New and undiagnosed

My O2 while moving is always 92-94, and my heart rate varies from 106-130 (resting is 98-99%/76bpm.) I keep hoping time and exercise will, but no... So I just ignore it except if I get short of breath just standing still. It's just part of life for me, and for many people I know. My younger brother would be delighted with 94% sats -ever!
As for hair loss - I'll guess stress and an after effect of your illness. Relax and give yourself daily scalp massages...

Just keep on moving - can you put an app on your phone to tell your daily active minutes? I aim to move at least 30 minutes on my walk and 10-15 minutes per waking hour the rest of the day - my goal this week is 250 minutes per day - last week I averaged 230/day, which includes housework, errands, exercise...
Sue

Yes actually I was planning to buy a Fitbit tomorrow. One without an oximeter! Today was the first time I babysat my 1 year old grandson since I got sick and all went very well.
If 94% is good during movement I'm happy with that. I do get concerned because sometimes (previous to putting in away my ox) I find I'd have to deep breathe to get my resting 02 to 97. Sometimes I find I breathe very light and now that I'm aware of it, I've often noticed myself holding my breath subconsciously. If I'm laying in bed into a movie I can actually go down to 90. Is this odd?

I was on (and I am still on) pantoprazole. It cut down the acid reflux for me, but mine was a severe case. The doctors then added Pepcid to try to control the acid more. I had cut out many things from my diet over the years. First thing to go was wine about 20 years ago (wasn't much of a wine drinker so that didn't bother me). Then I couldn't have juice (made since to me). Then was the gluten and then the severe mint sensitivity. Many people that I have spoken to are affected by spicy food, but this doesn't have any effect on me.
I don't believe that it brought on the IPF though. However, it is effecting my lungs and we are trying to get a handle on it so that it doesn't shorten the life of my new lungs. I go every month for a bronch and it has been showing the beginnings of rejection so then I go for transfusion of strong steroids (25x normal amount). My pulmonologist has sent me to a gastriontologist and a gastro surgeon, but not getting the results that we want. He is looking for another doctor that understands the effects of the gastro issues with the lungs.

It sounds as though Nissan Surgery should be an option for you. I was having terrible gerd and this was done. You might want to check it out. Mine was so bad that it ate through the flap that keeps food down.

Now that more time has gone by ( I'm still on pantaprazole) but I'm wondering if I need it anymore. I've cut out all the acid producing foods and never needed extra acid control. Gastric juices no longer seem to come up to my throat but I also ensure to have my last food of the day by 4 or 5 pm. Theres been days I've forgotten my pantoprazole altogether and didnt notice.
Before my aspiration pneumonia I was taking 5-7 tylenol 3s a day for back pain so I could keep working as my husband has stage 4 renal disease and Guillain barre syndrome so I'm the bread winner. So those didnt help either. I'm hoping not to have to take pantaprazole for life. I do miss my chocolate, mint and tomatoes!

Hi Yvonne, it's great to hear you are doing well. As far as the pantoprazole, maybe ask your primary about a "trial vacation" from it?
I'm with you on missing favorite foods. But maybe you can try adding them, one at a time and in small quantities, to your diet? I have been able to manage this with fresh-squeezed grapefruit juice or the occasional tree-ripened grapefruit this winter after not tolerating that for 5 years. The key for me is to have it early in the day, and a moderate amount. I also know I can eat chili - before 6 pm. If I eat it later, I will have a miserable night.
I hope I never have to give up my daily dark chocolate though!
Sue

I went to my pulmonologist today and he said my lung function test was good and my 6 minute walk test was good however the CT scan I had last week compared to the one I had 3 months ago was still basically the same. The ground glass opacities are much less and he is pretty sure that it was ours due to aspiration pneumonia from GERD. He said the scarring has not changed. Now I don't know if scarring gets better with lungs ? Or stays the same or gets worse. But he said it's the same as in the last CT. Having said that he has decided to err on the side of caution and is sending me to a lung scarring specialist. And he wants my lung function test and CT repeated in 6 months. Is anyone familiar with lung scarring and does it generally get better? I think just the thought of going to another specialist, when I thought this nightmare was over, of course worries me. I'd never even heard of a lung scarring specialist. Anyone? Thanks in advance 🙂

Hi Yvonne - I'm glad to hear the doctor is happy with your progress - I bet it's a big relief for you.

You asked "I'd never even heard of a lung scarring specialist. Anyone? " Well, if you had asked my Dad, he would have said there's a specialist for everything. At one point he asked the doctor if he had to see a different doctor for his left shoulder than the right one. I would say it's not exactly a separate specialty, just someone he knows with more experience than he has in evaluating scarring. I think he may be concerned because you had such a difficult case, and wants to make sure he isn't missing anything.
As to whether scars change, my scarring after an infection never went away altogether, although the nodules eventually disappeared. On the other hand, after Covid my daughter's scarring has gotten better.

I don't think this is cause for anxiety - more like cause for celebration because your doc is so thorough!
Sue

Thank you Sue! Loved your dads comments about having a specialist for everything.
I had covid in Jan of 2021 and 3 days of no smell or taste and it was over. This didn't hit till Aug/22. I had severe pneumonia back in 1998 which brought my priest in giving me Last Rites so I think there was scarring from that. But my pulmonologist couldn't tell because my first cts in August were an inflammatory "mess". I know they queried Interstitial LD which , underneath it all has been my main concern. Hearing my scarring had not gotten worse was great!! It had me thinking I could rule out ILD. But maybe not? This new specialist is in yet another city. I thought he'd just be sending her pics of my scans. But no. So how DO these specialists look at my scars?
Hes also adamant I keep taking my pantaprazole and sleep on a wedge.

Hello Sue!
Been thinking of you. Just got results from my latest ct scan and pulmonary function test. The function test was "great". 6 min walk was "perfect". Lung scars are stable and were post infectious. They do not suspect ipf or anything like that. Im working full time but unfortunately not in my chosen loved field of health care. Dr suggested getting out as hes not sure how strong my immune system is and care homes and hospitals are the germiest places. So I was working with handicapped adults run by staff but not enough hours so I do that and work at a major supermarket. I'm always on the run. And doing a lot of stair work. No passing out nor dizziness. Respirologist still wants me to lose 40 lbs but 60 are off now. The ground glass opacities and nodules are gone. I did catch a cold but had no breathing problems. My hair is slowly growing back. I asked the pulmonologist if taking collagen is safe but he admitted he didn't know. I was taking it for 2 years before my pneumonia and it worked wonders. My gp didnt know either.
Does anyone know if collagen is safe for lungs that have had a beating but come back?
The last time I took my 02 Sue it said 98%. I then put it away permanently. THANK YOU for all of your words of encouragement especially when I was in panic mode!! 🙏🙏