Archives For lung function tests

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 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 20th of April. 

Ugh well it has been rather a pants day. My breathing has been bad, Monica is gone, and Victoria Wood has died.

It started in an acceptable enough fashion; I did a blog post while trying to not bend my neck too much in any one direction, watched a wedding on This Morning, and spent a little time with Monica, having a little play and rubbing her belly.

Shaki arrived just before one, and we started filling in the paperwork for Monica’s new home. When Janet, her new owner, arrived, I took the cat carrier in and put the blanket she sleeps on inside with some of her toys and a couple of Dreamies to try to tempt her in. We finished all the forms, then Shaki and I went back to the kitty but she was having none of it and went straight under the bed. Shaki went back out and after a little while, she emerged, but refused to come anywhere near the carrier. Then Mommy came to have a go, she even made a trail of warmed up chicken, but in the end, she just had to pick her up, get her in, and quickly shut the door behind her. She was not happy and started crying, putting her arms through the gaps, then I basically made them leave because I could no longer bear it. 

Shaki stayed for a little bit so we could talk about some issues I am having with PetPlan, and she noticed my crochet. I’m now making a little version of her cat Charlie and some mice for the Cats Protection shop. People love my skills. 

After she’d gone, I went to the gym, and had a fairly crappy session. I had to do most of it in the wrong order, and my breathing was difficult, then the Victoria Wood news broke, and it was all just very poor. I remember listening to a cassette of her 1997 show as a child all the time. If you don’t know her, search out her work. Hero. 

The 21st of April. 

Oh, for fuck’s sake, now Prince?! This year is the worst. It truly is. 

I woke up super early for a very brief phone interview with Paul Ross that my friend Alex who produces him asked me to do last night. I just had to talk about my experience of cancer (loads of death) and what I do now (Anthony Nolan). 

At the QE for lung function tests at half past ten, then Dr. Thompson. They’ve replaced all the machines, so the tests have changed, and they’ve got rid of the one I hate. We certainly got done more quickly than before, then I was back out where I found Mommy having a chat with a chap who had recognised me from haematology clinic. He’s had a lot of the same GvHD as me, and his son and nephew have both had leukaemia as well which is very unusual. He told us about a drug that might be able to alleviate some of my symptoms but I need to talk to haematology about that. Dot, who is the sweetest nurse in the world, called me in, and told me how much she liked my hair before leaving us with Dr. Thompson. He asked how I’d been feeling, and I said I was generally okay, which surprised him because I had the worst results he’d ever seen. Kind of a kick in the face. He’s prescribed me an inhaler I have to do twice a day and we hope that might make a difference. 

Got home, had lunch, then went back out to Sutton. I needed to return an Ivy Park crop top that was too small, pick up some boring bits from Boots, and to see if Waterstones had Sara Pascoe’s book but they didn’t yet. They’ll text me when they do. Then off to Tamworth to Hobbycraft so I could get some safety eyes for the mice but they had none, so I bought some wool instead. We also went to John Lewis to look at some garden furniture, but I ended up buying a blanket which had been reduced from £65 to £19.50, and I now might hide under it until this year is over. 

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.

The 9th of October. 

Well I decided that I wasn’t going to do the lung function tests. We arrived and talked to Dot who is a lovely nurse and she agreed that there wasn’t much point when I can’t walk a few metres without getting breathless. I still had to go and see Dr. Thompson and he wanted me to have a chest x-ray because he’d feel silly if there was another reason for my breathlessness and we hadn’t checked. So we did that and there was indeed nothing, as usual.

I didn’t need blood which was also a handy bonus because we were expecting to be there all day, so that was a couple of hours lopped off. After photopheresis, we went into town where I bought a sparkly fisherman’s knit pullover from American Apparel, and I had a flat white from Origin.

This evening, Becky came over as we haven’t seen her all week and we talked wedding, school, and her masters, all very stressful things! In some ways, I am quite glad I don’t have a normal life, because I don’t have to worry about the future.

The 10th of October.

Today did not start off well, with the news that Emma (big sister of squidgy baby Sophie)’s brain tumour has grown, and in a few weeks they’ll be heading for Oklahoma for treatment. She’s only six years old, for fuck’s sake.

This morning I went round the corner with Mommy to get money and mint imperials for Grandma, and I got some sherbet pips. I had some apple, pea and mint soup for lunch which was interesting. Not that it was bad,but it was very sweet.

This afternoon, I started reading a Jeffery Deaver that I thought I’d already read but actually haven’t! Shocking. Oh, and Julie’s filed copy with Grazing, so that’ll be out around Christmastime, spreading the joy.

The 3rd of July.

I had literally about half an hour of sleep last night. This is not an exaggeration in the slightest – my body just would not go. And today I had lung function tests!

I got up just before seven and was essentially the walking dead until I’d had two coffees. Oscar decided to come and sit on me before I’d managed to get any breakfast so I had to wait for him to get bored before I could satiate my grumbling tummy.

I had my lung function tests at 12 and they were pretty much on time which was good. It was one of the nice chaps who I’ve had before so we had nice little chats in between tests. I think having a stronger core has helped me push for longer because Dr. Thompson said my tests were slightly numerically better than last time! Always good to hear. We always enjoy seeing him.

We popped up to 621 if they had heard anything about my line and it had in fact just been booked for the 14th! So that’s excellent news. Then on the way home, we stopped at Boots because I needed eyeliner and deodorant, then I got a pretzel as I’ve been craving one and my mouth can finally cope.

Then lunch, Mommy went to Grandma’s, I watched some tv, decided what clothes I’m taking away and had a chat with Dan from the Sutton Observer.

Tonight I am going to have lorazepam and I’m so excited.

The 4th of July.

Oh lorazepam is so good. I had like ten hours of sleep? That’s fucking miraculous, compared to my usual. I wanted to wash my hair today before we went way so Mommy and I did that first thing, then we could carry on with packing and having breakfast and things. I had made a list last night while I was still lucid so I know what I had to still pack this morning, so I was ready to go when the car was packed up by twelve.

I spent the first part of the car journey with my big green headphones on, listening to the Passenger album and being contentedly half-asleep. I was prodded to come to when it was time to stop for lunch, which was about two, so I did my mouthwash in the car before going to find something to eat. I started having a major quandary about the calorie options available but then I slapped myself around the face (figuratively) and thinking “You are on holiday. Calm the fuck down”. So I had a smoked salmon and cream cheese sandwich and a small skinny coffee cooler with an extra shot of espresso.

Then it was back in t’car to travel to Topsham! It was not too far, and it’s a perfectly nice place. My room was set up as a twin, which I made them change into the double I’d requested, made myself a barely palatable coffee, and unpacked the necessary. Handily, there are many plug sockets! We’ve just had a very good dinner in the restaurant (sea bass, crab and pea risotto, herb oil) and now I’m going to watch 8 Out of 10 Cats Does Countdown!IMG_0001_2

 Lorazepam.

IMG_0002_2

Disappointing biscuit.

IMG_0003_2

Tea to be nicked.

IMG_0005_2

Tasty risotto!

20140713-211836-76716154.jpg
Bed.