Tag Archive | Prograf

Breathing. . .It’s A Good Thing!

When I first started this blog I mentioned in my profile that I was a double lung transplant recipient.  That’s true!  I have been breathing with new lungs for just over 6 years now.

It’s hard to believe that 7 years ago I was dying.  I was on oxygen 24/7. Living in those days was really not living, it was existing the best way I could.  I was attached to an oxygen concentrator ~ that is a machine that manufacturers oxygen from room air and pumps it through the concentrator to either my tubing and lungs or to my portable oxygen tank so I could leave the house.  This way I could drive, go to pulmonary rehab classes, shopping, etc.  At least I wasn’t completely homebound.  The tubing that attached to the concentrator itself was 50 ft. long and enabled me to move through the house, from the 2nd floor to the basement.  I joked to my family and friends that I had a new “leash on life”, literally!

Living from day to day was difficult.  It took so much energy to just go upstairs to go to the bathroom and taking a shower ~ forget it!!!  I had to wear my oxygen in the shower and move slowly.  I don’t think the average person realizes how much energy it takes to take a shower. . .I was very shocked.

I was suffering from emphysema with an asthma component and my lungs by the time of transplant were only functioning at 20%.  The diagnosis came at a young age in my opinion, I was only 48.

As time goes by I will have much to say about this experience which continues to this day.  Just because I had a transplant does not mean that I no longer have to look after myself, on the contrary, there are many things I have to do in order to stay as healthy as I can.

At the beginning, right after transplant and after I got home (I was home 6 weeks after transplant) I had to come back to the hospital for bloodwork.  This bloodwork was done to keep a check on my “levels”.  Taking the anti-rejection medication Prograf, my Prograf level must stay between 8 – 10, if it goes too high they cut my Prograf dose, if too low they add more.  Every other month I had to have a bronchoscopy to check for infections, rejection and MRSA which I happened to get in my lungs while a patient, proably in ICU.  If they found the MRSA was active I had to have a PICC line installed so I could go home on IV antibotics.  This happened about 6 times over  the first 2 years post-transplant.

I must say how very happy I was and still am to be able to breathe without assistance and to be able to chase my 3 yr old grandson around the dining room table. . .who can measure that delight???

I can virtually walk, talk and chew gum all at the same time!!!  hahaha  BUT, to get serious for a while, I hope that if you are smoking that you will find a way to quit.  I know, I know, I heard it too from so many people but I just wasn’t ready or did not want to just because someone else said I should.  I’m like that.  Tell me to do one thing and I’ll turn around and do the opposite just because.  I didn’t want to quit, I liked smoking too much, but when I couldn’t breathe it became even tougher to quit. . .figure that?

I will never forget my lung dr’s comment about 2 or 3 years before transplant, “Sandy we’ve done everything we can for you.  We’ve maxed you out on your meds, that’s all we have for you.  I believe that if you don’t have a transplant you won’t live to see 60”.  I was in my early 50’s when he said that.  He explained that I wasn’t quite sick enough to consider or work toward transplant but that he would let me know.  How very strange to hear that you won’t live beyond the next decade.  I didn’t cry, I just felt weird. . .I can’t even explain it.  Perhaps I was just numb to the info.

I got the call at the end of 2004, I should contact UPMC Presbyterian about an evaluation for a lung transplant. . .

to be continued. . .

(Please visit my new blog www.breathingitsagoodthing.wordpress.com which is new as of today, 1/16/12 – will be offering more information on Lung Transplantation)