Wednesday, September 12, 2012

Health UpDATE!


Here are a few tidbits that I learned today at my Dr’s appointments…

My PFT’s are up from 94% to 100%... (2 weeks ago they dropped from 107% to 94%, a 13% decrease for me which alarmed the Drs causing this trip).
            The Drs. are fairly certain that the decrease was cause by infection and not total rejection. Since I have been treated once for a MILD chronic rejection, that damage is irreversible, but seems to be more stable.  During my Bronchoschopy on Friday they will determine if I have a lot of infection (meaning that is the probable cause and culprit) or if there is not much infection then they will take biopsies to see if there is some acute rejection.  If its acute rejection it is fairly treatable with Intravenous steroids, if it’s not acute rejection then they will discuss the how soon we need to do a different type of rejection treatment called photopheresis.  If its infection there will most definitely be IV antibiotics for treatment administered for two weeks and repeat of PFT’s every two weeks.
The polyps in my nose have grown back, with infection. Therefore I will be starting a nebulizer through a mask once a day and rotating antibiotics monthly to fight infection in my nose/trachea/lungs.
            I’m going to start and inhaled steroid to lower my prednisone dose (oral steroid) to reduce long term effects of high dose prednisone.
            The handheld Spirometer that I use daily at home to test my lung function is to determine if there is a large infection prevalent, rejection is determined by long term drop in my PFT.
            Increased exercise is a must to keep airways clear and open and increase the life of the new lungs.

Things are looking good. My new lungs are capable of 5 liters of air which is uncommon for my body size. Cystic Fibrosis increases your chest cavity size, and when the new lungs are inserted they can be larger (helps increase the odds of getting lungs).  My 94% refers to about 3.9L of Air while my 107% refers to about 4.5L of Air.  Directly after transplant (twice) I registered 5.5L of Air, while the average has been closer to 4.7L.  The 4L of air is 3 times as much air than I was getting when I was listed for transplant…

In conclusion, I feel amazing, I can do more than I have been able to in several years, I’m enjoying life and I have a long, long way to go before we have to reevaluate another transplant!! Thanks for all the Love, Support and Understanding over that last two years!!!

If you have any questions please ask!!! 

1 comment:

  1. Adam, I am so proud of all of your hard work, to make the very best of what has been given to you. I know, by living it with Kelly, it get hard at times, because you feel so good, that you just want to live & not have to do everything there is to do after transplant. But, it really is the only way to make sure you get the most out of your life. I love that you keep everyone updated, you are in my prayers all the time, enjoy every minute, (which I'm sure you do)
    Dorothy Johnston-Kelly Hiatt's mom)

    ReplyDelete