Updates Continued

October 1st. Test Day.. Yea NOT!!! I had a Pulmonary Stress Test & another PFT done today & Oh My Goodness they tried to kill me.. My youngest son Levi went with me & even he cried watching me.. But I pushed myself till I about dropped, so we will have to wait for the results. (you can see some pictures from the test on the upcoming “pictures” link on the home page.) And you will finally be able to place a face with a name because there is pictures of my Pulmonologist, Dr Wong. He has to be present for a pulm stress, along with a pulm therapist & the pulm tech who does these test. Another night in the hospital October 7th (but it had been a while so it wasn’t too bad) My body just hurts everywhere, hard to breathe (it’s tight) and just seems nothing is right. So to the ER where I stayed overnight & got some IV fluid with antibiotics (which my veins hate) my arm again had to be packed in ice & a slow drip. A few bags later & a few shots of morphine I was good to go. Back home & rest, felt better after a few days. Dr. Wong’s office October 25th. He went over all my PFT & Pulm Stress test results. Lungs look good, look real good.. Little swollen, but nothing out of the ordinary for my disease. Blood looks like garbage again.. Transfusion didn’t hold. My PFT however was still good, holding at 41%. The stress test shows that my heart is holding its own, could be better, but looks good. Basically told me that he’s a pulm & not a transplant surgeon so he needs to send me back to St. Louis for a evaluation so we can try to figure out what’s going on.. I think all the doctors are in agreement that the medication is killing my blood & my liver is damaged. So the obvious recommendation would be to take me off the medications right? Wrong, what if the medication is working, doing what it’s suppose to do, which is slowing down this disease??? Ok so now if they take the meds away from me, will the disease wake up & spin out of control again? After all the work we have done trying to get it to slow down, it’s just a very scary thought.. But hopefully St Louis has other options for me.. I have spoke with Massina, my Transplant coordinator at Barnes & she suggested a few other types of meds (again still cancer meds) but said Dr Hatchum (the pulm in charge of my case) is ontop of it & has been watching my progress & speaks with Dr Wong too.. I’m excited & scared at the same time about this appointment. But as usual I’ll keep you updated best I can.. Please continue to pray for us all.. My husband will not be going with me for several reasons.. His boss isn’t the most compassionate guy you will ever meet… so it’s hard for him to get off work with out it turning into a big issue.. I have 2 teen age boys who need attention a lot.. and Gary is looking forward to me being gone for 3 or 4 days so he can work on the house with out worrying about making me sick.. The dust, mold, wood, in & out.. some days are better then others, but I’m holding up ok I think. So anyway a friend of mine Vicki has insisted that she goes.. My niece Heather wanted to go also, but Heather would have had to take off work & she has a 3 year old. Vicki also has 3 kids but her husband is all for her going with me (I think he likes the idea of her going away for a few days, she home school’s & needs a break too) so there you go, I’ll update as soon as I know more. Ohh Dr. Wong cancelled my bronch too, said he would lever everything up to Barnes.. Sent me for more blood work & now instead of having it done on the 1st & 15th of every month like I’ve been having it done it’s every Thursday till I go to St Louis. Oh Joy NOT!!!

October 28th I went to see Dr Larson who is a Gastroenterologist, Dr Wong sent me to him.. Looking to see if I may possibly have an internal bleeding that may be causing my blood to go down to fast. Also looking at why I still through up all the time, when I eat or not.. I have some intestine issues as well as liver issues.. So anyway he did a full check up, went threw a lot of what they will be doing, slowly but cautious too.. all my meds, and proceeded to tell me all of the test he will be ordering on me. I had an upper gi done on the 29th along with a scope of my esophagus. On the 1st of Nov I had a lower gi done. And I have to have an endoscopy on the 10th.. So there you have it, I know nothing.. again I wait… We got the call this morning that I will be heading back to St.Louis on November 29th. I have test all day on the 30th, then a consult (transplant team meeting) on December 1st. Then if everything goes as planed I will be home the night of the 1st. Gary & I ask for prayer for the doctors & technicians and other staff... travel... and of course my lungs. My lungs seem to be holding up rather well, it's my medications that are the issue. So we wait to see what the transplant doctors have to say. I've been forewarned that more then likely I will be placed on hold. Which on one hand is awesome if my lungs are well enough that I wont need a transplant for a while then yea!!! On the other, the medications that are suppressing the disease are causing major issues elsewhere & in coming off the medications will the disease go into a tail spin again? Oxygen is another issue, the test results are in from my PFT & Pulmonary Stress Test and it looks as if the oxygen possibly isn't helping much so we have to see about that & if I am to remain on it or what the deal is.. So like I've been saying, we don't know much right now, but we are hopeful that Barnes will enlighten all our questions & I have a list for them too.. LOL Thank you for your prayers & caring in advance!!!!  Gary & Windy Felsing November 19th is my 1 year ann. of being diagnosed with Interstitial Lung Disease with Pulmonary Fibrosis. I love proving doctors wrong.. I’ve had 6 tell my husband & my self that I wouldn’t live to see Christmas.. well it’s in less then 2 months & I’m alive & doing fine!!! Now I am excited to hear what St Louis has to say when they see me.

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 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) A year ago when we first found out I was sick my PFT was high 20's. They got it up to 30's where it has stayed for a year. In St. Louis it was like 36% & my last one here was 35%.. So right mid 30's is where I had been sitting. The PFT I just had done came back at 55% WOOHOOOOOO I was all excited again started crying & said to Dr Wong "You still don't think I'm getting healed?" But he was quick to inform me that I was still very sick that these numbers were for my diagnosis not for a normal person's. I asked what was happening to me then. He is totally guessing at this point but added that hopefully the medicine if doing it's job & they are hoping that they have the disease under control for the time being & maybe it's going to stay like this for a while.So I address the transplant issue. There is a thin line between to transplant or not.. You can be to sick, you can also be to healthy.. So I was worried that maybe I was getting to sick, but now drastically changed to "did I get to well to be listed?" He said after talking to St. Louis that they are going to leave me on the list just as is. I am still sick & still need a transplant..

But if the doctors are guessing right we may have just bought me a few more years to wait. Doc used the number 4, said possibly 4 years, maybe next year.. we just don't know at this time.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 doctors office to call with all these new appointments for me so they can run more test, so we can again wait. 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..We spoke about my oxygen next.The test are inconclusive as to whether using O2 24/7 is even helping me.

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