New and undiagnosed

Hi Yvonne,
The six minute walk test is simply that. They put a monitor on you and you walk on flat ground for 6 minutes or until your oxygen level falls below a certain level. By the time they gave me this test (months after I started seeing him), I was able to do only 3 minutes before my oxygen level went to low. This test was repeated every so often after the first time.
When I went for the pulmonary function test (the box), the person that gave me the test told me what to do and I just did it. When he told me to breathe normal, I breathed normal. When he said to breathe fast as if panting, that is what I did. I didn't need to worry about what to do.
I never had the spirometer (mechanism with the ball inside) until after my first hospitalization.
However, the first visit was just them getting a history, taking blood, looking at my nails (I have clubbed fingers, which is a sign of pulmonary issues) and listening to my lungs. Not all pulmonologists do the blood work themselves.
My son saw a different pulmonologist, due to insurance reasons. On his first visit, the doctor listened to his lungs and sent him for chest X-rays and blood work. On his second visit they did the pulmonary strength test (measures how much you can inhale and exhale) and sent him for further blood work (allergy tests).
When I asked the pulmonologist about the pneumococcal vaccination (I am younger than the age where everyone should get it), he said yes and told me which one to get. So this is a great question for him. Another good question would be "what is next?" or "what should I expect?"

Hi and thanks! I just had a ct so he has the results, I've done the overnight test so I'm already on a cpap. Instead of stopping breathing 46x an hour I stop 1 or 2 now. I had a bronchoscopy and had my lungs washed in late Sept and it showed nothing. I walk 6 mins and my 02 is between 94 and 96. (I do it daily for exercise). When I was in hospital, the r/t 6 min walked me to see if i needed home oxygen and he said i didnt. And i had the overnight oximeter test and 02 (monitored by the cpap dr) and averaged 94 which he said was good. Lol sounds like I'm halfway there!

Well Sue it looks like I am a survivor of ARDS.
When i had GERD i choked on the acid in my sleep at least 3x a week. All this acid went into my lungs and I'd wake choking. I could hear it gurgling in my lungs. I coughed it up as best I could.
The pulmonologist feels it was aspiration pneumonia from the GERD. I'm very lucky and so grateful. My next step is a low acid diet and more weight loss. Exercise of course. Next appt he will do the physical testing. Then another ct in 4 months. Man do I feel relieved.
He said put the oximeter away! Lol

Wow! Great news indeed! And may I say, I'm glad he told you to put the toy away.
Did he talk about other GERD precautions?
Sue

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!!!

Hi Sue! My pulmonologist visit was almost 2 weeks ago. I was not sent for xrays or bloodwork. It took him 15 seconds to listen to listen to chest and lungs. Asked how far I could walk (from one end of the building to the other) scribbled some things and said another ct in 4 months and next appt we'd be doing the physical tests. No ones contacted me since that day. It seems (and I guess its good) that because no one was in a rush to get me further tested with anything I should wait for them to contact me? Or maybe I've been overlooked?

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

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!