Sue's Journal

Hi everyone,
I'm coming up to 10 months post-AVR and feeling good, despite the promise of Winter in the air. This site has been fantastic for me – I learned so many important things I didn’t get anywhere else, that helped me have a relatively easy surgery and recovery.

Still feeling a bit slug-like (sort of like sluggish but not quite that!) as I try to get back to a regular gym program – which I seem to be strongly resisting. At least I walk most days.

I clearly need a project, so thought I’d write a book…..as you do!
Why not a light-hearted little book on heart surgery? That’s something I know a bit about. It won't be any sort of threat to Adam's book, but still full of really useful and doable info.
It hasn’t got a title yet, but maybe 50 TIPS FOR HASSLE-FREE HEART SURGERY

And with that in mind, I’d love to hear from anyone who could offer a piece of pithy advice for before, during or after the event. Images might work too.

It’s early days yet, so the format isn’t clearcut, but I’d also like to maybe add people’s name and area (or not as you wish).
Email would be the easiest way for me to keep track rather than on the feed – my email is: sue@suewaterworth.com

Look forward to hearing from lots of you with your best ideas, tips and tricks. And of course, you'll get a free copy if you're featured in it!
Sue

My daily walk....how hard is that?

I'm into my 13th week post-op, and it's all gone really well - I can sneeze 6 times in a row without holding on!!!! My body is doing all the right things.

But I'm wondering about people's level of fatigue, or is it just a level of depression and procrastination? I sleep and eat and walk well, but (while I do have a tendency towards bone laziness,) I can't seem to be bothered doing much, like simple gardening. Is this just me, or do others have the same issue, and does it take longer than 12 weeks to get back to whatever normal is?

Oh Wow! I'm singing! In my 8th week post-op, and free. I can even cough now without clutching my chest. And what a relief that is. And I haven't sneezed once since surgery....Thank you Universe!

Saw my cardiologist yesterday following an echo, and he's ecstatic (well, that's a bit strong for him, very pleased might be better) saying the valve is working beautifully. Then saw the surgeon today, and he is likewise very happy with the way things are going.

I'm driving, can lift 10kg, and do as I please within reason (the surgeon seems to think I'm sensible enough to know what that means) Still going to rehab for a couple more sessions, but will be glad when it's done.

So, with good luck and a fair breeze, I'm headed for good health and lots of vitality.

Best wishes to everyone who's just at the pointy end of their journey......and even though you may not believe it now, everything gets better really quickly. Just hang in there.

Into my 7th week post-op, and proud and grateful that my recovery continues to be easy and all in the right direction. I had to see the GP then the Cardiologist last week. Both commented that my blood pressure was a bit high. I told both it was because I was seeing them - their fault entirely!

And to prove that it wasn't me, I borrowed a BP machine and recorded twice daily readings. Last night it was 180 over something, so I waited a few minutes before redoing it.....213/110. Oh crap!!!! I'd had palpitations for 24 hours, so got pretty freaked. Finally got a friend to take me to A&E, where I eventually was given a beta blocker and sent home.
Turns out, the Amiodarone I was given - just for a few days - because I'd had afib for no longer than 3 minutes, I kid you not, had messed with my thyroid, and that's probably what caused the high blood pressure. It can take up to 100 days to get it out of your system. Bloody drugs. I read the side effects of this particular one, and while it may be effective for intractable afib, it's sooooo toxic it'd better be necessary.

So now, with pulse and blood pressure absolutely normal, I'm light-headed and dozy, and won't go to rehab in case I fall off the treadmill.

I'm fascinated to hear others talking about rehab and all the fabulous monitoring they get. We get none, except visually - just doing a gentle circuit and using treadmill or similar at our own pace....waste of time, I reckon. I went for a walk yesterday, and there was such a frigid wind blowing that I walked faster than I had any idea I could. More useful for my heart I think.

Echo tomorrow, and seeing the surgeon Monday, so I hope hope hope I can drive after that, I'm starting to get cabin fever, and need my independence back, quick.

In its' benevolent wisdom, the Aussie Gov department of something or other provides subsidized services for "the aged and infirm". I qualify for a cleaner, having had serious surgery. Yea, I thought. I hate housework with a passion. One hour per week is certainly better than nothing....I thought.

Yesterday, without warning, Wendy turned up on my doorstep, ready and willing to help me out. But there are just a few caveats:
not permitted to dust because it's possible they'll break something
not permitted to move any furniture
not permitted to vacuum the stairs because it requires lifting the vacuum cleaner
not permitted to clean windows even at arm height

There are probably others, (I bet the stove and fridge are off limits) but I didn't dare ask! Is this bureaucracy got completely mad?

Luckily, I was just contemplating changing the bed, so Wendy did that for me, made a few passes with the vacuum cleaner, and washed the tiled floors (all three tiny areas) asking should she move the mat in the laundry 1 x 1.5 feet) or wash round it!

And her hour was magically up. I'm still reeling from this truly amazing performance.

Had my massage yesterday - just half an hour, sitting up. I immediately felt so much looser, and this morning, though a tad sore from it, much of my chest soreness is gone as well as the shoulder issues. Much freer everywhere. Will have another in a few days.

The surgeon said to expect up days and down days. And since I've had lots of good days, there was always going to be a downer...and today's the day.

I feel mentally and physically crap, not to put too fine a point on it! And what I'd really like is to be suspended in a huge hot tub for the entire morning. Just to float there with no input from me.

Think it's probably the result of the walking to the shops a couple of times yesterday. I didn't carry very much home, but I suppose it's stirred up some more of my chest muscles which thought they'd been retired. Anyone relate to being sore in every nook and cranny of your upper body? I bet there's plenty of you out there.

So with no hot tub in sight, I've instead booked a shoulder massage to see if some of the tightness can be relieved. And I'm getting someone else to do the shopping!
Meanwhile, feet up and hello Panadol.

Hard to believe it's getting on to 4 weeks since my surgery. There are days when I think maybe it was only yesterday - like when I have a 'good' cough; and the days when I feel so good I forget, and as I did recently, plop down in a chair.....OUCH!

My recovery is going really well though. Went to Cardio rehab this week for the first time. Tried catching a bus, and that worked. It leaves across the road from my house, and isn't that far to the centre. So now I feel I've got a level of independence, and can go to the shopping centre if I want; note to self: remember, no more than 5kg to carry home.

So, cardio rehab just about killed me. I went from a gentle stroll along my street to an hour of exercise, even though gentle. That night, I thought I'd been run over by a truck. But I slept like a baby-child, and woke up next morning feeling somewhat looser.

So today, I'm off to the local shop, which is probably 7-8 minutes away, and plan to go a couple of times a day to buy what I need. But slowly!

I keep trying to reduce my Panadol, and have only managed to get it down to 8 hourly. Rather than generalized pain, I still get very sore areas, mostly left side upper chest. But moving around, and I notice this in bed specially, is getting much easier.

The other tricky thing to deal with has been tight sore shoulders and between my shoulder blades; if there was a next time, I'd make sure those areas where as flexible as humanly possible (isn't hindsight a wonderful thing?)

But i'm truly and continually grateful that I exercised as much as I did, and was really fit to begin. It has made life just so much easier. Pilates for the strong core muscles, and a step class for lower body strength. At least Pilates is easy to do, even if you can't do too much, and can be tailored to your needs.

Had to see my GP yesterday...why? who knows, and what a waste of time. Part of the medical rort where everyone needs to be in on the action, I guess. Could I be a cynic, I wonder? She took my blood pressure, had a chat and that was it. $30 thanks!

Off for my indulgent morning hot shower - I promise to worry about the environment again just as soon as my shoulders stop aching!!!!

Yesterday evening and this morning I've had a lot of unpleasant pain in my left chest and underarm. It felt muscular - stopped if I supported that arm and stayed absolutely still. So after an obscenely long hot shower this morning, I put on a bra for the first time in weeks....didn't think there was much worth supporting there! But - Voila! it feels so much better already. The surgeon had said that a really firm sports bra would make me more comfortable when its cold - he's clearly right, even without the cold.

What a relief to have one less thing to panic about.

Time is flying by, and I improve every day. Had a couple of 'ordinary' days, but today's a good one - an 8 hour sleep always does wonders for morale. When I have less than perfect days, I reach for the Bergamot essential oil and use it often; it really helps to lift depression and anxiety.

Walked past the letterbox, and halfway along the street (not very long). Later repeated the walk, but went to the end. Survived another milestone. Yea.

I have a friend staying for a few days, and I'm surprised at how easily I could slip into watching someone else preparing meals and then cleaning up afterwards...and I thought I was totally independent!!!

But I'm surprised at the simple things you can't do and need help with, like fluff up the pillows (maybe stamping on them would work?) unscrew tight jar lids, and reach up to very high shelves. In general though, my house works well, so life is looking good.

Two weeks later, and Home-Sweet-Home in one piece, at last. https://www.heart-valve-surgery.com/journals/user/suewaterworth

My Aortic valve was replaced as planned on 16th July, and everything went textbook fashion from beginning to end. Apart from less than 5 minutes of Afib when the trace wires came out, it was straightforward.

Got home yesterday after 2 weeks in hospital, and have just woken from 8 hours of blissful sleep in my own soft, warm bed. I'll try never to forget such simple pleasures again.

Of course, there's been some discomfort along the way, but that's been managed with Panadol (think that's Tylenol in US) after day 2. The only serious pain was coughing, and that's horrible...and still is pretty awful.

I am so grateful I'd persevered with the gym for the past few years, because having core strength and strong arms and legs made it soooooo much easier to move around, though getting in and out of bed was still tricky!

I asked for, and got an extra week in hospital because I live alone, and am really pleased I did that, though I had trouble dealing with the continuous noise and intrusion of staff. Can hospitals be the noisiest places on earth I wonder? When I first went to the ward, my room was right at the nurses station, but luckily I had ear plugs. But staff were lovely, and always ready to help.

My biggest surprise was my surgeon. What a gem. I'd liked him as soon as I met him, pre--surgery. But he visited every day for 2 weeks, often sitting down and chatting. Warm, funny and humane. And clearly very competent. Despite having a classic sternotomy, I've only had discomfort, and already have what will be a good clean scar.

After many years spent working in operating rooms with surgeons, I simply had no idea it was possible! Dr Ash Hardikar, thank you so much.

Food was as bad as I expected, but I supplemented it with a continuous supply of avocados and vegetable juice that friends brought me,

And so now, it's lots of gentle walking, and fabulous food and quiet, to regain the old me with the brand new valve.

Today is admission day, and I'm pretty much ready to go. Apart that is, from finally doing the housework.

But it's only 6.30 am, and I'm ready for breakfast. Trouble is, the fridge is full of nothing. There's half a celery, and jars of fermented veggies, but not much else. Doesn't sound terribly exciting. Being highly organized clearly has a downside.

Oh well! I guess its off to the local cafe for fuel before I get to work with the vacuum cleaner.

Only a few days to go, and I'm busy putting 'care packages' into a few of my friends freezers! Lovely light almond bread rolls and containers of creamy kefir. And little jars of crisp fermented veggies. And I've got a bag of ripening avocadoes to take with me. The thing that worries me most (Ha! little do I know!) is the hospital food. I generally eat with real care - everything fresh and real, with lots of veggies and fermented foods. So, I'm hoping that along with juices I intend asking people to bring, in lieu of flowers, I'll not die of malnutrition! No flowers, because I sneeze all too readily, and I can just imagine how that feels.
Anyone would think I was obsessed with food!

I've been putting off the housework, but today has to be the day - or it'll never get done. Then I can holiday from it for a while since I live alone, and will need someone to do it for a while afterwards.

Hi All,
I've been skulking round this site for 18 months, as I waited, hoping I wouldn't need an Aortic valve replacement. It's fantastic to be able to hear from others what its really like, so thank you to everyone who's posted.

I'm in Tasmania, that wee island at the bottom of Australia. Not a lot of choices here, but I have a lovely surgeon who I think will take great care of me. My surgery in on 16th July, after 4 cancellations due to the snafus of setting up a new unit.

I'm wondering if everyone who has bovine valves goes on lifetime Aspirin afterwards. Or are alternatives being used?

Sue