Sharon Ley (Dilated Cardiomyopathy Post Pregnancy)

This forum is intended for international users to help them with the treatment of cardiomyopathy or heart failure.
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Sharon Lekky
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Lid geworden op: do nov 24, 2005 3:07 pm

Sharon Ley (Dilated Cardiomyopathy Post Pregnancy)

Bericht door Sharon Lekky » zo nov 27, 2005 3:12 pm

Hello Corrij!

As you know, I've just registered and having been talking with Willie.

He asked me to direct some specific questions to you.

I was diagnosed on Oct 14, that is last month. What a shock! Apart from a couple of tachycardia episodes, I felt fit and healthy, except my heart has an EF of 25.

Started betablockers (Dilatrend) and ACE inhibitors (Perindopril) a few days after diagnosis and have been slowly building up dosage of Dilatrend. Since starting I have experienced the fatigue and light-headedness of heart failure for the first time but importantly, no more tachycardia episodes! I understand this drug can temporarily worsen symptoms so am trying to keep my mind positive. I feel worse than before diagnosis but the fact that my ventricular tachycardia seems to be under control to date means that the cardios are holding off on implanting a defibrillator and this is a big win so far.

I started some CoQ10 but stopped after a few days as I noticed I was adversely affected. On investigation I discovered the prep I was using included potassium which is contraindicated by the Perindopril.

Since then, I started taking CoQ10 (without potassium) starting 1 x 50g daily and now 3 x 50g. I just grabbed a Blackmore's oil capsule bottle as I know it's fairly decent. Since starting this CoQ10 I have much more energy generally speaking.

However, over two weeks I had about four episodes at same time of day (right after lunch) where I felt as though my power lead had been ripped out! Immediate and total energy drain. After the fourth time I went to hospital and was monitored for a few days. BP was between 90-105/55-70 and pulse generally betw 70-80. I had a few light-headed spells in hospital but later found my partner Matthew was experiencing same thing - probably a virus. Cardiologist was happy that I am stable and has maintained my dosage of Dilatrend (2 x 12mg) and Perindopril (1 x 4mg). He wants to get me up to Dilatrend (2 x 25g) so he can get me heartrate down to about 60.

I considered energy drain could be to do with digestion of lunch combined with that sleepy time of day (about 2pm) but generally I have enough energy to look after my two girls (1 and 4 yrs old), although I do have to pace myself. I can walk in the late afternoon for about 45 mins although as I'm walking with girls, I'm not pushed faster than a toddler's pace! So I wondered whether my hypothesis is just wrong. Or could it be something to do with my liver and blood sugar levels after eating a biggish meal?

Sorry to go on in such detail, I won't always be so obsessive ! I'm slowly learning about ups and downs and what is significant and what is to be expected.

My cardiologist is not against supplements but doesn't seem too excited either. He cleared the CoQ10 and I haven't asked about anything else til I get your protocols on what and how much. I'm keen to hear your advice.

I did buy some chromium (piccolinate) - is this the right form of chromium?

I was interested to read in one of your referenced articles on Selenium that adequate levels usually coincide with less symptoms of heart failure even when EF is low. My EF is 25 and I get the impression that I'm feeling better than expected. My bloods showed normal Selenium levels.

I've started reading other posts and this has been a very moving experience. There is a real sense of a family of us all going through the same. I feel such gratitude for your sharing so much time and effort! You and Willie are an inspiration. I feel positive about getting well and feel that this whole experience has already enriched my life - so far have experienced so much kindness of strangers. Whatever happens, I'll never be the same again!

Look forward to hearing from you,

Sharon Ley
Regards,

Sharon

Willy
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Bericht door Willy » ma nov 28, 2005 8:24 pm

Corrij is trying desparate to get back online so I wil fill in for here. :lol:
I started some CoQ10 but stopped after a few days as I noticed I was adversely affected. On investigation I discovered the prep I was using included potassium which is contraindicated by the Perindopril.
That is NOT a good product!!!! Q10 should be in a capsule with oil and vitamin E.

HOME WORK: check your neighbourhood for the folling manufacturers of supplements. Can you buy:
<UL><LI>Solgar
<LI>NOW
<LI>Pharma Nord
</UL>If not provide us with the web site of the manufacturer of your choice, but.......

we would prefere using the above products. DO NOT BUY ANY SUPPLEMENTS NOW
However, over two weeks I had about four episodes at same time of day (right after lunch) where I felt as though my power lead had been ripped out! Immediate and total energy drain.

...............

I considered energy drain could be to do with digestion of lunch combined with that sleepy time of day (about 2pm) but generally I have enough energy to look after my two girls (1 and 4 yrs old), although I do have to pace myself.
correct your digestion takes energy your body can not supply. Start eating smaller portiuons the whole day.

Please answer the following questions

Did they examine whether your veins (neck or groin) let enough blood flow?

Do you suffer with decomposition or swollen ankles?

Do you have a fluid restriction?

Are there certain things at the moment you can’t do anymore?

Can you still climb the stairs for instance?

Or do you still do sports?

How does the cardiologist call your illness?

Do you suffer from allergies or have an intolerance to food or medicines?

Do you get tired quickly?

Do you eat a lot of sugar?

After some exertion , do you quickly get short of breath?

Do you consider yourself as overweight?

Are oyu able to drink a lot of alcohol? Coffee?

Willy
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Bericht door Willy » ma nov 28, 2005 8:28 pm

Shall I change your forum name in

Sharon Ley

????
Met vriendelijke groeten,

Willy Witsel

Ben je blij met ons gratis advies doe dan
een tweet of een like bovenin deze forumpagina

Sharon Lekky
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Lid geworden op: do nov 24, 2005 3:07 pm

Sharon Ley (Dilated Cardiomyopathy Post Pregnancy)

Bericht door Sharon Lekky » di nov 29, 2005 2:03 pm

Did they examine whether your veins (neck or groin) let enough blood flow?
They did. Doctors didn't remark on this.

Do you suffer with decomposition or swollen ankles?
Don't know what decomposition is but I have absolutely no fluid retention in my ankles.

Do you have a fluid restriction? No

Are there certain things at the moment you can’t do anymore?
To be honest, at the right time of day I can do just about anything, I have enough strength and energy and sometimes I actually feel more normal when active than when resting. When the fatigue hits, that's when I could do something if I had to but I know just to lay down.

Can you still climb the stairs for instance?
Yes, I climb two flights of stairs several times a day in our house.

Or do you still do sports?
I haven't done sports since Sophie born last August (used to ride my bicycle) mainly due to lack of opportunity. I dance with the girls and we go for hour long strolls (at a toddler's pace). So it's gentle exercise, I certainly don't think I could do anything strenuous. Breathlessness has NEVER been a problem.

How does the cardiologist call your illness?
Dilated cardiomyopathy peripartum

Do you suffer from allergies or have an intolerance to food or medicines?
None.

Do you get tired quickly?
Yes, 3 or 4 times each day, interspersed with fairly quick recovery of energy - very strange!

Do you eat a lot of sugar?
No. But I used to have one sweet thing (cake etc) almost every day until last few months. Never had sugar in tea or on breakfast.

After some exertion , do you quickly get short of breath?
Not usually, unless it's intense or prolonged.

Do you consider yourself as overweight?
No. I am right in the middle of my weight range. I am 178cm tall and weigh 70kg. I was 80kg after giving birth and have gradually dropped weight in last year. Probably due to breastfeeding and I suspect my heart has been demanding extra energy. Weight has been stable for 6 weeks. I was concerned about loss but docs assured nothing worrying to do with heart condition.

Are oyu able to drink a lot of alcohol? Coffee?
No, never have been, very sensitive. Since diagnosis I haven't had any. Interesting, in 1998-9 I found that after drinking just two glasses of wine I would feel quite drunk and hungover next day. This eventually passed after 18mths but I suspect my liver was compromised at that time.

Willie, I'd love it if you could change my id to Sharon Ley in forum, easier for anyone interested in pregnancy related CM. Please let me know what my new login details are.

I'll do homework on those brands of CoQ10. I thought the Blackmore's prep had oil because it was in a capsule. I take one 500mg Vit E tab with it plus one 500mg Vit C- is that OK? Should I space away from meds or any other supplements?

Best
Sharon
Regards,

Sharon

Willy
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Bericht door Willy » di nov 29, 2005 2:27 pm

Please sharon copy your last message to the other discussion with Corrij and lets stop this discussion!!

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