As many of you know I attend the Cystic Fibrosis Unit at The Royal Papworth Hospital. If you have read my previous post then you will also know that I am due to start an innovative treatment called Orkambi!
So I headed to Addenbrookes to have a Periferally Inserted Central Cathetar (PICC Line) inserted. It didn't go exactly to plan and was difficult to get in, but they managed. I had a call from Papworth on Thursday to say they had a bed for me on Friday, only my sister was ill so couldn't have Ellysia. I ended up taking her to the hospital with me, starting the IVs and coming home for the weekend, with the aim of returning on Monday. I had awful weekend, and then came to Papworth as planned.
On Monday evening I started to get a lot of pain in my arm and it started to swell. The nurse stopped my IVs until a doctor could see me. The next morning I went for an X Ray, I don't know what that showed but I was then sent for an iltrasound on my arm. They discovered a blood clot the entire length on the line (15cm)
I had it removed that day and waited until Tuesday for the next plan. No access meant no IVs. A blood clot meant anticoagulant meds. But they wanted me to inject them into my stomach every day... I can't deal with needles so I said I didn't want them. They said I had the option of tablets instead, I need to be on them for 6 months but I can't take the oral ones with the Orkambi. This means that I have to push back the new treatment for another 6 weeks!!
It's an unfortunate set back but I need to sort these other issues out. I will start the Orkambi, but it's just going to take time! Thank you to the people that have supported me through all the problems I've had recently! I may not show it, but it's very much appreciated!! Kš
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