Do you remember seeing that film Final Destination years ago? (Spoilers follow, but hey its an old movie) Basically, these kids 'dodged' death, but death kept trying to come back and get them anyway. It feels kind of like that sometimes.
I'm not making much sense.
Basically, since THE incident, things have not been right with me in one way or another. Ok, to a point that would be expected, but anyone would have suspected the Liver to be the main cause of problems. When my breathing began to become an issue, I was passed around a lot so to speak. Breathing tests, that showed something, but could not be pinpointed. Constant infections and difficulty clearing my chest, hence why it actually took me so long to get out of ICU in the first place. At first they put the infections down to the anti rejection meds, but as the doses of them lowered, I was still just as susceptible.
Then they decided to blame having had a thoracotomy, with parts of my lung removed as well as closing up of the diagragm. Not to mention the previous ARDS. But why the wheeze and the stridor? So then they decided to go with Asthma, but the medication didnt help. It was then I was referred to the ENT.
Now, bear in mind, this isnt over a couple of weeks, were talking years to get to this point, with jumps from one thing to the next. ENT gave me the diagnosis of Tracheal Stenosis. After not getting any relief from the surgeries they tried, They decided that my problem was to far down for them and that I in fact needed a Thoracic surgeon, not a respiratory doc or an ENT.
So I saw the Thoracic, and they tried to help, but all they could come up with was stents, which caused more problems, so we mutually decided to give up and see how it went for a while. I was still noisy and out of breath a lot, but I was fed up of being a patient and was in the midst of training in Nursing.
A couple of years later, my breathing was getting more labored and I was still getting frequent chest infections. But my main issue, was that, the stuff on my chest, was so thick, that I would often cough and virtually choke on it, having to guzzle down large amounts of water, just so I could get air in again. My GP sent me back to the ENT, who then decided to team up with the Thoracic and have another look. Then this whole ordeal began with the collapsed trachea and so on.
Jump forward to now. I have had 'radical' surgery to fix my trachea, yet I am still having issues. My new ENT says that my trachea is getting better, but I am still struggling and I dont know why.
So, I had a follow up on Tuesday morning with the respiratory docs from my last Pneumonia bout. I asked lots of questions, but the doctor, was reluctant to go very far with me. In his view, he can order the tests to find out about my breathing, but it will only show what we already know, that I have a narrow trachea. He said, that I spend a lot of time with health care professionals and he dosnt want to step on any toes so to speak. He flicked through some of my previous tests, and found a CT from 2009. He said, that he thought he could see some signs of bronchiectasis. This is when the bronchus collapse. He then discharged me as he felt there was nothing more he could do and I am under a lot of other people anyway.
So, I of course come how and investigate bronchiectasis. It causes:
The most common symptom is coughing up phlegm, often in large amounts, every day. This is very tiring and many people find it embarrassing. Even taking this into account, people often feel very tired and have a lack of concentration.
80 per cent of people with bronchiectasis also have wheezy shortness of breath.
Hmm, sounds familiar.
So, I wanted to email my ENT surgeon anyway, as I could not put into words, how I was feeling when I saw him on Monday. He was hopeful on Monday, that things are settling down and that the time between surgeries will get longer. Which is great, it really is, but what I wanted to know, is would my breathing also improve during this time? At the moment, at best, I can still get out of breath just pottering around the house and I am exhausted all the time.
I dont think that I got a clear answer on this, but he did mention in reply to me, that if I felt that I was still severely limited, then perhaps another open procedure (but smaller than last time) would help. Or perhaps trying a stent again. Now Stents scare the hell out of me. I have had one respiratory arrest and far to many close calls due to them. Respiratory arrests are scary as hell, especially when people around you dont believe that you cant breathe, as your o2 sats are fine, till they come back and realize your thrashing around the room with not a clue on whats going on due to CO2 build up.
But the surgeon promises me, that there are more types of stent that my airway my like more. And I am not sure on the open procedure.
But then, my mind still races to, is it the trachea? Is it the thoracotmoy? is it the bronchiectasis? Is it something else all together? Ok, I know that my breathing isnt dire so to speak, but considering all the docs keep saying that my breathing should be fine, it isnt. Perhaps I am unfit, but I dont think I ever got my fitness back after transplant. Surly that would have happened?
You see, I worry that doctors are not listening to me, that perhaps they dont believe me, when I say my breathing is really getting the better of me. But then, I stress the point and they listen and make a suggestion. So what do I do then? I worry that I am exaggerating, that perhaps I expect to much.
I dont know. I have never made anything up medically wise, yet it is always a fear of mine that I wont be believed. But, I was promised to have the breathing of an average person my age, which I dont have. So my mind comes back to why.
Argh. I need someone to take over. I need someone who will look at the whole picture. Someone who knows exactly what is wrong and why and how to fix it. I need someone who is 100%. I need to stop trying to be the doctor and I need to stop trying to diagnoses myself. But then, if I had stopped trying to find the cause a year ago, I would still be trached right now with no voice.
It just drives my head to distraction. It goes round and round and I lose myself in theories and explanations. I pin my hopes on a diagnosis in hopes that a cure will follow. Then something else comes up and I am lost again.
And its driving me insane. I need to hand over my medical care, but to who, and what becomes then?