Can't wait to grow up ...

Well hello girls, it has been a long time since I had a post of my own. It was a very eventful past seven month. Good portion in and out of ICU being told anywhere from, I must have Epilsey to I am a drug addict with deep depression issues (that was only told to my parents!) because no one could have constant chest pains like I said I was having. Good thing that doctor only told that to my parents.

What really got to me was to arrive by ambulance and you have your body spam so bad you can't control your hands and legs from jumping and twitching, blackout while you are talking to them and still there is nothing wrong with you because all the test come back "in range". I started carrying my massive report from Mayo that showed all my testings and diagnosis showing I had Endothelial dysfunction with syndrome X (MVD) and still they tested and treated me as if I had epilepsy. (and I am the stubborn one). This happened over eleven trips. At least the first time they got the heart attack diagnosed. Once they found I had no main artery blockages though, they were confused how that could be right! You have to have blocked arteries according to these doctors and Mayo must be wrong, they have never heard of such a thing being possible. They almost broke my spirit, but I thank God every day for you women on this site. Mary, Annette, Joan and the rest of you, not just for the support and caring, but letting me know I'm not the crazy one and it isn't just in my head.

Well, Joan and Annette I finally got the doctor to give me nitro patches and I can actually do some of the crafts I use to. I can play with my grandsons for more than a few minutes without feeling like I ran a marathon or have an attack, that happened three times. Thank you seems so minor to say to people that gave back my life. Bless you and my love for you is deep. We all have become a rag tag family of sorts. I wish you peaceful nights and days. And again, THANK YOU with all my broken heart!

Hugs and Prayers-
Christie

By ChristieB
Reply 3762173
February 1, 2013 at 5:48 am
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Also, Joan I was told that we will all out grow this problem because it really only is bad when you are early forties to mid-fifties. Then we just get better and out grow it, that is what he heard the researchers have found. Oh, by the way we can't die from it either. It is just minor issues of being uncomfortable for a while due to the hormones and menopause. That is the wisdom of my current cardiologist. I just laughed at him and told him then I can't wait to grow up!

Amazing isn't he.

Hugs-
Christie

By swissdots
Reply 3763128
February 1, 2013 at 11:43 am
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Christie,
Reading your post brought tears to my eyes. You've been through some seriously challenging health ordeals and you've come through them with grace and determination.
So sorry to hear of some of the negative experiences you've endured during multiple hospital stays for Endo Dysfunction/CMVD. It's downright insulting to be invalidated while you are having an attack in front of hospital staff.
I think that their lack of knowledge about this condition doesn't bring out the best in some of these health care providers. They don't understand it, much less treat it.
I do believe their is a hormonal connection and my cardio does too. I wish research were closer to answers and solutions.

It is nice to hear that you are feeling well enough to work on crafts and play with your grandsons. I hope the nitro patch delivers long periods of pain relief and that your symptoms stabilize.

This site has some wonderful, amazing ladies and so many of them have contributed to my highest external good. When a bond with heartsisters is formed it cannot be broken because we've handed over a very personal piece of ourselves and that's not something you can walk away from.

Be well.
Warmly~ Swiss

By mmoore137
Reply 3764171
February 1, 2013 at 5:03 pm
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Christie,

I am wit you. I truly appreciate everyone on this site. They have helped me to understand the true meaning of FRIENDS as we all have something in common.

As for the hospitals and doctors that thought they were treating correctly I can only pray for them. I found my real Dr. 6 months after my first episode and I found out that quick only because my sister is a nurse and did tons of research and my brother's friend is cardiologist who has work with my Dr. I thank god for them and their ability to see outside the "Heart Attack" that most people have.

Michelle

By mmoore137
Reply 3764189 · In reply to 3763128 by swissdots
February 1, 2013 at 5:07 pm
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Log on to http://giving.cedars-sinai.edu for information on my Dr. and the research she is doing for us. I am a part of the research so I can help others who have to go through what we are going through now. Hope it brings you some happiness to know there are Dr.s that do understand.

By Floraggma
Reply 3764626
February 1, 2013 at 7:51 pm
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Christie, How do we keep ourselves from knocking on their foreheads and asking, "Hello? Hello? Is anyone in there?"
I have thankfully only been to emerg twice in the past year because like all of us with MCD or MVD I try like heck to stay out of there. The last time I also had my letter from my specialist detailing the condition and treatment protocol and I still practically had to wrestle the doc to the ground to get nitro. I am so pleased that you finally had some progress with the medical response.

By SueHE
Reply 3765491
February 2, 2013 at 5:49 am
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Hi, my name is Sue, I have just been thought the hospital system 5 time in the past 5 weeks. I was told it was in my head, was I sure that it was my heart and now they are saying it is my Esophagus. I was told by the top Cardiologist in Adelaide what it was but they don't believe you. I was given morphine for the pain which only covers up the problem so now I tell them GTN is the only way. I don't eve want to go back so I am trying to manage the pain at home. I'll see how long that last.

By MaryLG
Reply 3766242
February 2, 2013 at 11:03 am
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Christie and others,

I've posted less on Inspire lately and only popping in here and there, I think because I felt so frustrated by the doctors by proxy! But that's OK, cause seeing a post like this let's me know that I am needed. Others have help, me, too, and I have received the wonderful blessings of these friendships..and they keep me sane, too.

Christie, when you get the right MD, it will be MUCH, MUCH, MUCH easier. I promise.

xoxoxo Mary

By ChristieB
Reply 3766272
February 2, 2013 at 11:10 am
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Oh Sue, I understand your frustration. It is sad that they put on the news, push in magazines and hype shows about how women need to work harder to get doctors to listen. We are told over and over heart disease is the number one killer of women. So, here we are a group of women already diagnosed with this horrible heart destroying disease, yet we can't get any recognition from doctors when we need them most. I am sick of the hype that they want to show they "care" about women's heart health. If you listen carefully to it, they actually put the blame on us for not speaking up.

It makes me mad that the USA is so back woods on this compared to the World. I was told by my pulmonologist that there is a nitric oxide treatment, but unless you have a specific pulmonary artery disease we can't get insurance to pay and

it is $30,000 a month. I can't believe a doctor can't assign prescriptions that works and could make your life more comfortable.

Hugs and Peace-
Christie

By ChristieB
Reply 3766330
February 2, 2013 at 11:27 am
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MaryLG-

You have been a godsend to me. You gave me strength in the beginning of the horrible days last year when it went pear shaped and I was made to feel crazy. I have been taken in and not just given the straight black and white answers. You have all cared enough to call and talk to me. I count my blessings I found this site and all of you who understand exactly how I feel and what we go through daily.

Love and Hugs-
Christie

By catbell7
Reply 3769088
February 3, 2013 at 10:38 am
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from www.spacedoc.com -- he has some great information posted there -- I had been on CoQ10 since it first was brought into the USA from Japan -- and gel caps only -- (one researcher said that statins were only meant to be taken for a short term-- not for a 'forever' thing -- they were stunned with I was in the hospital and wouldn't take them -- had to have a friend bring mine in from home -- and had to have her bring me bags of salad so I could get some fiber into my diet (or my body wouldn't poop) as I explained to the nutritionist -- with the pain meds -- I have to increase the fiber or I'll have to have prunes and an enema - she looked at me like I was from another planet -- but sure enough after 2 big salads added to my meals (and hot old-fashioned oat meal I had a friend bring me -- I'd toddle down the hall to the microwave and cook it up with some sliced apples and cinnamon and back to my hospital room where even the nursing staff went 'gee that smells delish'

:)

Dr. Stephen Sinatra - Statins, CoQ10, and Carnitine
Statins, CoQ10, and Carnitine - What Doctors Don't Tell Patients

One of the main problems with statin drugs, as Dr. Graveline has reported in his writings, is that they deplete the body of CoQ10. This is well known to integrative physicians like myself who use both conventional and alternative treatments and who keep their antennas up for nutrient deficiencies commonly caused by medications. Statins deplete CoQ10, a critical raw material in cellular energy, and a major antioxidant. This singular depletion accounts for a good deal of the side effects of statin drugs.

If I had to prescribe a statin, I always made sure the patient took an ample amount of supplemental CoQ10 - at least 100 mg daily and taken with a meal. I would avoid CoQ10 sold in the capsule form, that is, capsules containing powder. They do not absorb particularly well.

The best form, according to research and my own clinical experience, is hydrosoluble CoQ10 (Q-Gel) contained in soft gels. These superior products are available in health food stores. Most of my patients, whether they took statins or not, took CoQ10 because it provides a solid boost to energy and wellbeing.

Along those same lines I also encouraged patients to supplement routinely with carnitine. This amino acid, one of my top five supplements, produces a jackpot of cardiac, muscle, energy, and anti-aging benefits. I was already so impressed ten years ago that I wrote a book on it: L-Carnitine and the Heart (Keats).

Fast forward to 2007 and imagine how good I felt about recommending carnitine all these years when I read a fascinating study from Italy. In the study, researchers randomly divided in half a group of 66 men and women over the age of 100. For six months, one group was assigned to take a 2 gram carnitine supplement daily and the other an inert placebo pill.

At the end of the experiment, the researchers reported that the carnitine-loaded centenarians registered significant improvements in energy, mental function, and muscle mass, along with a reduction of fatigue and fat mass. Among the placebo bunch, no such benefits were seen.

The mental function finding here supports a previous analysis of controlled studies suggesting that acetyl-L-carnitine (one of several forms of carnitine) improves cognitive ability and reduces deterioration in older adults with mild Alzheimer's disease.

On average the carnitine takers in the study gained 8.4 pounds in muscle mass and lost about 4 pounds of fat. That's a powerful result when you consider that loss of muscle - called sarcopenia - accompanies aging. Unchecked sarcopenia progressively undermines the muscular strength needed to handle everyday chores and activities. In sarcopenia, muscle fibers lose their volume, strength, and overall integrity. People over 60 or 70 generally start noticing this as increased flabbiness and decreased strength.

The new study was very encouraging because it was conducted among an end-of-life population struggling with loss of strength, mental acuity, mobility, and endurance. I just hope that gerontologists paid heed to the study, published in the American Journal of Clinical Nutrition. It sure caught my attention.

How can carnitine score so many points? Think about carnitine as an "MVP" inside the mitochondria, the "power plants" within cells where adenosine triphosphate (ATP), the body's basic fuel, is produced. CoQ10 is a raw material directly involved in energy production.

By Artista
Reply 3845789
February 27, 2013 at 11:24 am
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Only just saw this post! Your story of frustration is one I will not soon forget! The fact your primary treatment was more for pain that the cause of it was just mind blowing and humbling to me. The fact I keep hearing the stories of patients steam rolled over by some docs who choose to not listen a d trust the patient (with a condition where this is crucial for care) infuriates me. I know we scare them.... But treat the patient, the symptoms and help us figure out the cause and affects of this... please!!!!!!!

I hope you can update us on how you currently are. What patch dose are you on, if I may ask?

Hugs galore to you... A very brave warrior. To go through so much and still have a sense of humor speaks loudly of your strength!
Annette

PS.... I have met more and more who keep experiencing this frustration. I hope one day it's a surprise to hear someone was scratching their head or simply throwing pain meds at the situation. One day the protocol will be universal. I hoopoe one day soon!!!!!!!

By 1dayatatime12
Reply 3953833
April 1, 2013 at 5:06 pm
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Christie B. my cardiologists both feel this disease is harmless...just a nuisance...you won't have a heart attack...I am afraid they won't even want to see me. My new one said he would give me the nitro and calcium channel blocker if this disease progresses and gets worse or the dr says I don't need meds then I am going to Cleveland Clinic.

By Artista
Reply 3958548 · In reply to 3953833 by 1dayatatime12
April 3, 2013 at 12:15 am
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It is indeed true many docs don't see how this could cause a heart attack... Interestingly I bet it's because they are used to seeing massive trouble. Us?! Ghostly presence at best. Difficult when they are used to being interventionalists- they fix things! This is cellular. VERY different for them and equally frustrating!!! Not a very satisfying type if patient are we! I know personally women who have had heart attacks. Truthfully if treated we hope to keep the beast at bay!!!! Problem us? Why don't they see thus logically? The micros feed our heart muscle... It is like drying up the smallest tributary streams... If these many streams dry up or close? What happens the the larger rivers??? Domino affect.

By MaryLG
Reply 3959080
April 3, 2013 at 8:57 am
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Christie,

How are you lately? What's happening? Seems like forever since this post started, but it hasn't been that long.
xoxoxo Mary

By Condoline
Reply 3960210
April 3, 2013 at 1:35 pm
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I would trust Mayo. There the specialists get together to figure out your condition. Otherwise, you have one specialist telling you your problem is "X" because that is all his specialty would lead him to, another telling you your problem is "Y" because that is where his specialty would lead him - but the correct diagnosis may be none of the above.

By catbell7
Reply 3960779 · In reply to 3960210 by Condoline
April 3, 2013 at 4:32 pm
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from what my Heart Doc told me - each person is so different and may respond differently -- I told him if I knew what I know now about triple by-pass surgery I would have skipped it altogether and if I have another heart attack etc. I'll not go for another surgery of any type. I have such tenderness across the chest -- its almost worse than it was the first 8 weeks and the triple by-pass was the end of August (but after 3 days at home I had to go back to the ER with massive infection--11 days that time -- and talk about bad food the hospital I was in has the nastiest, most unhealthy foods I've ever tasted. Finally a friend picked me up some apples, oranges, and very green bananas because I just won't eat canned fruit or white bread/biscuits, ranch dressing--oh and she brought me some balsamic dressing by Paul Newman. :) :)

By BevW
Reply 3961739
April 3, 2013 at 9:56 pm
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Christie,

Just noticed this post. Thinking of you and wishing you well. My sis is having a very hard time with docs as well.

Bev

By ChristieB
Reply 3962002
April 3, 2013 at 11:59 pm
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There I was just seven days after I posted my last on this journal, I ended up with another ambulance ride to the hospital and four days in CCU. Of course, the enzymes slowly went up, but they didn't want to confirm with another angio in fear of damaging the femoral artery. It has been accessed too many times in the past year. Oh by the 1dayatatime12, I was also told that I was lucky because this disease is harmless. Three weeks later, I had my first confirmed heart attack. This disease is a surprise killer. It just likes to torture you first. So here is where I stand today. I have seen another type of doctor, who was recommended by a pulmologist. He was a rheumotologist, but after he looked at my files and went through my recent history, he decided it was too rare. He stated that eventhough the microvessels effect the whole body, he thought the cardiologist should be taking the lead because of the heart damage it causes. I just chuckled ... haven't been down that road. I think I'm on my nineth cardiologist and he has turned out to be a disappointment. Mostly I get, what about you going down to Emory??? Ghee ... if I could, don't you think I would have by now? Not to mention, you still have to find someone local after you get done there, which was the issue when I got done with Mayo in 2007.

Here is where I stand, I barely get out of bed. I have a doctor ordered nurse during the day while my children are in school. I am told not to stress, yet somehow I am suppose to live on $1277 a month and pay thousands of dollars in medical bills, after insurance. I have lost everything, borrowed against my life insurance, and tried to get assistance, but I don't qualify. But don't stress ...!

I failed some new blood test called cryoglobulin or something like that. So, Monday they redid the test again which takes 3 vials of blood. No one can tell me what it means. I saw the only doctor that has stuck with me for the past five years, my pain doctor. He has finally talked me into doing the Spinal cord stimulator to block pain. I had been worried about not knowing if I was having a heart attack, but after having pain so bad I wanted to peel my skin off and beat my chest until it breaks with the last attack, I don't care. He put it like this ... would I rather have a few quality painfree days and drop dead or pain and still end up dropping dead? I choose the painfree quality days! Not to mention not knowing would be better than what I have had lately.

Bless all of you and everyone who has been there all this time to listen and give advice. It is so sad everytime I see another new post from someone that reads like my life, and I know it is all just beginning for them and there in nothing good to say to help them. I somedays hurt so badly, I pray to my father above to take me home. Then I think, if I can just hold out until the end of July, my first granddaughter is to be born. I would love to see her before I go.

Hugs and prayers
Christie

By Floraggma
Reply 3962073
April 4, 2013 at 12:45 am
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Christie,
I have recently had a small dose of what you have gone through and think you are one amazing woman to keep persisting. I hope the spinal cord stimulator gives you relief. Big hugs and good karma from me to you.
Lauren

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