James's Journal

It's coming up to one year since my open heart Mitral valve repair and thought I'd write a long overdue update since this website and people's stories were what got me through the awful pre-op anxieties. Adam's book was a great help too as was the support of many people on this website. Thanks so much! This has been a great website - we have nothing like it in the UK, so thanks Adam! Sorry if this is a long post but it's been brewing for a while.

I'm based in the UK and am 45 with 2 young kids, 5 and 3, and prior to the op all I could think about was not seeing them again. It helped to think about the mortality rate of the op which is actually similar to any routine op. It also helps knowing you have an experienced surgeon.

I found I was much more resilient than I expected and was able to put up with things I didn't think I could cope with before the op. The nurse gave me a sleeping pill the night before which helped me get some sleep.

For the op itself and the recovery, the pain wasn't as bad as expected (my kidney stone was a lot worse). The breathing tube was something I was anxious about but I was fine with it. The worst thing was the dryness of mouth and that first drink of water after it was finally out was heaven. And ice lollies (popsicles in US?) were amazing. I didn't like the drain tubes coming out but as it only lasts a few seconds you can handle it.

It was tough trying to get out of bed the first few days with not being able to use your arms much but once you've mastered the technique it gets easier. You have to cough a lot to remove the fluid from your lungs which is quite painful but again you get used to it. The worse thing was sneezing. I only sneezed 3 times during the first couple of months and I can still remember each and every one.

I was discharged with a huge bag of meds which should keep me in employment for the next few years (I'm in pharmaceuticals) and found that my recovery was much quicker at home. However I was very anxious with every new symptom I had and phoned the hospital cardiac helpline a lot who were quite helpful and the GP (general doctor) was always amenable to seeing me at short notice. However none of them obviously had the knowledge of the surgeon. Unfortunately though he was a very busy man and was difficult to get hold of and pretty short with me when I finally did.

Some good advice I was given was to measure your improvement over weeks rather than days. Some days and weeks I did feel worse but then I had a spurt where I felt a lot better. Try not to measure your improvement against people on the site too. I felt because I was only 44 I should have been quickly back onto the exercise and tried to match up with some people's reports of what they'd done but I couldn't. Everyone is different and has their own set of circumstances which will determine their own rate of recovery.

I went back to work after 10 weeks and though I felt a little groggy at first, I soon got back into the swing of things. Exercise wise I started cardiac rehab (which I would definitely recommend going to) and after that, started doing a planned couch to 5k (3 miles) running training program. I eventually ran a 5k race 10 months after my op which I was very proud of. OK, I was second to last out of about 150 but I did it! I find it harder to build up fitness now and easier to lose it but my surgeon did say that it would take 2-3 years for my heart to remodel itself and I don't think beta blockers help your ability to exercise either. I do play badminton every week and regularly get my pulse up to 170-180 which to be honest I'm still a little anxious about but I'm sure this anxiety will diminish in time. I think also you can check your pulse / BP a bit too much.

I suffer from a dizzy spells quite often (some severe) and get a lot more migraines than I used to. I find it much easier to trigger them with caffeine. bright lights and exercise nowadays. Overall though I'm just very thankful to have had this opportunity again and am leading much the same life activity wise as I was before I got ill. I find myself thinking about being a heart valve patient a lot less over time.

Again, apologies for this being so long, but I wanted to write something that might help people waiting for their surgery as these stories helped me while I was waiting for mine. I see a lot of new names on the website and less of the old familiar ones which I take to be a good sign as the people who have had their ops and are now back to living their lives thanks to the work of these remarkable surgeons and medical staff. Good luck to everyone about to have surgery. You can do this!

It's been 6 weeks now since my mitral valve repair. It's been a tough time but I finally feel some progress has been made this week.

I've had some concerns over my weakness, light headedness and congestion so I went for an extra meeting with my surgeon who arranged another echo. He said my valve was doing fine and everything was normal and that he didn't think these symptoms were anything to do with my heart. This is great news but still doesn't explain my symptoms so the investigation goes on for those. He did say I could come off the warfarin (Coumadin in the US) and just go on a low dose of aspirin which is great news as well though I'll be looking out for afib. Judging by my HR monitor I did have bouts during my walk today.

I have been walking slightly further these last few days - I managed a mile and a half today, which was my best ever. I start cardiac rehab next week when I think they'll be finding out what my maximum heart rate is so I'll naturally be a little apprehensive about that.

So maybe I just have to be a bit more patient and these symptoms will pass and also stop comparing myself to others who are ahead of me. I thought I would be back to work after 6-8 weeks but I've now realised that's not realistic at all and have told my client it will be a phased return from 10 weeks onwards. I'm hoping my improvement of the last few days continues. It's officially Spring now and the weather is certainly helping...

It's not been a smooth recovery for me from my mitral valve repair 5 weeks ago now via ohs, though I'm told it was successful. I don't seem to have made any walking progress in the past 2-3 weeks and feel very weak in my legs and light headed whenever I do any. My walking distance every day is roughly half a mile and I find that difficult. I'm relatively young at 44 and was fairly fit up until a couple of months before my op when I started getting ill.

My surgeon has advised me to stop taking the diuretics and the ace inhibitors as he felt my BP was slightly low, but since I've stopped taking them it seems my chest congestion has got worse and I've got the cough back that I had pre-surgery. I'm constantly clearing my throat and coughing and if I go to sleep lying flat, I wake up struggling to breathe. I'm hoping that my heart still needs some time to get back to functioning normally again. I was told by my surgeon that they operated just in time before any permanent damage was done but I'm now worried that was not the case and that I have congestive heart failure symptoms once again. When I look at people's recovery rates on here it seems I'm way behind, though I know it's hard to compare. I just felt I'd be further ahead in my recovery and feeling better than I do now. Has anybody else had experience of congestion after surgery?

It's crazy to think that 4 weeks have passed since the surgery. I must admit I thought I would be further down the recovery line than I am. My recovery has been hampered mainly by dizzy spells and ocular migraines. It's meant that my walks have been postponed some days. I did manage to walk about a mile yesterday which was my furthest by a long way so far, however on my way back my legs felt like jelly and I thought I would collapse. I just about staggered through the front door and sat down and didn't move for a while. My pulse had reached 120 and later that night in bed I had my first dose of post op AFib :( I was wondering if it was down to the exercise. Did I overdo it? My nurse said that someone my age (44) should be able to walk a mile 4 weeks after OHS. It would be interesting to hear how far other OHS patients were walking at this stage. As I said, my walks out have sometimes been put off when I've felt dizzy so maybe this has impacted on my post op fitness regime.

I'm now worried about AFib though. I was on amiodarone as a precaution up to about a week ago when I stopped it because I thought it may have been causing my dizziness and visual disturbances, so I don't want to go back on it again. I was hoping I've just overdone it a bit with the walking and this was my body's way of telling me. Has anyone else had these type of warnings when they over do it?

On a more positive note, I've cut down significantly on the pain meds and dropped a couple of the other meds too which is always a good thing. Just frustrated that the recovery isn't going as fast as I hoped...

Is anybody on the drug Amiodorone? I've been put on it after my mitral valve repair to prevent atrial fibrillation and feel pretty awful. I get lots of visual disorders including the inability to focus sometimes and spots when I look at lights. I'm also getting severe back and leg pains which are very painful and difficult to get rid of. I don't know for sure if it's this med that's causing it, as I'm on so many but this seems the most potent. I'm hardly sleeping either.

It's day 10 post op for me now and starting to have a couple of short walks outside. I am still getting bad dizzy spells though. I've read this can be a side effect of warfarin (Coumadin) which I am on after my mitral valve repair. Has anyone else experienced this?

After a severe bout of dizziness yesterday I stayed in another night. The surgeon says he think I overdid it. My watch said I did 2000 steps on day 4 plus I had 3 sets of visitors. I never thought I'd be the type of person to overdo it but it's very easy to do. It seems quite appropriate though that I'm returning home from my mitral heart valve repair op on Valentine's Day (not sure if you celebrate this in the US).

So looking forward to seeing my family at home again. My 2 year old daughter came in a couple of days ago carrying Valentine's heart balloons saying hello daddy and that was enough to break me. I was emotional enough before but this experience has definitely increased that.

A little bit apprehensive about returning home away from the perceived safety of the hospital but I know I'll get better quicker there. I've barely eaten as the food isn't great here and my appetite has been low and not had a good night's sleep since the op, partially because of having to lie on my back but also due to the number of people who keep coming in and out of my room overnight to take BP readings, change drinking water etc. The staff here at Papworth, UK though have been fantastic. Time for the next step in my recovery.

This is me now. Thanks to my wife Hannah for updating in my absence.

Well it's been a tough few days I must admit, but I'm told the op went well and I have no more regurgitation. In the past couple of days though I've suffered from severe dizziness. At one point I had to be assisted by a nurse I felt so unbalanced. The staff here don't appear to think it's due to my heart as an echo was done last week which was fine. My blood pressure readings have always been fine too.

I'll be speaking hopefully to my surgeon tomorrow, but has anyone else experienced this? The only new meds I started taking were lansoprazole (ppi) and spironolactone (a potassium sparing water tablet) l. I have taken lansoprazole before though and not had this issue. Has anyone else had an issue with water tablets?

Hi everyone! Just a quick update from me today (you'll be relived, after my epic tomes of late!).

James had to wait aaaaaages for his room to be free on the ward. So he'd been sitting up for hours by the time he got there at around about 7.30.

A bit scary, I think, to be "downgraded" from ICU where you have a nurse at the end of your bed the whole time. I had forgotten, but I remember now that was an issue for us when my daughter moved from being under paediatric ICU and onto the ward - it ought to be positive, but not having someone to ask questions whenever you want and the gradual removal of drips and monitoring equipment can actually be frightening. One of the nurses took time to explain that, even though he was recovering from major surgery, they're really experienced with it on the ward and deal with patients just like him all the time. They also have remote monitoring at the nurses station - so they can check his BP and stuff more often without disturbing him.

Yesterday his pain seemed under control, he got up about 4 times and did some marching on the spot. Unfortunately he was quite nauseous but that gradually improved as the day went on. I left him at about 8pm and he was drifting off to sleep.

Thank you everyone for your kind words. I imagine James will be back some time in the next few weeks, but will probably read your messages much sooner.

Part Two of the Hannah Trilogy (now I'll feel really bad if I don't come back for part three).

Thank you all for your kind words. Especially those who expressed concern about James's laptop set up. He's a computer programmer ... he ought to know better than to have the scrolling in reverse. I might change all his settings as a welcome home present. I'm certain he'd appreciate that ;)

Right, I'm going to put down some basic details of the last 24 hours - James can fill in the gaps if you need more info but I thought my view might be helpful anyway.

He went off to theatre at 7.45 am Tuesday. I had a phone call from the surgeon at 1pm. I felt pretty calm all morning, but was glued to the phone like a lovesick teenager. The last hour was a little bit tense - I thought (dunno why!) the surgeon would phone about midday - I even phoned myself to check the landline was working :D

The surgeon said that everything went well. He also said that "it really needed doing" and that "the heart was under a lot of strain". Which sounds kinda bad, but it was really a relief because it makes this all seem worth it. What sort of husband will I have when he has recovered? One that loves mowing the lawn and doing DIY, I wonder?

Cardiac recovery (sort of a cross between ICU and recovery) phoned me at 2 to say that he was starting to wake up. They knew when I said that James was worried about this bit, especially the intubation, and I went in after "rest time" at 3ish.

Everything in recovery was very calm. James "signed" that he wanted to write something (we'd discussed before that he might want to write a message) and he just wrote "gag". They switched something in the ventilator - this meant James could breathe on his own, but if he didn't then the machine would kick in. And then a long wait until he could breath on his own and his blood gases were good. Basically just waiting for the effects of the anaesthetic wore off. He asked me about magnesium levels - that took a while to figure out! He'd overheard the nurses on the other side of the room talking about a different patient. He has rather sensitive hearing ...

After an hour or two he fell back asleep.

He then woke up again, and asked to write. He wrote "did they repair?" and I was like "yeah. Did you not remember me telling you ALL about that?" "No". Alright then ...

He then asked to write again. "Dinosaur ROAR". "I forgot what." "Vision blurry" - apparently this is normal and then "my English is so cultured" which is an in-joke with a long and fairly dull backstory.

They deemed him awake enough to remove the breathing tube. He had a sip of water which appeared to please him immensely! He was speaking very quietly because of a sore throat.

I asked him what he remembered - he said he remembered drifting in and out of consciousness. I asked him if he found the tube bad, since that's what he was most worried about. He said it felt uncomfortable but doesn't remember gagging. He was surprised that it was 7.45pm ... he thought it was about 3pm.

So - all that time he was awake and asking me questions and basically I was being BLOODY LOVELY he doesn't remember. He remembers the bit where he was half asleep and I was doing a bit of sewing and probably not being very attentive. Great. There's my good wife-y brownie points zapped.

I phoned up Cardiac Recovery this morning. They said (I think) that he was sitting in his chair, pain wasn't great but manageable, and that they would most likely move him to the ward this morning. So I'm off now!

Yesterday they said his drains would be out at 6am, and that he'd have laughing gas to help with that. Oh, and he has this REALLY COOL heart monitor - the wires go into his chest and the lights flash when the atrium and ventricles contract. I think it can "zap" him if it goes off rhythm. I was impressed!

I hope all this is helpful. I've put down what I think James would have found useful to hear. He can come back and edit out any bits later, I'm sure!

Hi! I'm Hannah, James's wife. He asked me this morning to send you all an update. Hopefully I'm putting this in the right place ... I've not used this forum before (obv! Two heart ops in one family would be grim) and while I like typing on his laptop, he has it set up really WEIRDLY!!! James, seriously, fix the scrolling when you get home.

Anyway. Surgery scheduled this morning for 8am and I went in first thing to see him off. I arrived to find James very calm - all things considering. Obviously incredibly anxious, but nothing felt dramatic. A few strange things like hairballs all over the floor and bed having been shaved by the nurse (electric, not razor - if anyone's curious). And it's always hard seeing loved ones in a hospital gown. There's something about that item of clothing that really encompasses that feeling of having control taken away completely.

He apparently had about 5 hours of (pharmacologically enhanced) sleep. Which I think was pretty bloody good. And at least gave him 5 hours "off" having to think about the surgery.

I was back home in time to do the preschool run. I ought to have a call from the surgeon at about 12, when he's out of theatre, and then I plan to go down at about 3 (apparently you start waking up after about 4 hours).

The children are unsettled but happy. The youngest has been saying "daddy h'pital, daddy o'perat'n, daddy plaster, daddy ouch, daddy feel better soon" which is both heartbreaking and pretty darn cute.

I'm feeling ok. Utterly knackered - but toddler #2 and I both have colds, which doesn't help. Having had a horrific 6 weeks since diagnosis it feels like finally something productive is happening.

I'll try to do another update tomorrow - James has found this site really helpful and so would like to give some information back too.

I'm now in hospital on the eve of my surgery for mitral valve repair. Very anxious. I'm not sure I'll get much sleep tonight but have requested something to help calm me. I saw the surgeon briefly who tells me I'm first up on his list tomorrow morning so good news to get it over with. It was a fleeting visit and naturally I thought of a million questions to ask once he'd gone but I guess at this late stage all I need is reassurance. There's no answer to any question that would discourage me from signing the consent form as I know it's the best chance I have of seeing my children grow up. Saying bye to my family was the hardest thing as I've never been away from my kids for more than one night before and I could tell my eldest, 4 was sad too. I'm calmer than I thought I would be though right now. I hope I'm reaching that resigned stage where I've accepted this has to happen. See you on the other side hopefully with a fixed ticker.

So I finally see my name up in lights on the right hand side of the page under "Upcoming surgeries". I always wanted to see my name up in lights, but not quite this way.

TOE (or TEE in US) was attempted last week but not achieved due to a 5 minute battle between the probe and my tongue, from which my tongue was victorious. Thankfully, they had enough info from the standard ECHO to know that my mitral valve was severely, to use a medical term, buggered.

Had the pre-op tests done yesterday and noted that I'd been bumped back from first thing on the day to lunchtime, so I'm hoping I don't get moved again. Apparently my surgeon can change things at his whim. The nurse also shared an amusing story about him sitting next to Madonna on a transatlantic flight and being mightily peeved that she didn't know who he was. This made me smile and I have to keep doing that over the next 5-6 days, and beyond of course. For now I oscillate between sheer terror and drunken bravado hoping I'll end up somewhere in the middle on the day...

For those who've had their surgery, how did you deal with the night before? I've got to go in the night before and really can't see how I'm going to get any sleep at all.

Met my surgeon last Thursday and he's confirmed the date of Tuesday 7th Feb for my mitral valve repair (hopefully not replacement). He was very reassuring and there's no-one else I'd rather have doing this surgery but the reality of the date and discussing childcare with my wife has made me fill with panic some days. Other days I'm fine and am almost looking forward to it being able to relieve my symptoms but then the reality kicks in and I get scared. I'm trying to get in the mindset that I'm doing this for my kids as at 2 and 4 they don't want a dad who struggles to play with them and will get increasingly more so. I do have one question for anyone here. With respect to partners or friends/family visiting, how often did you feel you needed someone to visit you during your stay in hospital? Did somebody go with you the night before to drop you off? Did they come back the next morning before surgery? and did they stick around while you were in a sedative enhanced haze straight after surgery?