Slow recovery

Over the last three months I have had several heart procedures required to save my life after I was diagnosed with sepsis.

My list of procedures contains....

Removal of existing CRT-D unit from my chest.

Removal of all leads from my veins / arteries.

Implantation of new CRT only with leads attached on outside of the heart. (open heart rib cracking stuff!)

Implantation of Defib in my right shoulder (2 weeks ago)

I am now home and so tired and wasted all the time. The Doc says it may takes months to recover but after 2 weeks I would be hoping for some sgn the things are getting better.

Has anyone else been in this position or is anyone else currently ging through same thing. Be great to hear from you.

[IanGordon]

Hi, Ogilvie. What a debilitating list of procedures you've been through. But on a positive note you've had the physical and emotional resilience to come through all this and are now fully focused on recovery. To be honest, I've only had a full sternotomy and aortic valve replacement but my first two weeks, post surgery, were quite bleak with little promise of recovery. Showering was exhausting, I had no taste or appetite and it was all I could do to climb the stairs. Then there was the broken sleep and constipation. I had absolutely zero energy and no appetite for life. However, after two weeks in the wilderness, things began to slowly improve. I committed to breathing exercises, kept hydrated, treated the pain and gradually increased the distance and duration of walking - initially 30 flat metres to the nearest lamp post! So by week 5 I had upped my endurance to 5 mile daily walks. I appreciate I have been lucky with no complications or setbacks but other posters have reflected similar frustrations but eventually begun to recover. So have faith - you will begin to improve but it's not spontaneous and you will need to commit to regular exercise and you should be enrolled for cardiovascular rehab which everyone recommends. Hope that reassures you that your speed of recovery is consistent with other OHS patients experience. Hope you feel better soon.

[Mary_Janet]

Wow what a journey you have been on, you have been through so much. Not only have you been through several life saving surgeries but you have had sepsis.Firstly it is amazing that you have come so far and doing so well.

My story is so much simpler - I had endocarditis and a valve replacement and this involved nine weeks in hospital . When I was discharged I was sleep deprived had lost 2 1/2 stones and had muscle wastage. I was told it would take me at least a year to recover. I should say that before this started I was active and fit and did not realise I had a heart issue.

When I was discharged last July I had to learn to listen to my body , pace myself and accept help. I realised how weak I was when I discovered I did not have the strength to mash a pot of tatties. I found that after getting up showering, dressing and having breakfast I needed to sit down . I could only do standing up jobs for very short times and then need recovery periods. I tried to do things that I knew I could complete and gave me a sense of achievement. I built in a short 10 min walk everyday, I also went to bed after lunch and slept for an hour. I needed help with everything. The first few weeks were hard but I was just so pleased to be out of hospital and better.

I hope you are being referred to cardiac rehab which I found invaluable, the team helped me with so many issues - setting me physical targets - how long I should walk for and when to increase the distance /time I walked for. They recommended swimming - my first swim was two month post discharge when I swam four lengths and was proud but exhausted. The rehab team also helped me with the emotion side of stuff. I lacked any confidence, did not trust my body as it had betrayed me. I completed the whole course and then was referred to the gym , never been before. I was given a structured programme to follow- cardiac and muscle building.

By the end of January I was cleared to return to work, a very very slow return , work have been amazing but I still find I can only do two shifts and I am shattered. I would say I am now back to normal but lack stamina and tire more easily than I ever did.

The next few weeks and months are going to be long and frustrating for you. You will have good days and not so good days. Emotional days when everything you have been through becomes too much and days when you can enjoy life and all it offers. Recovery is a marathon not a sprint, you will not seen how well you are doing but people who do not see you everyday will see a change as you regain , strength, confidence and weight.

I am sorry this is so wordy but that is me ! Good wishes to you and remember that you are doing so well already.

[kefalonia1]

Hi honey, my heart (literally) goes out to you!! l too had procedures to save my life (twice) after severe sepsis which led to endocarditis, these infections destroyed my heart valves. l now have a AVR, pacemaker and am on lifelong warfarin. After two open heart operations l had to fight like a lioness to live. lt is a long hard road especially if you stay in hospital for an eternity, mine was 92 days. The truth is that sepsis is S**T, and it takes about a year to feel better, also watch out for the depression and flashbacks that creep up without warning. l spoke to an advisor at the Sepsis trust and he was so helpful. They advised me at hospital to big up my protein intake (especially pork) which helps with your energy levels. l don't want to sound like doom and gloom, physically l am so much better but l had to accept that l needed to rest and maybe take naps to recharge. Now 15 months after my last open heart surgery l leap out of bed like a gazelle!!! Also try to go for a walk once a day even if its only 10 minutes and gradually build it up, l know its probably the last thing you feel like doing, l said to my Husband "you wouldn't want to go F*****G walking if you felt weak and knackered like me" This was completely out of character for me but l persevered and it worked wonders. l hope my words have helped and not depressed you! Take care, Sue x

[gal4God]

I’ve had different ops but a year in I feel tried but still got more ops to come.

[clarehealsworldwide]

Best of luck with your recovery. Clare

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Thank you so much for your inspirational reply's.

Just taking it one day at a time. I hope your recovery is swift. Please keep in touch.