Archives For venoplasty

The 25th of April.

Everything hurts today. I am tender all over. My body did not like being invaded so I am being a delicate flower.

My day has been punctuated by half-hourly squeezing of a stress ball with my arm up in the air. It is the only thing I can do that might make my arm go down. I’m not convinced it is going to work but I am desperately hanging on to anything that may make a difference. If this doesn’t work, I don’t know what I will do.

This afternoon, I wrote about yesterday’s procedure, then I went to sit with Sam for a couple of hours. I watched Netflix, and he kneaded my lap which I tolerated until it hurt. Pointy claws of a heavy kitty on wound sites are not good.

I just feel very sad. Maybe tomorrow will be better. We’re off to Machynlleth on Thursday for the comedy festival there and I really don’t want to feel like shit. 

The 26th of April.

Measured my arm this morning. Still exactly the same. I am not expecting it to improve, but I’ll carry on with the compression and the squeezing for a few more days, then I’ll ring Andrew’s secretary and make sure my appointment is on the way because he’s going to have to come up with a new plan. I cannot go to John and Maddie’s wedding with one huge arm, even if it will be full of medics.

So this morning I was sad about my arm and had a bit of a cry before I came downstairs. Breakfast, then I wrote up the blog post about the venoplasty while I watched new Pretty Little Liars and iZombie. I did a lot of shouting at the latter because Peyton is being a moron.

After lunch, I sorted out what clothes I’m going to take to Mach and printed out all the tickets for the shows I’m going to, using up a small tree in the process. Then I went to give Sam some attention and a brush because we were taking him to Lee’s to stay with her while we’re away and I thought he ought to look nice.

I am sick to death of living in baggy clothes. A third of the year has passed and I haven’t felt good about my body for a single day.

The 23rd of April.

Oh god I have never been so excited about the fact that it is Monday tomorrow. Maybe my four month long saga of the fat right arm will be over soon.

Somehow I managed to press the snooze button this morning without my knowledge, but I didn’t continue to sleep for too much longer. I think I was slightly less coughy, but I had Zopiclone so it’s hard to remember. Thankfully the rest of the day has not been necessary to remember anyway.

Shockingly, it’s been mostly tv. Sunday Brunch in the am, Netflix this afternoon. I had a break in the middle for my traditional Gardeners’ Question Time and a lie down/pretend nap, but that was pretty much my only non-screen-based activity. On Netflix, I watched the first two episodes of 13 Reasons Why. I think I’ll download the next several to watch while I’m having to lie flat in ambulatory care tomorrow.

The 24th of April.

So it is done. I am praying so hard that it has worked this time but honestly I’m expecting to be disappointed.

Mommy woke me up for toast at quarter to seven, and then I couldn’t go back to sleep. I managed to kill time until we had to leave by redoing some crochet that I’d done wrong, and we set off just after 10:30. Parking was a nightmare, but we drove round enough times to chance upon someone leaving. Before going to ambulatory care, we went up to 516 to give Jenny her bear. She was delighted and put him in her pocket. We couldn’t stay too long, so we had a brief chat, then we went back downstairs and she went to check patients’ blood sugars.

I checked in at the desk at ambulatory care, then had to wait until the afternoon patients were let in. While we twiddled our thumbs, we saw Vash, the mother of a girl I was treated with at BCH. Turned out she was in a cubicle in there with some mystery virus. She did not look well, poor thing.

I had a very nice nurse who liked my hair (actually nearly every person I met commented on it) and got admitted pretty quickly, then a nurse from angio came for me because I was the only one on their list this afternoon. When we got down there, I went through the theatre check list again, and Andrew came for a chat. He explained what he was going to do, and we talked a lot about gadolinium (the dye he has to use instead of the iodine-based contrast he normally would), because I have so much during these procedures, more than a patient who’s had a lot of MRIs, more than anyone he’s ever seen and there are no studies on how this much of it can affect a body so he has concerns about that. I am just tired, I want it fixed.

We went round to the suite we were going to use. I shuffled across onto the bed and there was a who, then Andrew went to scrub in and the nurses prepped me. Covered in iodine. Once everything was set up, Andrew ultrasounded the edge of my groin to find the vein, then one of the nurses came to distract me while he got stabby with the local anaesthetic. He tunnelled up as far as he could, then he put some local in my fat arm and drove a wire up the vein in there so the two nearly met, and he used them to measure the blood pressures in those vessels, and he did a run of contrast so he could see if any strictures were there. The one he blew up in January had returned, so he was going to have to inflate that again, but with a better balloon this time. Before doing that, he wanted to use the IVUS to make sure there weren’t any more, and to get some more information about my superior vena cava. I could see the screens today, so I can tell you that an ultrasound inside your veins looks like the title sequence of Doctor Who. Like going into a black hole. From this, he was able to glean that there isn’t any more narrowing, but it is scarred. Lines for seven years will do that to you.

Satisfied that I only needed the one inflation, he gave me some sedation (they are not comfortable experiences) and I had a tiny nap. Then all the tubes and wires got pulled out and I had to lie there while he pressed very hard on the puncture site to stop the bleeding.

In recovery, I had some water, then the nurses took me and my notes back to ambulatory care. Mommy was coming back in at the same time, so we both returned to my bedspace and I told her what had gone on. Andrew came round too, and we talked through what he’d seen. He also explained that there’s no point in strenting the vein he inflated because it’s surrounded by bones and fibrous tissue so would probably just get crushed. I have to keep wearing the sleeve and squeezing the stress ball, and hope that this time it’s had the desired effect. I’ll get an appointment for his clinic. Maybe I’ll be able to wear something that doesn’t drown me.

The 19th of April.

So the shaved kitty is not so shaved. Only a few bits had to be done, so we actually have a rather large, incredibly floofy cat who needs a lot of grooming but he is super friendly and seems to enjoy being brushed so I’m confident that won’t be a problem. Plus he’s got zero health problems which is a bonus so hopefully we can find someone who wants an older cat!

A much less news-heavy day. This morning I had a chiro appointment, so I got my back stretched out and a few bits crunched here and there. I was much better than last time, presumably because I haven’t been having to use quite so much oxygen, so my muscles are behaving a bit more normally.

When we got back, Christine and I watched the new episodes of iZombie and Pretty Little Liars, still batshit as ever. Will we get all the answers in the next ten weeks? We can but hope. By the time it finishes, the election will be over!

Christine had to leave to get her train home, but when she got to New Street, she discovered there were no trains to Euston! She was okay though, she was allowed to get a different train to Reading, then get another one home from there.

Shaki arrived just after six with Sam the floof. He is gorgeous and I can’t bear the thought of him sleeping under a pile of leaves. People are awful.

The 20th of April.

I am covered in floof. He is lovely but I need industrial-strength sticky tape to de-fluff.

This morning I was at the QE for pre-venoplasty bloods. That was easily done – I went to haematology clinic and they bled me very quickly, then we went across the link bridge to the “new” hospital. I’d taken in the bear I made for Jenny’s baby, but she wasn’t in. Cody was though, so we went to check if she’d be there on Monday (she will), and we saw the doctors on their round. They seemed happy to see me being well, and Ben complimented me on my boots. He obviously has good taste. Then we went to ambulatory care to check what time I need to turn up on Monday. However, they couldn’t find me on their list. This was a little alarming, so I rang Tracy. We don’t know why I’m not on their list, but I definitely have a bed, I just need to arrive at twelve and it should be fine.

Dean was coming up to go to Heartlands for a pre-op, and I’d said we’d give him and Adam a lift there. We weren’t far away and it was nice to see him with neither of us feeling ghastly.

We dropped them off, then came home for lunch. Mommy then went to Grandma’s, and I watched The Magicians before going to see Sam, and I gave him a very good groom while we watched the first two episodes of Riverdale. Oh how I miss the days when my only worries were boys and girls and homework.

The 24th of March. 

Very little to report today. I spent my morning writing all about yesterday, then put it into a blog post. I had some terrible news that James (who colours my hair) is moving to London in May! I’m very pleased for him but also very upset for my hair. I have now booked in to see him and Michaela next week, as I planned on getting it cut on the day I went into hospital, so on Tuesday I’ll have a chop and we’ll work on a spectacular finale of our relationship. 

My breathing has not been great, and that’s because when I’m just on air, my sats are only 90. Now I’ve bought a home sats monitor, I’m obsessed with checking them. It seems I have good reason to be though. 90 is not good enough. I’ll have to keep an eye on them and if they don’t improve we’ll have to see what the doctors think. Can I just get better please?

The 25th of March. 

Okay if this is recovery it is very intermittent and confusing. I slept with the oxygen on, took it off when I got up (which was late because I forgot to set my alarm) and by the time I’d got dressed, my sats had hit 85. This did not bode well. However, during the morning, I started feeling better. I took the oxygen off, and suddenly it seemed I had improved – I’ve been above 95% on air since then. I don’t understand. 

In other news, I checked MyHealth last night on a whim and saw that I have a venoplasty date! 24th of April. A month away. By the time my arm deflates (that’s if it works this time), I won’t be able to wear the rest of my jumpers which have been waiting for the past three months because it’ll probably be warm again. 

For much of my day, I sat and watched episodes of Buffy on the SyFy channel while I crocheted. Every so often I have checked my sats and they’ve been okay, so I think I’m just going to have to see how I feel every day and see if the trend is up or downward. 

The 20th of March. 

Feeling slightly better today – I’m going to try going to sleep earlier and getting up a little bit later than I would otherwise. I think I’m going to need as much as reasonably possible for the next several weeks. 

This morning I put up a blog post, and remembered to print off the tickets for Jon Ronson tonight. We’re going to see him talk about psychopaths at The REP. It’s been a long time since I read The Psychopath Test so it’ll probably feel all brand new to me again. 

After lunch, Mommy went to see Grandma, and I had a mini Agents of S.H.I.E.L.D marathon while crocheting Lauren the angora bunny. Finished the head now and snipped all the loops so she’s going to look very furry. I’m not sure where I’ll place the eyes and nose amongst that fur.

When she returned, we watched the second and third episodes of The Replacement. That was bloody unsatisfactory. Not sure why they had to rush the ending so much and fill the last fifteen minutes with nonsense. Frustrating. 

Speaking of which, we tried ringing Tracy from interventional radiology today, but no answer. 

The 21st of March. 

An in-between sort of day. Went to bed late because of Jon Ronson, so I’m tired, but not to the point of needing oxygen. Just enough to not really be able to get a deep breath. 

This morning, we caught up on the episode of Broadchurch we missed last night (just throw a red-herring rapist into the mix) and saw a lot of news about Martin McGuiness. He is still the main news this evening, so nothing else can have happened today. 

Just after lunch, Jen came round with a bunch of flowers from Cats Protection which are very pretty. She couldn’t stay long, but she had time to show me the “physio” I should be doing, which involves putting my feet up, a hand on my forehead, and the other one clicking at people to bring me things. 

This afternoon, I’ve been catching up on more tv and crocheting all four bunny legs. Ears and tail left, and I think I’ll have just about enough wool. 

We finally managed to talk to Tracy this morning and she’s looking at early April for my second venoplasty. I know there isn’t much of March left but that still seems an eternity away. I’m wearing the compression garment but all it does is squeeze me down by a centimeter and hurt.

The 27th of January.

Long days and late nights do not suit me. It took me ages to go to sleep because I was so cold, so I’ve been absolutely exhausted today. 

I got up at half past nine, very reluctantly, and stayed in my pyjamas all morning. I didn’t have the energy to engage with This Morning so I let BBC 2 burble in the background while I wrote about yesterday. That took a long time because I was just feeling useless and wretched, and that is why I have not typed it up yet. 

After lunch, we changed the dressing on my arm (small puncture wound, very little to report) and I put on some warm clothes. My arm has not even started to deflate yet and even my big jumpers are getting a bit snug. I had a bit of a lie down but lacking the capability to nap in the day, it doesn’t really help, so I came back downstairs and have just been a big floop. 

I answered some Cats Protection emails and spoke to Shaki, but I can’t even remember what about now. I might take some Zopiclone tonight and try to have a big sleep. Feel like garbage. 

The 28th of January. 

A sleep has helped. Not back to normal yet but getting there. Another early night will be required. 

Having had Zopiclone, I can barely remember what I’ve done today. I know I wrote up my blog post about London and my venoplasty (update: still no improvement, fairly sure it’s actually getting worse), I went upstairs to unpack my new hairdryer, but other than that, I’m not really sure how I managed to while away the day. 

Definitely no watching of any tv that had to be paid attention to, nor any reading of books. I finished The Man in the High Castle on Wednesday, and I’ve got The Invention of Numbers out to read next but I haven’t started it yet. 

I got in touch with the gym to pause membership again and they’ve done it for five months, although I can resume it at any time. Frankly I’ve got no idea when I’ll be fit for any kind of activity; I can barely walk from room to room without getting distressingly breathless.

New body please. 

The 25th of January.

Venogram day!

I was up at six, and having got dressed, I drank as much water as was humanly possible before my cut-off at seven. We arrived at ambulatory care at about quarter to eight, and we sat around for forty five minutes reading our books before the nurse came to start going through the checklist. It became apparent that the doctors wanted my potassium checking because it was high yesterday, but it was fine today. At half past nine, I was told to gown up because they’d be coming to get me soon, but then they actually didn’t arrive for two hours. There had been an emergency in angio so I was not angry, just bored and hungry. So hungry.

The nurse in imaging clerked me in (the amount of times I have repeated my date of birth, address and the fact that I am NOT PREGNANT today), then Andrew and the doctor who was working with him came to see me, and we talked through the plan. Andrew had the same theory as me, and the intention for today was to do the venogram and if we could do the venoplasty then he would.

I got taken into the angio suite, and everyone introduced themselves while I and the room got prepped. I got to be in the Who which is fun – normally I’m asleep for that part. While the doctor shoved the wire up inside my vein, the nurse on my other side stroked my hand and tried to distract me by talking about bees. I love that they do that kind of thing. We both knew what she was doing, but it is like a quiet contract we both entered into. They took some pictures of inside my arm, and it was found that I had a narrowing in the subclavian vein (not the superior vena cava like last time). I hadn’t had a massive amount of gadolinium (the dye they have to use because I’m allergic to the CT contrast dye they would normally use) yet so they gave me some fentanyl and midazolam, then I had a lovely nap while they inflated my vein. Hopefully that should do the trick, but if it doesn’t go down in a couple of weeks, I’ll have to go back to have something more invasive and permanent, like a stent. Let’s hope not.

The 26th of January.

Ooh I am so tired. Very long day. I’d not long finished my breakfast when my phone rang – it was a journalist called Christine who had got in touch with me via Anthony Nolan and wanted to do a kind of basic interview before she goes pitching the story to different publications. Sounds like it’s going to somewhere like Woman and Home or Woman’s Own right now.

When I’d finished talking to her, there was just time for me to eat some lunch and sort out my bag before I had to go to the station. I got taken to my train, but before we set off, there was an announcement to say there had been a fatality, so we were being diverted via Stafford, so would be skipping some stations. We eventually arrived in London forty five minutes late.

I had planned on going and doing some shopping but that seemed rather pointless and expensive considering the cost of cabs involved and the time I’d get to spend in the shops, so I went to Origin Coffee and had a flat white and a brown sugar cookie while looking over the NHS documents about second transplants. I get more angry every time I read them.

I sat and watched people go by for nearly an hour, then I needed to get a cab to go and meet Lauren and Amy for dinner. I thought it would be easiest to get one from Euston, so I drove back down the road to the station. I also had to pee and the disabled toilets at Euston are all out of service so someone had to let me in the baby change toilet instead, but at least it meant I didn’t have to pay!

I was able to pick up a taxi without too much difficulty, and he took me to The Diner in Camden. They found a ramp so I could get inside, then I got settled in a booth and had another coffee while I waited. Lauren was a bit late because the traffic was awful, but it was fine because there was a couple with two cute little boys nearby who were very entertaining.

When she did arrive, she gave me my birthday present of the Ruby Tandoh book, so I can make lots of tasty foods. Speaking of tasty foods, she ordered a vegan burrito and I got some pancakes with bacon to make up for the lack of pancakes on my birthday. Amy arrived mid-meal (she did say we could order without her), and we got to just have a nice dinner and talk about normal things, like Lauren’s move and an exciting project which Amy has been put forward for. I got my arms out, and Lauren found the size difference absolutely hilarious. She is one of the few people allowed to laugh. I’m actually fairly sure it’s got worse since yesterday but I just have to watch it.

I kind of had to leave in a rush, hauling my chair out of the door just in time to get into the Hailo cab. The driver was wearing shorts, which wasn’t then great for him when we got stuck outside the Anthony Nolan office gates and he stood around ringing bells until I got through to someone on the phone who let me in.

I was the first one of our group to turn up, followed by Jack, who is a supporter running the marathon (again), and Hayley and Jess who are both heavily involved with Marrow. We got started very promptly at eight, in a session facilitated by Ammeline, who does not work for Anthony Nolan. We began with an exercise saying what kind of animal we would be – I decided I am a panda because although everything seems to keep telling them to die, they just refuse to and I think that’s like me. Plus I’m cute. Then we got on to the subject of charity and Anthony Nolan specifically, what they do well and what they could do better. We were kind of biased because we love them, but we were able to come up withe some things.

I had to leave before we officially finished, because I needed to get back to Euston, although I don’t think it was going to go on too much longer. The car that arrived to take me there was a Mercedes, non-accessible, so I had to collapse the chair and put it up again at the other end, which was a disaster for breathing. It took ages for me to get back to normal.

I bought a hot chocolate and went to the assistance office, where the man told me to go down to the platform where his colleague would meet me. He did not appear, and after ten minutes of waiting in the freezing cold, I rang the office back and he was confused as apparently he’d rung the man “ages ago”. When he finally ambled up in his buggy, he was then pretty incompetent at putting the ramp on the train so having got up to my seat, I did not thank him.

We got moving, and I was desperate to sleep. However, I cannot sleep in a place that isn’t my bed and especially when I’m not even poorly, and I am paranoid about missing my stop. No sleeping was going to happen until I got home. Unfortunately, this train got delayed too because an engineering one in front of us had a problem so we got stuck outside Milton Keynes for forty five minutes. So dull. We made up a little bit of time, but still didn’t get to New Street until one. Tired, cold, in pain.