Test Results and Treatment Changes
I visited my medical team today for my test results. The good: bloodwork was good all around. Urinalysis clean. EKG normal. CT Scan showed inflammation and possible infection. PFT test was 92% lung capacity with inhale force around 67% and exhale force at around 55%. The bad was the PFT test. It is about 12% less than it was 4 years ago. I also dropped 8 lbs. since last April. All sputum tests came back clean so far, waiting on the petri dish results yet. But no sign of infection for weight loss explanation. My doctor thinks my body is spending so much energy getting oxygen to my organs and system, that it is eating away at my weight during sleep. I wake up tired every morning. My nutrition is fine according to the bloodwork. Proper amount of nutrients and protein showed and all organs functioning normally. No sign of a hyper active thyroid. So I am going to have to do an overnight oxygen level test. If the oxygen level drops below 87% for more than 5 minutes overnight at any time, I will have to go on oxygen at night. I was also given a first injection of Dupixent. I was given enough for two months to try out and see if it helps the mucus production and inflammation. I was also given another Prednisone prescription to use as needed. Depending on the overnight oxygen test results, I will know if night time oxygen is needed or not in week or so. That's all I got for now. Take care all and God Bless!
Thanks for the update,
! I'm glad there was a lot of good news, but I can see why you are so concerned about the PFT test and the weight loss. I hope the medications help and your PTF results improve. Keep us posted, if you don't mind. Thinking of you. - Lori (Team Member) I have hope that if you do need oxygen at night, it'll help you feel a bit more rested. Was it a sleep study or just oxygen? I'm wondering if it might be worth it to explore the possibility of sleep apnea, etc. Some of our members do best with a CPAP machine or even a BiPAP depending on the circumstances. Just thinking out loud. Sending hugs and comfort to you -- you know we've got your back. -Melissa, team member
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I am supposed to have an oxygen study while I sleep. I am supposed to go to a local medical supply and pick up the machine and oxygen sensor for the sleeping oxygen study. It has not happened yet, so I am contacting my medical team tomorrow to see what is what. I understood the medical supply would contact me for when to come pick up the equipment for the study. Haven't heard anything from them. I will find out from my doctor what is going on and when this is supposed to happen. I will let the forum know the results as soon as I know them Take care and God Bless!Dminor9, I hope & pray all will be well. I didn’t get a notification that you wrote this & Im following you?
I had a sleep apnea test at a hospital next to the emergency room. The curtains were drawn but there was the sound of ambulances & the lights would come right through!!!
I went as my husband said he would give me nudges to wake me up as I would stop breathing. They told me I have some kind of sleep disturbance but not sleep apnea. I didn’t feel very confident oh & a warning, I have thick long hair & they used a glue with all the wires on my head & it was a real mess to get out of my hair. I put it up in a low bun but still didn’t help. I have a hyper active thyroid & it seems controlled with meds.
I was diagnosed recently with a form of syncope, Orthostatic hypotension where I passed out & hit a little plant table & than floor. Mostly trauma to face & nothing broken which I’m very grateful for.
I feel like I haven’t talked to you in ages! I’m on oxygen nocturnally & with any increased effort like exercise. Been a little afraid to exercise the way I use to every day but doing chair exercises along with my hobbies, I do love your thread. When it rains it pours. I hope you feel better now & can update again soon and praying your wife is doing well after her accident. Hope grandkids are great.
I’m trying to stay positive & hope we can stay healthy throughout this season.,
Absolutely great to hear from you! I actually just got the sleep study results two days ago. I don't know why it took so long. The test was merely wearing a watch (like a smart watch) with a oxygen reader attached and put on my thumb. The results said I was at 94% oxygen throughout the night. So I don't know where that leaves me as far as weight loss goes. As far as the Dupixent is concerned, it definitely helps me breath easier and deeper, but also makes me cough a lot and I cough up a lot more mucus than I am used to. The mucus could actually be the problem. My CT Scan showed a lot of mucus build up in my lungs. So the Dupixent might be the reason I am coughing it all out. I get another injection next Monday. My doctor wants to start me on it as long as I have no bad side effects. The worst effect is feeling like I have a cold. My nose runs a bunch. I was having burning, itchy eyes, but that went away. But I can definitely feel the ease in breathing. So I have an injection next Monday and one more injection two weeks after that to let the doctor know how it works for me. My doctor will fill out all the paperwork to see if I can get it with help from the manufacturer. It lists for something like $1500.00 per injection (I know, ridiculous). The costs I have seen run about $540.00 per injection. Still more than I can afford. So we will see where it goes.
Your passing out and falling, hitting your head sounds absolutely terrifying! You need to stop doing that. Hopefully that will get under control for you and your husband. My wife is doing pretty well and pretty much recovered from her shoulder surgery in July. She is still doing rehab exercises, but overall doing well. We settled the lawsuit with the company responsible for the accident. Should get our settlement hopefully before or shortly after Christmas. The settlement will allow us to invest and help both our retirements, easing the monetary worries.
Our grandsons are doing wonderful. I had them both yesterday all day. What a joy they both are! Played video games and Legos all day. It is fun to act like a kid again. Wait, I never stopped! Hope all is well with you and your husband and your beautiful Lab. Winter is right upon us. Down here in Texas, that means weather I can actually be out in a bit. For you , I imagine it means cold and snow. Take care of yourself, great to hear from you, and God Bless!
