support needed

[jackiesimmonds]

8 weeks ago, I had a valve replacement because of endocarditis, along with a triple bypass, and also had a series of small emboli strokes. I spent 6 weeks in hospital on antibiotices for the endocarditis, and am now home. I am feeling pretty awful...no appetite; not creating new red blood cells as yet, and the cardiologist is dragging me back in on Wednesday for another TOE. If nothing shows up, he will wheel in a haematologist to explore more. I left hospital with red blood count of 10.4 and it is still the same and I just feel so weak. I try to walk - about 10 mins is all I can manage, and I potter in the kitchen. I reckon I do about 2000 steps a day. The surgeon says it could take me a couple more months to "get back to rights" and seemed fairly unconcerned. I would love to hear from anyone who has had a similar experience and has come out the other side ok - no horror stories please, I feel too vulnerable and emotional and, frankly, terrified..

[Mary_Janet]

Hi Jackie,

I have just replied to your other post then found this post. You sound like you really have had a horrid time. I too have had endocarditis and valve replacement but did not require CABG or have have a stroke.

Patients who have routine open heart surgery without complications are told they recovery in about three months.

I was in hospital for nine weeks and lost two stones in weight and was told that my cardiologist and others that my recovery would take nine to twelve months and it did. When I came out of hospital I was very weak and like you could only do very little. A shower was exhausting, I would try and do things and then need to rest. Recovery was slow but steady. A marathon not a sprint and frustrating. Don't worry about counting steps at this stage, your Not ready for that yet and it will only worry you.

Once you are strong enough I do recommend that you take up the offer of cardiac rehabilitation as that will help you physically and psychologically to get back your confidence and fitness.

Lack of appetite is hard to deal with, try tiny portions on a tea plate, the size you would give a toddler, try having a little something every couple of hours, try and eat smart and eat food that you like.

It sounds that you still have investigations to go through and are still not well so it is hardly surprising that you are feeling low, fed up and scared, you have been through so much . Accept any help and support that friends and family offer , that's what got me through. It was a hard road that you are going through so be kind to yourself . There will be up days and down days but eventually the down days hopefully will be fewer.

I hope this helps and is what you are looking for.

Best wishes

Mary

[jackiesimmonds in reply to Mary_Janet]

thanks very much for this reply, most appreciated and helpful

[Stevo1979 in reply to jackiesimmonds]

I too was in hospital for 3 month with endocarditis and a subsequent AVR. in fact yesterday was my 1 year anniversary of getting home! I was weak to start with. Very low iron levels. I could manage very short walks and I mean very short. I used to use the lampposts as a measure. 1 lamppost and back, then when I felt up to it, 2 lampposts. A very slow process. I also developed a pericardial effusion a few weeks after my op which required another stint in hospital to drain the excess fluid. Today 1 year on I am back working, I am walking at least 2 to 3 miles a day and enjoying it! I agree though get yourself to the cardiac rehab course when offered, I found it a God send, more for my mental health than physical. Remember what you have just been through, it is going to take time to recover.

[jackiesimmonds in reply to Stevo1979]

thanks for this reply. In fact, I am not in a hurry to get to cardiac rehab as I am quite familiar with it, I had endocarditis las year too and did cardian rehab phase 3 after that, but did not push through it and did not gain as much from it as perhaps I should have. I could never run as some of the others did! And I certainly could not do an hour of exercise right now, no chance. Tomorrow I have to go back into hospital for another TOE -those who have had this will know what is involved, and I wont relax until that is over with no further complications. thanks again

[francesw47]

Hi

What a dreadful time you have had, no wonder you feel so weak and strung out. I had brutal surgery in early summer 19, for second AVR plus. No horror stories but it all went badly wrong - but here I am, at nearly Xmas, about to join stage 4 cardiac rehab.

For me what worked was good food at home then measured exercise. My wonderful children and their equally wonderful partners stayed as much as work permitted and put the brakes on my tendency to overdo it - in fact they behaved like guard dogs - but it paid off. I literally walked a few steps further every day, and gradually gradually built up to some semblance of normality again. It took time, I read a lot, rested a lot, ate well and eventually took the L plates off my back when out walking and began to go out alone! You say you are walking 2,000 steps per day at 8 weeks post op, and given what massive surgery you had that sounds like a real achievement to me. Pat yourself on the back!

Cardiac rehab is worth pushing for. If you have not had a call from them yet, call them, Explain your situation and ask for an assessment. The turning point for me was rehab (sadly it took 17 weeks to get an assessment, such is the postcode lottery). Once there it was so worth it. They allowed me to go at my own pace and I met some amazing people and exercising in company is much more fun than plodding the pavements alone. I completed rehab, am now more confident and stronger and about to start the next stage.

It does take time. Much more time than I had anticipated. But you will get there. 10 mins walking per day is a massive achievement, and soon you will be walking 12 minutes, then 15 minutes and so on....just build day by day and even if you only walk one additional second, its still more than before. Its been 6 months and I;m still recovering, I know that. And there may be a new normal - but from what you say you are doing really well, so take courage.

If you feel emotionally under par you could ask your GP for a referral for psychological support - there is a lot to talk out, you have had a frightening experience and terror is an understandable response.

Sorry about long post, but do keep us posted at to your progress.

Frances

[jackiesimmonds in reply to francesw47]

no need to apologise for long post, it was really helpful and much appreciated. Clearly, for some people, it takes much longer than I had imagined to recover fully and I must learn some patience. My yardstick was what I was doing on the ward...far more walking, stairs, etc, lots of stuff with the physio, but it is quite different at home and I feel so much slower than before. I does not help that I am not making new red blood cells and my blood count has not improved since hospital, and as a result I go back in tomorrow for yet more tests. Not encouraging, as you can imagine. sorry, I sound like a wet week, but that is how I feel. It is encouraging to know you are all doing well now, tho, keep it up. Jackie

[Ianc2 in reply to jackiesimmonds]

It takes about 8 -10 weeks for your breastbone to knit together. So nice and easy does it. You are doing well, you are up and running and you are eating. I measured my progress in steps, then in driveways, then in lampposts. Gentle perseverance is the key. If you fancy smoked salmon and scrambled egg for breakfast - why not?

[jackiesimmonds in reply to Ianc2]

thanks for this. I imagine I am still healing as my op was 11th October so I guess I am at about 9 weeks. can I ask....does on get niggly chest pains on annd off? It is 1.30am, I am up sitting on a sofa rather than in bed because I cannot sleep for niggly pains, and I had a panic attack when I did fall asleep an hour or so ago...probably because I have to get up at 6am to go again to the hospital for a TOE in the morning, and I am dreading it. Figured it is better to stay up and watch tv than lie in bed worrying or having nightmares and panic attacks! My BP is high but not off the chart, so am doing my best NOT to worry about the little niggly pains........but it is hard not to do so. Am always frightened of the TOE test, even given plenty of sedative - probably because I am scared of being told that I need yet more surgery.........he says he just wants to do it because the echocardiogram images were unclear, and it is mostly just precautionary. But my subconscious mind clearly is uncomfortable regardless.........hope I can manage to cope with being up all night, it is better than a panic attack again.

[Ianc2 in reply to jackiesimmonds]

There is a lot of repair work on under the bonnet, with some major re-arrangements taking place, which may be why you are getting niggly pains. Take your pain killers and rejoice because you are still here to enjoy the flowers. In 3 months you will be feeling much better and be ready to enjoy the spring.