Brompton Blitz and Baselines

UPDATED at end: Friday Morning: Blood Results!

….Yesterday I had a big review session at the hospital, well, me, Julian and these complicated lungs of mine….

I had been dreading the day, and right up to when we were about to leave at 8am I was still toying with the idea of just cancelling out and going to school as usual instead. Heck knows why I get myself so stewed up about a day at that hospital, where I’m surrounded by just about the most caring Drs there are there.

If the truth be known, my favourite Dr left a year ago, and since then I have lost seemingly lost out on the personal touch caring approach that they always had-that little extra ‘how does this affect your life question?’ means so much to me.

I have a great email and phone relationship with a particular member of my Consultant’s Team, but we have never met in clinic as she didn’t work  Wednesdays. But she now does and yesterday I saw her for a 45 mins consult, and she was just about as thorough and kind and lovely as I could only previously have imagined. She also works right hand with my Consultant and kept popping in and out to talk to him and decided the way forward. These are some of our conversation results:

  • She understands I am becoming quite demoralized by things and how I need a tweak here and there, without having to miss more school.
  • We have therefore found a way of switching me to Dr Menzies-Gow’s Monday morning clinic-I think it’s an Asthma and Cough clinic, which will definitely suit me at the moment!
  • We need to re-chart my baselines, off meds, and repeat a myriad of testing some of which I haven’t had done for several years.
  • I need to redo by sleep study-she wonders whether I am on too much O2 overnight-I do sometimes manage without it, actually. But apparently my cough could mean I am becoming slightly apnoeic.
  • We need to reasses my diet-particulalry now the GP has put the fear of God in me about my cholesterol level and I’m dropping lbs again.
  • I need to learn better ways of coughing and clearing my lungs without pulling rib muscles all the time!
  • We need to balance my dose of Aminophylline so that it doesn’t affect my migraines so badly.
  • I need a repeat Dexa scan, and a lung CT again-but I’m concerned about  this amount of nuking!
  • I need the full LF tests done off meds and she now knows how I feel about the ear slitting blood gases so I am going to have the arterial one instead.
  • I am going to work at my conditioning and try and get back in to my swimming, like I was managing 2 years ago. Unless I give it my best shot I wont really know if it is time, new Puppy or lungs holding me back!
  • Plus I can reduce my Pred back down to baseline, starting Friday-can’t wait-they think my lungs are currently ok enough to crack this 10mg level again!

Anyway, for sure there is more. The day was traumatic emotionally as the whole time I was there I had memories of dear Bex in the back of my mind. Enough to draw tears on several occasions.

I collected a stack load of forms for tests and bookings and future appointments and the knowledge that I am going to have to come in for a few days as a block booking to do all these tests and find my new baselines-but I’ve said, only on a Monday or Tuesday!

So lovely Suzie is writing to my GP about all my concerns and what needs to be done. And she is also telling my Doc that I need to stay on Mucodyne-my GP had previously told me it was addictive and she had reservations about this! Apparently it’s the minute quantity of alcohol in it and not the drug. Considering the thickness and quantity of phlegm I’m still coughing up everyday I need to stay with it. I gave her a delicious sample-ack indeed!

So I’m trying the capsules now three times a day rather than the liquid. Good old RBH gave me a massive quantity too so I don’t have an immediate hassle getting more drugs out of my Doc at home. Zzzz!

And after 2 follow up phone calls when we got back yesterday afternoon, I’m now just awaiting my Aminophylline and Pred levels from yesterday’s blood work. I’ll be happy when I’ve got the closure on that lot of appointments.

….And I guess I’m now just waiting  X number of weeks for my bed booking! Ack….

UPDATE: I was phoned on Thursday morning by Suzie, to say my Potassium level had shown up as very low (2.9) and I needed to see my GP for a 2 week potassium supplement and another test. She also said they appear to have lost my Aminophylline result so I need to get that tested asap. My Pred test result was still in the cooker so to speak!


6 Responses to Brompton Blitz and Baselines

  1. Olivia says:

    Hey Sus,
    I am glad you have a good rapport with some of the team you are under. it makes a big difference. I hope you get through all your appts and get a bed and everything done asap but have a feeling with the NHS it may not be as quick as we like!!!! But hopefully out of it all you can establish your chest etc. i do find having a fully work out and lung functions and all sorts of tests periodically quiet helpful as it does show how things are going although at the time i hate it because A) it means spending time in hosp, B) it is coming off meds and feeling rubbish and C) i jsut hate lung function anyway!!!!
    But i do wish you luck with it all. Hugs x

    • Thanks, Olivia. That’s so kind of you. I also know how much you understand about trying desperately to avoid hospitals. Sometimes it works sometimes it doesn’t. They are at least now aware that we have a new puppy so that should be counting in my favour for staying out as long as possible! xx

  2. James says:

    Hi Sus,

    Sounds like all the bases have been covered. We are here for you! Good Luck!!!

    Hugs!!! xx

  3. Elisheva says:

    Good for you for keeping up with all the and not just sitting there while they’re talking and anwering periodically with “uh huh”… Kind of like I do at the dentist when they tell me to floss daily…

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