DAY 40 ............ THE JOURNEY START... - British Heart Fou...

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DAY 40 ............ THE JOURNEY STARTS HERE

Ticktock61 profile image
38 Replies

Well Day 40 and since my last post a lot has happened. Just over Two weeks of daily injections done for my blood clot but still another 4 weeks to go . I go to the GP’s everyday for my injection and the district nurse comes to my home on a Saturday and Sunday. It’s a pain ( sometimes literally ) but it’s a means to an end. I’ve had some days where I’ve felt really energetic and majorly positive and upbeat last Wednesday Thursday were such days and I thought YES !!!! I’ve crossed that barrier then Friday came along and I woke up with pain in the muscles between my ribs pain in both my shoulders and the base of my neck and it got worse as the day went on, unfortunately this carried on through Saturday and into Sunday . Sunday wasn’t as bad but the pain that was in the base of my neck had spread into my ears which concerned me. I can’t explain why I hav3 good days then these painful days I’m starting to wonder if it’s anything to do with the medication I’m taking as one of the side effects of Bisoprolol is joint pain. It’s Monday 15th and the pain is not prevalent but joints seem stiff. ( shoulders and Neck ) As you know I had my operation in London but live in Yorkshire last week I phoned my local hospital that specialises in Cardiology to talk about Cardiac Rehab Sessions and was shocked to find because of my postcode I don’t qualify for the sessions as you can imagine I nearly lost the plot especially when I was told if I lived 10 miles away I would qualify. Apparently my local NHS knocked off cardiac rehab from their budget 3 years ago and the head Cardiac Nurse from the hospital has been fighting it ever since but with no success. The Nurse said she was having a meeting with the head of a private company who does Wellness and Cardiac Rehab sessions for the hospital. I was told I could approach my GP to see if they would stand the cost but I already know they would refuse. I received an email from the cardiac nurse after her meeting with a Mr David Bird who wanted to talk to me . I rang Mr Bird and he said after my review in London on 31st October I need to ring him again and he can arrange for me to attend his sessions he said unfortunately there will be a charge ......... I thought here we go how expensive is this gonna be ............. he said I’m sorry I’ll have to charge you £4.50 a session yes £4.50 I couldn’t believe it so I said I definitely would.

Haven’t had an alcoholic drink for 7 weeks it’s my birthday tomorrow and I did consider having a glass of wine with friends who are doing me a birthday tea which is lovely of them but I’m not sure whether to leave it another few weeks as you do become very protective of your body and I wonder if you can become obsessive which is also not a good thing .

I can’t wait till I have a run of about a week of pain free days but I’m sure it has a lot to do with all your muscles healing as well as your sternum I do think by Christmas I’ll notice a big difference in how I am feeling and how I’ve been able to improve my energy and stamina levels onwards and upwards . If like me your on your own recovery journey I wish you all the luck in the world and remember it may be 2 steps forward and 1 step back a lot of the time but you don’t need to be a mathematician to realise that’s stil, a step in the right direction so stay positive challenge yourself and we will get there individually and as a collective.

Stay safe hugs and kisses

Pete ❤️❤️

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38 Replies
ITSINTHEBAG9 profile image
ITSINTHEBAG9

Very best wishes Pete.... Keep us posted x

Ticktock61 profile image
Ticktock61 in reply to ITSINTHEBAG9

Thank you

Calliope153 profile image
Calliope153

Happy Birthday for tomorrow! Sounds like things are moving forward again although it sometimes doesn;t feel like it. Best wishes.

Ticktock61 profile image
Ticktock61 in reply to Calliope153

Your right but you have to go with the positives and every step forward is a bonus

Pete ❤️

MichaelJH profile image
MichaelJHHeart Star

Good to see your update. At month four I still have the odd bad day. Last weekend was busy with lots of steps (for me). Monday good as well but Tuesday totally exhausted. Then very tired again (persistent rain and dullness not helping). I suspect it is something to go with the Bisoprolol but the medical profession will not have it. Cardiac rehab is offered here but it seems to me that if the patient does not follow it up the rehab people will not chase up despite the referral. Off to hospital shortly for unrelated issue. All the best for now!

MichaelJH profile image
MichaelJHHeart Star in reply to MichaelJH

P.S. Happy Birthday for tomorrow. I had a drink at end of week but did not really enjoy it. However, a glass of wine with lunch was very enjoyable a few weeks later. In your position I would run it past the nurse when you have your daily injection as alcohol thins the blood further.

Ticktock61 profile image
Ticktock61 in reply to MichaelJH

Hi Michael

Glad to know it’s not just me then .

Hope everything goes well at the hospital today

Keep positive

Pete ❤️

Fredders profile image
Fredders

Hi Pete

Glad everything is going in the right direction, even with the bad days. Can appreciate your frustration with the pain, I have a bad back and hips and also have a problem with the rotator cuff in both shoulders, which were severely aggravated when I had my pacemaker installed and they refused to put anything under my head to raise it a fraction, which would have stopped the pain. Even taking paracetamol, codeine and morphine didn’t touch the pain, so had several sleepless nights whilst in hospital.

I never had any cardio rehab, never even got offered it. Nice to hear your cardio nurse was so helpful and got you sorted out.

Hope you have a great birthday - I don’t think a small glass of wine would do any harm 😉

Wendy x

Ticktock61 profile image
Ticktock61

Hi Wendy

Sorry to hear you have so much pain and even the really strong painkillers don’t touch it it is frustrating but we just gave to get on with it don’t we

I might take your advice with the glass of wine bugger it it is my birthday 😀😀

Pete ❤️

AndtH profile image
AndtH

Hi Pete, Happy Birthday for tomorrow. I've had a bad week feeling a bit low, and still worrying about my operation, I've not herd anything or been given a date. I had a beer on week 4 post opp It tasted like nectar. I never had any rehab after my operation same thing as you no funds in the kitty. Its hard on your own, but it seems you have good friends.

Keep safe, Best wishes, Andy 💖

Ticktock61 profile image
Ticktock61 in reply to AndtH

Hi Andy

Sorry your feeling a bit low mate we’ve all been there but if you need someone to talk too you can always private message me using the chat icon at the top of the home page I’m sure you’ll get a date soon and that makes a world of difference because as sooon as you get your date you can plan and get things straight in your head

Take care pal

Pete ❤️

IanGordon profile image
IanGordon

Still smiling ( mostly) in the face of adversity, then Pete. You seem to be dealing with everything that life is currently throwing at you. I can only admire your resolve. Well done! Your positivity will pay dividends and is a glowing beacon for us all.

Ticktock61 profile image
Ticktock61 in reply to IanGordon

Cheers Ian

Your kind words mean a great deal as it’s nice for someone to tell you your coping ok .

Thanks a lot Ian

Pete ❤️

IanGordon profile image
IanGordon in reply to Ticktock61

I'd like to say 'been there done that' but my post op experience was a stroll in the park, compared with yours.

Hang on in there buddy, it will come good.

Ticktock61 profile image
Ticktock61 in reply to IanGordon

Cheers Ian I will

Jinky07 profile image
Jinky07

3 good days in a row is good not be long until the good outweigh the bad. I start rehab on Thursday it says appointment is an hour and a half so don’t know what to expect. Wee vino on your birthday is a must unfortunately I was in hospital for mine in September so make it a large glass and have half for me. Take care you and have a great birthday xxx

Ticktock61 profile image
Ticktock61 in reply to Jinky07

Let me know how rehab goes I can’t enrol for mine until after 31st October review I’m having so probably middle of November.

The more I think about it the more I deserve that alcoholic drink tomorrow for my birthday.

Take care

Pete ❤️

NorfolkGal profile image
NorfolkGal

I do enjoy reading your blogs and thank you for taking the time to share your experiences. If, like me, members join this group at day 20, we don’t know what op you have had, so would you mind sharing this please.

I live in Cromer and like you my postcode does not entitle me to access to Heart Failure nurses or to attend rehab. In fact, I get no support from our surgery in any way. I’m not alone on the journey, and I don’t say recovery as there is no cure for Heart Failure, but I don’t have support as my husband is very disabled with MS. Apart from friends we have no other support.

So Birthday boy tomorrow, well I would go out if you feel able but don’t drink. I poured myself a glass of white wine last week, took one sip and though about how gutted I would be if it made me worse, so poured it in the meal I was cooking!

Take every opportunity to spend time with friends and family, as laughter does make you feel so much better. Have a super day tomorrow, pain free, alcohol free, but with plenty of laughter

My very best wishes

Jan

Ticktock61 profile image
Ticktock61 in reply to NorfolkGal

Hi Jan

Thanks for your question regarding what you’ve missed by only joining the journey at day 20 and asking what I’ve had done

On the 5th September in St Thomas Hospital in London I had an Aortic Valve Replacement due to being born with a bicupsid Aorta which has calcified over the first 60 years of my life and caused severe Aortic Stenosis so I needed a new valve. Hope that brings you up to speed.

Take care

Pete ❤️

NorfolkGal profile image
NorfolkGal in reply to Ticktock61

Thank you

Nic25 profile image
Nic25

Great to get your update Pete and sorry it's still up and down, but at least more up than down hopefully. I had my CT scan so hopefully things will now begin to move. All fine except the spray they put under your tongue (who came up with that as a concept, just weird) to open your blood vessels gave me a splitting heartache! Also on tenterhooks to hear how Alison has done. But keep battling! Nic x

Ticktock61 profile image
Ticktock61 in reply to Nic25

Hi Nic

Yes more ups than downs

I spoke to Allison on Sunday night she was in good spirits but apprehensive which is natural she will currently be in HDU and by Thursday or Friday she will be able to let me know how’s she’s doing

Good you’ve had your scan and things are moving for you

Pete ❤️

invictaAlec profile image
invictaAlec

Hi Pete.

I have to say that I haven't really experienced the good day/bad day syndrome. My story has been one of very steady, very slow improvement but I've read a lot of people on here share the ups and downs you are experiencing. A common theme has been people having a change in medication with positive results. You might want to ask your GP about reviewing what you are taking.

The post code lottery has decreed that I live in an area which qualifies me for the rehab classes. It so happens that this will be my final week of them. In all there are sixteen sessions spread out over eight weeks. Tuesday is a one hour talk on various subjects, diet, exercise, psychology etc. followed by one hour of timed interval based circuit training. Thursday is just the circuit training. Sometimes its been a bit of a nuisance getting ready and going to the sessions but I've tried to tell myself that I'm lucky even to have been offered them. My problem is whether or not I'll get of my backside and find something to replace the sessions with. Gymnasiums don't excite me, but I might just have a look at this "walking football" that seems to be gaining popularity.

Seven weeks without a drink eh? I've been four months without a fag. Your point about being too obsessive about your body is well made. I still spend some nights climbing the walls wanting a smoke but I've resisted so far. I flatly refuse not to eat cheese though and I've had a Chinese take away. Enjoy your glass of wine.

Alec.

Ticktock61 profile image
Ticktock61 in reply to invictaAlec

Hi Alec

I can’t wait for the rehab sessions as I’ve always done exercise apart from the year leading up to my op. I’m walking for an hour a day but now need some variety . I used to love running and it would be ace to eventually get back to that

The walking football sounds ace go for it

Pete ❤️

-fudge- profile image
-fudge-

Good morning and a very Happy Birthday to you🎂😃hope you have a good day and enjoy your evening with your friends and have that cheeky glass of wine 🍷cheers ! And thank you once again for your positive posts... your an inspiration to us all x big hugs x

Ticktock61 profile image
Ticktock61 in reply to -fudge-

You’ve just made my day thank you 😀😀

I sometimes wonder whether my complete honesty may be too much and do people want to hear the reality of this journey but it is why I decided to do it no sugar coating just a real insight into the unknown for people so thank you so so much for what you’ve said it means I’m on the right track

Pete ❤️

JayceeW profile image
JayceeW

Happy birthday! Keep smiling - it does get better.

Ticktock61 profile image
Ticktock61 in reply to JayceeW

Hi JayceeW

Thank you for your birthday wishes and I know it will

Pete ❤️

Ticktock61 profile image
Ticktock61

Hi Happyjo

I will enjoy my day thank you

Glad you enjoy the read ............

Pete ❤️

dunestar profile image
dunestar

So sorry Pete to hear about your painful days. Pain in the ears must be really hard. I find the thinking of the NHS powers that be is really hard to fathom. They will pay thousands for your op and then refuse to pay peanuts for your rehab. The saying about spoiling the ship for a half pence of tar comes to mind. I don't think they are really geared up for prevention rather than cure.

Have the most wonderful birthday tomorrow and if that includes a glass of wine, well why not. I think we can all get a bit overprotective sometimes. Life is for living as they say and one glass of wine isn't going to make much difference. Enjoy it!!!

Ticktock61 profile image
Ticktock61 in reply to dunestar

Cheers

I Think your right an £18,000 operation just happens £200 max for rehab not allowed I just don’t get it

Pete ❤️

jimmyq profile image
jimmyq

Happy Birthday!!

Ticktock61 profile image
Ticktock61 in reply to jimmyq

Thanks Jimmy

Pete ❤️

Routemaster profile image
Routemaster

Happy birthday Pete. Enjoy your birthday tea!

Ann

Ticktock61 profile image
Ticktock61 in reply to Routemaster

Cheers Ann

I will and thank you

Pete ❤️

Hi and good morning to a fellow libran, it's my birthday today,I hope you have one of your good days tomorrow and can enjoy a birthday 🎂 🍾 tipple, looking forward to your next post it's great to hear they can do some sort of rehab I am not sure how it works in Scotland I was never offered anything, mabe we have no money! I do hope the pain subsides soon, it must be awful, take care char x

Ticktock61 profile image
Ticktock61 in reply to

Hi chaz

We share a birthday 16th October although you are 2 years younger than me damn !!!! ............ happy birthday sweetheart hope you have a great day and I won’t mention which birthday it is for you although from your picture on your page your looking great so be proud of it .

I’m determined to have a great day hope you do too

Pete ❤️ xx

in reply to Ticktock61

A birthday 🎂 and a dicky ticker lol, I will probs suffer for it in the morning, but life is def too short to think about that today, have a good one tc char xx

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