New and undiagnosed

Yes Sue I have to put my scary toy away. But the weirdest thing was....I've been reading on Google over and over that anxiety can cause 02 saturation levels to decrease. Even his nurse said yes absolutely! When I asked him? He said absolutely NOT! Who knew?
Anyways, I forgot to tell you I have a sliding hiatus hernia! So he did ask about my medication for my GERD and I said it was Nexium. He asked if I had any breakthrough heartburn and so far I dont but a little bottle of 14 pills here costs $25.00. I'm wondering if a prescription would yield more pills and cost less. He said dont eat anywhere close to bedtime. I do that anyway. I have breakfast about 9 am and dinner about 3:30 so everything is digested well. He also said lose more weight AND get on a low acid diet. Lose the chocolate, caffeine, onions, garlic, tomatoes, pizza fried greasy food etc which I've been doing anyway to keep my body healthy. Except I do love tomatoes and salsa so that's not fun. I was trying to ask about certain foods like is ice water bad for the lungs, and I miss my yogurt, my protein powder and my cottage cheese and are dairy products really that bad regarding mucus? But he said he only does lungs, not diet so to ask my doctor.
I was only asking because I think this situation made my doctor so nervous, that when I have any lung related questions he says to ask the pulmonologist! Anyway, the pulmonologist said for my next visit we will do the 6 min walk, the spirometer, the breathing tests. And he will keep up my ct scans every 3 months till hes satisfied they are all healed. Thank you for asking Sue. I'm not at all familiar with hiatus hernias so I know nothing about if theres any no nos to owning one of these lol!!!

Here's how I would look at it. "Okay, I had a really bad and unfortunate case of undertreated pneumonia.. l ended up getting really sick, intubated, and scared to death. Awful! But it finally got the attention it deserved.
Now, I'm getting stronger, they have looked at my lungs twice and they are improving. My life is getting better, the pulmonologist can see I'm improving. Time to push myself gently and see how healthy I can get in the next 4 months..."
But that's me - having survived heavy metal poisoning from faulty hips - lost most of my hair, had 3 surgeries, developed tremors, was days from having my thyroid removed when they figured out it had reregulated itself. And a multiyear lung infection with many medications and horrible side effects. (At my last visit, after 4+ years of visits every 3 months, CT scans and sputum tests, the pulmonologist said "I'll see you in a year unless you get sick again")

How do you feel about waiting 4 months? Are you getting stronger? Did you put that @#$g pulse-ox away?
Sue

I had a hiatal hernia for over 10 years before they operated on it. I had 7 ulcers in my throat due to GERD for many years and could feel when they were getting worse or a little better (never fully healed until after surgery and now are scar tissue). One of my triggers for the GERD was gluten. I didn't fully cut it out of my diet, but had to be aware of how much I had in a day. I finally had enough when I was throwing up on a regular basis and asked a doctor about it. Other people that I know have few symptoms before having the surgery. I had become so sensitive to some things like mint. If anyone was near me on the subway or in the same room with me and chewing gum, I would be sick. I have figured out other flavors for toothpaste (thank God for Amazon).
My surgeon said that I had a very large hiatal hernia (over 1/2 of my stomach would go above my diaphragm). I had my hiatal repair 5/4/2021 (1 year before my lung transplant). However, I found out recently that they really only have 1 shot fixing the hernia and if something goes wrong it is hard for them to go back and fix it.
I hope that you are able to resolve all of your issues.

Hi Sue, sure I'm ok with waiting 4 months and physically yes I'm getting stronger. I take the pulse ox out when I walk. In Sept during my walks, my sats were 94% and pulse 113.
Here we are in January. I still walk. 02 and pulse are still the same.
I'd hoped my sats would be higher during walks by now. I'm up everyday whereas I used to sit and watch tv everyday. Other than that the ox is put away.
I'm also losing my hair. I guess I'm afraid theres something they havent found. I suppose I figured I'd be ready to work by now. I cant believe what you've been through. Unreal. I appreciate your taking time with me. I'm really hypervigilant since this happened and I hate it. Hugs to you. If you need to get stern or tell me things I dont want to hear, tell me anyway. If you think I'm being impatient, tell me. Or going overboard obsessing about my 02 then tell me that too. And thank you!
Yvonne

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

Chickytina
Was it GERD that necessitated the lung transplant?
I'm on pantaprazole and its working well. I mistakenly thought the PPI meds took care of the regurgitation as well as the acidity of it. Nobody told me different. But apparently the fluid still comes up? I eat way before bed and sleep on a wedge so I've not been further bothered by fluid or acidity. I was so looking forward to sleeping flat again but I guess that's a no. I'm learning as I go!

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