Tuesday, 17 November 2009

Post op day 25

It feels like things are settling down quite well. I had a few more bouts of the dreaded AF, one on Saturday and about three on Sunday. These included one while I was sleeping on Saturday night where I was having a dream about cycling really hard and getting knackered and out of breath and then awoke to find my heart going for it at 160bpm. As soon as I hauled myself out of bed and walked around the room a bit it dropped back into sinus rhythm and was ok. It was fine all of yesterday and so far today.

I feel like it is very much related to the stomach issues I've been having - perhaps doctors out there could give their thoughts? The more bloated or burpy I've felt it seems to induce a stress and rumble that initially feels like the stomach spasming but then I recognise it as my heart. Is the sphincter at the top of the stomach called the cardiac sphincter for a reason?

I cut down the metocloprimide (anti-sickness pill) yesterday to just one in the morning and had fewer tummy problems later in the day. This could be complete coincidence but reading the Neoral patient info leaflet (Neoral is one of the immunosuppressants - keep up!) it does mention Metocloprimide as a drug you should only mix with Neoral under docs advice. So I'll stick with once a day and see if it continues to help.

In my nerdy way I just spent an hour or so doing a stock take of the 23 (!!) different medications I am currently taking, putting them into a spreadsheet with daily dose so I can predict when they will each run out. Frankly with this many pills to keep track of it is the only way...and hey, I love spreadsheets because I am totally sad.

The exercise is going well. I do 10 mins aerobic warm ups and then 15 mins on my exercise bike on the rolling hills setting, followed by my mobility stretches to try and keep the rib cage and shoulders relaxed. I'm having particular problems raising my left arm above my head - there is a very sharp pain in my left bicep - feels like a tendon being stretched to limit, and I can't quite straighten the arm. I will keep on gently trying and hopefully it will sort itself out as all the internal stuff heals up. The pain is still very significant, and it feels like across the sternum it is worse which I suppose is due to increased activity and a more normal life.

In general, then, I'm having a pretty ok time and gradually returning to the human race. It is a strange combination of tiredness and much improved lung function and I revel in walking to the shops or around the local parks/cemetry without getting breathless. I really don't want to start taking it for granted and so I make myself think of what it was like with the oxygen and the headaches and dizziness every time I go out. I remain incredibly grateful to the donor, the NHS, luck, Vicky, friends, relations and my own brain for allowing me to cope with such a traumatic series of events.

The only real niggle that I am desperately trying to ignore, and hoping like anything that will sort itself out, is my voice, which remains very husky and hoarse. Most of the time I whisper to try and preserve what there is of it. I try not to think of the eventuality of being whispering Willy for the rest of time, and to be reassured that it will probably come back. The cause is unclear - a combination probably of a long period of intubation and some nerve damage. Apparently one of the vocal cords is not moving quite right and so they don't quite close properly. Jas said that they only generally refer people to ENT surgeons after 12 weeks as it generally does recover, but he's going to start the referal process now anyway. My chances of singing again in any serious way are in the balance but I comfort myself with the fact that I no longer get out of breath playing the piano and so take great pleasure in that, and have found it doesn't hurt my arms or ribcage too much so I can practice already in all my copious free time.

Sorry this is such a long post - I'll report again tomorrow following the first clinic appointment.


  1. There's nothing wrong with a good spreadsheet, Willy!

    Best wishes with the ongoing recovery and taking joy from the world.

    Accountant Girl

  2. I say, if you can't put it in a spreadsheet and make a graph from it, it isn't worth doing!!

    Thinking about you, good luck tomorrow.

    Sarah x

  3. Went to a British Voice Assoc workshop a couple of weeks ago where they talked about Vocal Flaps (not cords !). Really aimed at professionals but was useful to hear about the mechanics & producing different sounds etc.

    Had a surgeon there who had pics of cysts and film of folds in action - all very interesting. Also, before and after (surgery) pics of folds and what can be done which actually seems quite a lot. Another speaker (his sister) a former opera singer who works at the same voice unit as some sort of vocal coach, talked about the things to do to help ease problems. One thing she said is not to whisper as this can be straining, it's much better just to rest & allow things to recuperate. But then again you have to speak sometimes ... perhaps you could compare notes with Jenny, her voice has been gone for weeks now.

  4. I made a list of my girlfriend's cf and transplant meds - names, dosages, all that stuff. I didn't make a spreadsheet because I wanted a piece of paper I could grab in case something happens to her.

    Also, after her double-lung transplant, she couldn't talk for a little while and couldn't laugh for quite some time. (She laughs beautifully now, I might add.) So I wouldn't worry about the voice thing too much.

    Glad to hear you're doing okay still. Hope you continue to be well!

  5. Goodmorning vicky and will!

    hope the outpatients appointment goes well!...we'll be thinking of you!

    also hope you enjoyed the rocky road and christening cake!...more can very easily be supplied!!! just say the word!

    los of love

    the wilsonsxxxx

  6. Delicious rocky road and cake! Thanks Kate & Stephen.