A Muddle

A fellow PH blogger (Gem) once noted that when she started writing a blog, things suddenly started getting “interesting”.  I’m beginning to see what she means.  I made the decision to start a blog in December, and things have not gone that smoothly since!  I was expecting to be writing this next blog from the Royal Brompton hospital, but I’m not!  Let me explain…

In the UK and Ireland, there are 9 specialist centres that deal with Pulmonary Hypertension.  This idea is an NHS success story.  By creating centres run by specialists who focus on PH, the medical staff are able to learn more about the condition and conduct more research on it, and so patients benefit tremendously from their expert knowledge.  Unfortunately, of the 6 specialist adult centres in the UK, 3 are in London, 1 is in Cambridge, 1 is in Newcastle and 1 is in Sheffield… none are particularly near to me in Banbury!  When I was diagnosed, I became a patient of the Royal Brompton hospital in Chelsea, London.  To stop patients from having to travel too far for their routine appointments, in recent years the NHS have tried to bring in “shared care”.  For me this means my local specialist heart centre (The John Radcliffe in Oxford) works with the Brompton to look after me.  Some of the Brompton team travel down to my 3-monthly routine appointments at the JR, and sit in with my appointments with my Oxford consultant.  Any decisions about my care are made jointly with my Oxford consultant and my Brompton consultants.  For the last couple of years, this has worked beautifully, especially since the appointment of a specialist PH nurse at Oxford.  However something has got muddled up this time.

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After discovering my Pulmonary pressures had increased, my case was discussed at a meeting between the two hospitals.  From the letter I received afterwards, they had decided to move me on to a different type of drug, Epoprostenol.  Unfortunately, both hospitals thought the other had discussed it with me, but the first I knew about it was when the Brompton admissions office rang to arrange for me to come in for a couple of weeks to be started on it.  I was initially really shocked and sad to hear I was being put on to that drug, as it is administered via an permanent IV line; a very daunting prospect.  However after a good cry, and chats with my friends, I started to feel happier about it as hope it will get me stronger again.  I discussed the drug with one of my Brompton PH nurses, who confirmed that I was being changed on to it.  It looked like I was being admitted to have a couple of days of tests, then an IV line inserted, and a couple of weeks of monitoring to get used to using it.

So I packed up my life in Oxford, organised for the neighbours to look after the dog, Phil arranged to work from a London office and stay with friends in London, and I practised lots of anxiety techniques to calm myself about the prospect of going back to the Brompton and starting a scary new drug.  However somewhere between the conversation on Thursday, and turning up on the following Tuesday, my admission had been lost.  There was no bed for me, no tests for me, no doctors meeting for me.  All that appeared to be in place, was for me to have the line fitted the following week.

Cue a lot of tears and stress, as we tried to work out what had gone wrong.  The net result is that I am now going in next week for a couple of days for the tests and the doctors appointment.  If an IV line is to be fitted then this will be arranged afterwards, however I’m still hoping that there may be an alternative drug treatment.  I am also being taken off shared care with Oxford and am now back under the Brompton’s sole care, with the hope that if there is only one hospital in charge of me, then things are less likely to get muddled.

So I’m back home for a few more days.  I’m absolutely shattered and very symptomatic, but Lottie the dog (who was extremely pleased to see us return) is happy to spend the next few days cuddled up to me whilst we watch some films.

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6 thoughts on “A Muddle

  1. Have you asked about the drug trial at Papworth? Apparently its already in use for rheumatoid arthritis. I will certainly be asking next time I go to Papworth. xx

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  2. The IV line and epoprostenel is something you will get used to and if it works you’ll be pleased you had it. When I was put on epoprostenol 5 years ago it went fairly smoothly but suffered many of the known side effects. My line went in a few days later and I was discharged the next day….I was pleased to get home, although a little sore from the line site. I had the stitches removed a week later at my doctors surgery. I hope it works well for you.

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  3. Another fab post. It a a shame that you have had to write it though as I guess a change of plans is always anxiety provoking. Try and enjoy your time with Lottie though and I hope you become less symptomatic lovely. Take care. xxx

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