Feeling a bit disappointed and scared of the unknown

[Skatergirl1]

Went to the hospital for the first time this morning and saw a lovely consultant.they did another Spiro and my fev1 is now 35%....consultant said he is shocked to see how low my score is for my age. Sending me for more in-depth breathing tests, ct scan and allergy testing and also alpha 1 test amongst others...in myself I feel fine, but the reality of this disease is starting to sink in. I am also scared to tell my boyfriend as this now Involves him and I think he should move on and find someone else.....my husband abandoned me when I had cancer so don't really want to go through that again!!! Is too early to pour a vino? Lol x

[Hidden]

Vino sounds good to me ... I would talk to bf as like you say unknown will make you irritable FOR everything else this beer 🍺 or 🍷

Might even surprise you and fully support you.

Guess age as a lot to do with things too

Anyway best luck and hope it all works out in end

[Skatergirl1 in reply to Hidden]

thank you x

[Hidden]

If he loves you he will be by your side you told once to fight the spirometry are variable you are still in same category. How much have you lost

[Skatergirl1 in reply to Hidden]

Gone down from 43% since may?? - was also 43% last august, both those tests done at the doctors. This was more thorough today at the hospital x

[Hidden in reply to Skatergirl1]

Right have you got a cold congestion...what did consultant say exactly. You are still at the same stage ...was it just spirometry you had nothing else

[Skatergirl1 in reply to Hidden]

No, I am absolutely fine, no chest problems, not getting breathless at the moment etc. he had an old X-ray up on his screen showing that I have hyperinflated lungs, he said I should of been diagnosed years ago, and was really nice and quite concerned and said I should not be at this stage for my age and activities, he is checking to see if anything else has contributed the the deterioration of my lungs. He has booked my in for a lot more test and a ct scan, and discussed valves and lung reduction operation, but can't say If I'm suitable until he has all the results in. He said I should expect to see him again in approx 4 months or sooner. So I have to just wait and see what the tests show. xx

[Hidden in reply to Skatergirl1]

I hope all goes well be positive you are still in the same stage hold on to that....how old are you

[Skatergirl1 in reply to Hidden]

I'm 57.........Im just having a knee jerk reaction at the moment and wanting to sound off as I have no one to talk too, however I have gotten through worse...beaten cancer twice, and still here to tell the tale, and enjoying life to the full, so I know I am strong enough to deal with this, just feeling sorry for myself (albeit temporary) xxx

[skischool]

Never too early to pour a glass of vino Skatie but maybe a little too early to start drinking it.

You have a base line now and are starting proper investigations instead of mucking around in your Gp's surgery and your consultant sounds determined to investigate thoroughly and set you on the right path for slowing down progression to near normal rates and you will play a big part with your healthy living and a positive attitude in making sure that journey is rewarding.

If your fella is worth keeping this will be a good judge of his character and i hope you are pleasantly surprised.

Keep smiling and of course skating my love.

Ski's and Scruff's xx

[Skatergirl1]

Hi Ski's, thank you for your comments.....the wine is still in the fridge, will have a glass later..

Yes, I believe I have a good consultant, and he appears to be very thorough, so I do at last think I'm going to be in the best hands.

My fella is still in Greece, coming back tomorrow, so its not a conversation (later in the week) I am looking forward too!!

only time will tell...... (on a plus note - I should soon have a nice payout from ex-hubby's pension...every cloud has a silver lining!!!) lol xxx

[stamford1234 in reply to Skatergirl1]

If you have COPD it is possible to have enhanced payments due to ill health from private pensions. Speak to the pension provider. I had enhanced payments back dated to diagnosis (tax was waived by HMRC too) and future payments are enhanced. I believe the law changed recently. It is worth a phonecall

[2greys]

There is a lot of differences between patients and their breathing capabilities. I have read of some being on o2 24/7 whilst having a FEV1 of 35%. To be honest any anxiety you had that day can afect the spirometry results.

You do not need o2 at all and you are ice skating and swimming. Then take myself at 28% not on 02 either and still working (another post to be done about that) climbing 3 flights of stairs and carrying up the full shopping trolley.

As for your relationship, don't you think that it ought to be his decision. You can give him the truthful facts once you have a solid diagnosis by all means, but it really has to be his decision. Don't act in haste, be a "patient" patient until you know the proper facts. This damn disease can also cause emotional issues and put you on roller coaster with them.

[Skatergirl1 in reply to 2greys]

thank you for your comments 2 greys. Yes I am vey grateful that I hardly appear to have any symptoms for my low Fev count and have what I call a normal life.

As for the conversation, not something I want to do, but yes will give him the facts and option to walk away. It is his choice and something that I can't decide for him.... but I can't hide it from him, it involves his future too xx

[HungryHufflepuff]

Someone once said, it’s better to be shunned for who you are, than to be liked for someone you pretend to be. It’s rather simplistic, and maybe easier said than done. But, do tell your boyfriend otherwise things get to a stage where you’ve kept it a secret for so long that it becomes impossible to talk about. If he cares for you and about you he’ll stick around. Sending you very best wishes ⛸⛸

[Skatergirl1 in reply to HungryHufflepuff]

Yes, I plan to tell him, but not looking forward in doing so. This involves his future too. He is away in Greece at the moment and won't be back until tomorrow. I will tell him later in the week, rather than when he walks straight through the door. Thank you for your comments xx

[Lemon7]

I think your positive lifestyle with skating etc will stand you in good stead. Glad you have a specialist now to make your treatment the best it can be. Wishing all the very best to you for your future care.

[Skatergirl1 in reply to Lemon7]

Thank you Lemon7, yes I believe I have a good consultant now, who has my best interest at heart. xx

[Skatergirl1]

Thank you all for listening to me and taking the time to talk.... I needed it.... Now decided to get my act together and go into work this afternoon. The wine will have to wait until tonight xxx

[hypercat54]

Never too early to pour a glass of the old vino my friend, so indulge yourself. Am thinking of you, but the good news is you sound a lot fitter than previously and how you feel is more important than the numbers. Hugs Bev xx

[Skatergirl1 in reply to hypercat54]

Hi Bev, thank you....just got in from work (thank goodness I am self employed) and just poured a very large glass of vino....the bottle may disappear tonight!! Feeling a little better now getting my head around things. My consultant was very nice and said he would do his best for me, and I trust his word, so onward's and upwards In this journey xxx. Thank you for taking the time to reply xxx

[hypercat54 in reply to Skatergirl1]

Have a drink for me too please. xx

[Katinka46]

Dear Skater, oh... how I LOVE skating. Preferably outside, just ordinary stuff, nout fancy, but wonderful freedom and speed.

I am so glad that at last— just looked at your earlier posts — you have a doctor you feel confident about. Even though the readings are not what you want I think you are in safe hands. And that does make an enormous difference.

Love and hugs

Kate and. Zebra (who says nothing on earth would get him onto the ice, sheer madness.)

Xxx 🦓💕⛸⛸⛸⛸

[Skatergirl1 in reply to Katinka46]

Thank you so much for your kind words. Yes, I feel very lucky that my consultant appears to be looking after me, and I trust him ( bonus, he is easy on the eye..lol)) x. I am feeling a bit better now, and will have the conversation with the other half in the next few days, he gets back from Greece tom, so will let him relax for a few days before I tell him....thank you for listening xx

[Hidden]

Hi Skater I agree with everyone here who has said you now have a good Consultant. As for your other half tell him sooner rather than later and get it all out in the open. Enjoy that large glass of wine tonight. Go get that bottle opened and enjoy your weekend xx Maz

[Skatergirl1 in reply to Hidden]

Thank you Maz, just got In from work and popped the cork lol xx. Will tell the other half this week (he is still in Greece on hols) onwards and upward's xx

[Carnival567]

It makes all the difference to have a consultant you like and trust, as it helps you keep going. I hope everything goes well with your boyfriend as loving support makes so much difference. All the best xxx

[Skatergirl1 in reply to Carnival567]

Hi Carnival, thank you very much xx

[les4560]

s sorry to hear this you have been working so hard to keep it steadfast! what kind of work do you do?

[Skatergirl1 in reply to les4560]

Hi Les, thank you for your comments. It was just a bit of a shock, in myself I don't feel any different. I might have to walk the dog a bit more often, although its him that takes me for a walk (he's nearly as big as me) xx. As for my work...I am a massage therapist, nail technician and a Reiki master. I used to be in recruitment for 20 years, employing about 100 drivers, but when I got ill 10 years ago, I closed the business and I retrained to something less stressful x

[Skatergirl1]

Hi Redsox, I am now 35% and he had an old x ray In front of him which shows I have enlarged lungs. Apparently I should have been diagnosed years ago....but have been missed!!! I think he is giving Me hope as he says he can't understand why my lungs are so bad for someone of my age and abilities. He is doing lots of tests, ct scan, bloods, more in-depth breathing tests. To look at me I appear healthy, I suffer very little symptoms, work full timeand enjoy an active life. X

[Bingo88]

Hello Skatergirl1, Please try to stay positive, Just because 1 person walked out and left you does not mean your current boyfriend will do the same, We all have good days and bad, I have also just been diagnosed COPD, Just 3 weeks ago after having a cough, then getting short of breath, Went to the docs, to find 1st, my ecg showed resting heart rate of 40, So within a day told I need a pacemaker, then just Wednesday gone had the Spireometry test, That showed very poor lung function, But chest copd and related ailments run in the family, Hope all gets a bit better for you Keep positive

[Skatergirl1 in reply to Bingo88]

Hi Bingo, sorry to hear your prognosis, and tha no you for taking the tone to respond to me. I think yesterday I was just in shock...didn't think my Fev1 would drop so bad In a couple on months..any way feel a lot better today and boyfriend on his way home from Greece, so at least soon I can have the dreaded conversation. It is out of my hands, and I will deal with the situation As it happens. I've got my positive head back on!! Xx

[Bingo88 in reply to Skatergirl1]

Sure all will be ok Skatergirl1, Hope you have a nice weekend when he gets home, Keep in touch, So we can keep each other motivated

[Jomo46]

Wishing you all the best. Joanna

[Skatergirl1 in reply to Jomo46]

Thank you x

[stamford1234]

It's a lot to take in on your own. Confide in your fella, you might be surprised! Anyway, I am sure you will cope x