As well as those huge boxes there were three smaller ones which we ended up putting in bags so we could fit them in the car a little easier. When we got home it was time to sort it all out.
Yes, that is a lot of stuff! And the best thing - that's only one months worth! We get a delivery every month from bupa healthcare, which the NHS use for IV meds as they're much more reliable than the people who delivered my iloprost and it's a bit more serious if I run out or a pump breaks. We've actually found we don't have enough of a few things so we're probably going to have to get an extra delivery this month.
The line itself isn't nearly as annoying as I thought it was going to be. To be honest I don't really notice it at all. The wound is still a bit painful because I still have my stitches in and if I move or stretch a bit too much the stitches pull at my skin but I think the actual line is pretty painless already. I'm getting my stitches out on the 20th June at my Bristol hospital so I think it will be a lot more comfortable after that. I've had stitches out loads of times so I'm not too worried about having them out. I could feel everything when she put them in and I know having them out isn't going to be as unpleasant as that! The pump doesn't get in the way much and it's not really a pain being attached to something all the time. Even at night I'm not tangling myself in tubing, which I thought I would be. Overall I'm pretty happy and I actually prefer it to the nebuliser I was on before. Having a bath is slightly more effort but even that is getting easier, I just hang the pump on the shower curtain and clip the line out of the water with a bit of plastic wrap on the connections so they don't get too wet when I wash. I'm being extra careful about infection, you're supposed to be able to shower, get water all over the water-proof dressing, over the line and the connections but I really don't want an infection so I'm doing as much as I can to prevent it. (I may have recently placed an order at Lush so I'm definitely not giving up on my lovely baths!). Minus the horrible operation, it's been a pretty smooth ride and I'm happy with how things are going.
Here's the pump. It's pretty small, a little on the heavy side, at least a bit heavy to hang around the neck for too long, so I usually just carry it around and rest it on my lap when I'm sitting. The buttons are really stiff so you don't have to worry about leaning or sitting on it. You'd have to press two buttons at once to turn it off and it starts alarming if you do manage to do that.
Making up the meds is getting easier every time and isn't really too much of a bother. It takes about 20 minutes in the evening to make up two batches of the drug, then I attach one to me and the pump and the other one goes in the fridge so I can do a much faster change over in the morning when I'm all half asleep! It only takes a few minutes to put on the cold one. It has to be changed every 12 hours because it's a time sensitive drug that starts to loose it's efficiency after 12 hours and the cold one will only last 12 hours in the fridge if it's then got to last 12 hours attached to me. It's important to change it on time but in a disaster I would only start feeling ill after either the drug had lost all it's potency or I ran out of the drug in the syringe. However they said if I did get stuck somewhere, in traffic or something, I'd have to phone 999 and get an ambulance or police to take me home so I could do it because the pressures in my lungs can rocket up and then putting the new one on late will cause them to plummet again and that's obviously not very good for you.
I'm not getting any side effects at the moment from the actual drug but when they were upping the dose in hospital I was getting pretty bad headaches and hot flushes, which I assume will come back every time they up the dose. But seeing as it wears off that's not too much of a worry. I feel like there's less pressure in my head since I've been on the new drug. Before, I couldn't lie down very comfortably as it felt like all the blood was rushing to my head, but that's definitely better now so whether that's the drug or not I don't know. I'm also starting to feel a bit hungry again, which is actually annoying at the moment because my tummy is swelling like mad and I'm getting full super quick so I can't actually enjoy all this food I'm finally feeling like eating. They told me at the hospital it would be three months till I started feeling any better and that'll probably be true for the breathlessness and the pressures in my lungs going down but I think because the drug causes the blood vessels to dilate (which is why it causes headaches and a hot flushing feeling) it might be already helping a little bit with things that aren't really symptoms of my disease but have turned up because my blood vessels are under so much strain. Who knows? But I feel like it's a good sign.
There's not much to see at the wound site at the moment because there's a patch on it that's supposed to prevent infection and because I have all the stitches it's not sitting around the line like it would normally so all you can see is the patch but I'll probably post a picture when the stitches are out and it's healed a little and isn't a bit gross with dried blood. I realise some people don't like wounds but I'll be wearing a transparent dressing so it's what everyone will see when they see me and like I've said before, we mustn't be ashamed or our scars!
Thanks for reading!
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