Saturday, 20 September 2014

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. 

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