After the hospital ordeal, I went to Les Halles de Paul Bocuse, it’s a market. There was a fish bar, I had a sole, two small glasses of white wine, and a tiramisu. I enjoyed every bite and sip!
Opposite there was this mural painting of the chef himself. He passed away I think.
Anyway I had a mixture of good news and more tests to come.
First my LAM is stable. It will not worsen because I have passed the age, I am not producing oestrogen anymore. However my lungs are already full of cysts, literally made of cysts blocking my airways so I have to take care. I will always have breathing problems, it’s not asthma and it’s not an inflammatory disease. I should never have been given so many steroids.
So because I now have adrenal glands insufficiency as a result, it is upsetting my immune system and I tend to catch more viruses etc. I must be treated promptly. It is not having a temperature which is an indicator of infection , it is the mutation in the mucus, such as change in thickness and colouring. That means I must take the rescue antibiotics which he gave me ( Yesssssss). Two alternatives. And I must do regular respiratory physio and nasal rinse.
Regarding the rare bird only a fibroscopy would show if I am colonised or not, he doesn’t think it is worth to take that risk presently, I should take the antibiotics and see if I feel better.
Also he is referring me to a consultant endocrinologist, a colleague of his in Lyon so he can evaluate this adrenal glands insufficiency and give me the right medication. He doesn’t think Prednisone is the right one for me.
I also have access to the rare respiratory medical team now. If he is away and I am unwell I can call his secretary and one of his team will see me. Because I explained I can’t count on anybody here. I mean Echinacea and Zinc have their limit^^
So how did I feel? Reassured in a way that I am getting and will get support. Plucking courage to come back here see another consultant and embark on another investigation and treatment.
I don’t know about you but I for one am so relieved to hear the advice of somebody who obviously knows what he is talking about.Everything made sense. The other consultant obviously works in combination with him and has his own speciality so go for it!
Oh and put the echinacea down the toilet and take your abs!
Onwards and upwards.xxxx
• in reply to
Thank you Littlepom! Yes I have a lot of tabs to flush down the toilet when I get home 😃
My stomach is killing me with all those, he said I had gastric acid as well, I thought that was back..
Muy muy Bien Carino, So Happy for you, was worth all that waiting for . and to finish off with Tapas y Vino. Great End to your day... Buenas Noches, Fran, Besitos. XXXX
You may not think so at the moment but i think a little bit like that quiz programme we were talking about earlier'Take your Pick' you chose wisely and opened the box to a first class diagnosis,an end to some unnecessary steroids that were doing you more harm than good and a first class treatment plan that will see you well for the future,hopefully repair the damage done by incorrect medication and give you a far better quality of life.however with your choice of restaurants,this evenings meal and not to mention that wonderful mural i think you have started that already.congratulations on a job well done my Happy friend Fran now go back to your hotel,tell Mum and Bea of your adventure and have a good sleep tonight.
That is good news. I am so happy you’ve got somewhere, or started to get there anyway. Echinacea is great... for a cold. It’s so good to know you’re getting proper treatment and support. And it’s great you were able to enjoy a nice meal. When do you see the endocrinologist? I hope that goes well for you too, whenever it is 🥂
I’m so pleased you have some positive news. Plus further information on how to manage your condition, plus the choice of seeing people who will act for you. I am also on Pred too, plus I’m due a new hip in the New Year, and trying hard to get off it, from organising pneumonia last year. Well done! Pleased you had a lovely dinner .
Thank you and also I lost my darling husband to cancer in August this year, so an eventful year! I’m just about hanging on! But have a wonderful sister who is great.
Oh, Fran, so pleased for you.....you’re finally in good hands! SO pleased you’ve finally laid hands on the necessary antibiotics, as well as good advice about steroid use. It all sounds eminently sensible to me 🎉🎈🎊
The lovely meal sounds like an enviable reward 🥂🎁🍴🍷 I’m envious!! May this be the start of your full recovery 👍
I am so tired I expect positivity will come later, after my first cup of coffee of the day..
The meal was so good and the wine and the tiramisu were on the house! Because as it was late I said I came straight from my hospital appointment did they still serve..I thought that was really nice!
The relaxation should gently kick in from now. That gorgeous meal was a good start, must have been well enhanced by the tiramisu and wine on the house! How kind! I knew I should go to Lyon.
Sounds like you have finaly been given some sound advice. Iv followed your poasts and it did sound as though you were struggling to get anybody to make sence of you problems. Fingers crossed you are on a even keel now and get the right support and treatment to keep you well it is looking alot better now. The meal sounds absolutely wonderfull
Well Fran, I’m feeling very positive about you this evening and have breathed a sigh of relief. I feel that you are now in better hands with someone who knows what they are doing.
Yay to the antibiotics at long last and goodbye echinacea and zinc. They do have there place but......really?!!!!
Yes I must say the Echinacea and Zinc drew a little professional smile, this is when he picked up his pen and gave me a prescription for Azithromycin 😃
Oh Fran im just so glad you are now getting access to a good respiratory team and consultant who your lovely lam consultant has made sure you got 🤩...I just dont understand why you never got all these things before ...for 1 i was told too many steroids are not good for lam and how lonely and scared you must,ve felt when no one was listening to your needs ... great news that your lam is stable and you got 2 choices of abs (your in the elite now ) lol xxx hope your fast asleep now after a busy few days but so happy you got a great appointment today and finally alot of your questions answered .... thats why i stopped half my medication due to getting different consultants who had never heard of lam so where not sure what to do really ! their words ... so just gave me meds what they would give to most people on the ward tbh..... anyway lots of my further illnesses where really side effects from meds so thats why i stopped quite a few xxx xxxxx anyway well done you my now stable lam sis 😘💝❤
• in reply to
My dear Mel it’s exactly that 🤗💕🌺
All the illnesses I have now are side effects of tablets I take or have taken for decades..
Well they thought I had asthma before, they have still got into their heads my dyspnea is asthma. So pred after pred and here I am now totally addicted, adrenal glands not functioning anymore, trying not to overmedicate..
It’s trial and error you know what I mean..
Difficult to find someone you trust though, in a foreign country and I only see him every two years.
I’m better off coming here for A&E treatment next time if I have another chest infection. It’s worth the journey.
I can’t sleep much as usual. Well I fell asleep straight away around 8.30 I was so tired but have been stirring in bed with herbal teas and what not since 12..
I will listen to Belleruth Naparstek’s health imagery now, that usually works..
My grandson has stage 4 asthma and has had a ton of prednisone with since he was 5, now 18. He is away at school and has already been ambulanced to ER due to an anaphylactic reaction to something there in the environment, foliage or other. Is your experience with prednisone common? He hates pred.. Takes breathing treatments, but sometimes they are not enough. Would appreciate knowing your info on pred.. Thx, Jan
Every med has its pros and cons..I have a rare pulmonary disease which took some time to diagnose and few Consultants are competent enough to treat it.
So as a result I had a lot of pred and I have adrenal glands insufficiency.
He has an allergy and asthma Doctor, and he is on an asthma regimen, but has had. Lots of breakthroughs this autumn and is always put on press Is your adrenal sufficiency like Addison's disease? I have become concerned that he may develop Addisons, since his great aunt, my husband's sis has had that for many years, Thx, Jan
Thank you so much. I will give my son this information. The prednisone works on grandson's nervous system after so many days. He doesn't like the way it makes him feel. Thx, Jan
That all sounds so good, Fran. I mean, it isn’t, but you must feel that you are —- at last —- in safe hands, with someone who knows what he’s talking about. I can soooo identify with that. I am a great believer in treats. Daily treats. So what is today's Treat?
With love and hugs
Kate xxxx 🦓🦄🦄 (double unicorns for such s rare disease)
Yes at least I understand a little more..But I have to find a new patience to rely on my own commitment to see things through..
I have to build up energy to make an appointment with their endocrinology department and embark on another medical journey..
So treats are in vogue😜
Today’s treat may be rushing to the local shops before the 11 am departure. I must buy a birthday card and present for Mum before I go back in the nursing home! Maybe find some goodies I saw a good coffee shop.
Thank you for your kind words. I’m also on Azithromycin, 1 tablet three times a week. I hope it helps you. What a fantastic restaurant to serve you those treats on the house. I hope you have a good journey back to Switzerland , and hopefully to start feeling better than of late. Regards
At last some light at the end of a very dark tunnel. Yes preds can be rather naughty, which is why I wanted to get away from them. Some good news that the LAM is now stable. He obviously has your health at heart, trying to avoid the use of fibroscopy. All in all, a good useful appointment.
What they call stable is that degeneration is now very slow so I won’t need Sirolimus which stops cyst growth but has a lot of adverse effects such as lymphoma and other similar symptoms. So that was a relief.
For the prednisone he says it is not used in France for adrenal glands insufficiency, they use hydrocortisone so that’s why he wants me to meet his colleague to switch if I can.
Yes, mixed news, but now you know for certain what you are dealing with, and you have knowledgeable experts on your side working to help you be as well as you can be. So a great step forward.
Yes you are right. Well I met with him 2 years ago, I just didn’t foresee all the implications such as it would be so difficult for local doctors to follow his advice etc.. so now I have decided to go there when I have problems, it’s pointless trying to make them understand what LAM is and how it affects patients.
Sounds like you're back in good hands again! Hope the antibiotics do the trick for you and everything else falls into place. Glad you enjoyed your meal! xx Moy
So very pleased you now have the correct treatment for your condition my friend, getting the right doctor seems to be a real trial and being on the wrong treatment causing all these long term side effects is hard to deal with. Hopefully now this will help you to feel better, you at least have stayed positive. What lovely people to give you the wine etc after visting the hospital and such a lovely treat for you, you deserve it.
Hope your Mum enjoys her birthday, try to take it easy for a little while and re-charge your batteries. Take good care Fran xx
Have you read any books or articles by Havi Carel? She has LAM and is a philosophy professor & one of the chief researchers on the Wellcome funded life of breath project.
Great to hear you've finally got the antibiotics and a clearer picture of your condition. It makes such a difference having confidence in your consultant. Your meal sounded wonderful and how kind of them to give you the tiramisu and wine. Lots more treats needed on daily basis. Hope mum's birthday goes well and take good care of yourself
Yes clearer you are right. A lot of little things I learned about which can come useful. Also he dictated the report in front of me trying to explain the situation to the local team in Switzerland without condescendance.
But Bea and I talked..maybe we will move at some point. It’s too difficult to make things work with opposite medical advice. I ended up by doubting myself, which is not good for me. It is a different medical culture.
I don’t know how you found it having your husband in hospital here and being over here for a long time. I was happy with the way they looked after Dad though.
Anyway it doesn’t suit me and I’m tired to fight the system and reexplaining the ins and outs of lymphangioleiomyomatosis all the time. It’s not my role.
The late lunch was lovely yes. It cheered me up.
How is your husband nowadays and how are you coping?
Mum seems to settle down. Again they insisted on changing her blood pressure medication, we had a terrible day last week end because of it and she has allergic rashes on her face with the new med.
There is definitely a culture clash. Mum said couldn’t they just leave things alone she was fine on her last med.
I don’t know how to cope with that now..today we will celebrate her birthday but I need to have a talk with the nurse about it all.
You have so much to deal with as well as your own illness. At least I'm reasonably healthy apart from my osteoarthritis which affects my knees. I may need replacements in the near future but at least I can care for my husband. He's on a bit of a plateau at the moment with his breathing. He's basically very deconditioned. He's starting pulmonary rehab next week so hoping that will help. He's also got a few additional problems like kidney stones which need attention and he's still very underweight and having difficulty gaining any even though he's started eating a bit more. Feel a bit despondent at the moment as I think he could do a bit more for himself but he doesn't have the fighting spirit others on this site have.
I can't complain about the hospital treatments he had in Switzerland as it all seemed very good and professional while caring at the same time but I guess it's the same as here where it depends on the strengths individual consultants.
Ah osteoarthritis is painful indeed. I think I’m having problems with my knees too. I have put it out of my mind for now 😉
I know what you mean about the fighting spirit, chronic lung disease does that to you..Pulmonary rehab will be perfect, hard to start for sure but once you are into it, it’s good for you. Also you meet others like you..
You are right, LAM is rare and complex so it could happen to any medic who is not informed..anywhere I suppose.
All sounds very positive Fran, and your well-designed treat must have been delicious. You must feel very reassured about your care in the future when your wonderful consultant is away - pity we can't all share him!! Great news - all best wishes xx
Querida, Talking about Your Mum's Birthday, My Mum too has her Birthday on Armistice Day 11/11. I will be Posting a Picture on my FB for all the Family to see and Celebrate her would have been 97th Year. My main memory as a Child was when Mum would believe that those Canons went off for her Birthday every Year, we were enthralled by her stories of the Wars. Sorry, I do get carried away. A Very happy Birthday to your Lovely Mama. and More Happy and satisfying Good Days ahead for you Fran. Besitos me Amiga. xxxxx
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