Tuesday, January 24, 2012
OK it has been months since I have updated my blog ...mostly because I have been WAITING AND WAITING on doctors. After I got the results from the CT and Walking Test (which I posted under the previous post "Stomach and Liver and Lungs OH MY") I literally waited almost 6 weeks for the doctor who performed these tests to get back to me with what was next. She had mentioned doing a surgical biopsy but NEVER heard anything from her office about scheduling one. I even called and tried to find out what was going on but she never bothered to return a phone call.
This was RIDICULOUS so it was decided to forget her and see a new Pulmonologist. A very close friend of the family referred me to Dr J David Dortin. They got me in to see him rather fast and he was AMAZING. Showed up at the appointment and the day before he had spent around an hour doing research on my case - going through my record - and writing notes. When I met him for the first time I didn't have to spend time going over my past history; he already knew it! I was incredibly impressed by this - as no other doctor has ever done this before that I have seen. He spent an hour explaining things and going over what he wanted to do. Instead of repeating tests that previous doctors kept doing he ordered two tests I'd never had before.
One test was a lung test in nuclear medicine where I had to inhale this gas called Xenon through a mask while a machine imaged my lungs from every angle - 360 degrees! The machine then sucked out the gas from my lungs over 6 minutes so there was no residue (though I do have to carry a piece of paper in my wallet for 3 months because I can set off metal detectors lol - oh the things the body gets subjected to). After the gas was removed they inject a contrast directly in a vein called TC99-M and they took more images.
The second test I had that day was called a nuclear CT - it is exactly like a regular CT scan just using different contrast.
I returned to Dr Dortin today for the results. Well the results showed that the growths in my lungs had gotten worse. A thorough comparison was performed and the inflammation area in my right lung was noticeably worse. Since my body is so fragile right now do to my liver - a surgical biopsy can be somewhat dangerous. Dr Dortin is sending me to a specialist to do what is called an invasive bronchoscopy. I had a regular bronchoscopy done in November, 2011 and it was inconclusive. This hopefully will give some definitive answers w/o having to put my body through a surgical procedure. When I had my teeth extracted 3 weeks ago two of the sites didn't clot/stop bleeding for 24hrs - it would be a bad idea to do something more invasive right now.
I should have the date of the invasive bronch scheduled by the end of this week. Dr Dortin said if I had not heard anything from the specialist to call him, and he would personally call and have it taken care of! I LOVE THIS DOCTOR!!!
In the mean time I am still on oxygen 24/7 and waiting .... ALSO until it is resolved exactly what is going on in my lungs there is no way the transplant team will even consider a transplant. Since my immune system will be compromised after the transplant there is a potential that what is in my lungs could become fatal with an extremely compromised immune system. I am just glad that they are FINALLY being very proactive and not sitting on their asses.
Well that is what has been going on .... I want to thank everyone who is following my blog and takes the time to read it! I hope you are all well - and 2012 is treating you right.
Saturday, January 21, 2012
UPDATE: I decided to postpone the post. I see my doctor on Tuesday and I will have test results. I figured it makes sense to post then instead of posting today - when I will have more answers on Tuesday!
This is lame ...but I promise to write a post this weekend!!!! So here is a post promising a post haha =P