My first transplant 6/20/06

[Rerun]

Jdat.  It is a big change to get a transplant.  Just take your time.  Getting that business credential is a good start.

[angieskidney]

so hummm .. yeah ... my anti rejection medication dosage keeps getting increased 

The residual amount of ciclosporine keeps getting lower and lower each time so my dosage keeps getting increased...

I need to ask what the reason is but I keep forgetting to ask ( I am starting to get hit with a serious case of ESRD forgetfullness again )....


On the other hand my creatinine level hasn't been a problem.

Cyclosporine is a drug that constantly needs monitoring and adjustment. Don't worry. If you want, you can research the drug by name.

[jdat]

so hummm .. yeah ... my anti rejection medication dosage keeps getting increased 

The residual amount of ciclosporine keeps getting lower and lower each time so my dosage keeps getting increased...

I need to ask what the reason is but I keep forgetting to ask ( I am starting to get hit with a serious case of ESRD forgetfullness again )....


On the other hand my creatinine level hasn't been a problem.

Cyclosporine is a drug that constantly needs monitoring and adjustment. Don't worry. If you want, you can research the drug by name.

Oh I know everything there is to know about the medication ( at least I think I do  ) but my understanding was that with time the dosage is supposed to be lowered. Me it is the complete opposite!
I am at higher doses than I have ever been 

There's also the issue that when you are first transplanted the medication levels are so high that you are at bigger risk of getting sick and such so technically I am even more at risk now than I was after the transplant 


ps: I realize there's a need to change doses constantly and it's been the case a lot.
I went from 125/150 progressively back to 225  . That's what I don't understand! What's happening with my body that makes the residual amount go down? ( the fact I gained weight? )

[angieskidney]

You'd have to ask the Nephrologist. But it is true, you are now MORE at risk for getting sick since your immune system is even MORE lowered.

[jdat]

Ever since being back in France I haven't quite come to grips with my singular concept of being kept alive to have no life.
Not able to get a job and all that entails due to the complications of this lovely nation of France which I personally never wanted to return to.

I am seriously wondering if I should try and make an effort to try and make it back to the United States.
Between foreign nationals social security offices abroad who aren't able to give me concrete answers and the notion that because this is now a pre-existing condition I may very well be shooting myself in the foot with health insurance in the USA.
What freaks me out the most is the 3 year rule for medication coverage by social security for transplanted people.....

Any hope? I can't say at this stage.
While I make my desire sound serious it's nothing more but a "last try" maybe but unfortunately I fear of feeling even more down due to the outcome when the final answer arrives.

I should perhaps discuss this matter with people in a similar situation ... I have yet to find some!
My understanding is that Angie is thinking of moving stateside ... should perhaps ask her directly or maybe she'll read this message directly 
Keep in mind I am a US citizen so that makes things a little easier for me but still 

[goofynina]

Good Luck to you Jdat, whatever you decide i hope it works the best for you    take care and keep us posted ok?  ok!    

[Rerun]

I would call Medicare and ask them if you would be covered when you move back. 
http://www.medicare.gov/

Go to their website.  They may have a phone number for those out of country.

[jdat]

I would call Medicare and ask them if you would be covered when you move back. 
http://www.medicare.gov/

Go to their website.  They may have a phone number for those out of country.

so you don't think I should bother with Foreign Nationals offices for Social Security?

I'll check with medicare and make us of my unlimited free international calls 

[anja]

Best of luck to you, jdat, wishing for the best outcome for you.     Think it is great that you are thinking of career paths that you like, and the suggestions of volunteering is great for you at this time.  Though it brings in no money, it may do much to further your feelings of usefulness and worth.  We all need to feel needed, we all need a support system, you are not alone.  Your situation today is much better than it was a year ago, right?  You have a working kidney, you have much to look forward to, just don't see that right now because of the mood thing.  The medication may be partially to blame for that, so give yourself time to adjust and find the good in the place you are at in your life. (I do not mean France...)   Best wishes, glad to hear from you again!

[coravh]

There's also the issue that when you are first transplanted the medication levels are so high that you are at bigger risk of getting sick and such so technically I am even more at risk now than I was after the transplant 


Jdat - I use Purell (hand sanitizer) and even during my first year, I never got sick. It works wonders if you use it frequently. I use it all the time:  after I use a bank machine, handle money, shake hands, etc.

Cora