After such a jubilant previous post, this couldn't be any more different!
At my appt last month (with my brilliant LF) - the doc decided to double one of my immuno suppressants, saying my current dose was low.
Within a few days I started feeling very tired, broke out in ulcers in my mouth and throat and got insomnia. A week later I developed motion sickness which finished in a vomit. 2 weeks later after starting the drug, I had begun to feel better.
It was my birthday on the 23rd of July and some of my family and I went out for a meal where I have gotten taken away from many times since my transplant. Because of my insomnia I was awake when cramping started in my tummy a few hours later which led on to excruiating pain and vomiting all night.
I stopped by morning but slept for most of the day. Everyone else was fine. It was becoming obvious I was too suppressed!
I have had a little bit of mucus in my right bronchial tube ever since the transplant. Docs kept saying it was because of my join healing (old bronch to new lung bronchi).
I knew from previous bronchoscopies, that a previous nasty bug called pseudomonas from my CF lung days, was still lurking. I believe because I had been unwell for a few weeks, it was allowing the pseudomonas present, to start having a party. Again just like in the old days.
Fairly quickly my exercise tolerance was going down - I was having difficulty doing my usual
cardio aerobics and coughing. One of my zumba teachers noticed and started making comments so I had to explain to her what was going on.
I attempted a Body Combat class, and I felt exhausted afterwards - so I decided that long walks or gentle rides would have to be the go for a while.
On Monday the 1st of August, my right bronchi had become very thick with mucus and I couldn't move it no matter what I did. So I rang the Alfred and they were able to see me.
My lung function had fallen 7% - they had also discovered from a previous weeks blood test that my liver function levels had sky rocketed. So I had to withhold the med that had been causing all my side affects. I repeated the same blood tests for my liver.
I was given inhaled tobra, and was pretty confident that was all I would need to get back on track.
LT nurses rang me the next day to say my liver function was even worse so I had to go back in again
to do more blood tests. Had to rule out hepatitis and such even though it was highly unlikely. They'd be
in touch if things were worse or if they found anything.
I persisted with exercising, walking each day, but was feeling very tired. My poor muscles were also crying out because of all the coughing....I was no longer fit for coughing!! HAHA!!
I heard nothing from the hossy re my liver, so I took that as good news that things were improving there.
With the inhaled tobra, the mucus was clearing up but I could feel the infection had spread to my other bronchi and I could feel a few crackles starting in my lungs.
Saturday the 6th I woke with a temperature - I had been having sweats and chills all night and dreamed
of drinking lots of water. I went to the toilet and was having trouble breathing.
I rang the LT registrar and she said if I worsen, come in, or if I have another temperature overnight, to come in.
I had a rather lovely day planned - firstly catching up with friends, then my sisters birthday dinner that night, so after taking some panadol decided I could soldier on. My breathing was the worst when I had a temperature.
The next day, it was basically a repeat of my fevers, but my breathing was much worse. I was puffing like I used to before my transplant and my oximeter was giving some scary readings (oximeter reads the amount of oxygen in your blood). I didn't cough up much mucus.
Mum and dad were down anyway, for my sister's birthday, so after I had spoken with the LT registrar again to tell her my movements, mum and I went to the emergency department.
I got seen pretty quickly because of the LT registrar contacting the department before I arrived.
I've mostly ended up in a corridor because of it being so busy on previous occasions, but luckily
got a room this time. I immediately felt better being on the oxygen. Once I was safely in their hands, mum drove back to my house to get dad and drove back to Bamawm, planning on coming back on the Tuesday. They also took Andy home for me.
My sister Jo arrived not long after mum left, and she was wonderful making sure I had food and water - even doing her nurse duties and getting me a bed pan - haha!! Jo is a registered nurse you see, very very handy!
After I'd seen a doctor, (my favourite question, which I think they have to ask each time is "are you a smoker") they got me started on IV antibiotics.
I spent the night there.
Monday 8th of August
At about 7am, I was woken because they needed the room! So I was put in the corridor. I think I'd managed about 3 hours sleep.
I have earplugs and an eyemask, so I'm well and truly armed for noise and light these days.
At about 11am I was moved to trusty 5 East, but in the treatment room, as no room was available as yet. I didn't have a bed yet either, I was still on a trolley so my arse was sore....hahaha!!
I attempted a walk to the nearest toilet not long after I arrived and sent the nurses in a panic when I got back as I was desaturating drastically. I don't remember my numbers ever being that bad previously in the old CF lungs days!!
I eventually got a bed and was much more confortable especially my bum...haha!!
I saw the registrars but they didn't say much. Jo my sister came in again to spend the day with me.
Dietician visited, then physio.
Physio involves doing an inhaled nebuliser of saline to help break up any crap that may be in my lungs. This is followed by me blowing a tube into a large bottle of water. It is called Bubble Pep. Again this is to help assist move mucus. It also helps to open collasped airways. She could hear quite a few crackles even though I couldn't necessarily feel them. She explained that you can only really feel things in the main airways. Still so used to my CF lungs and being able to feel everything! Plus I guess some nerves may not have grown back either.
The physio had asked would I mind two work experience students watching - I said as long as they don't
want to ask me anything (cause I couldn't be bothered, too tired!!) and she said no, they are just here to watch.
Well I was just about to start my Bubble Pep when one of the girls left and fainted!! Code Blue ploise in the corridor!! Once I knew she was fine, I joked to Jo that "I'm fine, don't worry about me"...haha!!
The girl was very embarrassed poor love!!
The heady honcho LT doc arrived in the late arvo. They had spotted something in my blood cultures that may indicate pneumonia but it wouldn't able to confirmed for a few weeks. (not sure how it all works).
In the meantime, in case I had the flu, I was to be given tamiflu and kept in isolation. I knew it wasn't the flu as I wasn't sick enough, but it meant I got a room to myself so that was good. Hehe!!
Late that night I finally reached my room and felt a lot more confortable with my own toilet and such.
The remaining mucus I had was drying up very quickly from the antis.
Tuesday 9th of August
Didn't get much sleep due to one the IV's being at 12 midnight and having another fever at about 3am.
My breathing was terrible - was still an effort to just go to the loo on oxygen.
The marvellous Mator arrived (Mum) and I got her to help me have a shower.
My breathing seemed better in the afternoon.
Again not much sleep from another mild fever and an increased dose of prednisolone creating insomnia.
The docs visited pretty early and said they could lower the pred so that was good as I was dreading my diabetes going out of wack again and getting a fat face!!
One of my oral anti's was changed over to another intravenous antibiotic and my swabs for the flu came back negative (told yaaa). But the bad part of that was that I got shifted from my lovely single room to a shared room.
I tried a short walk (on oxygen) beyond my room but on returning was desaturating, so no more walks for the day except to the toilet.
Having said that, in the afternoon when I shifted I did have to walk and coped fine so it appears in the morning I am worse.
Well that is it for now -