Friday, August 1, 2008

Might be my last day in the tank

I have completed 9 oxygen treatments as of today with a total of 30 scheduled.

After 4 treatments my neurologist ordered a pulmonary function test (pft) because the technician said my lungs were wheezy. My neurologist tracked down my pulmonologist (whom I love and has since moved to Atlanta) and they discussed the results. My lung doc was not happy to hear that my lungs are slipping backwards. They decided to let me try the tank for the remainder of the week and then have another pft on Monday. If they have gotten any worse they are stopping the oxygen treatments and will start up cytoxan.

From what the doctors say there is such a thing as too much oxygen. And in my case all this O2 could possibly be aggravating my BOOP. My neurologist does not want to in any way cause damage to my lungs and I have to agree......lugging around an oxygen tank with my cane and foot drag is a recipe for disaster.

Maybe my lungs will pull through on Monday, maybe not, I am rather impartial. I have come to accept the fact that all these treatments have side effects - there is no free lunch. Hopefully we can find something that works on my neuro issues and doesn't harm any of my major organs.


So in the meantime I have been scouring the Internet for any information on radiation myelitis. There is just about nothing out there. I emailed the doctor I consulted with at NIH to see if he knew of any studies or doctors working on this - nope. I seriously do not know why I always end up in that small percentage of the population that gets crap like this, or my lung issues, liver issues, pregnant with cancer..........jeez! I just want to be the typical patient for once.

1 comment:

Carrie Reynolds said...

Hi Heather. Yeah to be cancer free but sucks to have the myelitis. I am a survivor of Hodgkin's Lymphoma which we discovered while I was pregnant. Did some ABVD while pregnant. The Hodgkin's was gone but it came back about 3 months later...Did more chemo...ICE and a clinical trial. Then did a autologous transplant. Then did radiation. I am now cancer free but have suffered from pulmonary toxicity and am now concerned about radiation myelitis. My doctors are not offering me any information about my growing numbness and weakness in the legs and I am getting very nervous. If you get a chance could you email me? You seem to have doctors that you like...at this point I am willing to travel quite a distance to see someone that could offer some answers...even if they aren't things I want to hear. If it makes you feel any better I live in 1-2% of patients as well!