“Voodoo Child”

Hi everyone. My track this week is probably best known played by Jimi Hendrick but I was always a big Stevie Ray Vaughan fan so humour me.

As you all know I am now mainlining 3 times a day. I went to my London residence last Wednesday to get the long line so I could self administer the treatment. First off I must mention that the roads were very busy. When I drove up to London in January it was much quieter. There also was a problem trying to find a place to park. I managed to get in a disabled place but I should really only park there for 3 hours so I had to leave a message on the dashboard and hope for the best. Thankfully on my return there was no ticket.

I got there just before my appointment and was met by a nurse that recognised me. She asked if I had done my own IV’s before which I have and she was the one that taught me. This is an infusion though and I have never done this before. I was taken up to the Lung and Heart Day Unit (Foulis Ward). I had a great nurse looking after me and explained all about the infusion. All the medication was delivered to me the day before with a medical fridge as it is all mixed for me and has to be kept between 2 – 8 degrees.

These little containers of antibiotic are like baby bottles.

In the middle is a bubble which contains the drug. I do not have a scientific bone in my body so hopefully this week’s track makes sense a bit more. There is nothing to switch on, it does not have to be elevated and once connected to my line it takes 30 minutes and the bubble disappears. How does it work! Magic.

The line was done, I had bloods taken and the physio came to see me with a student. Also while I was there I agreed to take part in a study. The student physio showed me a different technique for lung clearance. I usually use my acapella but I hadn’t taken it with me and sputum samples were needed. I did my first infusion under the watchful eye of the nurse and I must admit it was quite easy and straightforward. All the flushes are in prefilled syringes as well so no mixing at all. Every person I met last week was great. All very chatty and nothing was too much trouble. I have to go for lung function tests on the 31st and they have arranged I can come back to the ward to have the line removed so I only have one more visit.

I do feel sometimes that things progress at such speed. The science behind all of these things and the Covid vaccine doing its stuff it is all quite reassuring.

There is one thing I miss. This magic cure has to be kept in the fridge and needs to be taken out and used at room temperature. My first dose is 6 am so hubby gets up at 5 takes it out of the fridge he then comes back to bed. I get up an hour later and start the treatment. If I was in hospital the nurses would creep in and connect me up to a bag of stuff and I wouldn’t have to worry about dozing off again. On the whole it is fantastic as it means I can do my hobbies and relax at home with hubby.

So a big thank you to the Royal Brompton Hospital for looking after me. Having a chronic illness is not always easy but you all help give me a great quality of life even though the lungs are really duff now.

There are a few people this week who are in my thoughts. A very good friend who sadly had to say goodbye to her brother. Then a couple of people that seemed to have ended up in A & E. Not lung related just unlucky cuts and breaks! Take care all of you.

Stay safe. x

2 thoughts on ““Voodoo Child”

  1. Hi Jill, I’m thinking of you lots and you are in my prayers.
    Sorry to hear you’re not well and i promise to come back to zoom as I miss you all. Sending all my Love and Hugs.
    Catherine XXX 🥰


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