Archives For veins

The 23rd of April.

It has been a very boring day.

This morning, I wrote up a blog post, sewed up the seam of the first sleeve of my jumper, and got very bored of hearing about the new royal baby. So much baby news. Now he is born and home, one hopes it will die down once we know his name.

I had an ultrasound with Andrew at one, to check if there were any strictures or thromboses in the lower arm. After checking all the veins, and looking at the visible tissue, it seems my veins are fine, there isn’t any fluid anymore, and now there are just fat deposits in my arm for no reason! So I’m going to get back in touch with Anne Dancey to explore my options. I can’t leave it like this.

Then we had two hours to kill, so we bought some crap sandwiches from WH Smith and read our books. Much book-reading today. I finally went in to the x-ray suite at quarter past four, where Dr. Blaney was waiting. I lay face down, trying to breathe comfortably. My lower back was exposed, and I then had an x-ray probably every twenty seconds while Dr. Blaney did lots of injections. I think he was doing some local anaesthetic, then putting in a bigger needle and using that for the steroid. It took maybe five to ten minutes and was slightly uncomfortable, but not enough to put me off having them again. If they work, that is – it’s hard to tell at the moment. They might work immediately, it could take a few days, or they might not work at all. If they don’t, I don’t know what I will do.

The 24th of April.

Well, I think I might very tentatively say that my back may be slightly improved?

This morning it was quite tricky to tell, because I didn’t do anything to really test it out. I got up, had breakfast and coffee, and listened to The Riverdale Register while getting dressed for the gym. Mommy and I printed out all our tickets for Mach so they are sorted in folders for when they’re required, then I did the first two rows of the second sleeve of my jumper.

After lunch, I went to the gym for a short session. Partially because I didn’t want to overdo things, and partially because Mommy had to be at Grandma’s for twenty to four, so I needed to finish earlier than I usually do. Basically, I skipped all the stuff I do downstairs, so I just did the circuit of machines upstairs. I didn’t have the pain I was experiencing last time, but that was a very bad day. The pain is definitely not gone, but I think it might be a tiny bit better.

Tonight I am out at the mac seeing Tez and the seats there are not the most comfortable, so that might give me a better assessment.


The 28th of March.

I have been outside!

This morning, I got up a bit earlier than usual, which meant I had time to write up my blog post before we had to go out. I had a chiro appointment at eleven, which was sorely needed after all the crocheting I’ve been doing. These jumpers have rather fucked up my neck – too much sitting here, looking down. Trine had to apply some rather intense pressure to some knots and ooh it was painful.

From there, I went to the gym. I met up with Karen, but there wasn’t much for her to show me today. I just need to do my thing for a few weeks, then come back to her with my progress to talk about any changes.

I worked out for about two hours, getting to do everything in my preferred order which was most pleasing. Even more so was that when Mommy picked me up, she’d been to M&S where they had a pretzel and a cinnamon swirl!

This afternoon, I have returned to the crochet (trying to look up more often) and watched thimgs that recorded last night. I did some screaming at How to Get Away with Murder because of Connor and Olly’s wedding and Scandal crossover! Going to be SO GOOD. I haven’t actually watched Scandal, but I feel very very excited about this.

Tomorrow I am finally going to find out exactly what is going on in my arm. Let’s hope, or I’ll have a breakdown in the middle of Andrew’s clinic.

The 29th of March.

Hm well not really proper answers. I love going to see Andrew because he’s very punctual and I never have to wait when I am called through.

Basically, we don’t know why my arm is fat. The pictures from the MRI show that the veins in my neck and chest are as good as they can be, and any further intervention using stents or whatever won’t really make any difference. So I asked if we can look at my actual arm to see there is a stricture anywhere, because the forearm is where I get pain, where it feels like things are being squeezed, and he’s going to do an ultrasound in it when I go in for my steroid injections. That’s all that’s left, really. I think I will email Anne Dancey and ask her if there is a scan she could do that would determine the exact composition of my arm – what the veins and lymphatic system look like, what is fat, what is fluid, and then what can be done with the results of that. This would be so much easier if I weren’t allergic to contrast.

We picked up Christine at New Street (eventually), and this afternoon I have been crocheting the second sleeve of the jumper and starting Scandal. I’m doing this one longer, so I’m going to have to unravel the first one and do it again. I have enough wool.

 

The 4th of February. 

We’re on our way to having a plan! Ugh I’m complicated. I’ll explain. We got to the QE at the crack of sparrowfart for my venogram at nine. I know so many of the people in that department now. Andrew Willis came to have a chat before I went in to just go through what would happen, then I got taken through. The first bit is somewhat dull, everyone saying hi and doing all the safety checks. I had to have a cannula in each arm, but in the left arm, my veins did not co-operate. The first two went in the tissue, then they got the ultrasound machine, got one in the vein but it then blew, and then finally we got one in the right place. After that, it was very quick! Put the drug down the arms while I hold my breath and the radiographer takes a picture. That’s it! Andrew came to have a look at it and he was happy that we didn’t need another, so I was able to go and get dressed, then we’d have a chat. The pictures have apparently been very helpful, because we have a couple of problems. Firstly, the narrowing is indeed back as I suspected. The second thing is that the internal end of the line is causing some blood to divert into a vein it isn’t supposed to be in, which is a Bad Thing. Basically, lots of doctors need to have lots of chats, think carefully, then they’ll make a plan and let me know. I think what will probably happen is that I’ll have a venoplasty every few months until the line comes out. But we’ll see what they decide. 

Came home where I had breakfast (I’d not eaten just in case) and since then I’ve not done much! My load of wool arrived so I’ve started Simon the Sheep, but I can’t do much with my left arm as there was so much digging around in it this morning. 

The 5th of February. 

Today has been really rather good. I had a Zopiclone last night and it actually worked which was a relief. Nice big sleep for me. This morning both my arms were so swollen but I think that is just a result of them being messed with and having drugs put in them. I am relying on Andrew to have chats with Igor and Ram and I might get a phone call tomorrow. I hope so. 

I crocheted the head of Simon the Sheep, then I was emailing Julie about a piece in The Sunday Mirror or Sunday People that’s going to run this weekend. It’s similar to the Grazia piece, but more around Valentine’s Day instead of Christmas. 

This afternoon, we had the delivery of the mini oxygen cylinders, and Fiona and Phoebe came round! We had enormous fun watching a DVD of our Year 6 school play, being nostalgic about the good old days. Phoebe has taken the crochet bunny and tortoise because they basically went straight in her mouth. She had a little sad but then after some milk and a nap she was chirpy again. 

They had to go home for Pheobe’s tea at five so during Pointless, I used my new oxygen cylinder to do some exercising. Just some squats, sit ups and light weights, but it’s given me confidence that I will be able to do things again if I keep this up regularly. I will get there. 

There is a new series on itv called Births, Deaths and Marriages, about a registry office. It’s obviously supposed to be somewhat thought-provoking, but I think it’s especially pertinent to me at the moment. My parents will have to go and register my death, which I hadn’t really thought about before. One of the formalities of dying that those of us that do it don’t have to concern ourselves with. And I very much doubt I’ll ever register a marriage, or probably even be in a relationship again. Who wants to date a girl with an expiry date? Not that I know when that it. It’s hard. When we first got the news, it felt like it would be very soon, but now I’m less sure. The gaps in between my episodes of cholangitis have been relatively long – several months at a time, once properly treated, so I could potentially have a couple of years. That’s the optimistic view, but I think it’s the better one. I will still try to get the things on my bucket list done, because equally, I could get sick again tomorrow, and I want to relish the memories for as long as possible.

It’s not dominating my thoughts quite so much anymore. It comes up, when something prompts it, but I’m not dwelling on my imminent demise. I take each day as it comes, listening to my body and being grateful for each day I’m not imprisoned by pain and drugs. I know that when I’m next admitted, it’ll be for longer, and I’ll resent everyone and my body even more. At least I won’t have to deal with cannula palaver again. I can’t cope with more first year doctors decimating my remaining veins.