Bea and Aria arrived safely and to bed when Aria finished her geo localisation of the bedroom and balcony! 😻cats!
Bea took a picture of the yellow guys at the toll, letting cars go through for free and stopping lorries. I was glad she didn’t have a road block.
Aria recognised me, sniffed my hand, let me feed her but gave me the distant pose and look. I will have to get back in her good books!! 😃
I’m not feeling much better. Well chest is not so congested but sinuses are still painful although the ENT never found anything. Physio said chest is still inflamed. Don’t think the Azithromycin did the trick. Finished both boxes. Maybe it is that rare bird still travelling around..
I’m wondering what to do..can’t keep writing to that LAM consultant for instructions and being care for at a distance, it’s ridiculous so waiting to see the specialist on Dec 7th in Lyons, I know it is an endocrinologist but it’s the same hospital so maybe he will point me in the right direction when he sees I’m sick. Wish there was a doctor over here who would care enough but none.
I received a copy of a harsh report from the local endocrinologist which I sent onto Lyons. He highlighted the fact that my situation was complex because the Prednisone was depressing my immune system and causing bronchi-pulmonary infections but I had to take it for my adrenal glands insufficiency. So I had guessed as much but it was still hard to swallow. No response to that over here, no follow up..
Mum had a bad news from her Mri, she has osteitis due to that toe infection. 6 weeks antibiotics.
She was really down last night. They are referring her to an orthopaedic surgeon here. I said you stay as long as you need but she wants to go home. So that’s a dilemma because they made a mess of her foot back home.
Sorry to know you and your mum are having a bad time. I don’t know what to say except I hope Aria will let you back in her good books soon because cats know exactly the right thing to make you feel better and cheer you up.
And maybe you could contact your LAM consultant, he said you could. Describe your symptoms and how you’re feeling, he might understand something from it. It isn’t easy or normal to be treated à distance but if there’s a chance he’ll recognise something in what’s going on with you, it might be worthwhile trying. But I also know it’s not easy to find the courage to keep going back to a doctor. Whatever you decide, I hope you (and your mum) start to feel at least a little better 💐🌺🌸🌼
Hi Fran, so sorry it didn't go as well as you hoped, and your poor mum must be really upset. I hope you both get sorted soon and start to feel better. Thank you for the pic it's lovely. Take care both of you and stay warm.b
Hi Fran sorry your having a bad time but listen if you have any concerns your LAM consultants receptionist/nurse would be happy to advise or get you advice from LAM doc as thats what i do when querying anything ... thats the condition you have so any other illness you then get would warrant a call to them ... i always ring them over here in uk and they brill .....glad Bea and Aria are back but am sorry your mums feeling down i really hope both your luck changes as you deserve it you certainly are a very loving kind person xxxxx take care Fran my lam sis love Mel 😘🤗
in reply to
Hi Mel my LAM sis,
Well it doesn’t quite work like that here. There is no nurse or special LAM receptionist you can contact. It is a centre for Rare diseases.
I was waiting for the LAM specialist report so I have the names of the doctors in his team he said I could contact. I saw he was away at some congress on Twitter..I don’t know them well there I have only been twice and it was just to meet with him.
I could write another email but I asked the GP to coordinate as it is getting complex. You know when several things are wrong with you etc..
For now I’ll go to the dentist tomorrow, finally got an appointment for 2 pm, will have my teeth checked because prednisone also damage your teeth, the infection could be there..
then the GP wants me to see an ENT, a different one to check the sinuses again, again the infection could come down from there..so he will refer me again..
Maybe I get more antibiotics from the dentist or the ENT who knows.,we are just going round and round..
Anyway when I am at the hospital on the 7th I will definitely pop in Respiratory and see the receptionist then.
Lots of love Mel. Keep well xx💓☀️
Fran
in reply to
We are medical mysteries Fran ha we should pen a book "our life with LAM" my god we would have people either weeping with sadness or jumping for joy that their LAM free lives are so uncomplicated lol 😘😤😢😷xx
in reply to
Yes my dear Mel we are unique 😂
If they spent a little more money on us rarities we would feel better I am sure 😃
Well days go by and here we are my LAM sis..that’s beautiful in itself..
Thank you for your continuous support.
Lots of love 💖
Fran xx
in reply to
No Fran thankyou for all your support xxxxx
I have a feeling that azithromycin is not so good against gram negative bacteria such as your rare bird. It could mean ciproxen or even some IV to knock it on the head in the first instance. It is such a pity that you don’t have closer access to someone who is an expert in these things. Is it possible to get in touch with your LAM man to tell him so that he can consider another antibiotic? I don’t give much for your chances with the endocrinologist getting you the help. All of these doctors are too restricted within their own discipline.
in reply to
I am reading you..yes you are right of course. I talked it over with the GP this morning..waiting for answers..
Sorry to hear this News Fran, Wishing for you & your Mama to feel better soon, if that is possible. Delighted you Have Bea & Aria back, Aria will come around and start cuddling up to you once she has her Bearings right. Love n Hugs. xxxx
Pleased Bea and Aria home safely. I take azithromycin 3 times a week, Pred down to 2.5 mg after 18 months of trying, but suffer from polyps too, which the pred srunk, but now back , which encourages nasal drip in throat at night , plus cannot breath properly only via mouth. It’s a vicious circle. I’m sorry you have all these problems plus your Mums health too. Ray of hope is the man your seeing in December. My chap said. Will be on azithromycin long term to get off the pred.
I keep my fingers crossed for December yes..I finished those 11 days of azithromycin 250 without great success. I had 2 boxes of 6 and had to take 2 tablets on the first day.
Thank you for sharing x
Hi Fran, it's pain when thing don't get sorted. Hope you and your mum get to feel better soon. Love Majt 😘 xx
Wonderful photo but not so good is to learn of your continuing problems to at least feel a little better. Its just not fair and you have the added worry of your dear mum. Best wishes.
I think i would ring the lam specialist for advice rather than waiting. Fro what you have said previously he knew what he was talking about and happy to give propper advice. I can understand your mum wanting to go home maybe you could ask her to stay just untill her foot is sorted. I do hope you are boath feeling better soon. 🐈 i love the pickture but im glad i dont have any snow yet 🧣🧤
Apart from trying a different antibiotic as suggested by LP and trying to blast your rare bird the most important thing that would help is a little stability in your life.all of your recent activities are piling up the pressure on an already weakened system and consequently you appear to be on an endless cycle of inflammation and infection.
Just how you can achieve that stability with a Mum still poorly,your continual globe trotting and an apartment still in the throws of refurbishment even the great and wise Ski's doesn't know.
So useless advice my Happy friend but just wanting you to know that your dilema is constantly in my thoughts and me and the scruffy one are casting spells of goodness and sending sprinklings of fairy dust in the first class post in the hope of curing you quickly.
The flat is nearly done. Bea is taking over now she has arrived. It was lovely to go there with her this morning and checking everything together.
She is thinking of moving in next Tuesday now.
I won’t as they will repaint my room the right colour that is white and not greyish bluish and my bathroom is not done at all. Not that I mind greyish bluish but it doesn’t go with my furniture.
Anyway I still have Mum who is quite upset with her osteitis now, doesn’t know if she is coming and going. It took 30 mn to get the doctor to explain she had no choice but to go on antibiotics for 4 to 6 weeks if not she would lose a toe! At 91 imagine..
She was in total denial. The doctor explained the mri etc
That was quite stressful for the both us because she kept on saying she wanted to go home as planned on the 29th. In the end I said you do what you want Mum.
I expect it will take time to sink in.
As Bea said: You can lead a horse to water but you can’t make him drink.
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Update - I saw rheumologist today 
Wife has check with Asthma nurse on Tuesday
Copd emphysema update
Daughter’s lung biopsy
