Clinic Day

Yesterday I went to my Pulmonary Hypertension clinic and they were all really happy with me. I've been feeling good on the new medication, Flolan, and now my pacemaker is running at full power I'm feeling a lot more awake. 

We talked about my hair falling out and they suggested some multi-vitamins might help. They said it's actually normal for hair to continue to fall out after you start feeling better from a long period of illness. It takes a while for your hair to catch up. However, it might be the cocktail of drugs I'm on too. None of them really have hair loss as a side effect but together they could be having that effect. So it might go away, it might not. We'll just have to wait and see.

I've been feeling really tired and getting muscle aches when I put up my flolan dose and as I've been doing it every other day for the last week, that's been making me feel really rubbish. But we chatted about that and it's normal. Flolan can make you feel like you're coming down with the flu when the dose is put up. No idea why a drug that opens up the blood vessels does that but it is pretty strong stuff. Now I know it's definitely that I can be a bit more clever about when I decide to up my dose. I want to aim for once a week but I can work around times I know I'm going to be busy and need a bit more energy than normal and make sure I've got at least the next day to rest once I put it up.

The day before my Flolan pump's battery had completely died without notice. It's supposed to start telling you it's low way in advance because you have to make a new batch of drug, which take 20 minutes to make up, as the pump resets when you replace the battery and it won't just pick up where it left off. Unfortunately we were in a shopping centre and we started hearing this high pitched ringing noise and we were convinced it was the shopping centre's lights or tanoy system going mad and we were wondering around for half an hour until we got back to the car, shut the door and could still hear it. I checked my pump and flat battery warning was up and it had stopped infusing. I was off the drug for about an hour, maybe a bit longer, which is pretty dangerous so they told me in clinic to send the pump back to get it checked out because it should have given me warning, not just completely died without notice. 

They checked out my pacemaker site and although they were a bit shocked at first at the amount it's swollen they said it wasn't infected and the swelling would go down but it would probably take a good few months. But I was a bit worried that the swelling would just never go down so I was happy to be told it would eventually. My specialist nurse has a pacemaker so her saying that was very promising. 

After that we went for our usual nice lunch and overall had a nice day. I've got Papworth next week so hopefully they'll be pleased with me too. Everything seems to be going okay at the moment. Hopefully it'll continue. 

Woops!

I had another blog post written for today but then I nearly killed myself and I thought I'd better blog about that instead. I'm almost tempted to just pretend this never happened. This is honest blogging here. 

I forgot to turn on my pump! 

Yes I actually did that. And it was eleven hours before I noticed. I was told at Hammersmith that I'd start to feel ill within the hour if the medication was stopped. Say I was late home, got stuck in traffic, or the pump ran out of battery while I was out. Eleven hours I had no medication going into my body. From everything I've read sudden reductions or stopping the medication can cause huge withdrawal and what they call 'rebound PH', which is when the pressures in the lungs shoot up suddenly and basically cause you to become very ill very quickly. What did I feel? Nothing. Hence why I didn't notice for so long. I turned it back on. Also nothing. You would expect the side effects I get from the drug to get worse while my body tries to deal with a bigger amount of drug going in, but nope, not me! My body just rips up all the text books. It's good obviously that I wasn't ill because it means the background medication I'm on is helping the flolan to work. But it wasn't the best way to find that out! 

I spoke to my nurse in Hammersmith and she said actually most people do it once. So I feel a bit less of an idiot now. It's actually really easily done because the pump makes no noise at all and you're supposed to keep it in a little pouch and unless I knock it on something or drop it I never look at it to check it's still going. You have to hold down a button twice until it beeps to start it and I can imagine it's easy to just not hold it down long enough (they're quite stiff so they're not accidentally pressed) and not notice that it hasn't started. I struggle with mornings so I probably wasn't thinking straight and I was in a bit of a rush to get ready for a Doctor's appointment so I probably just forgot to press the button altogether. Honestly, I could have sworn I turned it on. But obviously not.

Anyway, to make sure it doesn't happen again I've set a reminder on my phone to go off 45 mins after I wake up to remind me to check the pump is on and as a long term plan I'm going to make a replacement pouch (which I've been meaning to do for ages anyway) with a little window in. The kind of plastic window that's used in wallets for you to keep photos behind so I can see the screen on the pump and that will make it so much easier for me to notice any problems if I do end up doing it again. Which I won't! 

Meanwhile, I'm looking forward to having to sit in front of my doctors when they say, "so, you forgot to switch it on? For eleven hours?" Yes, I'm just that stupid! 

Hammersmith Hospital

It's strange being in London and not being anywhere near the hustle and bustle of the shopping centres and business buildings. Hammersmith is next to the prison Wormwood Scrubs and is slightly in the middle of nowhere. It's all residential and little corner shops, though admittedly not shops that I'd feel safe walking into. It's such a contrast to where I live in the country but when I'm in hospital I might as well be anywhere as all I can see from my window in a brick wall and metal structures and that's usually what I see from every hospital room I stay in. 

My admission yesterday was awful. Asked to get here at 9 we felt guilty for deciding to get some more sleep and arrive at 11 (although when we phoned them, they said that that was fine) and then they said they wouldn't have any beds till 2 and put us in a waiting room. We ended up going to the restaurant and having a bit of early lunch but I must admit I was feeling pretty abandoned and not cared about after the procedure has already been cancelled twice and this was the third date we'd had to come into the hospital. I don't function very well on lack of sleep and was desperate for my bed so I could lie down and rest. Well we got there eventually at 2.30 but by that time the hospital day is pretty much over so I was feeling pretty annoyed that we'd come in and wasted a whole day. 

Things did start picking up though and my specialist nurse came for a long visit to explain everything about the line. It being the second time it was cancelled she wanted to admit me because the doctors are much more likely to do something if I'm in hospital rather than at home. Not the best reason to spend two weeks in hospital but I'm so desperate to get this line in and over with that I don't care how long I have to stay here as long as they do it. Unfortunately I've had a chest infection and I'm on antibiotics so they're being a bit hesitant to do anything while there's any infection so we're waiting for blood results to come back to see when I'll get the line fitted. Meanwhile they're going to teach me how to make up the medicine, set up the pump and care for the line once it's in so at least I'm not sat here doing nothing. 

The good news is because this is a university hospital I can sign into the wifi with my student login from my university and it works really well. I've got Netflix, iPlayer, 4oD and even an app which means I can watch live tv so boredom shouldn't be too much of a problem. In other news the food is much better here than usual hospital food. I had a curry tonight which was pretty tasty. I thought the chicken looked a bit dry so I just had the sauce and the rice. For a hospital to successfully produce a curry is pretty unusual. The food at my Bristol hospital is terrible and Papworth isn't much better. We also got some meal vouchers for the hospital restaurant in case I don't like the hospital food or I just fancy something different because they really can't have me missing meals. The restaurant is really good too and that'll save us a lot of money because I'll probably get quite a lot of food from the restaurant just because it's always going to be nicer than the stuff we get on the ward.

I've been trying to mix up my meds today so I know how to do it but I ended up with the drug all over my bed so that was a great start. But I'm here to learn and I've got plenty of time to practise before I have to be able to do it properly. I'll be doing it twice a day eventually so I'll get used to it. 

Looks like I'm going to be here for a while and in view of the good wifi I hope to be getting some blog posts up over this week. I'm all settled in as you can see:

Thanks for reading! 

Weight loss, hospital and upcoming excitement!

I've had a bit of a rough time of it since my last blog post. My abdomen started swelling more, my breathless got worse, I couldn't eat and I had zero energy. After a few days spent entirely in bed we decided to go to the hospital to sort everything out. The main problem was I didn't eat so the weight was dropping off me and bare in mind I my swelling problem meant that I should have been gaining weight. You can really see how the weight has gone from my upper chest and shoulders. I've found bones I didn't even know existed. They didn't really do much at the hospital. I'd already doubled all of my water tablets but perhaps they took a long time to kick in as I started feeling better after being admitted. I started eating a bit better and they decided to let me go home after a few days as it would be a lot easier to eat lots of fatty foods at home rather than in hospital. They've threatened me with a feeding tube if I loose more weight. I'm just hovering over a severely underweight BMI at the moment and even though I've been stuffing my face since I left hospital and eating between 1,800 and 2,200 calories every day I haven't actually put on any weight. Although I haven't lost any either. According to my dieting app I should be gaining 1.5kg a month so fingers crossed that happens soon!

I'm feeling really insecure about the way my body looks now. I suppose if I was big and everyone kept saying "oh my god you've put on so much weight" and "have you lost weight yet?" and every time I tried to eat people said "why are you eating that? Don't eat!" I would feel the same way. I guess it's enivitable to feel self conscious about something everyone keeps talking about and you have to keep thinking about in order to accomplish weight gain or loss. I feel exceptionally angry at those posts that crop up every day on Facebook. Those "before size zero there was something called beauty" and "no one wants to hug a stick" posts. I find these really horrible. I wouldn't say, "no one like a fat person" or "oh these plus size models are disgusting". But FYI models are skinny because it's cheaper to make sample sizes of clothes in smaller sizes because it uses less fabric. Models all have to be the same height and size as the mannequins so that fashion designers can make clothes and know that they're going to fit whatever model they employ to wear it. It wasn't like an industry got together and decided to define beauty as skinny. There's no need to be cruel to thin people! I know people say they'd kill to have trouble gaining weight but I assure you if you were in my position you would be complaining too! 

I'm slightly concerned that I'm going to look like a drug addict after my transplant being so thin and with the medications making your hands shake. At the moment I look like some kind of child refugee who's got some serious bloating issues. Practically I'm constantly really uncomfortable with my bones being so close to the surface of my skin. I'm sleeping on a foam mattress and I still wake up with either my shoulder bones or my hip bone feeling seriously bruised. Size zero isn't all it's cracked up to be. I have a renewed sympathy for people with eating disorders. 

On to some good news, I have actually been feeling loads better since leaving hospital. I've had a run of really good days, which is brilliant. As long as I have a reasonable nights sleep I can pretty much garentee that I'll be able to get out of the house if someone invites me somewhere or I make plans, which is a huge improvement. Of course I will have the odd bad day but at the moment I'm enjoying my run of good days. 

My upcoming excitement is that I'm going to have my Hickman line fitted next week. Okay, so I'm weird to be excited about this but just the act of doing something that might possibly help my disease is much more preferable than sitting around waiting for the next lot of bad days to land me back in hospital on a feeding tube. Although I swear I'm going to be so annoyed if the new medication makes me sick cause I can't be not eating again! Mostly I've heard good things about it and hey it's something to do, mixing up medications and changing dressings, which is much more exciting than sitting breathing into a machine every two hours. Even though the medications is continuously pumped you only have to refill it every 12 hours and change the dressings on the line once a week so it's a lot less effort on my part. Sure having the line fitted isn't going to be much fun and I've heard they're really painful and bruise up a storm when they're first fitted but I'll deal with that. I've had a lot of catheters in my time and I can't imagine it being more painful than that. They both involve sticking tubes into arteries at the end of the day. 

The only annoying thing is that because it's changed every twelve hours you have to go to bed and wake up at the same time every day because if you suddenly stop the infusion your body can go into shock and people have died from sudden withdrawal. So I think I'm gonna go for 11am and 11pm as I like a good lie in because I wake up a lot in the night and although I go to bed early I don't get to sleep till 12 usually. I'm never going to stay out later than 11 so I'll always be home. The morning one might be a bit more problematic. I'll probably have to get up at 10.30 to mix up all the meds in time to change it over at 11 but if I have to go somewhere. Most likely a hospital appointment I'm going to have to change it on the road, in a cafe or at the hospital, which might be a bit annoying. But I don't think there's going to be a good time to do it really. If I did it earlier in the morning I'd have to do it earlier at night, which might interrupt meals out and visiting family and friends, which will probably be more annoying. 

So you'll probably be hearing from me after I've had my line fitted or before if I have any more thoughts. Thanks for reading!