!!! The six other mouth guards were kept in mouthwash until it was time ot use them and I washed them in the dishwasher weekly.

I wish there was more that I could do to help relieve the suffering because, I know that you're in fact going through an awful period in the transplant process.
I will say this... there is light at the other end of the tunnel Robin. The trouble is that the tunnel is a seemingly long one!!! Just keep hanging on to the concept and inevitable fact that things will get better!!! Okay, maybe not the fact (bad choice of words) but, the concept of hope that "this too shall pass."

Btw, do you have any of that "Thrush Juice" medicine they gave to to take in tablespoons leftover from the first few months after your transplant? If you do. start "swishing" it around inside of your mouth, and maybe it will bring you some relief until you can contact one of the docs so you can get the prescription refilled or better yet, does the bottle have any refills leftover?? I'm here for you Robin!!! I hope this will help somewhat. 
Try your best to keep your spirits high as you can for now also my friend!

Respectfully,
Henry

[robin]

Hi Hank...this has bothered me since the beginning of this weird transplant journey. Even when I was on Nystatin (the first three months) and I've been off it for a month. They are also weaning my steroids (down to 10 mg daily from 40mg). My tongue appears fine but it bothers me like something I don't know how to describe. I did ask about decreasing the prograf and they said NO. I mean, I have had NO sign of rejection, am down to only one blood pressure pill daily, got my sugar under control...I'm like a perfect recipient, so far as problems they need to deal with. I'll keep listening to you that this will get better but I really wish I had prepared myself for these sides. I figured treatment was pretty managable for me so I could handle whatever these meds could throw at me. Little did I know. Thanks for listening because my TP coordinator seems to have her head up her butt and tends to ignore me whend I say things and my doctor says...the neurotoxic sides are why I DON'T want you to drive. We know I WANT to drive. I'm really glad to have you to come to, being as you are an old TP pro here.

Thanks for the suggestion Red, I did try carafate (had a prescription from pre-transplant). It is soothing but doesn't really change the sides of these meds. I even tried salt water swishes and lidocaine swish and spit. EEEEEEKKKK....excuse me for screaming.

Keep your spirits high...robin   

[hanklive39]

Hi Robin!

Can I make a suggestion with regards to the insatiable desire to operate a motor vehicle???
To H*** with what the transplant doc says about the neurotoxicity!!! Go to an area with your hubby where there's practically no traffic like a huge parking lot or something to that effect... Let him give you the wheel so to speak, and ENJOY!!!!!

That's what I did three months post transplant!!! I waited for six months to pass by before I did my first "solo" runs which eventually led to becoming bi-weekly road trips to NYC from Pittsburgh, to multi-state jaunts into this great land of ours!!!

I agree with you wholeheartedly that the notion of not being able to escape from the confines of ones residence in order to remember what the rest of the world looks like can leave you with a sense of feeling enslaved, trapped, isolated, held back
 
However, here's another thing to look foward to... The feeling of FREEDOM!!! Freedom to come and go when you choose!!!!! It will happen soon enough Robin!!! In the mean time start practicing with your Husband or grandchild or daughter if they're old enough to drive - that is Just don't let the Doc's find out until you can confidently go "solo" The feeling of having the wind go through your hair while going sixty -plus miles per hour will soon be something that you can look foward to even if it will cost more than ever to "fill er up'... Heck, I'd gladly pay extra for that sense of FREEDOM!!!

Respectfully,
Hank

P.S. Pardon the "Six degrees of separation" photo but in this case, I believe it's appropriate

[Squeaker1]

Robin,

I am so freaking thankful that you have Hank to talk to.  Nothing better then to talk about things with someone that has gone through what all you are dealing with.  I know that the drs and therapists are "trained" for this but nothing better then the real experiernce.  Hank is far enough ahead of you, that he is able to give you all of the needed advice that you can have.  I have been so inspired by his story, from the beginning to now.  It really should lift your spirits sweetie, to see that in a short while, you are going to be doing as well as our Hank.  Right???

Hank, I really like the six degrees of separation, pic.  I find it quite fasinating.

Hugs, Squeak