Trying to get to grips with feeling ill

Knowledge is best therapy...

by BOBTHOM - 2018-08-05 16:01:35

For me, learning more about the heart and how it works, as well as my specific illness has been the best therapy.  Reading these posts and seeing many others going through the same thing helps me understand more too.  I know I'm not alone!   I can now have an intelligent conversation with my cardiologist, tell him he's full of crap (in a nice way) when I need to, and get him to at least guide me in the right direction.  They do know more than we do however they practice medicine like managing the herd or flock.  They do what's best for the 80%.  If it doesn't work for you it's up to you to see what can be modified to better meet your needs.  Part of that is also an insurance issue.  As long as they follow the guidelines the insurance will approve it and pay for it!  And, they can't be sued for malpractice if they have at least first tried all the guidline therapies.   So again, it's up to you to learn about the heart, what therapies there are, and your specific conditions.  Things like diuertics, they keep trying to push them on me.  I'm slender at 5'11" and weight 155-156 lbs.  I am not retaining fluids.  But they insist I must be and keep pushing them.  I finally started a log of bathroom visits and brought it with me to the doctor.  He looked at it and just shrugged and said well if you see yourself retaining fluid then start taking it.   Little secret on that as well, I drink Pomegranite/Cranburry Juice (oceanspray).  No soda, no water, occasionally some other type of juice but I feel best when drinking that.  I do make a pot of coffee in the morning, and have no issue having a beer or two in the evening or a glass or two of wine.  Note, they are all known diuretics!   Works for me and one less med I'm dependent on.  It's the small victories we have to shoot for.  Educate yourself, plenty of info on this site and alot of people going through something similiar!  Good luck!

Don't forget the valve repair!

by LondonAndy - 2018-08-05 18:46:29

You've been through a lot, and it will take a good six weeks for the physical recovery, and quite a while longer for everything else to follow. Also the anaesthetic they use can have quite an ill effect, so don't be hard on yourself. 

When I had open heart surgery to have a mechanical aortic valve fitted in 2014, which I know is more dramatic but I think many of the issues will apply to you, the London Heart Hospital did an excellent briefing session, lead by cardiac nurses, to let us know what to expect after surgery.  One point sticks vividly in my mind: the body is amazing at healing itself, and diverts energy from other parts to the bit that needs fixing.  The brain is the largest user of energy in the body, so it is not at all surprising that it doesn't function as well whilst energy is diverted from it.  In fact we were advised not to take any significant decisions for the first three months! 

So yes, it's a pain whilst we recover, but remember how you were before and look forward to a brighter future soon - and let family and friends look after you.  (Milk it a bit!)

Give yourself 6 weeks

by Queen50 - 2018-08-06 09:17:47

I , too, was feeling absolutely miserable after just my pm implant just 3 days after an ablation. I kept reading here about the magical six week marker so I just said to myself I won’t worry until then. The people who have gone before me had given that advise to me. And almost to the day  there was a marked difference. So I offer the same timeline to you.   Worked for me. ❤️

Forgot to mention

by Queen50 - 2018-08-06 09:24:00

Sorry I forgot to mention in the above comment that I am only 4 months out. So it is still relatively new to me too. But I went to an outdoor party yesterday and marveled how wonderful I felt after being so miserable only a couple of month ago. Things get better!

update

by Ding - 2018-08-06 11:18:21

good, I’m sssoooooooo looking forward to feeling better again, and after finally getting out to a dog walk yesterday evening, I’ve decided to try and overlook the feelings and just press on, QUEEN50 I will definitely head to that 6 week bench mark, that really helps thank you, I’m aware the same post must flag up all the time, I’m not sure how to obtain all that good, sound, previous advise offered to others over the previous months, I suppose part of this support process is that each person can just get their thoughts out there, so thanks for repeating that good advice. LONDONANDY thanks for your post, I’m afraid I’m just not good at milking it! my father-in-law used to be a welsh miner and once saw a man carrying his own severed leg out of the mine! I’m afraid that kind of set the tone for anyone milking anything in this family lol. incidentally I had my valve repair in St Georges, did you see the news the other day I’ve written a post here about it and my experience, it’s quite interesting if you wish to take a look its under my other post ‘Feeling so unexpectedly bleak’ by Ding > update- 2018-08-04 08:34:37

Just signing off of this post on a more positive note

by Ding - 2018-08-23 04:28:44

I think about 4 weeks post opp now and feeling so much brighter, most discomfort is gone and that dark bleak feeling had thankfully left me, I really panicked about that. I m really grateful for all your support it helped so much when the people around me just didn't get me, even though they tried. 6 weeks definitely seems the time frame for recovery. Thanks again