After CRT-D Cardiac Rehab - The recovery continues....

[Heartlady1]

Hi all

This is a long post, but a positive one, that I just wanted to share,

For those of you that know me, you know that I had a CRT-D device fitted in September of last year, as I had progressed to severe heart failure (I have had heart failure for 22 years, but has recently got worse)

From you lovely people on this site, I discovered that there is something called Cardiac Rehab that can help to get us back to full fitness (whatever that is for each of us) Now I have never been a gym buddy or sporty, so I did kinda think, mmm is this for me ? however I did used to walk and dance, to keep me fit, and wanted to be able to do this again.

Cardiac Rehab had never been mentioned to me either at the Hospital or the GP Surgery. So my thought was, well maybe I dont need it, maybe its for people that are struggling more than me. WRONG! WRONG! WRONG!

I went to my 8 week check up with my consultant, and mentioned that as part of getting back to doing things, I had walked a very steep incline when out on a walk with my son, and although my heart had seemed to cope, my knees and hips hadnt faired so well.

The consultant looked at me horrified, as if I was mad, and told me not to attempt big hills, and to take things slowly.

I felt crushed by this, did this mean I can no longer do the things i wanted, that I had to sit at home and just potter! So I brought up the Cardiac Rehab thingy with him, and asked if he thought I would be a candidate for this. “Oh yes of course, I can request this for you” he replied. Now this was only brought up at my asking, it was NOT offered to me. So please fellow hearties if you are going through treatment its up to us to ask the question.

So last week I attended my first meeting with the physio lady, I explained the following:-

1) I walk to work (about a 10 - 15 minute walk each way) and I go out at a brisk pace, so surely this is good for my heart (WRONG - as I was to discover)

2) However after these walks both my knees and hips would hurt, My concern was that although my heart is feeling better, I did not want to end up having knee ops etc, so had stopped the walking recently. Am I just getting old?

3) when going out for an evening out, nothing of exertion, a theatre trip or dinner out, I was coming back Exhausted and felt tired the next day. Is this my life now?

OMG - what she explained was LIFE CHANGING. After setting me on my walking exercise to check my heart rate she said that heart rate should be working at between 40% to 60% - mine was only working at 30%!!

Then she explained, the reason for this was that I was very unfit, now although this is not the best news lol, it got me hooked on what I could do to get my heart function working better. And this was what she said:-

My muscles in my legs had gone, so we needed to build these up. The more your muscles work then they help pump the blood around and this relieves the stress from your heart doing all the work! Thus my heart was struggling, due to my leg muscles going to mush. Thus the first thing was to get my muscles back.

Setting out on a walk at a Brisk pace was WRONG! I should always start at a slow pace, so as not to be a shock to the heart or my leg muscles. After a slow start I could then speed up for the middle part of the walk, and then slow down (NOT just stop) to allow the muscles to slowly relax back down. And the time she wanted me to do this for, was 20 minutes, not 10 or 15. Also only do once a day to start with for 3 - 5 days a week. We all need to build up slowly, not like me who was a bull in a china shop.

My concerns re knees and hips were due to me going from zero to a million miles an hour, rather than building up slowly and getting hips and knees, as well as thighs and shins to build up their muscle. (so because I was doing things incorrectly I WAS damaging my knees and hips)

She said once I had started to get fit, this would give me more energy for those evenings out and I would not feel exhausted but would start to feel fine.

How long will this all take? I asked, oh only a couple of weeks to get you feeling fit again! was her reply, although we will do a six week course of getting you back to full fitness. Now I WAS hooked, this did not take time and I could start feeling much better.

What if it pouring down? Not sure I could walk for 20 to 25 mins in heavy rain, (I am a fair weather walker) is there anything else I can do to build up my muscles on these days? Yes she replied and gave me a BHF DVD which on DVD 1 gives you exercises to do for building up those muscles (and when working through the DVD you then should do this INSTEAD of your walk) an indoor activity!

So here I am one week in, and how am I doing?

In just a week, I am feeling SOOOO much better, I have realised that I CAN do much more, and it wasnt that I was getting old or a dodgy heart, it was because I was UNFIT and doing exercise ALL WRONG!

Unexpected pleasure of doing my walks:- it clears my head, I got to see squirrels running around on my way to work, I watched the clouds whizzing by the other day when it was windy, and I feel more alive just being out and about.

I also went to a play later in the week, laughed so much, and came back feeling tired, but NOT exhausted, and felt great the next day.

My thighs and calves are looking a little firmer already, and I have lost a pound in weight!

But most of all this was so important to understand HOW to exercise, and that getting fitter was all that I needed to do, to allow me to do the things I want to. Which will include dancing, but never the gym lol! I do have a pedometer and its great watching how many steps I have done, I got to the heady heights of 6700 the other day, which I know would put me to the bottom of the table on the get fit Heart site, but at LEAST I would be ON the table, and thats the point.

So please, everyone who is feeling like I was, and has not been offered Cardiac Rehab, ASK for it. Its not about going to the Gym, its about understanding our bodies and learning how to get fit, and it has given me so much more confidence already, and allows me to have a better social life. Whats not to like!

Happy Sunday you all

[Prada47]

Enjoyed your post amazed how we need to ask for Rehab, In Aberdeen I was just referred to the Rehab Physio about 6 weeks after by pass surgery.

I must agree it is a wonderful way to recovery, exercise under supervision is such a great motivator especially when you need a little support after a Heart Scare !!! Also I think what helps is that others are attending so you can discuss your recovery with people in similar position to yourself.

I am currently waiting for the go ahead to join the local Heart Club to continue my Rehab. I finished the Physio led rehab programme, but like your self my Heart Failure has led me to be a little more breathless, so under investigation for possible procedure to open LAD and RCA to increase blood flow to my heart muscle.

Due to this I can't yet join the local club without a Cardiologists all clear but looking forward to getting back to Rehab.

Still getting to know what is available in my new local area. In Aberdeen there is an organisation called Grampian Cardiac Rehabilitation Association which has classes all over the N E of Scotland with trained instructors carrying out the exercise programmes. I think they call it Phase IV Cardiac Exercise so it follows on from the NHS programme I think !!

Thanks again Heartlady1 for your post

Best Regards

Frank W

[Heartlady1 in reply to Prada47]

Hi Frank.. thanks for your comments and it's amazing that we have to ask for the rehab, as you say. I just assumed they would offer it to me if I needed it. That's why I put this post up.... so others would realise they have to ask.... and what a difference it can make. I haven't attended my first communal session yet.... and hadn't even thought.. but yes a great way to meet others in your area that have similar issues. It's comforting to know you are not the only one isn't it.

All the best with your recovery Frank and hope you can continue on the rehab front real soon 😀

Karen

[Wodney1966]

Wow I've got a icd fitted got heart failure n cadiopathy neva been offered cardiac rehab

[Heartlady1 in reply to Wodney1966]

Hi Wodney.... this is exactly why i put this post up! I wouldn't have known either except for the people on this forum. Please contact yr doctors and ask for this great and worthwhile service. I hope it helps you as much as it's helping me 😀

[Wodney1966 in reply to Heartlady1]

Think I will look into it ty

[Hidden]

Strangely in North Hampshire (and Cornwall,where i had my HA) they were very insistent on attending rehab, and its been fabulous. Had been far too sedentary the last decade or so but now i love the rehab. Another 2 sessions minimum to go then will see whats next. Cant wait for approval to go swimming.

Good luck with all of your efforts getting back to fitness, running marathons isnt necessary but the feeling that we can is.

[Heartlady1 in reply to Hidden]

Ha ha Fredbeare I love you last comment 're marathons. Made me smile. It's interesting how some areas are more proactive 're rehab than others.. ..just glad I was aware to ask! And yes it's been brilliant. We don't have to be sporty to be healthy. Just some nice walks in the fresh air. Very fresh this morning lol. I will wrap up warm 😁 all the best with your final sessions and to continued health.

Karen

[Nanny72 in reply to Heartlady1]

I would like to take my dog for nice long walks again. Apparently can't walk him until 15 weeks post op because of It being open heart surgery. Luckily friends walk him and I just walk with them

[Mrsbeevintage Heart Star]

What a great post ,I am at the very beginning of this journey and am looking forward to getting back to full health and joining you on that dance floor ,if it wasn't for this forum I would be feeling very alone right now ,it's the best thing to come out of my CAD 😊

Heartlady1 have you thought about writing a blog? You write very well and as your new personal stalker I would read it ❤

[Heartlady1 in reply to Mrsbeevintage]

Ha ha mrsbeevintage.... funny you should mention a blog.... I do have one but it was for my many disasters... both dating and life disasters. If you want a good laugh.... and I promise all events definitely happened... then search under stritchysstories on Google and you should find. I would recommend you scroll to the 1st dating disaster... and read in order😁

I haven't done this for some time.... I may just create a heart section. . With serious... and humorous anecdotes. I do love writing so your comments have made this lady very happy today💓 thank you x

[Mrsbeevintage Heart Star in reply to Heartlady1]

Lol sounds right up my street I will definantly check it out it will be tomorrow's treat to get me through the day x

[MKB38]

A brilliant post, thankyou. Luckily I was offered rehab. I've done one week so far, and it was very enjoyable. Keep up the good work. Love Margaret xx

[Heartlady1 in reply to MKB38]

Great to hear others are getting help too. I haven't been to a full on session yet (gulp) I have that pleasure on Friday. Glad to hear you enjoyed it that helps me for my impending session 😀 x

[Lisa4]

Brilliant post thank you for sharing your experience. I’ve picked up some great tips. My Cardio Rehab is on hold whilst I’m having a minor set back, having read your post I can’t wait to get back to it.

Take care and well done.

Lisa

[Heartlady1 in reply to Lisa4]

Thank you Lisa. .. sorry to hear about your setback and hope you are back up and able to do the rehab soon. So we can all get dancing 😁 x

[Nanny72]

I start Rehab on Friday six weeks post valve replacement. I have already had hip replacement.

I have been walking since my op but am exhausted by the afternoon. I have been blaming the beta blockers, maybe I am just generally unfit.

Am now looking forward to the rehab apparently twice a week for ten weeks.

Your post gives me hope

[Heartlady1 in reply to Nanny72]

Hi Nanny.... we are all different so there can be various reasons for tiredness... but I very much hope you have similar feedback. I will always have severe heart failure.... and so will always have to be careful and conscious of this.... however to be able to get better than I was is a real bonus 😁 x

[laura_dropstitch Heart Star]

That's great news, Karen! Amazing that the new regime is having a positive impact already, definitely good for keeping you motivated to see instant improvements. I have always had burly legs of steel, so wonder if that's what kept me oblivious of my heart issues for so long. My calves and thighs must have been powering my whole body all these years 😀

I think cardiac rehab eligibility must vary according to geography. I've asked for it a number of times over the years but have been told it's only provided for people who have had a heart attack, not for any other heart conditions. The programme I'm now doing at the gym (after referral from GP - like you, due to my own research and asking and asking and asking) is phase 4 rehab, so would be what was offered to people after the initial cardiac rehab. It's maybe not quite so specialised/focused as cardiac rehab, but it is still working well for me. Just putting this out there in case any others reading this find cardiac rehab is not available for them - there will be an alternative programme somewhere if you look hard enough.

[Heartlady1 in reply to laura_dropstitch]

Hi Laura.... I would rather have the steel legs ( Laura croft comes to mind) rather than mushy legs 😁 but hey with my new regime who knows I may be steelish legs one day.

It's bad that you couldn't get rehab through the hospital. Although I did have a HA that was over 20 years ago...so I think they are giving it to me due to device implant rather than HA. But who knows. I am delighted you got to find rehab help.... and you seem to be doing amazingly well with your routine 😁 as I may have helped you on rethinking the alcohol side of things.. . You have been very inspirational in getting this unfit couch potato thinking of exercise in a much more positive light... thank you 💓.

Could I join the exercise table site that you are on even with just a pedometer? I just want to make everyone feel good by sitting at the bottom of the table 😂😂. But would love to join in x

[laura_dropstitch Heart Star in reply to Heartlady1]

Hmm, I don't think you can join without a fitbit but you might be able to see the league table? Maybe we could have a weekly step post on here so people could join in regardless of what counter they use? I was away in London this weekend and got 25,000 steps in one day (thanks to getting lost!) so am hopeful I'll be at the top of the table! 😂

[Heartlady1]

Ha ha lol. I am off to London next Tuesday... so who knows 😁. Hope you had a fab time in the big smoke x

[Mary_Janet]

Thank you for such an excellent post. I too greatly benefited from rehab. I was very weak and wobbly after nine weeks being in hospital. I was referred to the rehab team after my surgery in Edinburgh and was concerned that this might be lost as I was transferred to my local hospital, St John's for a further month of treatment.

In my class there was an array of folk with cardiac conditions including someone with an implanted device.

I too was started on 20 mins walks and have made really good progress. The rehab classes gave the confidence to start exercising again. We were also offered a gp referral, 3months free at the gym , something I had never tried before and am surprised to find I enjoy. I started with an assessment including BP and HR and had a review after six weeks. All reported to the GP. The three months free is up and I am now a fully paid up gym bunny ! I have found that I like have targets to work to also on wet Scottish winters day going out is less tempting !

[Heartlady1 in reply to Mary_Janet]

Hi Mary.... thank you too for your lovely reply which spurs me on 😁. It's interesting to hear of the referral for a trial period at a gym.... I will see if this applies here ( for those rainy days )

Glad to hear of your great progress and how that has moved to become a lifestyle thing. I hope it becomes as such for me too. 😀

Karen x

[Prada47]

Hello and good Morning

When I was in the Hospital after having CABG surgery, a Physiotherapist used to come round daily and ask how you was feeling and are you walking around the ward and venturing out of the confines of the ward environment, shop, café etc.

I was given a booklet to record walking distance and time and that's where i was introduced to the Borg scale. A scale which guides you in how hard you are exercising. This is the scale that was used at the Rehab Class about 3/4 way through the class the Physiotherapist would check how you felt on the scale 1 to 5. 1 being easy and 5 hard.

Before the class started a Nurse or Assistant would check your Pulse and BP and check you hadn't had any change to your medication before the warm started. At the end of every session your BP and pulse was again checked just to make sure you had recovered !!

All in all it was an excellent way to understand that exercise wouldn't have you ending up in A & E.

I am amazed that this is not available in every NHS Trust with Prevention rather than Treatment being advocated as the way forward. I suppose a shortage of Physiotherapists is one of the reasons, but it's not beyond a lot of people to be trained in a comparative short period of time to be able to carry out Cardiac Rehabilitation Exercise Programmes. As I wrote in an earlier post being with people in the same boat as yourself adds to the process of recovery.

Best Regards

Frank W

[alexgilbert]

Hi Heartlady, I'm so glad you posted about this. I too wasn't offered any form of cardiac rehab but after reading your post I immediately phoned the hospital and this morning I received a letter with my first rehab date in two weeks time. What a result! I am so looking forward to it having read your post as I feel I have lost a lot of fitness due to lack of exercise after my ICD implant two weeks ago. I don't know if availability is a bit of a postcode lottery as with so many things nowadays. My appointment is in my local hospital the New Victoria in Glasgow. 😁

[Heartlady1]

Hi Alex delighted that my post has been helpful in getting you the rehab that you need. 😁 it does seem strange tgatvthey don't offer automatically but glad to spread the word.

Karen