Feedback/ RBH

Hello dear friends,

Saw the Consultant yesterday. Had my list ready and all the documents translated.

He was very kind.

My list!!!

General health deterioration this year and a half

1. Chronic Rhinitis, nose blocked up all the time, can’t use steroids sprays anymore, nose bleeds

2. Post nasal drip, trickles down my bronchi so I nasal wash and I put in special cream in for the dryness

4. Cough all year round.. on and off antibiotics..they don’t like to give them to me and let me linger..I never totally recover. I usually have to take two or three lots different types before I can’t get over it. They don’t like to give me doxycyclin because of the kidneys ? first time round, it’s the one that works best for me.

5. Bronchitis, pleurisy, inflamed ribs, broken thoracic vertebrae

6. Bad cough fits, cysts rupture I cough up blood

7. Adrenal glands insufficiency: Prednisone caused problems but changing to Hydrocortisone and tapering down is difficult, asthma or short of breath is back big time and the rhumatic pains, especially legs, legs, knees and feet. I need to investigate Rhumatoid problems

8. Fatigue physical and mental

9. Even had allergies.

10. Taking more Ventolin to breathe day and night when asthma, it gives me palpitations but helps.

11. drinking black coffee to keep off fatigue when I have things to do and taking 1g of paracetamol 2 to 3 times a day for pain

12. My present health restricts my breathing capacity, my mobility and exercise capacity; last summer I could swim for 30 mn

13. All puffed up with steroids

14. Disturbed sleep, sleeping sitting propped up on and off for 6/7 hours

15. Melancholic

16. Poor eyesight, 2 cataracts ops in a year, I live in a blur, eyedrops every hour for dry eyes. I want to go to Moorfields for a second opinion

17. So I am wondering if I can improve my medicines, immunity, get help with diet, improve my general comfort.

So he looked at the LAM first and he said it was a small LAM and reassuring.

My breathlessness comes from trapped air. He explained the diagrams and calculated percentages. The rest of the figures are useless because they test you while you are on inhalers so you don’t really know your score.

He will give me better inhalers.

I must be treated with antibiotics when sick and gave me doxycyclin as a rescue med, he agreed it was the best for me.

He said when sputum gets yellow it is the beginning of an infection if it is usually transparent.

He didn’t seem too happy with the change of steroids and the effect it has on me but just asked for the endocrinologist details.

My back is bad apart from the wedge fracture I am getting smaller! So he wasn’t surprised I was in pain.

I am having the cortisol blood test on Thursday morning.

He will study all documents and see me next week. He just said nothing major, several little problems for which we can find solutions. They are making you unduly anxious when they should be reassuring you. I thought that was true.

So fingers crossed!!

Wishing you well xx

Fran

[newlands]

Hope all goes well Fran xx

[Hidden in reply to newlands]

Thank you newlands xx

[Yatzy]

Excellent to hear you are gradually moving forward, Fran, in your understanding and treatment of your problems. There’s a long list to work through yet though!

Sounds like a good move, coming over here to the Brompton. I’m glad he’s beginning on a thorough check over, and at last you have your hands on rescue antibiotics, unlike at home. Yay!!

Let us know how the new suggestions pan out. Sound like the best in a while?? So pleased for you ❤️

Love xxx Penny xx

[Hidden in reply to Yatzy]

Yes Penny he sees the whole picture not just my lungs and that’s also what I needed.

Love xxxx

Fran 💕

[Jazzkady]

My goodness Fran you certainly got your money’s worth with all that lot on your list, and what a lovely man to listen, and act! I do so wish you well I am familar with some of the symptoms you have, the not breathing through nose, the back nasal drip at night, not sleeping , trying to get off the Prednisolone . I am heartened by his comments , “several little problems for which we can find solutions”. ! That would be wonderful for you. Good luck for seeing him again next week x

[Hidden in reply to Jazzkady]

Hello Jazz

Yes I went over time I think 😃

I printed the list so he could consult it later, he had his own lot of questions.

But he was the most encouraging person I have talked to since being diagnosed in Feb 2016.

He wanted to know about my kidneys because we get angiomyolipomas so texted Bea who went in my files to dig out my last scan and sent the report photos.

Imagine how lucky we are to have those smartphones nowadays.

You know how one med gives you something else, honestly I need to minimise all that.

Next week I want to talk about pain management, see if I need to be referred to rhumatology and he was going to see about Moorfields the eye hospital.

Thank you Jazz xx

[Jazzkady in reply to Hidden]

Hi Fran, it looks as if a lot of us cannot sleep. Maybe a good idea to have an easy day today, perhaps a good coffee and cake ! X

[Hidden in reply to Jazzkady]

I am lazy this morning! Had coffee still lazy! 😃 Meeting a friend for lunch down the road! Xx

[Yatzy in reply to Hidden]

All that thinking and listening will have taken it out of you, Fran, but so worthwhile!

Enjoy your day now that your health issues are finally on the way to receiving expert attention, looking at the whole you. All sounds very promising.

💕 Penny xx

[Katinka46]

Dear Fran

Well... He does seem very thorough and to have a follow up so promptly is excellent. Do you feel that you are in good hands? Good luck with the whole crazy bundle of stuff.

Love and hugs

Kate xxx 🦓🦓💕💐

[Hidden in reply to Katinka46]

Dear Kate,

Thank you for your support 😊

Well I was lucky with the follow-up appointment when I went to the desk they had one left for next week. I suppose once he gets me stabilised I won’t see him so often. I’ve got to get home some time 😃 he asked me if I was ready to come back I said yes!

I suppose if he invests energy in a patient it has to be worthwhile. All good for the research they do there.

Let’s say he was human, he knows the disease, he knew how to explain to me my past spirometries.

When he saw the list of the figures since 2014 it just didn’t add up to have poor lungs and a FEV1 of 81%, in fact it is because they let you use inhalers in Switzerland it is probably much lower than that.

He wanted to establish why I was so breathless and coughed on exhaling I had only one document with curbs and volumes so then he saw the trapped air.

I knew I had trapped air but I forgot it felt like asthma. But it isn’t asthma Spirometry showed no sign of obstruction. So at least we got something established.

Anyway you have to feel you are in good hands, you have to believe some things can be improved. Not ready to give up!

Love 💕

Fran xx

[Katinka46]

I knew early on that I had trapped air because it felt like asthma which I had had since I was seven BUT it was different because I couldn’t relieve it with inhalers and good breathing techniques. It was permanent. I assume RBH did a PFT? I had one at RBH and felt that it was more thorough than those done at St James’s In Leeds. And the numbers were significantly down! So be warned.... The young woman who did it was charming and happy to give me a print-out immediately. If you have the numbers I should be interested to look at them if you felt comfy with that.

Looking forward to the next episode.

Love K 💕🦓

[Hidden in reply to Katinka46]

I see..

No we didn’t do a pft I had just done one before I left and brought the results with me.

Last results?

Pulmonary functions Translation Fr/Eng:

CVF = FEV

CVL= Tidal volume

VEMS=FEV 1

CPT= TPC

VR=RV

DLCO=TLCO

Posting picture separately xx

[knitter]

RBH have certainly been very thorough and kindly too.

Looking through your list I certainly have a few of your symptoms too, with blocked sinuses and fractured vertabra as well as all the side effects of long term steroids. And the constant cough ...and getting shorter !

I have practiced breathing exercises in the past to try and deal with the trapped air, I must start again.

Anxiety is my problem though, your meditation tips have helped me with that.

I hope Aria and Bea have not been too badly affected by the bad weather in Central Europe.

Best wishes.

[Hidden in reply to knitter]

Hello Knitter,

Ahhhhh well you and I in the same boat!!

I also carry on with daily meditation and breathing exercises. A good hour in the morning and in the middle of the night! As I usually fall asleep on the sofa in front of the tv then wake up sob, herbal tea, book etc..

Breathlessness and pain make you anxious, well when you can’t cope with your daily life and chores, it becomes a burden for sure. But I am not anxious I am just very tired.

I also massage with Weleda lavender body oil if I need to unwind.

I did last night. Came back from hospital, had a shower, self- massaged especially my back, legs and feet, then put my heat pad behind my thorax propped up with cushions. Perfect. Hardly saw Theresa May or the others and woke at 1.30 am!

No Bea and Aria haven’t had much snow in the valley but it’s coming I think. It’s been too cold. She said Mum stay put!

I’ll upload pictures she sent me for you.

Wishing you well xx

Fran

[2greys]

Good morning Fran, that is some "shopping list" you have. No wonder it makes you anxious. Hopefully they can reduce that list somewhat for you. Good news with the LAM though, it sounds like it is pretty stable.

[Hidden in reply to 2greys]

Good morning 2greys,

Yes I hold on to the good news..you see they have 350 LAM registered cases in the UK so I assume he knows better than doctors who only have 20 in Switzerland for example..

So I keep hoping xx

Fran

[Hacienda]

Morning Fran, Your list looks familiar and is very helpful to a lot of us here, I do hope you get the LAM sorted on your next appointment, your Man seems to know a lot more and sounds very helpful which in itself gives you Confidence. Good Luck Fran. Stay Strong. Abrazos y Besitos. xxxx

[Hidden in reply to Hacienda]

Muchas Gracias Carolina xx

I expect we mainly have the same issues yes..And have to live with them 😃 hopefully he will help me out with some of them.

Best wishes 😘💕

Fran

[sassy59]

Well Fran, there are pluses I feel and you’re being looked after at RBH. How wonderful it will be when small problems can be fixed and help make things better for you.

Wishing you lots of good things dear friend and hoping for improvements soon.

Love Carole xxx 💕💕💕

[Hidden in reply to sassy59]

Thank you for your kindness Carole 💓

They seem very competent yes.

It would be good. We’ll see the blood test results I expect next week and see if I am on the right track..

Love

Fran xx

[sassy59]

You’re such a valued member of HU Fran and I’m really hoping the RBH will help you get on the right track.

Love and hugs xxx 🤗💖

[Hidden in reply to sassy59]

Oh you are so kind my dear Carole. And so are you!!! 💖

Yes I hope so too, it has been a long year I’m looking forward to this one ☝️ 😃

Love,

Fran xxx

[sassy59 in reply to Hidden]

😘💖👍💐🌹 xxxx

[CELAT06]

That sounds like they’re getting their act together and being very thorough, I hope they get it all sorted and you can finally get some relief. You’ve certainly got enough problems for them to tackle. Is it the cortisol day curve you’re having ? I have to have that annually, I don’t mind it, I’m in the day hospital for about 6 hours, they take my blood every hour, I get a sandwich for lunch and coffee when I want one. I look on it as a relaxing few hours away from the hustle and bustle of life. Hope all goes well for you, take care, Christine. X

[Hidden in reply to CELAT06]

Hello Christine

No, never heard of that. Sounds like quite a day! It is the 8 am cortisol blood test that the French endocrinologist asked for and the other one called ACTH, the RBH said they couldn’t do. It was too specialised, so to be done in Endocrinology so I said I would do that back home.

Then the next one is in 3 months then every 3 months for a year so I read on my prescription

I have just reduced the dosage by 5mg on Sunday after a month so we’ll see..

Thank you. Take care too xx

Fran

[Izb1]

Hi Fran, so glad you have found somebody to look at your problems and deal with them, it sounds like you are in good hands. I can relate to quite a few of your problems. I had a ct scan of my sinuses a few months ago and they are all infected and have been for over a year. The ent doc put me on a 6 weeks course of ab which didnt clear it properly and has scheduled me in for sinus surgery and to straighten a small bend in my nose. Infected sinusus keep infecting my lungs so need to deal with this, even though I am petrified of having this done. Keep us updated on your progress x

[Hidden in reply to Izb1]

Hi Irene

Thank you for your support. I had the sinus CT scan a couple of times over the years, there is nothing wrong with my sinuses, a slight deviation ENT had said. Maybe allergies but I think it is vascular really. You know when there is central heating my nose gets blocked up straight away for example.

Using Sinus Neil Med was recommended. They had given me a free one at the Charingcross Hospital. Very useful but tedious 😉 still best thing I have used.

Love,

Fran xx

[Izb1 in reply to Hidden]

Hi Fran, yes, I use Sterimar twice a day and I can get this at my local Tesco, tedious but necessary. In fact it takes ages to get ready in the morning now, gone are the days when I could jump out of bed into the shower and be ready in 30 mins ha! Oh! I do long for those days, its the simple things that make life enjoyable dont you think. Hope you enjoy your stay in London x

[Damon1864 Volunteer]

Hope everything goes well Fran😊 Bernadette xx

[Hidden in reply to Damon1864]

Thank you Bernadette 😊 xx

[hypercat54]

Oh dear Fran. If you were a horse they would shoot you! It's amazing what the human body can endure isn't it. It does sound like you are being well looked after. x

[O2Trees]

So glad you're being well looked after at the Brompton Fran and got some reassuring news. It's a lot for you to live with and you do so with such grace, it's impressive. Thanks for letting us know your news and hope next visit goes well. xxx

[SquirrelsHolt]

Well you most definitely have had so many brilliant replies from our members,all of which are helpful. Would you be offended,if I ask which Consultant was dealing with you at RBH? I saw a Professor A.Wells but he may well have retired by now?

[Kitten-kat23]

I hope all goes well for next week.

[skischool]

So my happy friend Fran,you are the 1 in 350 of registered LAM patients,i bet your consultant was glad the other 349 don't turn up with a bucket list as long as yours but i imagine he was suitably impressed with your detailed knowledge and understanding of your condition.

I think you have already started down that road towards a better state of health and quality of life and that this gentleman will remove many of the hurdles in your way.

Sending love and energy for the journey ahead.

Ski's and Scruff's xx

[Whitechinchilla]

Golly you did cover a lot of ground.

How wonderful to find a consultant with actual solutions and not more sticking plaster.

Good wishes for your good health.

[Shirleyj]

Hope they help to sort you out Fran l, thinking of you x x x 🥀🥀🌹🌷⚘