Hello everyone.. September 10th, 2004 I've been trying to think on how to type this with out it turning into a book.. So I will try not to ramble. So here we go. The results are in from my test from 2 weeks ago. I had an appointment on the 9th to get my results. Doctor Wong called us on Friday & said he wanted me in his office on Tuesday. So Gary & I spent the weekend being worried (Now What??) I go to his office on the September 7th and this is what we know so far.
My CT Scan's.. Dr. Wong informed me that at first glance he was upset thinking the tech's had sent him the wrong CT because what he was looking at couldn't possibly be mine. So after checking & such he discovered that it was my CT and he said it looked 80% better then he'd ever seen my lungs look in the past year. I got all excited asked if I was healed, if I still had pulmonary fibrosis, what now.. etc.... He just said yes I still have pulmonary fibrosis, I'm still sick, and to compare my CT with a "normal" person's I would still be very bad off, it was still abnormal & fibrosis. But for a personal gain of 80% I was excited to say the least. He said that there is no cure for pulmonary fibrosis & God Himself would have to come to him & tell him I was healed for him to think that. so ok...
Then he moved on to my diet, the prednisone is catching me quick fast & in a hurry.. gained 19 lbs in 2 weeks.. OUCH. so he wants me on 1800 calorie daily intake. I'm not sure how to do that but I'm looking into it. Asked about my treadmill use & when I was getting a stationary bike.. Said I should be on both about 30 min a day.. I haven't been able to do the treadmill for 30 yet, he said to keep trying. Then we discussed my PFT (pulmonary function test, it shows how much of your lungs are working.. read about the test on my web site)
So on to my blood....
This is where he got concerned with me & all serious. As you all know we have been watching my blood work closely for several months now. My white count & Liver Enzymes. ok.. they are not getting any better but rather still going crazy.. Moved up in speed even this time. My Liver Enzymes have about tripled, my hemoglobin, white count & hematocrit are way down hitting danger zones even. And he had never mentioned my platelets before & now they are out of wack too.. So he stressed something's going on & he used the cancer word again.. I said don't go there, you doctors have had a year to find cancer & me and always came up empty.. So were not even going there... So anyway, I have to see a Hematologist, but I don't know who or when yet.. I should know today or Monday.. I also have to go see a stomach doctor to make sure I'm not bleeding somewhere and to check for cancer. I will be seeing Dr Larson for that. Then we talked about a Pulmonary Stress Test. Different from a Pulmonary Function test.. but similar in an odd sort of way. So that is also being scheduled soon. So we are just waiting for the doctor’s office to call with all these new appointments for me so they can run more test, so we can again wait. (I had these test done on October 1st. You can see pictures of my test on the upcoming new “pictures” link on the home page. My son Levi went with me for these test & he took some good pictures. Mostly for people who don’t know what these test are.. Now you can look & see what all they are) Dr Wong stressed that I need to take it easy & not rush out thinking I can concur the world in a day. Reminded me very firm that I can end up even more sick then a year ago very quickly if I don't take care of my self & relax, breathe & take my medications. He still wants me wearing mask more often & not going into large groups of people.. But like I told him.. I don't do that much & I am careful..
The test are inconclusive as to whether using O2 24/7 is even helping me. The PFT didn't show any improvement with or with out the O2 on.. So now that we own an Oximeter/Pulseox he says use it. If I'm at home or just watching tv or on computer.. if my O2 isn't dropping then I may not need it for a little while. If I am out & about then I have to have it on & while sleeping I must where it at all time. My O2 is still freaking people out.. I can be 95 one min then the next 78-85.. It just plummets when it drops it doesn't play around. So for safety reasons, my heart & my health I still have to use it while active & out. I'm still at 5 ltrs rest, he requested between 8-10 while active & 10-15 with exercise or rehab.. But again they aren't even sure it's working, but is it worth it to risk it..??? NOPE. So I do as I'm told.. I think that was about all for the actual medical chat part of our session.. He also had me walking with no O2 to watch my levels, only dropped to 87, so that was good.. yeah for you normal people that's low but with no O2 on for me that was awesome, I used to fall into the 70's remember? So anyway.. then Doctor Wong addressed my house & how we can better my life expectancy threw changes in the home. There were his suggestions.. He would like the house tested for mold's.. I am testing high for 4 types now. Used to be only 2. I can't pronounce them but they are.. Aspergillum Penicillium Ascospores & Clad Osporuim. The goal would be to see if we have these in our home & if they are here get rid of them.. But the thing is money.. So Gary is trying to think of what to do or how to go about it.. This is new to us so we are working on it. We don't even know who to call or nothing..
Next was to remove all carpet from the house. He said that people with lung diseases should really never have carpets in there homes to begin with. Everyone has dirt, dust & mites in there carpets. And everyone has certain types of mold growing in the carpet pads. Not to mention all the chemicals in both the pads & the carpets them selves. So he told me that when any one walks, it stirs up the dust, dirt, mites & mold.. then it's now in the air & I'm breathing it in. So again Gary's trying to figure out how to get the carpets out of here fairly quickly & replace with hard wood or ceramic tiles. My Aunt Lisa has told us whatever we need for wood or tile we can get from her.. But it's a matter of installing it too.. And buying the x-tra materials that go with replacing our carpets now. Some one asked me after "what about the water bed?" well I'm not sure I ever told him I had one to begin with, he's never asked.. So if anyone knows anything about them, let me know please.. I will try to ask him next time I speak with him.. I guess for mites, skin & dust some people thought my bed could be bad too. Which would be a great thing cuz I hate that bed but Gary wont replace it.. Maybe if he had to.. But I'm sure that would be very last thing...