Archives For lungs

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. 

The 2nd of March.

I woke up this morning and it was clear that I needed to be in hospital. I had to have the oxygen on 3 litres when at rest which is far from acceptable. We talked about what was the best plan – do we ring haematology? Email Dr. Thompson? Or just go to A&E? We came to the conclusion that it was best to ring the CNS team, who got back to us very quickly and said to come up to the ward immediately. I finished my coffee, Mommy packed a bag and in we came. 

Jo, a nurse who has looked after me before and knows me, came and did my obs, and the first of the many doctors I saw today came. His name was Aran (I don’t know how he spells it so I am making an assumption) and we had a chat about my symptoms, then he needed to take some bloods, and for me to take off the oxygen for half an hour so he could do an arterial blood gas to see what the oxygen levels in my blood were like. He had a tough time getting the artery because mine are so small and elusive but he got there. It was not so terrible, but I will bruise.

He then went away, and after a while, he returned with Paul, one of the regs who saw me before Christmas. At rest, my sats were fine, which I found ridiculous but that was what it said. I suggested we do another blood gas after I’d walked a bit, and see what that was like. We had to leave me off the oxygen another hour to do that, so just after half past one, Aran came back with more needles and sent me off on a walk up and down the ward. I had to stop before I got to the end, but I finally got back to him, and felt like I might die. What was worst was that I couldn’t put the oxygen on to recover, and I couldn’t move or speak, just had to let him jab around in my wrist and after some time, elbow, to get the second gas. The other investigation that needed doing was a chest x-ray, which also happened very speedily. Everything has been so efficient today! So I went down to x-ray with a nurse and we had a nice chat about how we both look young (she said she was 40 which I do not believe) and then we couldn’t come back up in the lifts because the fire alarm was going off. Thankfully it was not a proper fire, and we returned to the ward.

Paul and Aran came back with looks of great excitement on their faces, and Paul asked “Have they told you?” Very much not. It appears I have a pneumothorax! That’s a collapsed lung, basically. No reason, just another stupid thing that my body has decided to do. 

To fix this, Paul had called the respiratory team, and a consultant called Ben Sutton came to see me. His opinion that the best thing to do would be a chest drain, because just aspirating with a syringe might not work and if I went home and it collapsed again we’d be in trouble. I agreed with this, and also mentioned that Dr. Thompson might want to know about this. He then came up to see me, and was not impressed that the ABGs had been done before the chest x-ray. Nevermind! 

So, chest drain. We had to wait for a respiratory reg to come up to do it, and Dr. Thompson supervised. We went through to a tiny side room, the purpose of which is something I am not entirely sure of, and I sat up on a trolley with a sheet across my front while Dr. Lugg, the reg, gowned up. First, he cleaned me, then poked me a lot between the ribs to find the gap he needed to get the needle in. He stuck a sticker on so he knew where to go back to, then I had lots of local anaesthetic around the site. There was a small cut, then there was a needle, and a wire to guide the doctor, some tubes, and a lot of pushing to get the tube into the place where it needed to be. Then he attached a very large tube, and many bubbles poured out of me. It suddenly made sense that the rumbly sensation I have been feeling was bubbles in my chest, and now they are on their way out. I could see them moving up and down the tube as I inhaled and exhaled. 

It doesn’t feel great, but I’ve had worse. The drain is firmly attached to my side, and the movement of air is slower now. I’ve had another chest x-ray to check the progress, which showed that it’s improving but hasn’t fully reinflated yet, which is how it feels. Dr. Thompson suspects I will need the rest of the air to be actively suctioned out because it might not all come out on its own. I’m sure that’ll be fun. While I was waiting to come back to the ward, I was talking to the nurse who was with me, Craig, and we were comparing physio stories, because he’d had a car crash which resulted in a brain injury and he’d been paralysed on one side, so he had to learn to walk again too. However, he was a very good physio patient unlike me, who would pretend to be asleep. 

Mommy didn’t really want to leave me, but by half past eight there were no signs of me having a bed, so I told her to go, and shortly after that, I got moved! 

Now I am in a cubicle (my favourite way to be) and going to the bathroom with the drain is interesting (I have to buzz someone), but I’m alright. I don’t think I will get much sleep tonight – lots of podcasts, maybe some Netflix. I need to plug my chargers in and get my pyjama top on, but I don’t need assistance for that. I do hate being so dependent. 

The 3rd of March. 

I am in NHS limbo. It has been a day of waiting. I did get some sleep – I don’t know what time I dropped off but I woke up at 9 in a rather curious position but at least I had some rest. However, that meant I had missed breakfast, so I asked the nurse for some bread and marmalade, and that had to do. It was not dissimilar from what I’d have at home anyway. 

I spent my morning wrapping myself up in my blanket and sheets, trying to get warm, and not quite falling asleep. Praveen, the reg from clinic, came to see me, wondering what the hell had happened since then, so I explained, and he had nothing to add so off he went again. 

Mommy arrived with food and more clothes, and we essentially sat around all afternoon waiting for my chest CT/Dr. Thompson, whichever came first. It ended up being the scan, and I had the fastest porter in the world (he was even faster than my chair!). 

When I returned to the ward, I emailed Dr. Thompson to let him know, and he replied to ask where I was, so I told him and he materialised shortly after. He looked at my bucket of chest fluid (it’s delightful) and determined that the lung isn’t going to reinflate fully on its own, so I need to go to the respiratory ward where they can use suction to get the last remaining bits of air out. We can’t do that up here because there isn’t the kit or the expertise within the staff if there are complications, which means that I am stuck until a bed becomes available down there. That was just before 4, and now it is nearly 8.30 and nothing is happening. It is nobody’s fault, it is just that the hospital is literally crammed to the rafters with patients and I can’t go and have the treatment I need until someone moves out, but they need somewhere to go. Until that happens, I am taking up a haematology bed which could be being used for a patient who needs it, and it will take longer for me to be discharged than it would have if there were enough spare beds to begin with. 

Mommy and Daddy have left after packing up all my things for when I do move, and I am just sitting on my bed, watching tv on my iPad and looking up hopefully every time someone walks past my room. If I think about how shitty this situation is, I nearly start to cry, but if I do that, I won’t be able to breathe at all. 

The 18th of December. 

Guess who’s back in hospital? Lucky me. Having added up all the symptoms, I decided that actually, going to A&E this morning was going to be necessary. If I do have a pulmonary embolism, or need inflating, we needed to get the ball rolling asap. 

So after breakfast and coffee, Daddy brought Mommy and I down to the QE and here I will stay tonight. We arrived at 10.56, got triaged and had my obs done. My high heart rate concerned people despite me explaining it was normal for me. I spent most of my five hours sitting facing a corner in a sub-wait so I was exposed to as few germs from coughing people as possible. I had a minuscule amount of blood taken, enough for a D-dimer (a test to indicate a thrombosis) and saw a doctor who decided to admit me for the tests that I need. They’ll want to do a CT scan which I can’t have because I’m allergic to the dye, so if a PE seems likely, I’ll have the one I had before with the radioactive gas. 

I finished my book (Cats Cradle by Kurt Vonnegut), and eventually got a bed on CDU at half four. I filled in a form, was brought some dinner of chicken in a creamy sauce with green beans and mash which was actually edible, then we sat and waited for Daddy to come with my overnight bag. 

Once he arrived, a doctor followed shortly after. He’s from the liver team so has heard of me, and we went through all my symptoms and history again. He was mad that I hadn’t had a chest x-ray yet as he could hear prominent crackles, but it’s done now. I’m high risk because I’ve had a PE before, and my veins have been inflated before, and this doctor is sensible so I’m confident things will happen tomorrow. Hopefully it’s simple. PE and clexane please. 

The 19th of December. 

Happy 9th Marrowversary to me! Nine years ago today I was sitting in a hospital bed, having Christine’s stem cells transfused into my bloodstream; now I am sitting in a hospital bed waiting for another scan.

The doctor (Matt) came back last night to say that there was a shadow on my lung, so he wanted an ultrasound today to see if there was any fluid there. A porter came for me at half nine, but then we had to wait for a transfer nurse. After half an hour of him angrily pacing, a woman came up from ultrasound to help. For some reason, I had to go down on my bed, so two people were required. Anyway, a man scanned my right hand side and found no fluid so that’s good. I returned to CDU, where I was seen by the doctors who have now decided that because my arm is still swollen, they want a scan of that, so I’ve been waiting for that all day. 

Mommy came in with some lunch for me, and we sat around some more. Dr. Thompson decided to drop in to say hello and take the piss a bit because he is awful (but we love him). He feels that if there’s no clot in my arm, there’s no need to go hunting for one elsewhere, so tomorrow hopefully I’ll just have my arm scanned and then go home on clexane and co-amoxiclav. Please!

Gareth had been in to visit the liver team so popped down to say hello and ended up staying for nearly two hours! Still, we had nice chats about Keith and the liver team and Christmas. I think it served as a nice distraction for us both. 

I also had a visit from April who works here and follows me on instagram so I got to put a face to a name!

Loads of new people tonight. Go away.