We are lucky to have only A/F

Hi again – all. I just had to write this last post today. All things considered, afib is not the worst thing that could happen to us and I was poignantly reminded of that last evening when a young woman (Cassandra) came to share my hospital room.

Hers is a tragic story. I am so moved by her courage. She is dying of liver failure at the tender age of 43.

She had a blood transfusion in 1983 that was contaminated with Hepatitis C. She didn't discover it until 1996 when she donated blood and it screened positive. The Red Cross sent her a letter in the mail that they were destroying her blood because it was contaminated. You have Hepatititis C she was told. Do not ever donate more blood. That’s how she found out.

She's a total mess. Veins collapsed - no entry sites - everything hurts so much, she just pleaded and begged the techs for mercy when then came in to draw blood. After 5 different people, one of them finally got a port inserted. It was dreadful. She kept apologizing. I tried to comfort her.

She is afraid of the dark, left the TV blaring all night, and didn't sleep (she is afraid she'll die in the night.) Was on heavy drugs - morphine - and vomited shortly after she tried to eat anything. She has this horrible buildup of water in her abdomen because her kidneys are also failing. They took her today and "sucked" out the water which again is horribly painful - 5 pounds of it - and she's already had two of those treatments in 7 days. Today's was the third. Her skin itches constantly. Her face is distorted with bloat.

We talked about the possibility of transplanting a piece of liver to regenerate in her body and she said - most people die while they are waiting to find a match. She said she knew she was dying. It was heartbreaking. But we talked of other things and I helped her as much as I could with little things.

So my stay there for this procedure was indeed a piece of cake when I see the tragedy of this young woman's life as it ends. I probably won't be over this for quite some time. Afib is nothing compared to this.

It gives me all the more reason to commit to my new goals and quest to educate people on health issues....not that it compares to her situation, but learning about staying healthy is important stuff, to be sure, and there's alot of work to be done.

So when you despair about afib, remember Cassandra and say a prayer for her. She’s but one story among millions of suffering people, but she certainly touched my heart today.

Jackie

Cassandra will be in my prayers tonite. God Bless her!

Michele in Pa

Jackie,

You are absolutely right. Unfortunately human perspective is usually inward looking and we fail to appreciate the lessons to be learned from looking more outward.

Just a couple of days ago I did a bone marrow procedure on a 30 year who was found to have an elevated white blood cell on routine exam and lab work. She has now been diagnosed with chronic myelogenous leukemia. Not the worst diagnosis in the world but one that is so much worse than LAF.

PC

Jackie,

Thank you for reminding all of us about how lucky we really are. I will say a prayer for Cassandra tonight, that she will find peace and comfort, with no pain.

Richard

Thanks for that moving reminder. My last stay in hospital on CCU I was sharing a room with an older lady that had a pacemaker implanted and an arterial graft and was in terrible shape.

Kinda made me feel guilty for taking up bed space.

Debbi

Jackie:
My heart goes out to Cassandra. It's a miserable situation, but perhaps not as hopeless as it seems.

"We talked about the possibility of transplanting a piece of liver to regenerate in her body and she said - most people die while they are waiting to find a match."

My step mother had severe liver failure much like you described in Cassandra. Hers was caused by a blood clot in a vessel near or in her liver that caused loss of circulation, or pressure in her liver and destroyed it. She was put on a transplant list, and as she deteriorated, her number kept coming down, until she was #1. Just when I thought she was at deaths door, a cadaver donor popped up. That was a 22 year old weight lifter who was killed in an AA. The liver was donated and shared by my step mom and a baby. It gave her a new life. It has been 6 years now and she has consistantly felt reborn, and values her life so. She is totally positive and a joy to everyone around her. Donor families are allowed to communicate with the recipients if both parties so desire. My step mom has come to know this family and they stay in touch with her and seem to feel a kinship toward her.

The problem is there are so many more hepatoneedy people than there are donors. A message to all of us to have it put on our dirver license "ORGAN DONOR". It's already on mine, for what I'm worth. All hope is not lost; and I will also pray for Cassandra.

Stay well Jackie,
Pam

The demand for livers far exceeds the supply of livers, resulting in many unnecessary deaths. Why does the demand exceed the supply? The answer is simple. The price is too low. In the case of livers in the United States, the price of a liver is zero. Any first year economics student can easily predict the result of pricing a liver at zero: shortages. The United States government in an effort to be compassionate and "fair" has decreed that livers cannot be sold, and in fact it is a crime to sell a liver. But is this being compassionate? Many people die because of this "compassion". This law should be repealed, and in fact, people should be encouraged to sell their livers, like any other commodity in a free market system. Most people don't donate their livers because there is no incentive to do so, or because they don't think about it, or because they never get around to it. However, if livers were to sell for $20,000, then many people would take the time and effort to agree to sell their livers at death, so their families would get the money. If any of you were about to die because of a failing liver and you were not going to get one because you were not high enough on the waiting list, would you not be willing to "mortgage the farm" to buy a liver and enjoy many more years of life? Or would you simply say that no, it wouldn't be fair that you get a liver instead of someone else? A free market in livers would result in a price for livers that would equate supply with demand. There would be no shortage of livers! I repeat. There would be no shortage of livers. If you want a liver, you can get a liver.

Obviously, the same holds true for hearts, kidneys, and other transplantable organs.

Jackie: Your hospital roommate would have a new liver and probably many more years of life if livers could be purchased and sold. Instead, she will probably die. Is it a compassionate system that we have now? I don't think so.

Thank you for sharing your touching story. Coincidentally, my roommate in the Cleveland Clinic hospital after my ablation last month also was a 40 year old man near death because of a failing liver. I listened as the doctor told him that there were no good options, and that he didn't qualify for a transplanted liver. I think he is probably dead now.

Newman

Newman - what you bring up is certainly true - sad but true.

Some years back, I took a biomedical ethics course at the local college and this very topic was examined in great detail. I was the "mature" person in that class so my perspective on the value of harvesting parts was far different from that of the average college person.

It is much more than dollars going back to families etc. There is the other factor that the big manufacturing industry already knows - built-in obsolescence. The same is true for healthcare...the longer we live, the more the population bankrupts the system...healthcare ....medicare....etc.

One of my patients is a nurse at a local long-term care facility. They originated as a small community based, service oriented and rather exclusive facility. Eventually, they were bought by a large healthcare concern from California. They new management had regular staff meetings about the bottom line. At one point, the staff was told...your inmates are living too long. You are caring for them too well. You have to have more turnover in the population. We can't make the money we need when they live so long and went on to outline cutbacks that would be implemented.... this nurse was so sick at heart, she left. She loved her job, she loved the people...many of whom she felt were here extended family. She gave them loving care and they responded. Today, another patient tells me she goes in to do hair appointments. The residents are tied in their chairs in waiting areas just to get them out of beds. They sit their in their own waste and foul the floors. The place reeks. But the bottom line is healthy. Greed prevails.

Yes, sure - everyone could live longer if we could buy body parts...in fact parts are available for sale right now - they just don't identify it as such. Several celebrities were in the news who abused their liver health via alcohol were able to obtain liver transplants because they had the funds to do it. It's a corrupt system.

What's the solution? Newman, you would be a great person to be an advocate for developing a system that would be ethical and fair. I'll join your team.... There are many people willing to try to make a difference.
If no one tries, where will we be in 10 or 20 years?

Thanks for the thought-provoking subject. Sorry to have gotten on the soap box.

Hope you are doing well. Jackie

Jackie

My heart is heavy. Cassandra's story really hit home with me. But for the love of God that story could have been mine. I went into hospital for a routine D and C. As I was waitning to be wheeled into theatre full of pre med, an uppity little Dr breezed into the room and told me that I would have to be put to the end of the day as my blood sample had come back showing I had hep C. I know all about hep C and what it does. In fact my former boyfriend had died of it. I must have gone as white as sheet. He told me don't worry - lots of people have it and can live normal lives for a good few years - Whoppee dooppee!!

I was taken back to the ward and put in a room by myself, no one came to speak with me. In fact I suddenly got treated like a leper. When lunch arrived it came on a paper plate. When I finished it was put in a incinerator bin in my room. Nothing was allowed to enter my room and go out again - except for me under strict supervision. They put gloves on to take my BP and temp.. Then eventually they called for me and did the op. I left as soon as I was able that night. I was dumstruck, and really groggy from the anesthetic, I believed that I was dying. On leaving they gave me a note for my GP. I opened it and it said I had hep C. So I took it to them and asked loads of questions. The interferon was not available to me due to post code lottery. Luckily for me my GP wanted to do more tests.

For three weeks I started to get things read for my demise. Then one evening the phone rang. It was the Dr. I didn't have hep C. I had had it, but was the one in a million that developed antibodies - and even my antibodies were not contagious.

Why can't people like me be used to give others the antibodies they need. I would do it freely, not for cash. Though I do agree they should allow people to sell their organs or part of them.

If you see her again - tell her to read Dr Mercolas articles on hep C. There is a lot she can do - I often wonder if I did these things inadverantly.

Fran

Fran:

"Why can't people like me be used to give others the antibodies they need. I would do it freely, not for cash. Though I do agree they should allow people to sell their organs or part of them."

Have you checked into it? Perhaps you could call your local blood bank. I have RH negative blood, and after having two RH positive babies, had developed RH antibodies. RH antibodies are what make up the drug Rhogam, which is given to RH negative moms after delivering RH positive babies. It's all confusing, but the point is that I was able to make a few bucks to help pay my college tuitions by selling my blood serum. While I realize that your desire is not monetary, and purely humanitarian, perhaps you could do that. A noble persuit, if possible.

All the best Fran,
Pam

Dear Fran -

You certainly have been to hell and back. I marvel at your life's story at every turn. Thanks so much for sharing.

I'm so grateful that you have survived to share with us. We are all richer for it.

The time you take to communicate and share with others is admirable, and especially so now that you are afib free. Thanks so much for giving of yourself.

Sincerely, Jackie

Jackie and Fran:
Ditto Jackies above post! Fran, you should write a book. You could do it, and your stories are so incredible. I'll think of a catchy title. How about
LIVING WITH A FIB ET AL
That you are alive an well is incredible and makes us all take a second look at our diet and life style. You are a wealth of knowledge. Please hang in with those of us who havn't gotten there yet.
Fran, I read labels all the time now, and have to say I have never found anything that says MSG or glutimate. I have looked on Soy Sauce labels, Teriyaki Marinade, Stir Fry Sauce and none list it, while I'm sure it's there. Doesn't the law require these mfgs. to list all ingredients?

Pam

Pam
I'm not allowed to give blood. And in all my research of hep C I have never seen anything about giving people antibodies for hep c after the fact. I know they give immunisation against hep before the fact - but that can bring on a whole set of other problems...

If MSG is added as a single ingredient by law it does have to be labled. However when MSG is made during the processing of other ingredients it does not have to be labled - eg hydrolysed protein, pea protein, yeast extract, natural flavourings etc etc.

I have been told I should write a book many many times - sometimes I feel so - been there, done that and worn the T shirt that it gets on my nerves. I have one hell of a story to my life - its all in my head, but I would never be able to put it down in a readable fashion - in fact it would be unbelievable and I would open myself up for criticism - something I find hard to deal with. My presentation is all over the place. I would need a ghost writer.

Jackie
Thanks for the comfort. I think it is because of everything I have gone through that I feel a need to put something back. All the times I never had any support has left me in a situation where I know how helpless, hopeless and unloved some people can feel even if its not true). I only try to share how I dealt with my load and how I came out the other side. Luck may have played a big part - but the I have put in effort galore and that effort has left me feeling that I have done something very very right and given me some pride back.

All the best

Fran

How about "Living Paleo in a Modern Age" and the cover would have a picture of Fran, dressed in a nice spotted fur, stalking the market aisle in search of untainted food.

Adrian