Tuesday, December 30, 2008

Where Did..

2008 go? It dawned on me this morning that it is December 30th. No plans for New Year's Eve, just staying at home with my family and having finger foods to munch on until 2009. I'm not big on going out on NYE, it scares me to be on the roads. Here's to no deaths this year!

No new news on my health. I see Dr. L on January 9th and I plan to take a list of questions to ask him. I will probably be put on blood thinners for the blood clots then, I know Dr. L was talking to a couple specialists and reviewing the VQ scan also.

I got my CPap machine on Christmas Eve. It's been interesting getting used to sleeping with it. It's not uncomfortable, just unusual. I'm told I have the *cadilac* of CPap machines and that it can tell the pressure I need and change it to my needs, thought out the night. I also have a humidifier (which is very helpful with the cold I have.. blah). I can't tell a difference while using it, but Im sure time will tell.

Speaking of Christmas, I hope you all had a happy one. Ours was quiet, happy and everyone was over-joyed with the gifts they got.. even with us cutting WAY back. I got a Nintendo DS Lite and I'm already addicted, lol.

If I don't get to post tomorrow, have a very Happy New Year and stay safe!

Friday, December 19, 2008

Autoimmune Hypersensitivity Pneumonitis..

with fibrosis is my diagnosis... finally. The biopsy also showed blood clots in my lungs that the CT scans missed (at least we now know why the blood work was showing a possiblity of blood clots...). I am waiting for Dr. L to review the VQ scan and see what the course of action will be (most likely I will be put on blood thinners and possible steriods). The cause of my HP is still unknown. I tested negitive to all mold and fungus, and besides that, we are not sure what it is.

I heard from Dr. L last week about this, sorry I am late updating, but I had to let it sink in. It's not idiopathic pulmonary fibrosis which is a big weight lifted off my shoulders. Now just to find the cause.

I am getting a CPap machine soon. The oxygen company called yesterday to get some information and are getting ready to ship it to the Reno office. Merrry Christmas to me.. blah. No, I don't have sleep apnea, but Dr. L is hoping by forcing my lung open at night, it may help my oxygen levels during the day.

Friday, December 5, 2008

$68,902.96...

..billed to our insurance to date, just for my lungs. Thank goodness for insurance. This includes a three day stay when my problem was first dianosed this past July (7/22/08), two CT scans w/contrast, chest x-ray, blood tests, pulmonary function test, excersise test, sleep study, bronchoscopy/bronchoalveolar lavage, lung biopsy (including Stanford Med. Center checking them out), doctor visits, home oxygen.. and whatever else.
And still, no definate diagnosis yet. I think daughter #3 is right, I need Dr. House; one hour and I would have a diagnosis, lol. Yes, my 6 3/4yo daught likes Dr. House. No, she doesn't want to be a doctor or nurse, but the joke is she should be a Dr. because of her writing.
Yesterday I had a surprise test. Northern Nevada Medical Center called and had me come in for what I thought was another CT scan. When I got there, no CT scan, but a VQ scan. What the heck, might as well have all the tests done, lol. (No this isn't included in the above price). I don't know the results of this test yet.
Until next time take care, I here there are several *bugs* going away ::spraying disinfectant::

Wednesday, December 3, 2008

And Still..

..no real answers.

Well, I had my appointment this morning and was hoping to have more answers... but.. my biopsy reports have yet to be sent to Dr. L (I don't know who was more angry, me or him, ha ha). I do know the biopsys were sent to Stanford Med. Center, according to Dr. L, either the local lab couldn't figure out what the problem is, or needed a second opinion or knows Dr. L enough that he would ask for it to be sent, ha ha. He is also going to look at my echocardiogram again to make sure all is okay with my heart and the blood moving from the lungs to the heart and vise-versa.

There was good news with my last CT scan.. compared to the first one I had in July, the inflammation is not as bad (about 10% less). It still shows scarring, mainly in both lower lobes, but more in the right lung. My oxygen level is still not good.. today on 6 liters and sitting, it was only at 90%. So we have to wait and see if the biopsys show inflammation the CT didn't show and if/what kind of treatment will be needed.

I have another sleep study next Wednesday (12/10) to set me up with a CPap machine for when I sleep. I don't have sleep apnea, or a very mild case, but my oxygen does drop at night and Dr. L is hoping, with the forced air at night, it might help my oxygen levels during the day by opening my lungs more. And I see Dr. L again on 1/9 (if not before).

So far what we know.. I have some form of interstitial lung disease and/or possibly a problem with my heart/lungs transporting oxygenated blood. My pulmonary function is at about 63% (as of August). My aretial blood gas was at 59..a good level is at 75 (also in August).

Tuesday, December 2, 2008

Waiting ...

is the hardest part... of everything! Tomorrow I should be getting my results of my lung biopy... but it seems like the last two weeks have just dragged on.

Today was the day of *find the CT scan films*. I picked them up from my pulmonologist,, Dr. L to take to my surgeon's office, Dr. G. Dr. G wanted to keep them to plan the best places on my right lung for the biopsys. No problem (or so I thought). I called Dr G's office the Monday before Thanksgiving to see if I needed to pick up my films. After being transfered a couple of times I talked to the person in charge of the films who said she was going through them on Tuesday and if I wanted her to send them to Dr. L's office or if I wanted to pick them up. Well, my mistake, I asked for her to send them.. saving me a trip. Well, today, the hospital called to ask if I had the films because Dr. L's office didn't have them. No I told them Dr. G's office was sending them. So the hospital called Dr. G's office, they couldn't find the films, and the hospital was told Dr. G's office doesn't have a carrier service (they why offer to send them for me). ::sigh:: And the recopies will cost $10 a sheet (about $190 to $220).

Tomorrow at 11:30 am I have my appointment with Dr. L.. hopefully we will have an answer.
Until next time.. take care and live life to it's fullest

Monday, December 1, 2008

24 Days and Counting..

until Christmas 2008. Where did this year go?
We have about half of our Christmas shopping done.. and without setting foot out of our door on Black Friday...after working in retail for many years, the last thing I want to do is shop when the crowds are crazy. My youngest daughter (who is 6 3/4 years old) is done. The rest of my family I have picked up a few things here and there. I want to be done by the 15th.
Our Thanksgiving was great. My Mom and her best friend, Helen were here to visit and share our feast. I did all the cooking (besides the great apple salad my Mom makes) and loved every minute of it. I love to cook, and with my lung problems it's not always easy, but Thanksgiving was special and my body didn't mind. Mom and Helen left on Saturday and we miss them. Hopefully next Thanksgiving will be even better.
This week is going to be a stressful one. On Wednesday I hopefully will find out the results of my lung biopsy I had done on November 17th. I have an appointment with my pulmontologist Wednesday at 11:30 am.. I am hoping the results will be in and they can tell me what the problem is.
Until next time.. Take Care