From Jim Gilliam's blog archives
I need a lung

September 6, 2005 8:15 PM

My lungs are stuck to my chest wall -- what the surgeon described as "cement". My doctor explained it like this: if my lungs are a ballon and my chest is a box.. the ballon is stuck to the box and can't expand or contract. The official name for this is "sub-pleural fibrosis". This is very widespread, and it explains why my lungs are functioning worse than what my scans show. The scans just identified the scarring, not that the scarring was gluing the lungs to the chest wall.

There is also some patchy scarring inside my lungs, but it does not appear to be active. This is called "interstitial fibrosis" and is "very mild", only about 30%.of my lungs are affected by this.

In other words, my lungs are practically worthless, and there's nothing my doctor can do except try to get me a new lung.

I don't know much else at this point. I have a meeting with the lung doctor on Friday and he will explain things further. I'm going to work on tracking down the specifics on my two cancer treatments and the bone marrow transplant so I can work to piece together how this happened. I figure the more I know, the better.

The good news is what I posted earlier -- my chances of getting a lung are pretty good.

More from the archive in Me, My Health.

I need a lung (09.06.2005)

Next Entry: What led to Katrina? (09.07.2005)
Previous Entry: Well, that took longer than I thought it would! (09.06.2005)

Read the 13 comments.

Kabira:

Doodle bug-

Please let me know if you need anything at all. Ever. It's yours.

Much love,
Kabira

Wed Sep 7 2005 1:35 AM


NJGuardsman:

Mr. Gilliam

Shouldn’t you concentrate your efforts on getting on the transplant list or finding other treatments that are (I guess) not in mainstream medicine/off the beaten path, how your lungs got to be how they are right now is irrelevant – it happened.

Forgive me for saying this but to me is sounds like you’re dwelling on the past (concentrating on the negative).

I suggest you look for alternative treatments in Europe, over there, there’s no bureaucracy (red tape) like here. Europe is more… open minded when it comes to medicine.

There will be plenty of time to out how all this came about after you beat it.

Wed Sep 7 2005 7:28 AM


NJGuardsman:

There will be plenty of time to FIGURE out how all this came about after you beat it.

Wed Sep 7 2005 7:29 AM


Cancergiggles:

Couldn't disagree more. If Jim finds out that his lungs are stuck to his chest wall due to his diet wallpaper glue, he will know to avoid it in the future. Also, from what little I know of him, he is far from negative and seems to take the same attitude as me. Shit happens, so live with it and laugh.
Europe? Maybe, but there's a mass of red tape here as well.

Best
Cass

Wed Sep 7 2005 7:44 AM


bobbie:

information is power - i'd do both. still praying!

Wed Sep 7 2005 8:08 AM


J:

Haha, that damn diet of wallpaper glue.

Wed Sep 7 2005 10:15 AM


Jim Gilliam:

Huh. I never understand NJ's logic, so I guess it makes sense that this never occurred to me.

Yes, obviously, NJ, I will be doing all that's necessary to get on the transplant list, etc. Check out this page for a thorough explanation of how the process in general works. Pretty much blew my mind.

http://www.mayoclinic.org/lung-transplant/process.html

Aside from that.. in this situation, and contrary to the current Katrina debacle, figuring out how it happened is not a means of assigning blame, at least in my mind. It's a critical step in understanding how to fight it. If I know how the scarring is happening, there might be some way to stop it.

Right now, my lungs are like a ticking time bomb. I really want to remove the time bomb (lung transplant), but that's really risky, will take awhile to make happen, and isn't a "cure", it just buys me some more time on planet earth. The more I know about how the time bomb is made, the better shot I have of stopping it while it's still inside. If I could stop it (and it's a long shot) then maybe I don't need the lung transplant right away. Which would give me more time.

And NJ, I had *NO IDEA* you were so fond of the non-bureaucratic european socialized health systems. ;-)

Wed Sep 7 2005 11:15 AM


Caty:

I don't blame you for wanting to find out the reason for the latest ailment...I would do the same thing, and it certainly empowers you with more information.

You are a rock star, Jim Gilliam!!

Wed Sep 7 2005 6:42 PM


NJGuardsman:

First of all I HATE BIG GOVERNMENT! The more money in the hands of the government the less the amount in the hands of the people. The more things the government gets into the worse they become (DMV, Medicare/aid for example, social security for another).

The “BIG GOVERNMENT” I prefer is in law enforcement and defense.

The only reason I suggested medical treatment outside the US is because the FDA is (for lack of a better word)is too…conservative, agencies like these take too long in examining/approving new: drugs, treatments, procedures and so on. I have first hand knowledge because I have a special needs child. The rest of the world is a lot “freer”?!? – more open.

Dont get me wrong, I'm not waiting for Uncle Sam to give his blessing on some new treatment or drug to better my son's condition - I'll do whatever it takes (pay out of my pocket) on my own if need be.

Thu Sep 8 2005 9:34 AM


jojo:

oh i hope you die
die alot
you piece of fucking repeating shit.

Thu Sep 8 2005 8:30 PM


Tom from Madison:

Check the stats on life expectancy rankings by country. Europeans are living longer than Americans. They often have a wider variety of treatments available to them. Why do conservatives have such a hard time acknowledging this?

We need more pragmatism and less ideology, when it comes to funding health care.

The "free market" rhetoric being spouted by neo-cons is laughable. Big Pharma is keeping a lot of innovation from happening. Corporate greed maximizes profit, not life-expectancy. Just look at the $ chasing erectile dysfunction.

People forget that CORPORATIONS are reaping many benefits from taxpayer $ invested in basic research--research that happens at many publicly funded Universities.

Some of the biggest, unsung American heroes are the scientists doing basic research in our colleges and universities. Returns from at least some of that investment should accrue more directly to the people.

Best wishes Jim!

Fri Sep 9 2005 11:54 AM


STraker:

Well, I'll I can say is from my own greedy perspective. I hope you find the answers--and the lung--you need so I can look forward to reading your amusing blog.

Keep up the good fights.

Fri Sep 9 2005 1:52 PM


ralfred:

my age is 69. I have Pulminary Fibrosis. The left lung is useless and the right lung is starting to deteriate. The lung specialists around the world dont know what causes it and dont know how to fix it. I cant get into a transplant list as my use by date has past. Prognosis: dont worry about something they cant fix, enjoy what time you've got left.

Sun Jul 29 2007 6:03 AM


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