Latest Pulmonary Function Test

My journey with respiratory failure continues. I wish I had better news, today March 18, 2024 I had a Pulmonary Function Test. Again my lungs have declined, you'd think after hearing the news so many times it would be easier but I'm only left thinking about what this reality truly holds. What life really means going forward from here. Today I did my PFT at a different location then usual, and man I wish I hadn't.

Being young and in respiratory failure really sucks, because I don't look sick. The technologist I had must’ve thought I was there for something simple like asthma.

I'm in my wheelchair, because it assists in my pain, fatigue, etc. The very first thing she asks me is if I can stand so she can get my weight and height. That's not all that unusual. Typically I say I can but I already know that information and just state it. Immediately she said "no I need you to stand over here so I can get your height".

 My leg decided that was the perfect time to spasm and shake like crazy, so all the while I'm standing there with half my body shaking and this lady not caring. She then drags the scale over and I stand on it still shaking, and holding onto the chair beside me. She got my weight, it's only 3lbs more then what I had verbally told her. Imagine that, clothes weigh something.

I than wheel myself over to the booth where the test is done. The tech tells me to place my bag in my chair. I tell her my bag can’t be too far and the tubing can’t stretch or kink otherwise the pump will alarm. This tech proceeds to ask if I can disconnect from my tube feeding bag like that's an inconvenience to her. I explain that I couldn't disconnect from it because it was giving me nutrition and I was on continuous feeds! Like I'm so sorry that's inconvenient for you ma'am! I like having food and being fed just like the next person, jeesh!! What is so hard about that. If this were a medical test like an MRI etc then yes I would absolutely disconnect but for this, there’s no need here.

Don’t get me wrong, it was more of an opportunity to educate here and teach about tube feeding and why I couldn’t disconnect, but the person was unwilling to learn. The disinterest was strong with this one! You can’t win them all. She’s not a nurse but someone who does pulmonary function tests, but people with tubes exist and I hope she’s more compassionate to the next person and doesn’t ask them to disconnect or they tell her no, straight up!

Anyway….

We finally move on to the test part, and she's explaining what it is and I get started. I get two done, and this is where things go down hill, it does every test I do. My lungs start to fatigue and get tired. I can't repeat things but so many times. This tech was like "we need to do this specific part of the test 10 times and this specific part shows if you have COPD or asthma". I do it another time, before I can even start she stops me because I didn't do it right.... and again... and again... I was on the verge of having a meltdown. Tears were in my eyes, of ALL the times I have done this test, I have NEVER had to do this part 10 times, and I have never been treated in such an awful way. I sat there and I loudly almost yelling at her said "I don't have asthma, I'm in respiratory failure!" The look she gave me. She tried to change her tone after, but the damage was done. I didn't even complete this part with succession more then TWICE! So here we go again!! Lets just say I did it a total of EIGHT times before she decided to move on! This was part 1 of 4 of the PFT.

The second part of the test is always easy, and I don't have to repeat it as much. This time the third part was hell. It was almost like she got upset that I couldn't do this part. Last time it took 3 techs to make sure I was doing it correctly and the repeated attempts wasn't me not doing it incorrectly but my lungs were just too weak to do it. They were really sweet about it and really encouraging. I was able to do it once with success, but this time there was nothing. It didn't surprise me considering how last time went. This time I had to repeat it as if I was doing it wrong and was told "suck in hard and fast, like you would a straw or a thick milkshake" that analogy is great, if there wasn't 3 steps before that part that would tire my lungs out making it impossible for me to suck in hard and fast failing the MOST crucial part of the test. Besides, my lungs were tired from all the past attempts from the other parts of the tests.

It was almost like this tech was getting tired of my shit. She would sigh and say “well now we have to wait 1 minute for the machine to recalibrate before we try again.” And I would try again and guess what, NOTHING! And again she would go “we need to try again, follow my prompts suck in like a thick milkshake really hard. Now we have to wait 4 minutes.” We sit and wait and again nothing. After 4 tries she gives up. I failed part 3. While she was frustrated with me, how do you suppose I felt. I really thought I had done something every time. Every damn time I really thought some numbers would appear or something would come from my effort only to find nothing. Don’t you think I’m a bit frustrated at myself, at my own body because that tells me ONE thing!

I had to take 4 puffs of Albuterol before part 3, this is to see if I have a positive reaction and it improves my lungs and so a repeat of the first part of the test is done. I know WHY!?! I don't have a positive reaction to Albuterol, it doesn’t help. Same as the first part of the test, but here we go again. Repeat and try again for 8-10 times until we get it right. This was the WORST Pulmonary Function Test ever done since I've started this journey in 2019! I guarantee I’ll never do my test there again.

After that fiasco I met with my doctor. Thankfully he's amazing, I feel a bit bad because I took up so much of his time. Like A LOT of his time, opps. If your doctor is ever running an hour late, its because of me, I’m at fault. I’m sorry. I like to pick their brains and talk, a lot.

We looked over my PFT and of course how the numbers declined and what that means. Muscle fatigue is no joke and for me it's a matter of not being able to breathe. I can sit and do stuff, I can walk a short distance and I do try and make an effort to walk as much as I can. I also know pushing myself also puts me at risk.

Anyway more about my appointment. We discussed how my lungs are declining due to neuromuscular disease then EDS or Dysautonomia though those can also effect my lungs too which aren't great either. If I'm getting short of breath doing tasks and my lungs are getting fatigued more easily then where do we go from here. What do we do?

So my tests now are worse then my tests that I had done prior to my trach. I'll let that sink in. What we thought was an emergency, wasn't. I went through all that trauma, and it wasn't necessary. I'm still trying to process all that!

I'm needing to have some tests done and start the process of getting oxygen and possibly non invasive ventilation again. I know the awesome Vader mask! I actually still have mine from 2019. My doctor did bring up possibly having to be trached again way down the road. I told him that is NEVER happening ever again! I know my lungs will get to a point and will my life, but I refuse to ever be trached again. That trauma was a one time thing, and I will never do it again. I'll go out peacefully on my own without an extended warranty, thank you.

I wish hearing the news got easier even though 4 weeks ago I knew my breathing changed. It just confirms what’s really happening. So now what? Where do we go from here? I'm not entirely sure. If my lungs decrease every 6 months, how much time do I have?

Make your footprints matter. Don't take your health for granted. Remember that whatever you are going through, you're in control of how you react to it. Whatever good you put into the world today, can be the change we see tomorrow!

Fight to breathe another day 💜