Just Curious: Hi everyone Quiet on here... - Lung Conditions C...

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rubyred777 profile image
rubyred777
β€’42 Replies

Hi everyone

Quiet on here lately. Hope everyone is well. I'm finally rid of my uti! Haven't seen Sonia lately. Hope she's okay. I'm just wondering how many of you even know your bone density. How about your TLCO?

I was reading the inspirational stories earlier. Theres actually all kinds of stories on there. I know some of you improved your fev1. Can't remember who. If you're out there? Also did anyone improve your TLCO? Hope everyone has a good weekend.

Rubyxx 😊

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velvet55 profile image
velvet55

Hi Ruby

Glad to hear your Uti has gone.

I don't know my bone density, could have paid for a check a few years ago, but l never got around to it.....l don't think l want to know anymore...its just another thing to worry about.

Weather here is turning cold the last couple of week....l hate it

Roll on the Summer !!!!!

Velvet xx

rubyred777 profile image
rubyred777β€’ in reply tovelvet55

Hi Velvet.😊

Hows Mr V? Chasing you around the house yet? You don't take steroids alot, do you? I don't ever take them. My mom has osteoporosis bad and I'm small boned. So they keep and eye on my bone density. Too cold already. I agree.... Roll on summer!!!! How fast you get that new car moving? I can just see you flying down the road! A couple cops far behind! Lol πŸ˜€πŸ˜€

Rubyxx 😊

velvet55 profile image
velvet55β€’ in reply torubyred777

Hi Ruby

Mr V is doing great, getting about as normal now, just still has a bit of pain from the op., but that's to be expected for a few months.

Our new car is fabulous...l have a job sticking to the speed limit, but as my son and daughter in law are both police officers, l have to behave myself !!

I only take steroids if l have an exacerbation.

I tripped up playing football a couple of years ago with the Grandchildren and broke both the bones in my arm, but it wasn't weak bones, it was just me being daft !!

Keep well

Velvet xx

rubyred777 profile image
rubyred777β€’ in reply tovelvet55

Cops in the family!!!

That could come in handyπŸ˜†πŸ˜† esp. for you! Lol!

velvet55 profile image
velvet55β€’ in reply torubyred777

Hi Ruby

I asked him for a ride his police car once...his reply was, l will have to arrest you first !!

Velvet xx

mmzetor profile image
mmzetorβ€’ in reply tovelvet55

heres me thinking you would be waiting for the snow to come so you could go sledging ,

velvet55 profile image
velvet55β€’ in reply tommzetor

Hi mm

Never to old for sledging.....l have two in the garage, and can't wait for the snow.....l have always been very sporty and still am.

It just takes me a few days to get over it now....You know me, always first in the queue for a bit of fun and a laugh !!

Velvet xx

PS...must be in the genes, my dad learnt to ski at 70 years old !!

Xx

mmzetor profile image
mmzetorβ€’ in reply tovelvet55

you can get some cream for that our youngest has it oh sorry read your reply wrong thought it said spotty , your dad does do well don't he , we not had enough snow for last couple of years to go sledging but we took the boys about 3/ 4 years ago a big group of us went but I couldn't go down cos the plates in my back , but some one had the biggest black lab I had ever seen when they got to bottom of hill and got of the sledge the dog run to it grabbed the rope and pulled the sledge back up the hill for them he done that loads of times was so funny to watch ,

Sheilab123 profile image
Sheilab123

Hi Ruby, pleased to hear your feeling better. What is a uti? and what is tlco? I do know my bone density, not good, but not giving me the problems my lungs are lol. Yes I to hope Sonia is ok, poor girl has so much going on at the mo. You take care xx

rubyred777 profile image
rubyred777β€’ in reply toSheilab123

Hi Sheilab

A uti is a urinary tract infection. Ever have one? Quite uncomfortable. TLCO is gas exchange on your breathing test. It has alot to do with when you need oxygen. Stay well 😊

Rubyxx 😊

Sheilab123 profile image
Sheilab123β€’ in reply torubyred777

Thanks Ruby, a UTI sounds painful! Hope you are on the mend now, and no fortunately I have never had one. Should have known what a TLCO was though! Take care xx

Parvati profile image
Parvati

Hi Ruby, I have no idea about my bone density or TLCO and am rather envious of those who do know. I am one of those with improved fev1 - just by a few points over the seven years since diagnosis - but as I was told we all deteriorate I am more than pleased with that! Even more dramatic though is the increase in my fvc which has gone from 87% in the early days to around 90% - where it stayed for a few years - to a sudden jump to 107% after training for my GNR walk. Whether I will be able to hang on to that 107% now that I am back to 'normal life' remains to be seen. Unfortunately despite my improved 'numbers' it has had no effect on my oxygen needs - I still need 2LPM for sleep and can only just about manage on 6LPM for walking (in fact even on 6LPM my sats were constantly in the low 80's when I was walking as fast as I could in the GNR) .

As much as I believe in the NHS, I have to admit that if I were better off I would pay privately to have TLCO, dexa and LDCT scans. I look forward to reading others reports on their 'numbers, tests and scans'!

rubyred777 profile image
rubyred777β€’ in reply toParvati

Hi Parvati

Thats great you improved your numbers. Surprised you still need oxygen. Your TLCO is actually part of your breathing test. It tells how your lungs exchange the oxygen . You should have a look at that.

Hoping to get some replies from people that improved. Not alot of responders anymore. We'll see. Keep well.

Rubyxx 😊

peege profile image
peegeβ€’ in reply toParvati

Hi V and Ruby, Parvati you're quite amazing 😘

In my 40's I had a tumble off my motorbike & broke a few bones. Doc sent me for a test, I rang to check the result & receptionist said it was fine.

Ten yrs later I broke a foot, next day broke the other one so had another test. Doc said "only a little deterioration from ten yrs ago". "Eh"? say I & he said I hadosteopenia ! I couldn't believe I'd had it over 10 years already. No calcium supplements or anything. Now I take D3. Probably need calcium. I'm hoping 250grams of yogurt + 1/2 pint milk daily is enough.

Must see my new doc about it.

My bones are thin due to short menstruation years. It makes a big, big difference. I keep telling my daughters because they started really late too. 18, like me & stopped in mid 40's πŸ˜•.

What are TLCO and LDCT please?

Ruby, PLEASE tell me you finished the whole course of antibiotics? If you didn't I'm coming over there to give you a good smack! P

rubyred777 profile image
rubyred777β€’ in reply topeege

Peege I took all my pills and the culture is good! No smack for me today. Good way to get you across the pond. Time for you to visit new jersey! Ever been? What a quack Dr. ! Unbelievable! Think you need to listen to me, like I listened to you.😊 more calcium and some k2 for you.😊 TLCO is the gas exchange in your lungs. Its on your breathing test. Its one of the number they go by to see if you need oxygen. Don't know where LDCT came from!

Rubyxx 😊

peege profile image
peegeβ€’ in reply torubyred777

Okay mum! Will get calcium ASAP. What's K2?

LDCT was mentioned by Parvati. X

rubyred777 profile image
rubyred777β€’ in reply topeege

K2 helps calcium to build bone. Cannot take it, if on blood thinners.

LDCT is a ct scan of your lungs for lung cancer.

πŸ˜€πŸ˜€ xxx

peege profile image
peegeβ€’ in reply torubyred777

Oh thanks. I've had an ordinary CT of lungs. Not a smoker so fingers crossed there won't be future LCancer - it will start somewhere else I expect.

Whilst knowing smoking isn't the only cause of L cancer if I had been a smoker I would borrow the money for a LDCT though for sure.

katieoxo60 profile image
katieoxo60

Hi Ruby, I have that bug that's going round if anyone else has it I'm sure the last thing on their minds would be the community. Some people have been in bed for a week with it, have to admit it is the worst infection I have had for a long time, seems to be better if you keep warm. For me on top of that my mother passed away on Wednesday so did not want to put all these downs on a post. Although I have had three bone density scans I don't recall being told anything other than there was no loss of significance and should not need another scan till I was in my eighties. Anyway Ruby hope you have a good weekend and a chat on your post xx :) :)

β€’ in reply tokatieoxo60

Hi Katie,sorry to hear you're not well,& hope you feel better very soon.😘

I would just like to send you my condolences on your Mums passing,this must be an awful time for you.

Take care,

Hugs & love to you,

Wens xxxx

katieoxo60 profile image
katieoxo60β€’ in reply to

Hi Wendells, these things are not easy but we have a deal with my mum to not mourn but celebrate her life. She was 97 and had a full life until about three years ago, so we have many memories of times gone by. Happy ones and sad ones. Do you know I can't put my mind to flowers as she wasn't a flower lover. But I will eventually choose before Monday,. Thank you for your kind wishes xx

β€’ in reply tokatieoxo60

Hi Katie,how wonderful 97,absolutely a life to be celebrated!

As for flowers,have you thought of donations to her favourite charity instead? Quite a lot of people do that here,can't think of anything else I'm afraid!

Do look after yourself,hard to be poorly at these times,keep warm,& remember all the happy/sad times,with your Mum,I'm sure she'll be looking down on you.xxxx

katieoxo60 profile image
katieoxo60β€’ in reply to

Yes I can hear her voice now, even though we won't be talking on the phone any more. The flowers are really for us to say our goodbyes. Both my sister and I love flowers its our final time to share them with mum, so must get my head round it and decide. She was not a charity sort of person even though she helped out in local Barnardos & Mind in her younger days xx

rubyred777 profile image
rubyred777β€’ in reply tokatieoxo60

So sorry Katie... please accept my condolences on the loss of your mother. I'm sure others would like to offer theirs also.

What a terrible week you are having. To be so sick and lose your mother on top of it all.

What is this bug? The flu?

Are you okay? I feel really bad for you. Please know that..

Rubyxx 😊

katieoxo60 profile image
katieoxo60β€’ in reply torubyred777

Its not flu or pneumonia as I have the injections. It starts with most people like a raging sore throat for me it went straight to my lungs I managed to keep it under control for a few days, but this week its really bad its like flu with out the temperature, really affecting my breathing too, my sister says one of her staff has been in bed with it for a week I caught it from a lady on holiday with us. It is probably some viral infection or maybe acute bronchitis. If it does not clear a bit by Monday have to seek medical advice because my oxygen levels have dropped to 90 usually above that. But thanks for your concern for now I am keeping warm and out of hospital, which has to be good. xx

peege profile image
peegeβ€’ in reply tokatieoxo60

Katie, I'm so sorry to hear about your mum. It's so sad making however old we are, to lose our mum.

Sorry too about your being poorly. Take extra special care of yourself at this time. Penelope xxxxx thinking of you

sassy59 profile image
sassy59

Hi Ruby, glad you are doing ok and the uti has gone. Not sure about Pete's bone density but know that he has osteoporosis in his hips and back. He does have scans from time to time so will pay more attention next time.

Take care and hoping that Sonia is doing ok too. Bless her. xxxx

rubyred777 profile image
rubyred777β€’ in reply tosassy59

Hi Sassy

Hope you and Pete are well. How about your bone density?. Do they have Pete take pills to increase his density? Seems it's not as big a deal over there as here. Keep yourself well.

Rubyxx 😊

sassy59 profile image
sassy59β€’ in reply torubyred777

Ok here thanks Ruby but not had bone density scan myself. Pete has one tablet each week for the osteoporosis. Take care. Xxx

rubyred777 profile image
rubyred777

Hi Tee

Hope you're doing well😊

I see you're not a numbers gal.You do have copd, right?

Do you know your fev1? When you get a breathing test , all your numbers are on the results. You would ask for a copy. The TLCO

Is the gas transfer, and has to do with your oxygen level. I like to know my numbers, so I know if I'm improving. The bone density is important if you take steroids alot. They can really thin your bones. Should be a routine test if your over 60.

Rubyxx 😊 😊

WheezyAnne profile image
WheezyAnne

I know my bone density. A bit on the soft side, though no osteoporosis. As long as I eat properly, and loose weight I will be OK. Doc put me on Calcium tablets and vitamin D tablets. My Consultant asked for the bone scan because of all the steroids I have had all my life,and increased earlier this year.

I would recommend anyone who has been on and off oral steroids for years to ask for a bone scan.

Xx

rubyred777 profile image
rubyred777β€’ in reply toWheezyAnne

Hi Wheezy

I agree with you. Taking steroids alot totally thins your bones. Better to know sooner, than later. Also if you have a history of

osteoporosis in your family. This was why I mentioned it. If caught early, calcium and vit. D will help.

Also strength training. So many members seem to be on steroids .Hope you're keeping well.

Rubyxx 😊

Azure_Sky profile image
Azure_Sky

My husband and I are guinea pigs for EPIC research. Hi sight was saved by them a few years back when they discovered he has glaucoma, he was called in to see the eye specialist at the hospital very quickly. He said the glaucoma had been developing for around two years. Since then, he has drops every night.

What I really wanted to say, is that we also had a bone density scan, and a scan to see how much body fat. There have been other checks over the last 20 years including diabetes. Strangely enough, I was clear of diabetes in the August (2008) when tested. I started getting symptoms in the October and was diagnosed in the January after tests.

It was the same test that identified my husband's glaucoma.

rubyred777 profile image
rubyred777β€’ in reply toAzure_Sky

Thats strange. Why didn't they catch your diabetes? Should have been borderline enough , to at least warn you.So your bone density is good? How long ago was that? Like your profile photo 😊 You catch the bug yet?

Seems like it's the flu.

😊.xx

Azure_Sky profile image
Azure_Skyβ€’ in reply torubyred777

The bug did get me, it poleaxed me. I am over it now. I asked why the Diabetes wasn't picked up. The symptoms began in October, frequent trips to toilet and repeated UTI's and carried on through to December, when an appointment was made for a fasting test to see if I was resistant to insulin. I forget exactly.

I wasn't pleased when Diabetes 2 was diagnosed. It was in the very early stages. I didn't need medication until this year, I felt really ill for a few months, then finally went to the doctor. He said my diabetes was no longer being controlled by diet and that I had early kidney disease.

The recent blood test is to find out why my right foot and ankle are swollen all the time, and the left one is starting to follow suit.

Apparently water retention in the feet and abdomen can be a sign of Ovarian Cancer. I haven't got any ovaries, so that was good.

rubyred777 profile image
rubyred777

Thats scarey. I couldn't get rid of the uti I had. Had it for 2 mos. Maybe I should ck. my blood sugar. My daughter has a fever, sore throat and achey. Can't even eat. Her boyfriend had it first. Is that what you had? Fingers crossed I don't get it. Not much luck. They live with me!

Rubyxx 😊

Azure_Sky profile image
Azure_Skyβ€’ in reply torubyred777

I would definitely recommend you get checked for diabetes 2. UTI's and needing to use the toilet a lot, also thirst are classic signs. You may even itch.

Azure_Sky profile image
Azure_Skyβ€’ in reply toAzure_Sky

The full test is urine test, fasting then having a glucose drink, wait an hour, then another urine test. I can't recall all the details. You will also need a blood test.

Over here we get regular blood tests and have our retinas photographed, this is to check to make sure we haven't got retinothapy which can cause blindness.

rubyred777 profile image
rubyred777β€’ in reply toAzure_Sky

How about bad leg cramps? I was having them. My culture is okay now.

Xx

velvet55 profile image
velvet55

Hi Tee

Keeping my nose clean at the moment, but will be in touch if ever l am in need of one !!!

Velvet xx

rubyred777 profile image
rubyred777β€’ in reply tovelvet55

Put a photo for you Velvet.😊 ck. It out!

😊.xx

Hi Ruby, I had the results of my Dexa scan a couple of days ago. Not only have I not got osteoporosis but my bone density is excellent! GP was amazed (vertebrae fractures due to trauma from fall breaking sternum) I put it down to being a cheese fanatic. Kaye x

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