Just keep swimming

Today is a bad day. It is one of those where I feel like I fight for every breathe. The heat isnt helping.

Yesterday, I had promised to spend time with mum and take her out, which meant getting up in the morning. We had a good day. Went to a shop with a garden centre type thing and craft centre, so we were able to split up and both get something out of it. We then had a picnic in the car overlooking a lake.

We were watching a swan with 9 babies. That must be hard work.

I got a lovley bed spread, that I am dying to put in my room, but I wont until I get to tidy it properly.

Last night, after tea, I sat on my bed with my laptop as I normally do. Now normally, I browse around and catch up with people till about 1 am ish. But not last night. At 7, I found myself falling asleep. I meant to sort out my tablets and run my neb an such, but literally had no energy. I must have fallen asleep as my dad came up for a shower at about 9ish and shouted to ask if i needed the bathroom. I literally crawled to the bathroom, tipped my meds down my throat, turned on my humidifier and collapsed back to sleep, not fully waking till way after 11:30 this morning.

I was literally dead to the world.
Unfortunly, I still feel exhausted and my lungs are shouting at me for sitting still too long, Every breathe is makes my lungs burn and I know I am avoiding using the bottom half. My shoulders ache and ribs sting.

I am doing all I can Lots of nebs, antibiotics, lots of fluids. I have spent the last hour on my bed, nebs on full, humdifier on, fan on. It is exhausting. I want to stay in this position for the rest of the week. Not have to move. But alas, there are things to be done. And I have to be social tonight. So instead, I shall take the painkillers and hope that they wont sedate me to much. And hope that the antibiotics kick in soon.

And that, they can hurry up and change my diagnosis from suspected, to confirmed. Not that I want to have any type of lung issues confirmed, but perhaps, once they are, we can begin a treatment plan. Get rid of infection every other week and stupid breathing crap. I am booked in for a high contrast CT next week, so perhaps that may help things.

Maybe I should just quit complaining at this point. I mean, I moaned last week that I had a mans deep voice, but this week it is little more than a squeak and very hard work to get out.

And apart from that, I just need the ability to explain things to mum. That yes, there are things that need doing, but just like when she is on her bad week and is unable to do them, I to am at that point and unable to do half of what I need to. Its so frustrating. gah.

pain and purpose

I dont know, I have been wording this entry for a while, turning it over in my head and rewording. Coming up with the right words and forgetting them soon after, coming up with hundreds more words until it turns into a a jumble of letters that make no sense.

When I  started blogging, my whole purpose was in hopes of find people with similer stuff happening to them. I knew it would be a long shot as things seem to never go the simple way with me. Along the way, I have met many many people. Some I have related to so much it has been like reading my words, some have had smilier things in their life, some have annoyed me from the start, some I have liked their attitudes and wordings of things, but soon grown aggravated when they moan over about the same things or kick up a fuss at small procedures that are meant to help. Many I worry about. What the future holds for them and how will they deal with it. I mean, if they cant undergo a simple outpatients procedure how on earth will they deal with a transplant when the need arises. The funny thing, most of these people are complete strangers to me and always will be. But some of them, I will never forget. Those are the ones I admire most and the ones seem to be the ones who keep getting taken away.

Maybe I am naive, maybe its due to my transplant experience. I spent a long time being bitter about transplant. Mine was a little different to most, and while others grew sick beforehand and watched their lives slip away despite their best efforts to keep in control of it. Then they went through transplant and suddenly everything improve. With mine, the way my mind tried to rationale, was that I was perfectly fit and healthy.I was 16, never take any medications accept the very occasional antibiotic, hadnt see a doctor in about 4 years. The next thing I knew, I got out of hospital after transplant and suddenly, I was faced with so much change. Doctors every week, stacks of pills, endless lists of things to adjust to it. It was a big change and I hated it every step of the way asI fought many daemons off my back. I lost my friends,my independence, my energy, my personality everything, all in a few short weeks.

I didnt like the person I had become and I didnt want to know anymore. I wanted to burry everything under the carpet and pretend it hadnt happened, go back to my old life and forget everything.

When I started getting sick with my breathing, I began reading about,doing research, finding other people wanting to know as much as I could.

I never really considered the consequences of this. But as time goes on, I see these people conquering great things, getting better and my heart beats with joy seeing them do the things they alway wanted. But, then something clicks and they begin to go downhill. Before I know it, sad news is passed on that they are no longer restricted by anything, that they have left this world, this pain and gone on to somewhere else.

Everything begins to hurt, to feel heavy. I may not have been close to them, but it still hurts each time some one goes.

I mentioned in my last blog about Bree whose blog I read having gone from us.
This sadends me, but more so out of selfish act.
I came across Breesj ournal a long time ago, I think through a transplant forum. I immediately fell in love with her writing, her style and attitude never ceased to make me smile and her happiness came across in every post. I knew that she had hada lung transplant, but could not remember the reason for this.

After she hadnt posted for a couple of weeks, which was odd, I went to check her blog and something caught my eye. In her about me section, she mentioned having had a lung transplant due to Bronchiectasis. My heart skipped a beat and my breathe caught in my throat. This is what doctors had been queering with me, this is what I had been searching for answers to and the best answers I could ever get, were right under my nose.

I knew Bree wasnt well and so I hoped for a speedy recovery for her, checking in twice a day just incase she had posted. I had thousands of questions going through my head that I wanted to ask once she was better. I hoped she wouldnt mind answering me, but from what she wrote, I didnt think she would.    

But now, I cant ask those questions. Her time is up and not because of the lungs. Sadly, the lungs she got worked brilliantly, but some mystery disease was causing her body to attack itself, especially the brain.

Its sad losing people. I know how fragile life is, I have had a lot of very near misses. The experimental surgeries promise nothing. But I know I must continue to move forward no matter how slow the place or how steep the incline. But, right now I guess, it just leaves me questioning the balance of finding people to relate to against the risk of losing them.



http://bree-theblogblog.blogspot.com Bree, I hope you are having fun and kicking some butt wherever you are now.

Final destination, going insane and a new diagnosis

Why is my mind never simple? Why do things not make sense. Its kinda of like looking at an optical illusion, perhaps I am too close to it all to actually see what it is.

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?