Updates Continued
My O2 will stay as it has been for the past few months.. Frequent checks of the O2 stats with the oximeter, 5 ltrs at rest, 7 with activity, 10 with rehab... I am aloud to take it off for brief periods at rest only & requested only while at home sitting. So whatever... No change there. As for this cough........... There is nothing they can do, it's the PF.. I do not have a cold, and so there is nothing they can do but hope it gets better enough that it's not choking me like it's been doing the past week. So there you have it... I can't think of anything else at the moment.. Please continue to pray for us.. Gary needs sleep since my coughing wakes him all night long. He told me he slept like a rock while I was gone.. LOL I've offered to sleep down stairs again & he insist NO.. I'm just so thrilled to be alive I can't find the words to express myself.. With Christmas being just a few short weeks away now.. & us having several doctors telling us just 1 year ago that "unless something major happened or unless I got a new set of lungs very soon I would be dead by Christmas of 2004" well, I am happy to report I am not dead yet.. and it looks like I'm doing just fine.. I am so excited about the upcoming holiday season I can't stand it.. My house & yard is all decorated (with the help of Dee, Sue, Jake, Levi & Kuirsten) my home looks awesome, please feel free to drop in any time.. I know Gary & I don't have a ton of money for gifts and that doesn't even matter to us this year.. It's just awesome to be here & to know that all of you love & care about us.. And to top it off my niece Sonia comes home tomorrow!!!!!!!!!!!!!!!!! Heather you have to sleep tonight too by the way :P in closing I just want to say thank you for all of your support, prayers & concerns over the past year.. It's greatly appreciated, more then you will ever know. Have a Very Merry Christmas, stay healthy & warm!!! Let it snow, let it snow, let it snow!!!!!!!!!!!!!!!!!!!!!!!!!!!! Windy Felsing - Iowa
Well, all the test are in & here is what we know as of now..... (not anything close to what I wanted to hear) Let's start a few weeks back... On the 27th of December I went to check out a new doctor.. he is a Kinesiologist (a unique form of a chiro) This doctor was recommended to me & I was curious, but doubtful, that he could help because my issue is my lungs & not bones or muscles... But much to my surprise he ended up being awesome.. I was skeptical & so therefore didn't offer any additional information to this doc at all.. He ended up doing an evaluation and his findings were that:He thinks 1. I have a huge viral infection threw my entire body. 2. I have a yeast infection in my intestines & colon. 3. I have mold in my lungs. when he mentioned the mold in my lungs I was freaked out.. "How could he know that with out a biopsy or needles or nothing??" My husband's sister-in-law Cretia (a RN) went with me in the room & so when she heard this she started crying with me & it was just crazy.. Anyway, he recommended that I take Zymex for the mold & yeast... Acidophilus for the infection & then Ligaplex for the joints & to hold the adjustment for longer.. I have taken the ligaplex before after my spine surgery for a few years.. But the other two I had never heard of & wasn't willing to compromise anything my pulm or tx team has going for me.. So I contacted them to check if it would be ok to mix with my medications & they agreed that they couldn't hurt but... they had no medical proof that these would help... So I am taking them. After Dr Miller adjusted me I was very sore & had been crying pretty hard.. But he taps me on the back of the leg & states "you can breathe better now" I was like "What??" I told him that "no I can't, I still hurt, my chest still hurts" but he said "after you gather yourself, stop crying & catch your breath you will breathe better" So I asked Cretia to go out to the office & get my oximeter from Stacy & Chris (who were waiting all this time) Upon going into this office I had checked my O2 & @ 7 ltrs it was 88. I was short of breath & coughing as my norm all the way up... But when Cretia checked it after the adjustment my O2 was @ 98. Cretia made the comment after, that she noticed me struggling to breathe on the way up but on the way back I was much more relaxed with my breathing & hadn't coughed at all.. Talk about cry babies.. I was just floored, I had not seen 90's for a very long time... So doctor Miller closed our session by adding that; he wasn't God, he couldn't cure my disease & he wasn't trying to.. Didn't want to make any comments about my medication & said for me to contact my medical doctor but to keep him informed.. I'll have you know he personally called me & my husband several times just to check on me.. What he did say he could offer was to ease the pain I was in & to help my breathing therefore helping my blood & oxygen flow better.. His goal for me would be to work with the medical team I have, to help either prolong the transplant or maybe even someday not even need one. Which he had done as promised, my O2 is much better now & I am not as sore, still sore yes but not as sharp. It's been almost 3 weeks now & my O2 is till 97-99. One time it was 91, but I left the rather large group I was at New Years Eve @ my folks & it came right back up.
As soon as I left Dr Miller's office I quick got on the phone to Dr Wong (my pulm doc) and spoke with his nurse & told her to have him call me. After talking with Dr Wong he was wanting to run some test, see me & remind me that I had a very serious lung disease & to be cautious... He also called several times over the 2 week period. So I agreed to wear the O2 at night while sleeping & also if it fell below 90. Then he ordered the test & I awaited the results. The test were the basic's.... PFT, ABG's, Blood Work, Contrast CT, Echo & would see about a Bronch after results.. So the test were the 6th & 7th. & I got the results yesterday.. I was so excited about going to the doctor I couldn't hardly wait.. For the past almost 3 weeks I have felt like a new person.. Breathing better, coughing very little & mostly at night, slept for 6 days straight, even cooked dinner almost every night after I woke up from my extended nap.. LOL So I approached this appointment with high expectations, as I normally do.. Of course if you feel better you must be better? right??? wrong... Well the results are in: When Dr Wong first came in he was rather shocked that I would look so well.. meaning my eyes aren't black & cloudy & I had some good energy/wasn't dragging my feet... He simply said "How can you be so perky & awake with your numbers being so poor" I bout fell off my chair.. So he began to tell me that; my white counts way up (not quite double yet), my hematocrit is low (13), my PFT was only 30 (which is 2 points down from a few short weeks ago when I was in St Louis & had one done) He couldn't understand how I didn't need oxygen.. but assured me that the oxygen helps my heart & so they would have to run a few more test to see if/why/and or I need it during the day.. My echo showed no more damage, nothing new.. The same damage on the bottom was all the could detect so that was good news. He just didn't understand how I was out of bed at all.. So you know me, crybaby.. I was saddened because I had been feeling so much better I just knew that I would score good numbers, when actually I was worse then just a month prior...
He explained what his feelings were about the kinesiology.... He said "The problem with chiro's is they manipulate the body into thinking that they are feeling better, so when you do feel better it could make you worse in the long run." meaning that for me, I felt better so I ran with it.. I ended up not using my O2 at night several times because I just felt I didn't need it anymore.. & I was going here, cleaning this & that, making big dinners for my family... This doctor did help, don't get me wrong & I am still going to see him.. I just have to learn a happy medium because when I'm feeling better I tend to over do... (imagine that if you can....) Here is the problem for me.. In the process of feeling better & possibly over doing I could suffer a heart attack again & this time I may die. My body is very sick even though I don't "feel" sick... so I'm not paying attention to my ailments at the moment which can cause me more harm then good. So Dr Wong's fear is that while my breathing may seem better it's purely superficial & I need to be very cautious in what I do.. I don't have to stop seeing this other doctor I just have to not be so over zealous when feeling better too... Does that make since? If not feel free to give me a call... I will try to explain it better if I can. I was told more test would be ordered & we would have to take it one day at a time.. For me to remind myself that I am sick, I have a terminal disease & I am end stage. I need rest & to take my meds on time.. So now I again wait on some testing to see what's up.. The transplant is still on, I will not be on hold, I still go in April to see about moving down to St Louis & as far as the transplant team is concerned I am a very sick woman & they want me to slow down. I said slow down not stop.. Stopping would be the very worst thing I could do.. For PF you need to exercise & be active.. You just have to breathe, relax & not be in a rush all at the same time... Dr Wong & the tx team agree that they will not start to decrease my medications until my house is done.. So I was mad & crying about that because... The house is about as done as it's going to be for now.. We are out of money & so therefore..... This is how it's going to be for a while..
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