Thursday, September 30, 2010

The places you will go

I've finally learned something. Not all hospitals are created equally. Duh. I really already knew this, but it really hit home when I saw my numbers from Wednesday's blood work at MDA. Did I mention that I was in Houston?

The liver numbers from MDA weren't very changed from the last set taken in Houston. This means that the cell counter at my local hospital isn't quite as sensitive, because the numbers were different. Live and learn.

I saw a pulmonary specialist Wednesday morning and she didn't tell me what I wanted to hear. She showed me a few X-rays of my chest. The lungs should be nice and black in an X-ray. My lungs have a fine haze of spider webs snaking across them. The doctor didn't like what she saw. She's an expert in GvHD of the lungs and informed us that my picture didn't fit the typical profile. She wasn't ruling anything out, though. She ordered a CT scan for that day. She also ordered a bronchoscopy, which couldn't be performed until Thursday.

By the time I was finished with the liver ultrasound that my transplant doctor had already scheduled for Wednesday and checked in for the CT scan, it was after 3. I didn't get out of the scan until after 9. Chris and I had to get a hotel room, which we weren't prepared to do.

Dr. K. advised us to book the room through Friday since she wanted a liver biopsy performed as well.

I had the bronchoscopy today. I also had a last minute lung biopsy while we were at it thanks to the results of the CT scan. I feel like I've been punched in the throat from both the inside and out. Essentially, a small, flexible scope was inserted up my right nostril and into my lung. I was warned that I might wake myself because of coughing. I did. It was brutal. The team was great, though.

They'd hoped to get five tissue samples for the lung biopsy. They had to stop at two. When they were harvesting tissue, they accidentally cut into one of the lesions causing the problems in my lungs and I started bleeding. They didn't want to risk taking any more chances. As a bonus, when they were pulling up that second sample, a third little nugget came up with it.

I was sent for X-rays after this and the doctor that performed the lung biopsy sat down with me to explain my CT scan. She was lovely and very apologetic for the whole bleeding thing. It happens. In her words, there are fluffy looking infiltrates in my lungs. I saw the X-rays and the CT. There certainly are. While they were fishing around in there, they also did a lung wash so that they could do a culture. They aren't ruling anything out. I might know something by the middle of next week.

The liver biopsy couldn't be scheduled for tomorrow, so Chris and I elected to come home. The doctor warned me that the biopsied lung could collapse up to 24 hours after the procedure and that I need to take it really easy. This means no school for me tomorrow. I'm missing another exam.

I have to return to Houston for a few days to see my transplant doctor and have the liver biopsy. I'm laying low until then.


lisa adams said...

it's never over, is it. (notice that wasn't a question). I am so sorry for this latest round of tests, procedures, indignities(!), and pain. All day yesterday my mom and I checked for your updates. She knows all about you and expressed exactly what I feel-- I wish we lived closer to each other so I could help/keep you company/drive.

Hope you can rest and shaking my head that you have to miss another exam. Priorities are priorities, but that doesn't make it any less disappointing.

Tina said...

love you lots. you know i'm thinking about you.

mwah! call, tweet, email, fax, text, tin cans with string-me if you need anything.

LacubriousOne said...

Never a dull moment in your life, is there? Keeping you in my thoughts!

Ann said...

Lisa, your mom and you are so sweet for thinking of me. One of these days we'll finally get together.

Tina, I'll never know why you chose to sit behind me in tenth grade AP American history, but I'm so grateful you did! Love you lots.

Kim, you said it! At this point, I think it would be an absolute luxury to be able to complain about boredom.

twentysomethinggirl said...

Keeping you and Chris in my prayers, Ann. Try not to worry too much about school - your professors will be reasonable and work with you given the circumstances. But I know it's frustrating to keep running into roadblocks. ((HUGS))

Anonymous said...

That sucks! Hopefully, you will hear something sooner rather than later. Call me if you need anything.


Jody said...

I've just read your post and started to follow you on the recommendation of Lisa Adams.

I am holding you in the light. Your voice and courage are so incredible; glad to meet you here.


Anonymous said...

Get some good rest. Pulling for you from New Jersey.


Nancy said...

Ann, Ann, Ann,
OMG.... I'm sorry for all you are going through. I really wish I could help!!! Hang in there and rest... I'm know your results will be back in a few days, and I'm hoping and praying that everything will be fine. It's important for you to get some sleep right now. I agree with the others, your professors will understand. Save you energy and rest so you can regain your strength! Love you lots. Keep me informed on what is happening... and thanks for the call today. I was on the road but so glad that you called. ttyl... nancy

Anonymous said...

Wow. I'm processing. Just give yourself the rest you need (easier said than done, I'm sure), Ann. We're just riding one of the dips in the roller coaster. I would have preferred a less-than-perfect grade on an exam as a "dip" but a dip nonetheless. This is the part on the ride where we hold hands and squeeze tight! I'll be with you in thought all day tomorrow... and, of course, always!

Wen Ü

PJ said...

Ann, I will call you when my cell phone gets service, which I hope is today if I drive up a really big hill. Hang in there, my friend.