'that was the week that was'................. - PMRGCAuk

PMRGCAuk

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'that was the week that was'.................

karools16 profile image
26 Replies

Well, last Thursday was my Cardio appt with the man who, a year ago, was quite unpleasant, but 'morphed'into a nice guy, this time round.He said the heart scan shows Aortic valve sclerosis, and...................................that I have 5 to 10 years left.Funny, it didn't dawn on me, until I got home, and even then, I reckoned that wasn't bad for someone who wanted to die at 70, and has just turned 71.

I surprised a good friend of mine, with a visit thereafter. She was recovering from a burst stomach ulcer. This time, last year, she was recovering from bowel cancer.

Since mid-Jan, I have been feeling very stressed, due to 2 situations, not likely to be resolved soon. To avoid, adrenal crisis, I increased Pred from 4mg, daily, to 8mg.

Friday, felt like dregs.Saturday, weekly visit to my 99 little lady, who had been in hospital 2 days,chest infection and dehydration. I was appalled to find her confused, struggling with cough. Contacted family. Back in hospital.

Sunday, rested am, out pm.

Monday, visited 2 friends same hospital. 14 ambulances standing waiting outside hospital. Inside, teeming with people. Was like being in a busy shopping centre. The friend with the ulcer, didn't know I was coming. It was her 70th birthday. Been there, done that, got the t-shirt, last year.Talk about the walking! I think I walked 2 miles in those corridors. Wards changed. Up and down in lift.The 99 year old didn't know I was coming either, and very emotional.Discharged Tuesday, will see her Sat. Other friend still in.Bus to hospital 1 hour each way. Home 5pm, and, in bed 8.30pm. Slept until 6.45am, which is brilliant for me.

Tuesday, would've loved a day at home. Coffee with 2 friends for long overdue meet-up. Off to Tesco.Wed, dentist.

Somebody posted, on this forum, about their ear being blocked. I had had that, too, and ear suddenly opened. However, I found I was clenching my teeth.Before going to ENT, I DECIDED TO SEE WHAT DENTIST THOUGHT. SHE FOUND NOTHING, EXCEPT FOR SIGNS OF CLENCHING. EVEN TOOK X RAYS AND FOUNd nothing that could be causing ear trouble. Now I have 2 appts to have a dental splint fitted.

TODAY, FULL CIRCLE.

However,................... the sun is streaming through my window. It's not cold, nor windy, nor raining.Strangely, enough, I feel ok, in body, mind and soul. ps I did the housework and 2 loads washing today. Cleaner hasn't come for 3 weeks.

Tomorrow is ME day...catching up with all the 'bits 'n bobs'.Perhaps lunch treat.

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karools16 profile image
karools16
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26 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi,

It’s sounds as if you deserve a ME day...enjoy.🌹

SheffieldJane profile image
SheffieldJane

Bless you karools. I am sorry you got that diagnosis, they tested me for it too. Odd remark of your doctor’s 5 - 10 years left! This was him being charming was it?? My research, for myself, seemed to suggest that there were treatments available for this condition. My technician spent some time showing me what a clever muscle the heart was.

There is certainly nothing wrong with the goodness and love in your heart with all your kindness to your friends, and your ability to notice the sun streaming in and to be able to sit with yourself peacefully. 🌸

karools16 profile image
karools16 in reply toSheffieldJane

Thank you SJ. My own GP says that by the time I have the next heart scan, in 3 year's time, things will probably have advanced. I am not upset with diagnosis. Maybe, will stop me procrastinating with things, so much!

SheffieldJane profile image
SheffieldJane

I should do exactly as I pleased. Including procrastinating, there isn’t enough in modern life, just hamster’s wheel all the time.

Well, I must say I'm a tad embarrassed...

I'm 63 and you at 70, have done more in a week than I have done in a month!!!! I worked on an art project, this morning, for 3 hours (sitting at the dinning room table!) and have been on the couch ever since!

How do you come face to face with your mortality on Thursday and then plan the rest of your week so that you're able to visit friends and walk 2 miles around the hospital???

Are you on the right forum? Are you sure you're not looking for the "Over Seventies Over-Achievers?"

And I'm sorry, but now you're just bragging... " I did the housework and 2 loads washing today."

Well, I brushed my teeth!!!! : ±

karools16 profile image
karools16 in reply to

Oh Mamici! I am laughing so much at your reply.71 actually..yes, that's also a little brag.Now, I have had GCA for 12 years now, and I WOULDN'T, AND DIDN'T HAVE THE WIT YOU HAVE already, after only a short while on your journey. It took years before I knew about Kate's book, and then this life-saving forum.Yes, maybe that's a good idea for a new forum!! I wouldn't put myself on it, but I know who I would, but maybe she wouldn't want her age mentioned. She knows who she is.I might not be 'bragging' tomorrow morning!

in reply tokarools16

Ohhh, I'm happy you're laughing and not insulted... it could have gone either way! I guessed you might have a good sense of humour!

Wait, what???

YOU'VE HAD GCA FOR 12 YEARS ?

I thought these diseases burned themselves out after 3-4 years!

Ohhhhh, noooooooo.

: (

karools16 profile image
karools16 in reply to

Noooooooooooooooooooooo! Now, don't you be thinking like that at all!!!!! YOU found the forum, Dr Hughes, like-minded people.You're on track. It will be so different for you.....really.

There are numerous reasons why it has gone on so long for me.

in reply tokarools16

I am so sorry... to hear you've struggled so long with it! However, if your last week's schedule is typical; it sounds like you've given GCA a run for it's money!!!! Good on you!

PMRpro profile image
PMRproAmbassador in reply to

5 to 6 years is pretty common - and 5% of us hang on to it for life...

in reply toPMRpro

: (

Patience47 profile image
Patience47

I read that 20 to 40 percent of the population have aortic valve sclerosis. I have it. Are you sure your Dr said aortic valve sclerosis and not aortic valve stenosis? Aortic valve stenosis is much more serious than aortic valve sclerosis.

Edward

karools16 profile image
karools16 in reply toPatience47

I am sure he said sclerosis. I will see what he writes to my GP, whom I have already told. Upon my return home, I googled both conditions.

Patience47 profile image
Patience47 in reply tokarools16

Great. Let me know what you find out, and good luck.

Edward

karools16 profile image
karools16 in reply toPatience47

Will do and thank you.

I don't know how you have done all That!! I am sure your friends were very happy that you braved the hospital mall for them. Glad you got back on the pred after all that kerfuffle with adrenal. Sounds like pred suits you much better. 🌻

karools16 profile image
karools16 in reply to

1 of a few, who don't mind being on it forever, if needs be.

in reply tokarools16

I am of same mind if I have to stay on 7-8mg or lower.

Rose54 profile image
Rose54

Slow down your making me feel tired

what a wonderful caring person you are

karools16 profile image
karools16 in reply toRose54

I do hope my post didn't make me out to be a 'look at me' person. What I read on this forum is incredible what people manage/do with all their 'add-ons', as well as GCA/PMR.

Rose54 profile image
Rose54 in reply tokarools16

No not at all

I think its amazing that despite your own health problems you find the time to do so much.

I do work but some days come home and as soon as i sit down am dead to the world

i am just down to 8 preds and hope to start going down to 7.5 next week but have had two stressful days,

Builders in putting in bigger loft hatch and ladder ,plastering ceiling and on top of that new wardrobes arrived today ,Fitters just finished assembling and a pile of stuff on my bed .

I think i am just going to sleep in spare bedroom tonight

Going away week tomorrow but at present i am thinking do i have the energy

Take Care

karools16 profile image
karools16 in reply toRose54

There you go. You are still working AND ill. GCA stopped me working, whilst doing live-in carer work. I thought it was 1 thing to be so dreadfully ill, but another with no income, in a country in which I was not born. I thought I would be working until 70, not58!

in reply tokarools16

Hell no!!!! ... but we should be looking at you!

You're amazing!

karools16 profile image
karools16 in reply to

NAH!!!!!!!!!!!!!!!!!!!

PMRpro profile image
PMRproAmbassador

I replied earlier - but it seems to have disappeared into the ether!!!

Your week makes me feel exhausted just reading!

And as SJ says - that was your doctor being charming???????????? Surely surgery is an option?

karools16 profile image
karools16 in reply toPMRpro

Surgery not mentioned.Hooray! Told me that the breathlessness would worsen and chest pain occur. Also thinks the curvature of my spine adds to it all. He was very matter-of-fact. Didn't ask/wait for any reaction from me.

Not really the way I'd like to go. Am wondering if hereditary? 2 cousins and Mother all died of heart conditions.

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