Archives For lungs

The 9th of May.

Second catch up sleep completed. I reckon I probably have one left before I am back to normal, but that won’t be tonight because I have to get up at six for ridiculously early lung function tests tomorrow.

I wrote up a blog post this morning, but I haven’t sorted out the photos and stuff so it is yet to be published. I was upstairs getting dressed when I got a text from Mommy warning me of the imminent presence of the window cleaner (she had just gone out so saw him further down the road) so I dove behind the bed to protect my dignity. Turned out that wasn’t necessary because he didn’t appear for another forty five minutes.

After lunch, I went with Mommy to pick up Grandma from lunch club at church, then after dropping her off at home, we went to the QE for my follow up with Mr. Kolli. He had a look at my lashes which look good, although the right eye will need to be checked again in a couple of months. He also checked my pressures which had gone up to 25/26 which is bad. Have to start doing steroid drops once a day and in a month he’ll check them again. Hopefully I continue to be asymptomatic, I can stop the steroids and my pressures go down. If that doesn’t happen, I’m not sure what the plan will be. My eyes explode.

The 10th of May.

Well I definitely did not have a great sleep because just as I was dropping off, I heard a dripping sound. The rain was coming through my ceiling. I had to go and wake up my parents, who did what they could (at midnight) to stem the flow. Thankfully the rain stopped and has stayed away, but it’ll still need fixing because it’s very near my head.

Then I was up at six for my lung function tests. We arrived at hospital at eight, and I saw the same girl as I did in November, and I had to get in the box again. I think my lungs have got to a level of shitness that requires a specific test that can only be done in the box. I was in there for nearly an hour because I had to do two of the tests three or four times, plus she is nice so we were chatting.

I then sat and read my book for an hour and a half while Dr. Thompson saw the patient before me (for ages). When it was finally my turn, I was in there for about ten minutes? My results are the same as six months ago, so that’s fine. We talked about him putting the kibosh on my second liver transplant and everyone saying I would die, but five years later here I am, no second transplant, no more superbugs. He was glad I am not suing them for emotional distress. As if I care; I am just glad to be here. He couldn’t believe it was 2013. Here I am, still defying the odds. Having conversations about how long my 23% will keep going for. We don’t know.

The 16th of March.

I have had a very productive day!

This morning, I wrote up a blog post, then got back to my jumper until the post came. That’s because he brought my extra wool to finish the socks with (which Simply Crochet magazine have agreed to reimburse me for because of their misprint, hooray!) so then I got back to them.

After lunch, I went back to the gym got a rather longer session than Wednesday, and I’m sure I’m going to feel it tomorrow. I did tbf circuit Karen came up with, three sets of 12 reps on each machine, plus some floor work. I’ve discovered my lungs don’t like dumbbell crunches anymore.

I left just as the youths started to arrive after school, so I timed it well. Can’t be going in any later than I did today. And back at home, I have finished the socks! I am hoping this pattern will work in the future with other wools too. I’ve tried many in the past and none have worked, but finally I have had success.

The 17th of March.

I am in much pain. All of my muscles are sad. I am waddling like a penguin when I try to walk and that’s after overcoming the discomfort that comes from getting out of a chair.

It has snowed off and on all day, so Sadie and I made the call early doors to postpone our cake date this afternoon. That meant I could stay in my pyjamas until after breakfast, then I put on my knitted trousers and giant snuggly Zara jumper that sheds but is ever so cosy.

Once dressed, I spent the rest of my day crocheting the jumper. It is very tedious, but progress is being made. I think I could get to the end of the body by tonight, depending on how tired I get. I am really rather sleepy but it’s too late for caffeine now.

I watched some of the Scotland/Italy rugby, then when it was our turn, I decided to watch Guardians of the Galaxy 2 because I thought it would be more fun than watching Ireland thrash us. I was correct. I nearly cried when Yondu died, but was able to hold it together. I’m glad I’ve seen it, or I think I might have been very confused about some bits of Infinity War. I am Groot. 

 

Since my appointment yesterday with Dr. Thompson, I’ve been feeling pretty depressed. I know that physically, since the pneumonia and collapsed lung, I have found it hard to do much more than walk a few metres without struggling for breath, but to now have it confirmed that there is no hope of recovery is hard to hear. I had just got used to one standard of disabled life, and now I have try to envision the rest of my life again in this new version. I am tired of grieving for lives I thought I’d have.

It’s difficult when I spent months this year so chained to oxygen, having to exist as a blatantly, visibly sick person, and I hated it. Truly, despised it, because the first impression I gave was one of illness, and my appearance inspired pity in strangers. I cannot bear the idea of living a pitiful life. The very opposite of every intention I ever had. And I know that the next rung down on the ladder of lung disease is one where I am constantly adorned with plastic tubing. That scares me because living when it was so much effort to even brush my teeth was almost intolerable, and I don’t know if I have the strength to fight through every exhausting moment being miserable. I had rather decided that when it became impossible to be happy the majority of the time, I would find a way to end it.

But in the past, even when I have felt darkest, most lost, I still wanted to be alive. Or at least, I didn’t want to not be alive. I didn’t want to miss things, and I didn’t want to be the cause of the agony of death that I’ve felt more than enough times for any normal lifespan. I know I am most likely to die first in my family, but for it to be self-inflicted would be crueller than is necessary.

I saw Murder on the Orient Express today. There is a notion in the story, something I have thought about before, when we lost Dean – that when one person dies, there is a ripple, an avalanche. Everyone around them dies too, at least a little. I can’t instigate that kind of pain, not on purpose. I think there will be moments in the future in which I don’t want to be alive, not right then. It has happened before. But there are also always things to come that bring me happiness. Maybe I can adjust to a different life. Again. I just think that while I am able, I ought to endeavour to enjoy the time I have, whatever way I have it. To try to improve the lives of people around me, and use my voice to champion the things that have kept me here thus far.

Even when everything seems merciless and wearisome, for as long I can hold on to some strand of hope, I won’t let go.

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The 18th of October. 

I think I am getting better? Very slowly. Like, I am definitely coughing less. I haven’t been quite as phlegmy today? Ohh progress is glacial. 

This morning I did a blog post, and did some more phoning to find out what’s going on with my Andrew appointment. Turns out Christine hasn’t had anything about me, but because I’ve made contact with her, she’s going to find me-related paperwork and wave it in his face so he tells her what he wants. 

After lunch, back on the crochet. Starting a Christmas present (eee!) – have to start thinking about that. Mommy and I have booked our train tickets for our annual London Christmas shopping trip. I hope I can wear more of my festive jumpers this year. 

My left eye has been protesting all day. So looking forward to going to bed and closing them. 

The 19th of October. 

I am just exhausted this evening. It’s not like I’ve been out much, or had a bad night, I’m just tired. Bleah. 

I spent my morning sewing beads to the thing I’m making for Heidi. Mommy had taken Alison to her physio appointment, and must have done something to the door, because when the veg man arrived, I couldn’t open it. It shouldn’t have been locked, but I got my keys and tried anyway. Couldn’t open it. I tried everything but it wouldn’t budge. He put the box in the porch and I yelled out the window “Sorry, I’m locked in!” When Mommy returned, she couldn’t open it from her side, so I ended up having to open the garage and let her in that way. I didn’t have to walk much, but I could barely breathe. I know I’m not well at the moment but still…I think the pneumonia has probably damaged them permanently. I suppose I’ll have to ask Dr. Thompson in November.

We had trip to St. Giles again today to try some more sleeves – not going for made-to-measure just yet. I’ve got two – one that stops at the wrist so I’ve got a glove to go with it, and one that’s the same style as my other one, both in different materials. I’m not enjoying the glove; it’s so squeezy on my fingers. 

And my eye is bad again today. Can I rest, please? Let me rest. 

The 12th of October. 

I had my first reasonable sleep in weeks last night. As in, it didn’t take me hours to fall asleep. That might be because of how exhausted I was – I was too tired to eat even half of my tea. 

I woke up with a suddenly very tickly throat that wouldn’t abate unless I drank continuously. It cleared up once I brushed my teeth, but I couldn’t go back to bed. I had an appointment at the GP anyway – they wanted to talk to me about my latest letter from ophthalmology. Turns out they were confused about my prescription. He was actually very reasonable, and we did a bit of a prescription audit so it’s up to date now. 

This afternoon, I watched the new episode of Riverdale (yay!), and felt up to doing a bit more crochet. Another assembly job next. I never know how the cough is going to be the next day so we’ll see how I feel tomorrow. I’ve got a ticket to see Jayde at The Glee tomorrow night but I can’t see that happening with the way I am. It’s probably not a good idea even if I am feeling better. I’ve coughed enough today for my ribs to hurt and me to get paranoid that I’m going to pop my lung again. 

The 13th of October. 

Bleugh. I had another decent night, but I’m still knackered this evening. I’ll have had this for three weeks on Sunday. 

The cough has changed again today – it was really dry overnight and first thing, and as the day has progressed, it’s been constant phlegm. Wish it had been like this on Wednesday and I could’ve given the hospital a better sputum sample. We have another pot so if I’m still going on Monday we can take that in. 

This morning, I put together the doll I’m making, although I had to reattach the right leg three times because I just couldn’t get the angle to match the left one. 

Then, after lunch, I started on the clothes. It’s pretty straightforward so far, just long. It needs details though, and they will be tricky.  

Oh god I am so tired. Obviously no Glee tonight. I just want to sleep until I am better. 

The 31st of May.

My own bed is a beautiful place. I had such a nice sleep.

It has been a busy first day back in the real world! This morning we had to take Sam to the vet for his first set of vaccinations, then they were running so late that we only just had time to take him home before going back out to the chiro. Trine was not impressed to hear I’d been back in hospital for essentially the entire time since I saw her last. Today parts of my back that I didn’t even know were hurting needed working on. Such a mess.

We came home, had lunch, then I had to get information off Catalog to fill in a form about Sam because I didn’t have an ID sheet for him. His adopter was coming about half past two, so when I finished at two, I went to sit with Sam to say goodbye. He just wanted to sit on me, as always, and we watched the new Pretty Little Liars until the doorbell rang.

Well, they were instantly smitten. I was not surprised because he is lovely and there was no reason for them to not want him. He even stuck his tongue out, just to be extra cute. They were gone within the hour. I’m expecting a photo of him on one of their laps this evening.

Once they had left, I returned to the living room and watched new iZombie while doing Cats Protection admin. So exciting. Then this evening, Mommy and I (and my oxygen cylinder) are off to The REP to see some comedy to raise money for refugees. Nish, Joe and Tez are all on but I will not be hanging out because I am still a bit wrecked. Hoping they are all on in the first half because then I can go home.

The 1st of June. 

How is it June so soon? I have written off this year already. For the whole of it, I have been sick and swollen and in pain. I need the next seven months to be better.

Lots of little jobs to do today. Sorted out all the chargers and power packs to take on holiday, and put my iPod and old iPhone on to charge so I will have all the things to listen to in the car tomorrow. I spent my morning having a mini Agents of S.H.I.E.L.D marathon and putting all the posts I have written over the past three weeks up on my blog. Glad to finally be back up to date, although I need to write them all down in my hand written diary so they match. I still haven’t done the ones from March.

During our lunch, we watched the Bake Off Creme de la Creme final, and the military men won! We were very pleased as they were our favourites. Then we went upstairs to wash my hair and sort out my clothes that I’m taking away. It is not going to be particularly warm, so it will be a week of jeans and jumpers/cardigans.

Back downstairs, I painted my nails, but had to get Mommy to do my toes because I cannot see the outline of them clearly. I don’t understand why my eyes are getting worse again when the treatment seemed to be working. It’s not just that stuff is blurry, I’m really photosensitive and it hurts 90% of the time. At least my breathing is improving a bit – I’m only in 0.5 litres of oxygen now so I might be able to do most of the wedding without a tank at my feet.

The 6th of March. 

Good news: my lung has re-inflated and the chest drain is out. Bad news: my breathing is still very poor. I had about eight doctors round my bed this morning (Ben Sutton from respiratory, Sridhar Chaganti from haematology, and all their minions) to discuss what might be wrong with me and what we should do about it. My input was that a) if I’m going to need IVs for much longer, I’m going to need a PICC putting in, and b) I will not have systemic steroids because they make me suicidal. Thankfully, Ben knows Bryony because she is an asthma patient of his, so he was going to talk to her about a line, which made that easy enough. The steroids were to do with treating whatever is causing the inflammation, but I absolutely refuse to have them, especially at the doses he was talking about. Swabs won’t really help in diagnosing the problem apparently, so I’m going to have a bronchoalveolar lavage, which is when an bronchoschope is put down the airway, into the lungs, they squirt a bit of fluid in and then collect it to examine. I will be sedated for that. Ben said he has a list tomorrow and someone else has one on Wednesday but it hasn’t been mentioned again since this morning so I’m not sure when that will be. 

I had a really bad night, so when Mommy arrived with coffee, I was very grateful – such a sleepy bear. We had our lunches, then we had another lovely afternoon with a visitor because Philippa from the liver team came to see me, so she was here for a couple of hours, keeping us amused. However, when it came to be time for chest drain removal, she took her leave. 

That part was far less dramatic than its insertion. I had to do some deep breathing, and on an exhale, the doctor just pulled it out, then put a lot of pressure on to stop air getting back in and to help seal the gap. So far, it seems to be staying up. I have the most ridiculously enormous dressing, but at least tonight I can sleep on my side, the way I am actually comfortable, instead of on my back like a flipped over tortoise. If I get a PICC tomorrow, I will be back to full arm function!

I’m down to one litre of oxygen tonight, and I don’t feel good, but I don’t feel as bad as I did. Back to one day at a time.  

The 7th of March. 

Today has been one of conversations and making plans. No PICC or lavage but I’ll explain about that later. 

I had a very boring morning, and was about to bunker down for a nap (now I can lie on my side it is so much easier to sleep) when Ben poked his head in and asked if it was alright if he brought his medical students in, to which I replied absolutely yes I love furthering the education of baby doctors. A troupe of seven students came in and lined up along the back wall, facing me, and Ben had them try to work out what was wrong with me. Not the whole story, that would be impossible, but the answer they needed to get to was the pneumothorax. They could ask me loads of questions, and I did have to give them some background information so they weren’t completely baffled by some of my answers. Ben also asked them general medical questions that were not entirely related to me which probably did not help them on the right path. At the end, one of them had to examine me, at which point she found the dressing from the drain, and then they guessed pneumothorax! Then Ben got me to show them my liver scar except he was expecting me to have a Mercedes when I actually have a hockey stick but hey, they still learned something. 

This afternoon’s visitor was Bryony! She had seen my name on the referrals list and was like MINE THIS ONE IS MINE because I am too complicated. Basically, I can’t have a PICC because they go into one of my veins that is already trashed from lines, so she’s liaising with Andrew and Ben, because if they put in the kind of line she is thinking of, there are certain drugs I won’t be able to have because they won’t be within the pH range that will work. I may or may not be having the lavage, depending on my oxygen requirement, but at the moment it isn’t improving. 

I had a shower this afternoon, or rather, I sat on the shower chair with the oxygen on and Mommy essentially hosed me down with the shower and I scrubbed myself with a loofah. It was a very dignified exercise. It is nice to feel clean.

As it is now gone eight o’clock and Bryony hasn’t come back to me with a plan yet, I expect to hear from her in the morning. Unless the nurse tonight has some information that I don’t know about. Either way, I may have to delay my breakfast until I know what’s happening.