LAM update

The LAM forum lady was very helpful she gave me the name of a Specialist I will follow up.

Now Im supposed to have a whole list of things to do, go to a heart specialist for an ultrasound to see if the heart contracts properly, have the new pneumonia vaccine prevenar 13, see an ophtalmologist because dry eyes and dry mouth have a link, see the gyne to get off HRT because oestrogen feeds LAM well that's the list for the GP to do and the respiratory specialist is sending me to a specialist dermatologist to eliminate another disease Birt-Hogg-Dube..

No point in asking for my life back.. At least the physio and one-hour gym twice a week is fun, 15mn on the treadmill, pressing a foam ball with arms 3x10 and thighs 3x10 always breathing out on effort..then hercules 5mn just pulling 4 kilos, then leg press 5mn, then 5mn on the handwheel, 5mn on the steps and finally 3x10 on pulling the elastics...then Im worn out but I am with all those elderlies with oxygen bottles ex smokers I think and that gets me down. We have to clean everything with wipes and use gel all the time so far so good..

Hope you are all well, it's springtime :))

Take care you all xx

3 Replies

oldestnewest
  • Hi there, I was wondering how you were doing. Well done for trying to pick the lighter bits out of your ever increasing medical journey. Do you think that you would have got the same care in Uk? I've not been great but hearing all what you are going through then I feel very fortunate! I see a chest specialist next week who I want to find out why I can no longer eat dairy without having a severe coughing and breathing event. I'm currently laid up with really nasty flu. There is a lot of it at the moment over here, and after not haveing left by bed for a week now I've decamped to my mothers who is being very sweet and making me cups of tea etc;0) I really hate putting on her but at least she gets to see me over Easter! You don't know but to add to my own list I have suffered with ME for many years and the flu is just like ME on steroids! At least I can see the screen now to type;0) Yes Spring has sprung. I sat outside for all of 15 mins today in the sunshine which was lovely, but then needed to be horizontal. Unfortunately the rest of Easter weekend is going to be a wash out here. I'm not going anywhere though! So Happy Easter Happy London. Will be thinking of you and your many treatments! 

    Take care...

    Gino x

  • Hi Gino Good to hear from you!!

    Yes I think I would have had to move up to the Nottingham programme 200 women have that Lam in the UK..I would have had to be admitted on their trial programme..the lady has actually invited me over to their annual conference there's also a doc from Cincinatti but 11th June I have a big family wedding!! Got to get your priorities right 😃😃

    So sorry to hear about your flu! Im glad you've got your Mum close by. Lots to drink yes..tell me what the specialist says..ME is awful yes worse than coming down from steroids, drink lots of white tea it has antioxydants good for your immune system, im having that in the morning and Chinese tea in the afternoon she said it was relaxing if i stewed it for 10mn. Trying you know now 

    LAM is rare I thought Rare like what? Well rare like they have no adequate solution for you..apart from lung transplant worst case scenario..doesn't matter where you are, makes you an object of interest but apart from loads of tests I still feel like I ve got severe asthma..going to reiki next wk booked for april 1st!! 

    Lots of love Gino xxx

  • Hope you get better soon! At least it doesn't sound too bad... Not so sure about the vaccine though...

You may also like...