Need some advice please

[SuzanneJ1]

Hi I'm new here.

Was diagnosed with critical aortic stenosis January 13th and am awaiting valve surgery within the month.

I'm struggling at the minute with chest pain and shortness of breath can anyone relate to this?? Is this normal?? Should I be carrying on with normal activities or not.

I recently retired which doesn't help as spending lots of time alone. Unable to walk my dog for long distances now which upsets me.

Feeling quite tearful is this usual. Can't wait for the surgery to start feeling better.

Has anyone had the mechanical valve implant? How was it?

Any advice would be gratefully received.

Thank you

🙂

[080311]

Hello SuzanneJ1 welcome, sorry you are having to face surgery, I had aortic valve replaced and bypass 3 years ago, age 68. I had a tissue replacement so can’t help with the mechanical one. Though someone will be along to give there opinion.

It’s a very scary place you have found yourself in there are lots of us on this forum who have been through it. Shortness of breath is something I can relate to though I didn’t have any pain.

If you are having open heart surgery to repair or replace the valve, it is a major op but I am here to tell you it will be ok, and after time you will get your life back. Just remember when you get home it’s baby steps, cardio rehab is something you should try and do, it will help get your stamina back but it will also help with your mental health. You will be with other people who have had similar experiences as you and just being able to talk with them about your aches and pains you will find they have the same and all of a sudden it’s ok normal! Tears again is normal you are going into the unknown, but 3 years on I am living my life thankful every day.

If you are having open heart surgery there is lots of advice about what happens and how you can help yourself. Just ask.

Best wishes Pauline

[SuzanneJ1 in reply to 080311]

Hi Pauline

Thanks for advice. Glad to hear I'm not over reacting!! Having been in full time employment for years to not being able to do what I consider normal has been a shock. Roll on surgery and cardiac rehab. So glad I found this site.🙂

[080311 in reply to SuzanneJ1]

Hi, Suzanne you are not overreacting, you are going into the unknown but please be assured it will be ok. Once your surgery is done and you get your stamina back you will pick up your life again. Just remember when you get home it’s baby steps, don’t try and run before you can walk! It does take a little time to get going but you will get there.

Now being practical, you need pjs that fasten at the front along with front fastening bra, they don’t want you to left your arms up for the first 6 weeks, and your not to carry anything heavier than a bag of sugar. No hoovering or ironing either. Just so your sternum heals nicely, remember it’s a broken bone.

Don’t worry about being in pain they really make sure your pain free, sleeping can be a bit uncomfortable at first as you need to be on your back a V shaped pillow can help. I had a rolled up baby blanket that I carried everywhere! My family called it my teddy! but they gave me a rolled up towel in hospital to hug for when I coughed or sneezed! I ended up sleeping with my arms wrapped around it became a bit of a security blanket! The first time I could turn on my side for sleeping was bliss!

As I have said before cardio rehab is a must you will find it so supportive, as well as having a laugh.

If I can be of any help just let me know, I will be thinking of you, and wishing you all the best.

Pauline xx

[080311 in reply to SuzanneJ1]

Hi me again just read your bio, it says you have a daughter in Perth is that Perth Australia or Perth Scotland? I have a son in Perth Australia!

Pauline

[SuzanneJ1 in reply to 080311]

Hi Pauline yes perth Australia she's been put there for 5 years now so my holidays are spent over there. Should have gone 15th Jan for 5 weeks but was told 13th of diagnosis and that I couldn't fly! Was devastated. Thanx for practical advice have 4 front opening nightshirts will get a couple of front fastening bras from m an s.

Do you get out to Oz often. Where is your son? My daughter is about 45mins from the airport Golden Bay. Am planning to go in September think I should be well enough to go and enjoy myself then and meet my new Grandson.

Did you have any prob getting travel insurance following surgery I'm presuming there shouldn't be any issues. Thanks

[080311 in reply to SuzanneJ1]

Hi, haven’t been out to Perth husband had a massive stroke so unable to travel. Craig lives in Wembley Downs, they have been there 7 years now we have 3 granddaughters, one turned 17 last Sunday one nearly 11and our youngest will be 9 this Sunday thank goodness for FaceTime! Craig as managed 4 trips home since we have been ill, he flew home for my surgery had no idea he was coming so floods of tears! I also have a son here and 2 more granddaughters 16 and 14. So we are very blessed.

I should think you will be ok for September, though you will have to have your bloods done while you’re there for your warfarin, you really need to see this new baby! As for insurance there is plenty of advice on the forum,

Very envious of your trip, Craig and family are coming back for a visit but not until 2021.

Pauline xx

[Stevo1979]

Hi Suzanne, I had a mechanical valve, December 2018 a few months before my 40th birthday. I can only echo the previous comments about cardiac rehab, it ix fantastic especially for the mental side of things.

I had to have an AVR for different reasons to yours but can definitely relate to not being able to do a lot before the surgery. I was in hospital for 6weeks before surgery and a walk to the end of the ward was a challenge!! Roll on 15 months I'm back to work 1 year, my son and I and a very active red setter called Cooper go on our daily walks and at the weekend we do 3 to 5 mile hikes in local Woodlands or country parks.

You will get there, it just takes time.

[SuzanneJ1 in reply to Stevo1979]

Hi Steve thanks for your reply gosh you were young. So glad you've made a full recovery. I can't wait for surgery date.

Thanks 🙂

[francesw47]

Hello Suzanne

So sorry to hear that you are struggling. I have had two AVR in 5 years, last one last June. Both tissue valves, so no help from me with regards mechanical one.

I would talk to the BHF nurses or your GP about what you can/can't do at the moment. None of us is medically qualified - we are her to offer support.

I was pretty limited before last op, so can relate to the breathlesness. It is so frustrating and I felt such a twit watching boring daytime telly from about 4pm onwards.

The surgery is life altering - really! You will feel so much better afterwards, but it does take a while to feel full benefits. As Pauline said, open heart surgery is a big op and whilst routine for the surgeons is anything but for us...but the nurses are aware of that and were so kind and so competent, I felt safe when I was not able to do much afterwards.

Will you have someone with you for at least a couple of weeks post discharge? You will need some help to look after yourself and baby steps really does get you better quicker.

Most people here who have had any type of OHS will tell you that jelly legs can only walk a little further every day - then one day....wooosh off you go!

Not a nice way to start your retirement, but why not take time to make that list of all the things you want to do once recovered - and you have the summer months in which to get yourself better - hopefully in the warm!

Please keep posting (you can private message if you wish) and let us know how you are getting on.

Do you have a date for surgery?

All best

Frances

[SuzanneJ1 in reply to francesw47]

Hi Frances thanks for your reply. This is such a great site wish I'd found it sooner instead of sat here thinking I was going mad! Yes work is last thing on my mind. I'm looking at going to Oz to see my daughter, granddaughter and new grandson (due in June) in September so that's my goal.

Thank you and until surgery it's day time telly, reading and short walks.

Thanks 🙂

[Nic25]

Hi Suzanne. I'm sorry to hear you're struggling. I had a tissue valve in December 2018 age 50, so can't comment on mechanical, but like the others have said it is life-changing in a positive way. It is a big operation, but very standard these days, and takes time to recover from. But I found the difference in heart function to be amazing, even when I was still in the hospital, and I hadn't really thought I even had any symptoms.

The mental side of all this, both the operation and just not being 'right' anymore is a big thing, so it's only normal to be feeling down, but sorry to hear it.

Frances is right, keep using us all on this site for help and support, as you're not alone in this. Good luck and hope things begin to feel a little better for you soon.

Nic x

[SuzanneJ1 in reply to Nic25]

Hi Nic thanks for your advice and support. I'm going to tell my cardiac Nurse that everyone diagnosed should come or be aware of this forum it's excellent. I rang the BHF phone line yesterday as was feeling very low and she directed me here and I'm so glad she did. What I'm feeling is normal.it's such a scary place to be in. Have my pre up Tuesday so surgery hopefully not long after I just can't wait.

Thank you 🙂

[Hanibil]

Morning Suzanne I had a mechanical aortic valve replacement in 2005 at the age of 48, I went from hardly being able to walk to being able to live a completely normal life, I have to take warfarin each day but that causes no problems. I went for a mechanical valve as my doctors said the tissue valves only last around ten years and didn’t want to go through another operation as I got on in life. I realise it’s a worrying time for you but am sure you will be fine the best of luck to you .

[SuzanneJ1 in reply to Hanibil]

Hi thanks for your reply. Yes I was told that too so think I'll be having the mechanical valve. Does the ticking noise bother you?? I suppose you just get used to it and at least you know it's working would be worse if you didn't hear it!!

Thank you 🙂

[Hanibil in reply to Hanibil]

Hi again no don’t hear any ticking noise, you might at first when your in bed if it bothers you get a old fashioned ticking clock all you will hear is the clock, but soon you will stop winding it up and put in a drawer that’s where mine is. As for taking warfarin get yourself a home monitor saves going to the hospital often. Before I had mine I could hardly walk without being totally knackered. Not long after I was mountain biking and skiing 15 years on and am told it’s working perfectly.

[Tessie28]

Hi Suzanne, I too was diagnosed in January. Horrible feeling and you are still adjusting to it. I have left arm ache.. Which went away for 2 weeks then came back last night. Shortness of breath etc. I have cut back on all my usual walks. Keep well away from anyone with a cold as you need to get this done. My op, God willing will be on Monday. Now if you feel the pain is bad do not hesitate to dial 999. It is pointless I would imagine ringing 111 as it will be full of people with colds thinking they have the virus. You can always ring bhf helpline remember. Xx

[SuzanneJ1 in reply to Tessie28]

Hi Tess yes I've been having what I thought was a frozen left shoulder pain sounds similar to you. I went to A an E twice initially in my journey they just sent me home. When I do very little i'm not too bad but in my head I can't sit around all day doing nothing. My partner keeps telling me that I can do now I have a date for pre up think will just have to do that. How long after your pre have you had to wait? we're you told about this site early on? It's a fab site.

Good luck for Monday all will be fine.

Reading on here I can't wait for surgery date. Take care

Thanks 🙂

[Tessie28 in reply to SuzanneJ1]

Thanks for that. Had angiogram, then pre op. Tomorrow final pre op. Sunday final bloods. Phew. Everything crossed. X

[SuzanneJ1 in reply to Tessie28]

Hi

just wondered how you are doing post op? I'm hoping your surgery went ahead. Mine is booked for next week 26th but still no confirmation of this due to our current state re corona virus. Just waiting for a call back from the hospital.

Sending best wishes to you and a good recovery. Stay safe 😀

[Mikedabike]

Hello, welcome to the forum. I am now 3 months post op from mechanical aortic valve replacement and a graft where I had an aneurysm. All I can say the treatment I have had from the NHS has been exceptional. I understand your concerns. I am 62 years old and in less than 6 months went from being extremely active to being out of breath tying my shoes and walking the dog. It is now a very common operation. All I will say is take everything slowly, listen to all the medical advice, and when you are ready for your cardiac rehabilitation physiotherapy, embrace it. I stumbled across this forum and have found it, and still do find it extremely helpful. Best wishes.

[SuzanneJ1 in reply to Mikedabike]

Hi

Thank you for taking the time to reply I appreciate it. Will embrace the cardiac rehab sessions.

Just want to feel well again and everyone's comments are giving me the confidence all will be fine.

Thanks 😊

[Hermanm]

Hi ,

I had a mechanical valve fitted in December 2015,

best Christmas present I've ever had.

Many many thanks to the NHS,

I was 58 at the time.

In my case it came as quite a shock, as I've always been fit and active , both in my job and social life.

I'd been getting treated by my family GP for high blood pressure for ,probably 6 or 7 years ,

and nothing seemed to change ,no matter what they gave me,

In the end I just stopped going to him,

and taking the tablets.

the only thing I noticed ,that worried me at the time ,

were the palpitations, particularly at night ,

I'd wake up ,and my heart would be beating like a drum!

Anyway I had to changed my GP surgery, as I'd moved in with my partner,

( probably saved my life)

My new GP gave me the once over ,and told me I had high blood pressure, she decided to find out why.

So off I went , on a Saturday morning, for an ECG,

Thought nothing of it, got on with my weekend.

Monday morning I had a phone call from my GP, come in today please!

Not what you want to hear from a doctor,,never good news.

Anyway that was the start of it ,

A consultant told me I was suffering from , aortic valve regurgitation,

and I'd be in for surgery by Christmas,,

apparently my HBP had been mismanaged, her words not mine.

I was working 3 days a week ,as a landscape gardener at the time ,

So I too was asking the same questions as you,

Do I just stop living ,

and wrap myself in cotton wool for the next 5 or 6 months?

She just told me that ,"I'm the same person today, as I was yesterday,

Just I'm a bit more informed today!"

Lol , one way of putting it!

As for you getting out and about ,I'd just take each day as it comes ,

Every day ,is one day closer to your OP,

Keep active ,and try not to dwell on it too much ,

Very easy to say ,I know.

The operation is the easiest part of it,

You wont feel a thing, believe me ,

When you wake up ,in intensive care, you will be very groggy ,

and have a few wires and tubes fitted ,

Dont worry about them ,they will be gone soon.

the hard work will start soon enough,

They will take you to another ward ,

where most people are in the same boat,

so you will get lots of advice and help from your fellow patients,

But it's the staff who are a God send,

The nurses cant do enough for you.

They try to get you sitting in a chair next to your bed , after a couple of days

Then it's a walk to the bathroom for a wash,

Next you will be waddling down to the TV room ,

Each day it gets a little easier ,

and you will have as much pain relief and help as you need.

I think I was in for around 12 days,

then I was allowed home,

The first few weeks are the hardest ,

I was a little depressed,

because I was stuck inside ,

but it's a small price to pay!

Just take your time ,,

Everyone is different , however I was ready to go back to work after 3 months.

I'm 4 years down the road now, 62 !!

Apart from the slight clicking from the valve ,now and then ,when its quiet,

You wouldnt know I'd been bad ,

As you know, the mechanical valve means warfarin,

It's a bit of a pain,going for your INR tests every couple of months ,

but as my consultant said,

when I was thinking of opting for a pig valve,

at my age ,I'd probably need another OP within 10 years ,as they dont last as long.

and you really dont want to have this operation twice!

Probably the best advice I was given ,

so pleased I took it.

I have an American made valve fitted,

called the , ON X,

Not sure if they are fitted as standard now ,

Or if I'm just an unwitting Guinea pig,

It's made of carbon , not steel ,

and it's designed in such a way ,

as to let most of the blood flow through at each beat ,

So you dont need to take as much warfarin.

Anyway I've rambled on long enough,

however I hope you get something from my story

I'm sure we all go through the same set of emotions,

Nobody is immune to them ,

You will get through it,

it will be worth it in the end,

Take care ,take it easy ,

The NHS will sort you out!

Paul.

[SuzanneJ1]

Dear Paul,

many thanks for taking the time to reply and tell me your story. This is such an excellent site and is helping me just wish I'd found it sooner. Yes I just want the op now. Not long hopefully as have my pre op tuesday.

Thanks again

😊

[Hermanm]

Glad you got something out of my ramblings ,

So pleased you are having your OP soon ,

let us know ,how it goes ,

Until then ,take it easy ,

Paul