News and thoughts..: Hello BLF friends... - Lung Conditions C...

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News and thoughts..

β€’36 Replies

Hello BLF friends,

Hope you are doing well πŸ’

Some news and thoughts to share.

Full blood work and injected MRI for that enlarged pancreas on Thursday. So fingers crossed 🀞

As for when I found out about LAM, by chance, after continuous chest infections through a CT scan, I have found about this through another thoracic CT scan after a bronchitis and pleural effusion.

I wanted to tell you I had 2 genetic tests, like mouth swabs, to see how my metabolism reacts to pharmacology. It was called test Cypass. I had read about it and asked for it. It is not reimbursed because it is preventative medicine so I paid 300 Swiss Francs.

Well I thought it could be worthwhile as my β€œfilter” organs seem to be affected by the amount and type of meds I take.

Undoubtedly the liver, kidneys, and pancreas now are suffering.

I have liver cysts due to medication, I have an adrenal glands insufficiency due to steroids and now my pancreas is enlarged by 35mm..since the last CT scan so in 6 months, well except if they hadn’t spotted in January.

I must tell my LAM Sis 🌸 reading this that I am not on Sirolimus so it can’t be that and I don’t want you to worry, we all react differently.

I have had a lot, a lot of antibiotics for the last 40 years, a lot of steroids for various chest infections etc

The other point of this test is to find out which medication actually fits you best.

So we’ll see.

I remain quite confident and positive. I think we need to be vigilant without letting it taking over our lives.

I feel grateful to be in shape at 66 despite all those mishaps. I believe that the well-being approach, naturopathy, and mindfulness meditation have personally helped me.

I am lucky to have retired 4 years, time is of value.

Wishing you lovely summer days 🌻

Love,

Fran xx

36 Replies
β€’

Such beautiful flowers Fran, and such a positive post as always from you. You do seem to be receiving expert treatment so I hope things will improve.

You’re wonderful attitude and love of life seems to get you through and long may that continue. Keep doing whatever helps you.

You give inspiration to others.

Take care. Xxxx πŸ’πŸ˜πŸ’πŸŒ»

in reply to sassy59

Hello my dear Carole,

You are very kind ❣️ as always.

Well in a way the more they test the more they find..will it come to something we’ll see. No point in worrying really, I’d rather enjoy my free time..

Hope summer is treating you well xx

Fran

sassy59 profile image
sassy59 in reply to

You have the right attitude Fran. All fine here thank you. Take care xxx πŸ‘πŸ’–πŸ˜˜

in reply to sassy59

Sorry Carole I had a problem with my iPhone APP I had to delete it and load it again then woke up to 24 notifications πŸ˜ƒ so I’m trying to catch up!!

in reply to

Lots of love Fran πŸ’•πŸŒΈπŸŒ·

sassy59 profile image
sassy59 in reply to

No worries Fran, hope all ok now. Xxx πŸ’–πŸ˜˜πŸ’–πŸ˜˜πŸ’•

Morning Fran. Just finished my deep breathing and mindfulness. And yes over the last 3 weeks I feel so much more in charge of myself. Stay as positive as you are and I'm sure your treatment, so much better than what I am offered, will keep you going. Short post as I am off to art class. I'm no Picasso but I'll try my best. Enjoy your day. Jane

in reply to chubby2x22

Morning Jane,

Thank you!!

That’s lovely! 😊

I love hobbies! From embroidery to football to crosswords, and looking for a good book..

I’m doing something less creative right now, having my colour done πŸ˜ƒ

Will be a new woman in 30mns!!

Take care x

Fran

Bienvenido Fran a tu Pais y Casa. As Carole says you are always so Positive and your Knowledge is Flawless. Flowers are Beautiful. You & I are the same age Carino, It is just a Number, you Live accordingly and Enjoy the Mobility of getting along with these Trials & Tribulations. I bet Bea & Aria are so happy your Home now. I may have missed any previous Notices, I will look.

Here we are with our Glorious Sunny Weather and it being the Hottest July ever, Flowers are in abundance and everyone seems to be smiling. Enjoy your day Fran, Bea & Aria. Abrazos y Besitos. XXXXX

in reply to Hacienda

Hola Carolina

Si Abrazos y Besitos!! πŸ€—πŸ˜˜

Yes good to be home thank you

Lots of love xx

Fran

Hello dear Fran it's good to hear from you, and see such a beautiful picture again from you 😊. You amaze me how well you understand and research your condition and push the medical services for those things you know you need...I think we can all learn from you on that one. You're right to feel positive, things will inprove with treatment... and keep on those specialists backs to get the treatments you need. In the meantime we're all thinking of you and cheering you on Fran πŸ˜™πŸ’ͺπŸ’• Lots of love to you xxxx

in reply to breatheeasy1

Hello my dear Anne,

Hope you are feeling better these days πŸ’•

It is all coincidental...I read about this test in one of the glossy magazines in the waiting-room. No, I don’t research for myself. Well I did at first when I was told I had LAM, to know what it was..

Actually LAM Action recommended an episode of Holby City on LAM this week. I never watch Holby but I did and it was a disgrace from the info to the care provided. Just made to scare any poor soul about rare pulmonary diseases. I wrote to them about it. Really disappointing effort from the BBC, especially as they had asked the Nottinghamshire unit for info.

Lots of love too xx

Fran

breatheeasy1 profile image
breatheeasy1 in reply to

That's shocking about the BBC...I'm glad you write to them about it. Sometimes the wrong information is worse than no information at all!

What luck to have seen about the test in a magazine...maybe it was 'meant to be' πŸ˜‰.

My symptoms have levelled now I've been nearly 4 weeks off chemo. I am just trying to get some weight on, manage the neuropathy and migraines, and the anxiety and worry of courseπŸ˜•.

At least my girls finish school soon so that's one less thing to think about eh.

Good luck with everything honey. Thinking of you πŸ’•β€

in reply to breatheeasy1

Sounds much better Anne. Glad you are off chemo and managing symptoms πŸ’•πŸŒ·β£οΈ

You are going to be busy with the girls home! Hope you are getting help with them, summer camp or something!

Lots of love πŸ’–

Fran xx

breatheeasy1 profile image
breatheeasy1 in reply to

Yes busy indeed but at least at our own pace 🐌😊. And yes the hospice have already offered to help out with activity days and respite so should be ok I hope. We'll do one day at a time and see how it goes 😊.

Love to you too πŸ’“β€πŸ’•

in reply to breatheeasy1

That’s great my dear Anne xx

Fran

Dear Happy Fran,treatments to treat treatments,it seems like a never ending cycle but hopefully adjustments and if necessary different medications can resolve issue before they become a problem,thankfully your diligence and the knowledge you have gained about Lam seem to keep you one step ahead of this debilitating condition and long may that continue.

Good morning to both you and hacienda Carolina,should you ever wish for a cyber toy boy at a mere 65 Ski's is always available.

Cheeky Ski's and an embarrassed cat. :) xx

Hacienda profile image
Hacienda in reply to skischool

Ha Ha, Cheeky Ski's as you say, Hmmm, But I can Tell by Your Heart that you are a Young Gentleman. Can you be about 49, as My Hubby is 50 next Month, I'm 17 years his senior, But that is just a Number. I love you my Dear Friend, Te Queiro Mucho Y La Fem Tambien. Abrazos muy Fuerte y Mucho Besos. xxxxx

skischool profile image
skischool in reply to Hacienda

Delightful my dear,you keep him young with your spirit and vibrancy,he was actually 72 when you first met and that is the effect you have on him and now with the valves he will never keep up.lol

Besos carino...........Ski's and Scruffs

in reply to skischool

Dear Cheeky Skis 🎿 and Scruffynounette!!

You are kind thank you 😊

Cyber toy boy, is that what you call yourself these day πŸ˜‚

I was thinking as I wrote to Anne, I was lucky to have had to translate all those American documents on LAM for the French association. It was heavy going but has helped to understand more yes.

Have a pleasant day xx

Fran

Damon1864 profile image
Damon1864Volunteer

Hi Fran, those flowers are beautiful, I think you have a fantastic attitude towards your various health problems. Hope things continue to go well for you, and please keep posting this wonderful pics I love seeing them it brightens my day. Keep well and take care have a wonderful day. Love Bernadette 😊 xx

in reply to Damon1864

Hi Bernadette 🌷

Thank you 😊. Yes we need nature and colour in our lives!

Have a great afternoon xx

Fran

Beautiful flowers for a lovely positive lady πŸ’•πŸ’•

in reply to mas7656

Thank you Mas. That is very kind❣️❣️

Hi Fran, I love reading your posts, you are so positive, it helps me to look at myself with a better attitude, and your pictures cheer me up , so thank you. I hope all goes well for you with the tests. Irene

in reply to Izb1

Hi Irene,

I am glad! You all support me and cheer me along so that’s only fair 😊

Yes I keep my fingers crossed 🀞

Fran xx

Your an inspiration Fran πŸ‘

in reply to

Very nice of you, thank you 😊

Beautiful flowers. Such positive thoughts are very inspiring for me. I have always had a positive outlook on life come what may. I am forever the Optimist. Wishing you enough. Xx

in reply to Jackieshep57

Thank you Jackie 🌼

You are right, a positive outlook goes a long way 😊

Enough sounds good πŸ˜ƒ

Fran xx

Fran your upbeat attitude is amazing and a real example to us all. I hope the MRI goes well and that the Cypass test is useful. Lots of love and take care, Sheila xx

in reply to mskpjb

Thank you Sheila 🌸

Hope so too.

Other LAM sisters said they did something similar in the States and it was worthwhile.

Love πŸ’• and take care too 😊

Fran xx

Hi fran, it's always a danger when you have to take so many meds, you need to take them, but they take there toll.

You have got to the fine age of 66 and your upbeat and positive, I admire you immensely 🌼🌸🌼🌸

in reply to Shirleyj

You are very kind Shirley.. yes I think that’s what it is..too many meds definitely xx 🌻

What lovely flowers Fran. You cheer me up no end with your positive thoughts . Keep going keep questing, Good luck to you.

Dan

in reply to donut43

Thank you Dan πŸ˜‰πŸ˜Š

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