Hello again :-) (WARNING< LONG)

[Guest guest]

Hello all my dear friends. I have missed you all so much! We've had a

wild ride the last few weeks, not the ride we were expecting, though.

As most of you know, I have been having some problems with my lungs

the last few months. They thought it was bronchitis. I felt it was

something else, since the more they treated me, the worse that I got.

I didn't have any congestion, nor did I have any fever. I just was

losing lung capacity and strength. Well, I got very desparate, and

scared. I couldn't even make it 20 feet to my bathroom without almost

passing out because I just couldn't move enough air to feed my body's

oxygen needs. As a last resort, I made the first appointment that I

could with my doctor, however, I couldn't get in to see her, I had to

see her partner. Something that would save my life.

He instantly recognized that this was much more that bronchitis. He

had me walk around the office and measured my O2 sat levels (which no

one had thought to do). Upon seeing the results, he turned pale,

pushed me into the chair and grabbed to nearest Oxygen cart. He had

said that my levels were " nothing " , which I took to mean " 0 " , which

of course they couldn't be, but what he later told me was that my

levels had fallen into the 50's, which is close to the passing out

point. Which makes me wonder, how low had they gotten at home? Since

I was not nearly as out of breath in the office as I had been at home!

He then sent me to the hospital for some tests to be done STAT. An

echocardiogram, chest x-ray, and ABG's. I don't what he told them,

but I had all those tests done, completed and results in hand within

2 hours! By the time I got back to his office, he had all ready set

up and had waiting for me, oxygen to take home, a concentrater, and a

bipap machine. The office staff told me that he spent over an hour on

the phone arguing with my insurance company. WOW. I think I have

found me a doctor. :-)

Well, he sent me home for the week end(this was on a Friday) and had

me come back on Monday to see how I was doing. After studying my

results over the weekend, he had decided to have me admitted to the

hospital, as a precaution, since my surgery date was only 2 weeks

away. So, off we go to the hospital. My appointment with him was at

4:00, I was in a room by 7:00. I like the way this man works.

I was in testing all night, and I mean ALL night. Chest xrays, echos,

blood tests, ABG's etc. He had me set up with cardio and pulmonary

specialists. They did a complete endocronoligical(?) work up. No

diabetes! Yeahhh! No high blood pressure either.

However, nothing else was showing up. They couldn't find out what was

wrong with me. The exrays showed the tinyest bit of pnuemonia, but

not near enough to even cause more than a little cough. So we went on

the the second level tests. They thought it was maybe my heart. So we

went through all the heart tests. We ended up doing a TEE (not fun),

which is where they put a probe down your throat and do an internal

echocardiogram. My heart checked out fine. No problems at all. Good!

But still the fact remained, what was wrong?

So, they dismissed the cardio, and started in with the pulmonary.

More exrays, PFTs, bloodwork, VT scans, Gallium scans, dopler scans,

sleep test, etc. It ended up with a lung biopsy, (not near as much

fun as the TEE) After all this, the only thing that showed up was the

tiny bit of pneumonia and a tiny bit of plueral effusion. Neither of

which, even combined, would come near to explaining the problem. In

fact, they felt it was a result of the diminished function, instead

of the cause.

Well, by this time, they had decided that we would have to call off

the surgery, at least until we had some idea of what was going on. At

that point, we didn't think that I would live long anyway. I had

allready stopped breathing a couple of times during the nights, even

on the cpap and O2.

So, I made the call. I wanted to make sure someone else had enough

time to use my date. Since these dates are so precious.

Well, my date came, and went, and I was still in the hospital. I

ended up staying for 15 days. I was released the day after my surgery

date. On the day of my date, (which was depressing enough, as you can

imagine) we found out that the plant where my husband works,

ville, would be closing in May. :-( Which means no more

insurance, unless we pay for it, and it is 432.00 a month!!! He will

be getting unemployment, which will leave us 300$ a month short, and

now on top of the 432$!!! Things seem to be getting complicated.

So hear I am, still on my O2. I am getting stronger, and learning how

to cope better with dealing with my O2 limitations and thanking God

for so many things. They still don't have any definitive answers,

other than nothing major is wrong. No cancer, no blood clots, TB,

heart problems, etc. They seem to agree with my PCP doctor, that the

lung muscles are just tired and giving out and that having this

surgery is the only thing that will save me. The lungs work fine,

just at a lesser volume. The O2 and CO2 exchange works fine and when

I am at rest, I can easily maintain my sats rate. It's only during

exertion that they drop. So they said that I should be fine on a

ventilatior during surgery. But trying to convince to go ahead

and do the surgery may prove hard. I hope not.

They want me to have it done as soon as possible, since I am stable

right now, and I still have insurance. They said that they are

worried about if we loose the insurance, and I have to go through

another long battle with Tenncare(the state run insurance that I will

have to take and probably won't pay for me to go out of state to

) that I would get to a point that I may not be able to be

stabalized again. So, we are in a race with in charge. I think

we can hold our insurance until June, but after that, there is no way

we can afford it.

So once again, I ask for your prayers. I know that this is selfish of

me, you all have been so great. I know, that it is only through

prayers that I lived that first week in the hospital. I knew I was

dying. But, I am mentally and spiritually replenished and I am strong

enough for the surgery now. I am quite sure that I am physically

ready as well, or I wouldn't even consider it.

I heard that there are 11 in line as of April, so that would make me

#12. So hopefully, if will consider still doing my surgery,

that would put me close to the June cut off date, if my health will

hold that long. I am strong enough now, but they are very concerned

about me waiting too much longer.

Thanks to all of you who have sent help through thoughts, prayers,

cards, or money. I have enjoyed your letters so much!

Congratulations to all of you who have had your surgeries, or have

gotten approved while I was away. Good luck to you all, whatever the

stage of your journey, and God bless you.

-Sherri