Just received this photo from the LAM symposium in Cincinnati.
For lung disease patients:
You know your own body. You know when something is not right. Trust your intuition.
I thought I had asthma most of my life and I had to wait until I was 64 to have a Lung CT Scan although I was seen by respiratory specialists.
I didn’t listen to that little voice inside and I thought who are you, they know better, they are qualified to know better.
Well you know that diagnosis gave me a courage I didn’t know I had, it’s called awareness.
A coincidence I got this mail/photo from a very courageous LAM patient( who went all the way to Cincinnati by plane to the LAM Foundation symposium) as I am going to hospital for my checkup this afternoon!!
Well nowadays younger people can speak for themselves and have access to more knowledge that we used to.
I’ve read all three of this morning’s posts. Thank you. I don’t have LAM, I’m pretty certain, but your focus on knowing our own bodies and trusting our own intuition is an important message to all of us, especially with breathing problems because life can be so miserable if the medics get it wrong.
In my case, I’ve spent the last five days trying to help the economics of the NHS, swapping my highly effective Seretide 250 for the cheaper Sereflo. At first I had a mild headache, tingly lips and a sore throat, also mood swings and an increase in my light sensitivity. I kept blaming something else causing the changes, kept rinsing more and more, to stop the sore throat, with some success, but the headaches get worse every time I take more Sereflo. After a sleepless night, due to a crashing headache, you’ve given me the push I need to contact the surgery today, hopefully to get a new prescription.....I say hopefully because we always have to fight for these things, and I’m at a new surgery too!
So thank you, my dear friend, Fran. ❤️ I’ll put down my cold compress and contact the surgery very soon. I think my intuition may be right!
I hope your appointment today is helpful, and the rest of your day is good. Pouring with rain here ☔️☔️☔️
Yes, there is no hierarchy among those diseases, thank goodness for the short name version of lymphangioetc 😃
Go for it..A new surgery A new start!!
get the prescription you deserve..your GP will find a new inhaler which doesn’t have a generic..although we miss our old ones, Pharmacist told me quite a few of those generic meds have excipients which don’t always agree with us..
I saw there was peanut oil in my nose gel the other day. I mean who would think of putting peanut oil in a nose gel honestly!! So allergenic..
Morning Fran, you are so right about knowing your own body and young women getting access to information. I’m glad you have now taken control and gave awareness.
Many women are so courageous and I like the photo on your post.
Heard on the news this morning that the leading cause of death in women is dementia! Who knew?
I hope your check up goes well and you are feeling a little better.
It was terrible. The pfts were awful to do and I have no results. The new consultant said it was fine for a LAM patient. He wants me to wash my nose 6 times a day, I said it gives me nosebleeds..is against giving me antibiotics just yet wants me to ride it through and says prednisone is very bad for viruses. I will end up with increased weight, diabetes and heart problems. I said I have adrenal glands insufficiency and I have no choice.
He said phone next week if you are still coughing but your lungs are clear.
So I went to the local bar and had a non alcoholic beer!! And now Im doing my nebs. I will take some paracetamol and hope for the best!
i would be inclined to ignore his advice and do what you feel will be best for you.you know your own body by now!i would also be inclined to put a little alcohol in that beer.it will do you good and help your body relax.
I’ll give it another 24.h/48h. See if I get better or worse 😂I have rescue meds leftover. I’ll see what the nurse says. She already said forget rinsing your nose 6 times a day a maximum of 3 as on the pack.
Did you see Spain beat Croatia 6-0?? I fell asleep as usual, missed the match and woke up on episode 4 of the new Jack Ryan! Good stuff actually!!
Terrible hospital consultation really. Changing doctors is difficult. I mean he is basically right about meds and long term effects, well you’ve got to live on and it’s too late for me to turn around. So I will have to pluck courage again, phone him for a prescription if I feel worse.
I will probably have to go in again to have my chest checked or an xray.
Hope your check-up goes well Fran. Take care, Sheila x
I totally agree with the fact that we know our own body and the fact that like you i now have the ability to question the decisions made for me i still have the final say in my own mind xxx Good luck today with your hosp appointment and the journey xxxx Enjoy your week My lam sis xxxxx.
We do know our own body, it is so frustrating when health workers won't listen to us. Then we end up being seriously ill by which time we don't actually feel like saying "I told you so"
Thinking of you and hoping your check up goes alright. 💐
Hola Querida, Always said this Fran, We know our own Bodies more so than the experts, They supply the Meds so we can find which one suits us best. Yes, Carole I also Saw the News re Dementia. My Mum Died at 89 , she had Dementia for Years, It was old age and the Body stopping. I go to see my Beautiful Sister on Sunday, she is in a care Home as Alzeimers has found her. I know we can recall our Younger Years together before it takes complete Control. It's when she asks me "Do I Have Grandchildren" !!!! She has 3 little ones.. xxxx Abrazos .Love & Hugs to You all xxx
Sorry I didn’t write before, I’m juggling between whatever I am having and chores..
I agree with you but there is this doubt in my mind now, was he right, am I silly rushing to my rescue abs etc.. so I haven’t taken anything yet..not feeling great but not worse, I mean no temperature, nebs are ok..well taking all those homeopathic remedies the naturopath gave me, I don’t really believe in homeopathy but I’m thinking surprise me!
If only for once I could clear this thing I have without the 10 days 2 tabs x3 a day abs the GP prescribed, because I know I will end up on my knees..
Still I have respi physio today and although she demolished my back she knows her stuff so I will get a proper advice. The one who came yesterday because she was off said it was dry up top and in my low bronchioles and I had to do this draining which didn’t come to anything.
Anyway I will decide today after I see her and talk to the nurse.
Wrote an email to the lung specialist saying I was struggling as he said if you don’t feel well let me know, all I got was thanks for your feedback and if you’ve got to dilute your nebs use 0.9% serum because I said it is really stinging my throat. So no follow-up suggested really.
Then my brother is arriving tomorrow for a few days and I’m meeting tomorrow in Geneva so I’ve got to be well enough to get out of here!
I am really looking forward to see him.
Hope you are doing fine Querida and abrazos y besos igualmente xx
Buenas Dias Carino, You do have to Juggle an awful Lot Fran, and having to remember , if, how, when, can I, can become too much, I forgot my Night Meds once this week....The Rescue Meds are Good, But if I can avoid having to take them ,I will, said this to my Consultant on Wednesday, she nodded and said Yes, after all this time you Know your own Body. She is very Understanding. I Don't take Nebs, other than my Salt Pipe which helps me every day. In Hospital Meds are Forced on you, I understand they don't have time to single anyone out, I take control of mine and the times I take them, The Nurses are Thankful. You will have to Slow Down Hun, It is Wonderful that your Brother is arriving and you will have a great reunion, much like myself this weekend, have not seen my Bro., for 3 Years and My Sister who's in a care Home, for 7 years, We have always kept in touch by FB for Bro, and Phone for Sis, (she knows my Voice).
I am feeling very Good Thank you Fran. I do hope you can Relax and Enjoy your Wonderful Visit to Geneva with your Lovely Brother, Thinking of Bea & Aria Also. Abrazos, Besos y Amor. XXXXXXX Hope you have a Better time with the Physio Today and feel the Difference. xxxx
I totally agree with you Fran, was told I had asthma, which I know I have, but when I was constantly chesty, my doctor would say it's your asthma. After pneumonia and being hospitalized, finally got ct scan and diagnosed with bronchiectasis, I'm 100% sure I had it for years before diagnosis.
No it was a mess..a different one, I have to start all over again..
Never mind.. I had to get a rescue prescription from the GP. Just had respi physio and I did well to ask apparently, she said I was starting a chest infection it could go either way, that I had to rest and drink a lot, take the rescue antibiotics if needed.
Well the consultant yesterday heard nothing and said it was a virus. He didn’t want to know when I said I don’t recover by myself anymore, I always end up with complications. He said come back if you get worse..the usual..
Indeed..my back is just too painful..I wrote an email this morning putting my GP in copy explaining that I am aware that 90% of respiratory problems are viruses but in my case I always get a secondary infection and I am not ready to rupture a cyst and cough blood like last month.
So let him decide or live with it, if I am not better tomorrow I take my rescue meds.
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LAM
I found this so beautiful and true....
Problem with Incruse and Relvar
Felling so cold with legs and hands 
