Archives For lung function

The 30th of December.

Is today worse than New Year’s Eve? I think so. The tv is definitely very poor – I had no interest in any of the films on today. I have set Carrie to record tonight but that is not for festive viewing.

This morning I wrote up a blog post, then watched Raymond Blanc dick around on Saturday Kitchen while crocheting the never ending shawl.

After lunch, I had a hairwash, then sat and watched three episodes of Black Mirror while the kittens ran around the room for the first time. First up was Crocodile – thought it was good, interesting premise, to see how far Mia will go, nice twist. Next, USS Callister – I really liked this one. The contrast between the 70’s Space Fleet and the hypermodern present in which the characters and game exist was great, and there was just the right balance of psychopathy and emotion. Really smart. Last I saw Hang the DJ – this seems to be the one most discussed in promo so I was a little bit wary but it lived up to the hype. I loved Georgina Campbell in this role, a much more likable character than the ones she played in Broadchurch and One of Us. I just really liked the concept and the ending. Good work, Brooker. I’m saving Arkangel and Black Museum until last because I think they’ll be the best. We’ll see.

The 31st of December.

2017 has been a weird year. Physically, I spent the first half of the year feeling like shit with pneumonia and constantly coughing. The second half was spent waiting for appointments, trying to figure out why my arm is still the same, desperate for pain relief for my back, and discovering that the diminished lung function I’d been experiencing since the pneumothorax is permanent.

Emotionally, it’s been pretty miserable. Feeling like an invalid for six months was incredibly depressing – it had been a long time since I’d felt so weak, like I was going to die every time I did something simple. Needing oxygen purely to exist felt humiliating. Then as I started to improve, Dean was going downhill, and we lost him. I haven’t been hit so hard by a death for years. We made no progress on my arm for the entire year, and everyone is still baffled. My back continues to decline, to the point where now I can barely stand. And my lungs are a disaster, so much so that an anaesthetist won’t put me under for even a short procedure.

There were some high points. Taking Mommy to The Ritz, Machynlleth, John and Maddie’s wedding, the Anthony Nolan summer reception, Regina Spektor, my ten year diagnosis anniversary, Amusical, meeting Peter and Sophie’s twins, Christmas at home.

Those were all lovely, but my memories are marred by my body’s myriad of problems. It’s really hard to enjoy things when everything is a trial.

I just want 2018 to be bearable. I’m not hoping for miracles, I just don’t want to feel wretched all the time. I’d like to definitively know what is wrong with my arm and whether we can fix it. I want to be able to move around my house without such immense difficulty, so one of my resolutions is to start exercising again. Nothing vastly energetic, but I know I can build up some muscle mass to at least make things slightly easier. I want to read at least two books a month – I am just accumulating them and they continue to mount up without me making any sort of dent in the pile. I am going to crochet an item of clothing I can wear that is not a hat, scarf or pair of mittens. And I am going to take more photos with people at happy times. I have no photos of me and Dean and it devastates me.

I ended the year the way I always do, or at least the way I always want to – champagne and Christmas cake with my family, in front of the fire. Grateful to be here.

The 21st of November.

Well I had a great start to my day, securing tickets for Sadie and I to go and see My Dad Wrote A Porno Live! Super excited for that, and we have great seats too.

I was at the chiro at 10:45, and that was surprisingly painful. The angry tendon that runs up the whole right side of my spine was very unhappy as soon as Trine touched it. Still, I am seeing Dr. Blaney tomorrow. Pray for steroid injections.

This afternoon, I planned to do a bit of looking at Christmas present ideas, but I got started on some crochet and just haven’t put it down. I’ve also been waiting for the pharmacist at Boots to ring, but they haven’t. They were supposed to be calling because my spare compression garments have arrived after waiting for two weeks, only to find the person on duty ordered the wrong thing. They have the code of the product but are apparently incompetent at using the information provided. Bad enough when the GP prescribes the wrong thing but when they have all the information and still fuck up…I don’t know. Gah.

The 22nd of November.

A slightly less productive day at hospital than I had hoped for, but that was more due to a misunderstanding on my part rather than anything that happened there. It emerged that the appointment with the anaesthetic team that had appeared on myhealth was not with the pain team, it was the one I had as part of the pre-assessment clinic. And having checked again, I don’t actually have another appointment booked in with Dr. Blaney, so we’ll be ringing his secretary tomorrow.

This did mean my visit was rather more straightforward. First I saw one nurse who did my height, weight and blood pressure. Then a sister called Kat, and we had to talk through my whole history, all my medications, what I’m allergic to, what I’m having done, and she gave me the pre-surgery checklist of things I have to do or not do in the hours preceding the procedure. I then went for bloods, but my veins didn’t want to cooperate, so I went to see the anaesthetist and drink a lot of water to pump up my veins. Had a very long conversation with him, mainly about my lung function, the pneumothorax and the pneumonia. He mentioned that my lung function is only 23% of what it ought to be, which was a surprise. I knew it was bad, but not that bad. Wow. Anyway, my lung function is not important because I’m having a regional block, which is like an epidural but it’s just one injection. I had to try to explain why I need to be examined in this situation but I’m not sure how much it made sense. That was all fine, so then I returned to the phlebotomist and she got some blood out of the side of my wrist. Then home!

 

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 7th of November. 

Feeling less shit today – no murdery dreams and my muscles are not so sore, so overall generally better. 

This morning, I wrote up a blog post while shouting at the Tory voices on Victoria Derbyshire. Eventually, I had to put on an episode of Bones because I was getting my blood pressure up. Then I put together the final gnome and took some photos of them all together. Now they’re sitting on the mantelpiece, having a lovely time. 

After lunch, I started work on the next Christmas project, but didn’t get much done before Ann and Tom, the couple interested in Callie and Carlton arrived. They pretty much immediately fell in love with them, as I expected. They are just too gorgeous to not adore. They’re going to change the kittens’ names to Molly and Bertie, so we’ll have to get used to calling them that. Plus they’ve given us blankets for them to get used to/put their smell on. 

After they left, I tried ringing the GP again to talk to this secretary who’s been trying to talk to me. I rang this morning, but she wasn’t available so I was told she’d ring back. When I tried again, she’d left. So then I talked to the team leader who did some investigating, but couldn’t get to the bottom of it. She’ll try again tomorrow, and maybe I’ll eventually find out what they want!

The 8th of November. 

Well, local anaesthetic in the eyelid is, much like most of the local injections I’ve had, not that bad. The only distressing local in the past was for the bronchoscopy, but that was for more psychological reasons than physical. 

Anyway. I was up just before six, because we had to be at the QE for eight. I was first on the list, which I was pleased about. I met Mr. Kolli before going into theatre, and we had a brief chat before he drew an arrow on my forehead so they didn’t do the wrong eye. Then I didn’t have to wait long for the theatre to be ready, so I put on my gown (over my clothes) and shower cap and went to lie down. 

A nurse put some music on (classical, disco, La La Land, Sinead O’Connor) and poured what felt like a gallon of two different strengths of anaesthetic drops in, with a tissue at the side to stop them escaping. Another nurse took her place, and I was given his hand to hold while Mr. Kolli injected the local into my lower eyelid. They both warned me about how awful it would be, so I was surprised to find it really wasn’t so terrible. Not that it was pleasurable, but I didn’t scream or even flinch, which he can’t remember witnessing with any previous patients. Brave Kathryn strikes again. 

Finally got round to zapping the rogue five lashes, and I didn’t feel a thing. So now they’re gone. I have antibiotic ointment to do four times a day (along with all my other drops) and I sported a very fetching eye patch until half past one. We’ll see if it has held off the bruising tomorrow. 

The 9th of November. 

This morning was arduous and long and frustrating. First was lung function. For the first time since I was at the children’s hospital, I had to get in the box (see photo below). Same tests, just different room/equipment. They took forever, it seemed, partly because I had to do one of them four times, plus she had to get some blood from me and it all just added up. Knackering. Then I saw Dr. Thompson, and he was not full of joy. The numbers are the worst he’s ever seen (for me), which is what I was expecting. We compared some x-rays from now and last year, and it is quite clear that the right lung has shrunk and the chest wall has sunk in, so I have less volume and the way I feel now is the new baseline. Great. 

Got out of there about half eleven, so just had time to get some coffee before going to see Andrew. That was a very confusing chat. It seems the lymphoscintigram actually showed that the right side works better than the left, because the lymphatic system is compensating for the rubbish venous flow. So now he wants an MRI with gadolinium so we can get a definitive picture of my anatomy. Which will require careful booking because he or a colleague will need to be there. JOY. And even when we know what is going on where, what we do is still up in the air because so many things could go wrong. Numbness, he cannot fix, but can sort out another MRI for that and refer me for nerve conduction studies. 

I don’t make any sense. 

The 19th of October. 

Tired. Need to catch up on the sleep I missed yesterday morning, but that won’t happen tonight because I’m at The Glee so will be back late, then up early for a 9am lung function test tomorrow. Yay about The Glee, not so much the hospital trip. 

This morning I wrote about yesterday because I was too tired by the time I could’ve done any writing last night. That took a surprisingly long time, and when I was done, lunchtime was pretty much upon us. 

I went to the gym this afternoon, where I saw very few familiar faces. No one I am irritated by, just the girl with the phenomenal body and a man who I see semi-regularly but is not interesting enough to have a nickname. I did about 85% of my usual routine because, a) I couldn’t really be bothered to do it all and b) I wanted to have a reasonable amount of time at home before going out again. 

When I got home, I made a tiny coffee, and rang the lady who had reserved Ava and Amira to make sure she still wanted them. She does, so that’s excellent, and we just need to find homes for Amy and Archie!

The 20th of October. 

Oh the gig last night was most fun. I met lots of nice people including two girls who let me join their table of wine-drinking, and the guy I was sat next to was excellent company too (and also works with Andrew from GBBO, amazing). I may have piped up during the show, but only because John brought up popcorn lung and when someone mentions an obscure disease that I have, I can’t not get involved. Things got a tiny bit awkward when they asked if it would get better and I said no, but then we moved onto kitten fostering and then it was fine. Then after the show they hung around so I said hi and had a photo before going home and crashing into bed. 

Then awake super early for lung function tests at 9. I had a new girl today, and she was very nice – it’s always good to have a chat while the machine calibrates. They’ve changed the tests again, so now I only have to use the weird mouthpiece for the last one, which they have made different too. We had to do one of the tests four times which was not ideal, but eventually I escaped, then I had to wait to see Dr. Thompson. He was running late, but we got there, and it was good news! Today’s results were better than last time, pretty much back to where they were before, so I left feeling quite perky!

On the way home, we stopped at M&S to get a croloaf (croissant loaf YES PLEASE) and some other bits including a cinnamon swirl Danish which I ate for lunch, then I had a very sedate afternoon. Tonight I have to back up my phone again because I can pick up the new one tomorrow!

The 24th of April. 

Last night at Tiff Stevenson was great fun. I haven’t been to The Old Rep since I was at Hallfield and we went to see George’s Marvellous Medicine. It feels a lot smaller than it did then; row C was really quite close to the stage. I just wish the lady in front of me hadn’t been there as she was drenched in perfume and it kept making me cough. The show was really good – I was surprised to hear her talk so much about Black Lives Matter but she was really well-informed and we all did lots of clapping. After the show, she was in the bar so we had a chat and a selfie in which I looked awful. I need to just smile instead of pulling a face. She’s in the cool gang. 

Today, I’ve been trying not to succumb to the heavy cloud. For some reason, I decided to Google bronchiolitis obliterans (the technical term for what I have) and I found some information saying that once it develops, most patients die of respiratory failure in five years. I already seven years post-diagnosis. What does that mean for me? How long do I have left like this before I get even worse? How I’ve been was okay, I could cope with that. I am really scared that I’m going to lose the tiny amount of independence I have left. What if I become so breathless that I need the wheelchair even more? To the extent that I can’t wash and dress without gasping for breath? I really don’t know if I can deal with that, and suddenly it feels ever so real. 

The 25th of April. 

My shoulders ache this evening. More jabs today. I can understand why babies find it so distressing – it doesn’t just hurt at the time, every time I raise my right arm, I am sore. I am having lots of paracetamol. 

My mood has slightly improved; I do not feel quite so morose. I don’t know how proactive I can be about my breathing, I’ll just have to go to the gym as much as possible, really build up my muscles. I got my appointment for my next set of tests in October. Maybe I can improve things by then. 

For most of the day, I have been crocheting. I am making a Moomin to take to Robyn and Stu’s in May, and so far I have done the nose and the body up to the armpits, so it currently looks like a rather large nappy. We had to go out just after two to go to the GP, and today there was no palaver about what I was to be vaccinated against. Two in the right arm, one in the left again. Two more lots to go; one in a month, and the last one in seven months. 

Before going home, we went into Sutton because I had had a text from Waterstones to inform me of the arrival of my copy of Sara Pascoe’s book, and while there, I also ordered the new Harry Potter book because y’know. We went to Tesco too for some naan bread because we’re having curry tonight and the naans at M&S were unacceptable. 

Ouch. 

The 21st of May.

Well my day was better than I anticipated. I had to get up at quarter past six to be at the QE for my of function test at quarter past eight, so that was not particularly enjoyable, but after that, it got better. I had coffee and did my tests, the results of which were, pleasingly, better than last time. I did hope that would be the case, considering back in.February, I was still very much getting over the flu. Drl Thompson asked what I do in the gym, so I showed him the last I keep in the app, and he was surprised. I believe he described it as “proper”. 

I was all done by half past nine, but I wasn’t due up on 621 for ECP until 11:30, so I gave them a ring and they had a free machine so I was able to be done early! So we left around lunchtime and went to the Bullring, as Digbeth Dining Club are doing a collaboration with Selfridges, so I had a salame, provolone and preserved artichoke calzoni, then I got a new spiral crochet notebook and a salted caramel cookie.

This afternoon, I’ve been finishing off all the parts of mini Frankie, so I’ll hopefully put her together tonight.

The 22nd of May.

I am pretty sure I’m coming down with something – possibly what Mommy’s had, but I think it’s more a variation on that. I’m not sleeping well, feeling generally a bit pants and overly-sensitive, in a weirdly physical sense. I had ECP again this morning, and I was glad we got there early, as the machine hadn’t even been primed yet so God knows what time I might have got started. That all ticked along quite nicely, and Igor came to see me about my blood pressure. I’ve got a new drug to try, so we’ll see if/how much my feet swell up. He had Julie take some blood cultures, so they’ll show us if I need antibiotics. I probably won’t, I’m just hoping it’s a virus that goes away without getting much worse.

We went back to Selfridges after it was over as Andy’s Low ‘n’ Slow was there, and I wanted some pulled pork. I also got a couple of boxes to post crocheted stuff in, and we got an anniversary card for Peter and Sophie. Since getting home, I’ve changed into poorly-person clothes and am basically feeling pretty pathetic.