I had a long appointment with Dr. L yesterday.. we talked about my diagnosis and what is to be expected in the upcoming months/years. He is not treating the HP yet, because the only treatment for my type (it's an autoimmune disease) will be to suppress my immune system with a form of chemo. Not my idea of fun, but it may become an evil necessity.

I have to continue to use my CPap machine and in March I will have another CAT scan and 6 minute walk test. If the results of these show no improvement or if my are not stable, then we will have to start seriously consider treatment.

Dr L told me in his 15 years of pulmonary medicine, cases like mine cause him the most problems... because he has to think so much, lol. He said some cases become chronic, some just go away, and others come and go. Right now, mine is considered chronic. I'm one of his 'smoldering' cases.. my problem is not gone and could flair up into a raging fire if we don't watch out.

I also have to lose weight.. like I didn't know.. and start excersizing again. Not much (before all this, I walked/jogged about 5 miles 3 to 4 times a week), but as long as my oxygen level doesn't go below 85 I it's okay. As far as my weight, I am considering a medically supervised diet plan, iMetabolic (www.imetabolic.com)
I have to call on Monday and schedule a consultation.

Why no posting, well, to put it simply.. depression. I don't do much of anything the past three weeks, besides what I have to do (cooking, housework, laundry, grocery shopping, school things). Some days I don't feel like getting out of bed, but I do and carry on like a good Mom/Wife is supposed to. Joy, Joy.
I think a lot of it has to do with my medical problems. I'm tired of doing everything my doctors tell me to, and still, I feel like crap. I'm just tired of it all.. can't I just go back to bed and pull the covers over my head until it passes? ::sigh:: This too will pass.

Happy Birthday to my Husband. Nothing special planned, he and I don't think much of our birthdays (who wants to be reminded of how old we are, lol). I will bake him a special batch of his favorite cookies and make him a pork chop dinner (also his favorite) and give him money towards a new set of tires. Yes, it's practical, but welcome to my practical life.. whether I want it or not. lol

The weather here has been nice. We had our white Christmas and since then, although cold, it's been beautiful. Yesterday I was walking around outside with a t-shirt.. it was in the low 50's. Today is supposed to be even more nice, but then it changes again.. rain/snow tomorrow. Gotta love Northern Nevada weather.

Happy 2009 One and All

I hope you all had a safe and fun night last night. We stayed home and enjoyed the evening with our family... playing DS games and laughing (plus eating.. a coffee tabled filled with finger foods was our dinner).

Out of curiosity, I did another addition of the amount billed to our insurance... I know I've said it before and will say it again, thank goodness for insurance.. and the grand total, from July 22 to Dec. 31 is $77,841.30 (not including the CPap machine). It is shocking (well at least to me).. I don't want to add up what has been out of pocket, but I will soon.


Have a great New Year, and New Year's Day, enjoy the Rose Parade and your family.

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!

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.

$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::

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).