Sunday, July 14, 2013

"Not Being Sick Enough" Part 2

I didn't mean for this to have two parts.  While I was writing the first blog I thought of something I wanted to add and then when I finished typing my thought I couldn't remember what it was. 

I initially posted this blog on and I received a response which reminded me what I was going to say.

For those who may not know Nicole's story.  She was diagnosed 3 1/2 years ago with pulmonary arterial hypertension which in simple terms means the arteries in the lungs close up due to high pressure in the lungs.  There is no cure for this disease, it is progressive, and irreversible.  When Nicole was diagnosed she was in the severe stage which is the worst.  She does take a cocktail of three medications every day to try and stop the progression of the disease.  Two of these medications are oral one she takes three times a day and the other just once.  She also receives a continuous drug via an infusion pump subcutaneously (through the skin).  In addition to these medications she takes medications that combat the side effects of these PH drugs.  For instance, the continuous drug, Remodulin, has side effects of site pain when the site  needs to be moved (about every 5 weeks if it is a good location)  which last about 10 days so she takes a narcotic for this pain, she suffers from nausea and diarrhea and so she takes a prescription that helps with the nausea and over the counter Immodium AD to counteract the diarrhea. 

We were told from the beginning that the only "cure" was a double lung transplant.  This is another statement that I don't feel is correct.  Yes, it is a cure in the sense that she will not have PH anymore and would not have to use oxygen and would be able to breathe normal.   However, she would still have an "invisible illness" because she still would have to take medication everyday for the rest of her life to keep her from rejecting the organ(s) and those medications would include medications that treat the side effects of those medications.  She would still have to visit the doctor on a regular basis along with regular testing etc.  As the doctor once said "she is trading one problem for another". 

It's frustrating to know that at some point a transplant is inevitable but you still have to wait to even be considered, but I also know that the sickest should get the organs first and I also understand that the riskier the transplant the more it needs to be postponed to absolutely necessary. 

I would encourage everyone to please become organ donors as well as your loved ones.  It is the greatest gift that you can give.  For Nicole and those who will need transplants in the future this is their last hope. 

1 comment:

  1. Thank you fir sharing this. After experiencing just a smidge (two months) of not being sick enough (to figure out what my illness is that is) I can't imagine what you or Nicole experience on a daily basis. God knew what he was doing making you her Mom/Advocate !
    It is is so much work !
    Love, Inga
    P.s I am a organ doner !