Pieces in our Medical Pipelines

….Things are rather fraught in the Tow-Hunt household. We both have pipelines of medical appointments that are backing up, and I still have 2 more weeks of school to get through, although I’m clearly running on empty….

I seem to be collecting Royal Brompton Hospital appointments at the moment like some people collect stamps. And this is all the more irritating after having arranged in my last big clinic appointment back in February to collate all of my appointments onto Mondays and Tuesdays to make it easy for me to travel up to the hospital, and not have to miss school. But I have now been sent two Monday appointments and two Thursday appointments both of which were on days when I was due to be at school. And the Thursday ones are with my Dietician-somebody I really need to see! In changing one of the Thursdays to another date I then realised I had double booked myself with an important day at school. So today I decided to take the bull by the horns and e-mailed my consultant to say ‘enough is enough’ and ‘please can you somehow arrange for all of these different clinic appointments to fall onto one day and I’ll come up for a mega session of appointments’.


Such  is my wonderful Team, that they have already e-mailed me back to say that they are working on it and they’re hoping I will have a major series of appointments on April 19, a Tuesday, in the Easter holidays, which would suit me very well. I also today managed to track down my long awaited blood test results from 25th February. My Aminophylline is a little lower than they would like, at 9.7 and my potassium level is still too low at 3.4. I have also managed to e-mail my Specialist Asthma nurse at the hospital with these results and she has told me I need to stay on the horrible Sando-K for the time being. Ack. I didn’t need to hear that.


So that’s my update from the Royal Brompton Hospital regarding my asthma and clinic appointments.

Julian’s health, however, continues to be a source of concern for us all. He is now having a series of investigations at Charing Cross Hospital in London. He is under a top Endocrinologist but they still do not actually know what is the matter. He has been found to have a raised metadrenaline level which is possibly stemming from some sort of benign adrenal tumour. The next week will be a tough week for us both, with his many appointments, tests, scans and procedures to be carried out: hopefully reaching some sort of diagnosis for Julian in the next few weeks. But it’s likely he may have a Pheocromocytoma.
I thank you all for the many messages of support, prayers and well wishes you have passed on to me. Your support is immeasurable.

….Please bear with me-I am more than a bit rattled by all this that we have going on….


6 Responses to Pieces in our Medical Pipelines

  1. James says:

    I would be rattled too! Sending lots of love to your family from mine. xx

  2. kerri says:

    Will be praying for both of you, Sus. Hang in there — hopefully things will be fully sorted soon. ❤

  3. Steve says:

    Hang in there!!
    Dealing with medical issues is always stressful, but you seem to be dealing with it OK. Hopefully they can figure out what’s going on with Julian, so they can fix him and you guys can put this behind you.

  4. Sara C. says:

    You are both in my prayers. I’ll hope for something easily fixable, and not serious…because I know how often people say to me…”Oh, I hope the tests show nothing” which is really not preferable…because they wouldn’t be DOING the test if there wasn’t something wrong…I would much rather that the tests show something benign and easily treatable/fixable.

    AND, a few extra hugs for you…because I know a little bit about what it’s like to be sitting there watching while someone you love is feeling poorly, and there isn’t really anything you can do to make it better.

  5. Elisheva says:

    Sending healthy vibes to you both. Hug

  6. Thank you all for the very kind and understanding comments you have left me/both of us.
    Yes we will crack this and are just taking one day and one test at a time.

    Today, Thursday, Julian is off back up to the hospital for his Liver scan.


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