Category: Marfan’s Syndrome

Jennie Logsdon martin age 44

Name: Jennie Logsdon martin
Email: jennie@ifish.net
Age at time of Dissection: 44
Type of Dissection: Both Ascending and Descending
Date of Aortic Dissection: 10 December 2004
Tell Us Your Story:

I‘m still alive!

I keep a journal. I have kept one of my life, except for about three weeks right after my dissection. I was just reading through the day before and the day after my surgery. I thought perhaps it might be interesting to someone to read my account of what happened and how I felt the days before and after.

I have Marfan syndrome and aortic dissection’s are quite common for people with this. Anyhow, there goes. I know it’s a lot. If it can help anybody though, I’m glad to share it.
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I am absolutely floored to look at my calendar for December. I just told my kids if they don’t have a wish list for Christmas prepared in two days, Santa will not be prepared by the 25th!
Besides our very own Christmas party on the 6th and Christmas shopping for the kids at Emanuel Hospital, I have scattered medical appointments, eye surgery on the 16th, and another medical procedure, next week! Sheesh! I don’t know how I’m going to do this!
Check in with me in January. I may still be alive!

Lately, I take more walks on the river without a fishing rod, than with. I don’t have faith that there are many steelhead in, and I’m growing weary of salmon. Besides, they are spawning, and I hate to take the chance of disturbing them out back. Don’t get me wrong. There will be fresh salmon coming in until January, but you just have to sort through them. My shoulder doesn’t much like that option, so I can’t wait for steelhead! Steelhead fishing is much easier on me than salmon. Lighter gear, lighter fish!

My dog, Kilchis, is highly trained, you know. I’ve spent countless hours with him in discipline.
One of his many talents is salmon spotting. Kilchis has so much fun spotting dead salmon in the water. I ask him, “Kilchis? Fish?!?”
He has learned which back eddies they are most likely to settle in. I praise him for “fishing” and he gets all waggly tailed about it. I’m certain he thinks that finding a dead one more often than I find live ones, makes him the better fisherman! Lucky for me he doesn’t usually roll in them. He just points them out to me and acts like “What a fine dog am I.”
Kilchis “digs” on command.

Merry Christmas Chinook!

I know. All you folks out there work hard to keep your dog from digging in the yard. Living on the Kilchis river, we have banks of dirt to spare, and if I reach down, and excitedly say, “Kilchis, dig dig!” He again gets all waggly tailed and digs to his heart’s content. I hover over him and praise him. “Oh, Kilchis, what a marvelous dog! What a beautiful dig-dig! Ohhhhh, Kilchis! Good dog!”
Man, I had a tough time training him to do this, and I get hardly any respect over it.

I get a kick out of how he digs faster and deeper, until all that shows is his waggling backside.
“Can Mommy dig-dig?” I reach down to join him, and he growls! This is Kilchis’s dig-dig and I am NOT welcome!
Kilchis is much like a small child, and I’m enjoying his company.

Come time to really concentrate on steelhead, I am sure to get a scolding from Bill. The banks of the river look like a torture track. “Watch your step!” I’ll shout. Kilchis’s “dig digs” are dangerous to the bank angler’s footing. I just hope we have a high water before Bill decides it’s time to go. Bill just doesn’t have much appreciation for a well trained digging dog.
With it will come a clean slate of riverbank. Both for Bill’s fishing, and for Kilchis’s talented tricks.
…and you just wait! Bill will be pleased when he finds out that Kilchis can point fish!
Oh! Click here for the winner of the fishing trip. I have a new contest to put out, and it will be up soon! Congratulations, dear winner!
Hope to see you at our Christmas Party! I think this year will be the biggest of them all!
Stan Fagerstrom’s last column on Silver Lake is up. I’m sorry to say that Stan is moving from Oregon to Arizona. I’ll miss how close he once was, but I’m wishing him many, many sunshiny days on the lakes, there!

December 3rd

Please be patient with me! I won’t answer e mail or private messages for a bit.
I am leaving for Portland to a biz meeting, and then the docs. If I don’t get out of the doc appt. in time to drive home before dark, then I have to stay overnight in Portland.
Meanwhile, how many of you can say you caught three salmon in 20 minutes?
It’s five in the morning… the power was out for three hours last night as we all froze. I had a terrible dry cough all night, that just wouldn’t quit.
Off I go, regardless of sleep or good health. This trip too, shall pass! I already miss Kilchis.

December 4th

Ah… A day off, at home. Thank God for Pete, who drove me to downtown Portland, yesterday. I get so stressed out driving in Portland that I almost refuse. The trip across the hill is enough for my eyes! By the time I reached Mcdonalds in North Plains, I was exhausted.
Good thing to see Pete, waiting to help me to the next leg of my appointment schedule.
We went to visit the home of the ifish server. It is in a secured room with so many others! Blinking red lights light up like an electric fireplace! The power of it all amazes me. They have tape drives that hold up to a terabyte! That’s as close to infinity as I can imagine!
I’ve always wanted my own T1… but how ’bout taking a tour of Opus Interactive’s connection ability, by clicking here? Now these folks have secured power! I was like a kid in a candy store!

“The data center is fed by both fiber optics and standard copper. Two telcos provide separate fiber entrances to the building. They have two OC3 cabinets allowing for 311.04 Mbps of available bandwidth over their optical SONET ring metro networks. We can provide circuits up to DS3 into the data center for cross connection to customer equipment.”
I copied that from their site. What does it mean? It means that I feel secure in our data transfer!
I put an ifish decal by my rack, and they took a picture of it. I can’t wait to have them send it to me. I’ll post it here. I’m proud of it!
Their offices are so cool! On Friday, the employees take turns bringing breakfast. A full spread of Noah’s bagels and cream cheeses of all sorts were laid out for nibbling.

The building is one of those I’ve always dreamed of living in, if I were a city dweller. You see spaces such as these often, in the movies. It was a huge open expanse. An old warehouse, furnished with trendy new furniture. Office cubicles were divided by pretty folding wall panels. The whole space was warm, roomy, and inviting. If you cleared it all out, there would be plenty of space to play frisbee with Kilchis! We could be happy, there!!
They showed me how Opus can never go down. They have redundant and conditioned power provided through use of a UPS and an on-site backup power generator.
The people are great, there. I had a great morning.
Anyhow, after that, I went to visit my new neurosurgeon at St. Vincent Hospital. He gave me a list of new appointments I have to make. One, to a pain anesthesiologist, one to have a new MRI done, and another to a different Orthopedic surgeon for my rotator cuff.
Yawn. I’m so tired of doctors… He was very nice, but… I was so hoping for a one hour visit where he just fixed the problem! Give me a miracle, Doc!

Is that asking too much?
I’m going to relax, today. Maybe make it to Freddies for a little Christmas shopping. It’s going to be tough this year, trying to get all things done by my surgery date, December 16th. But, in a way that will be great! Then I can just kick back and recover until Christmas Day!
I hope you have a great day! I’m off.

December 5th

I had this idea that the “Christmas for Kids” Christmas party at Pietro’s was an easy, no frills get together with nearly no planning. It was! It was that way! Really! At one time!
Last year, in my carefree misconception of the party, I forgot to bring the ifish name tags. That was when I began to realize that this, too, requires planning!

This year, I will not forget anything!
My garage has a newly created center isle for “party planning.”
In it; a picnic bench full of Christmas gifts for the moderators, signs and banners for ifish, unwrapped Christmas gifts for the kids, a notepad with lists of people to thank, who have sent me checks to donate to Emanuel.
Notices from the post office that I have boxes to pick up.
I also have stacked decals, books, hats, and the remainder of the Ifish 2004 Kwikfish neatly at the end, for sale at the party.
The pontoon that we raffled off for kids gifts waits for someone with muscles to lift it into my car.
In my mind, a jumbled array of funds, to divvy up amongst some of the ladies at ifish, to go shopping for the kids. I hope I have figured the amount correctly!

Pete has organized volunteers for both the “meet and greet” table, and for hauling the toys to the hospital. I, of course, got confused by email offers of help, and private message offers of help, on the board.
Therefore, I failed to include some members in the tally of volunteers. Argh! I’m so sorry!
I am going to make this party organized, now, so that I may enjoy the company at the party, once it begins. I’m going to sit down, and enjoy Pizza and my friends. I also hope to be able to be a part of the group that delivers the toys to the hospital. In years past, I have gotten too tired by that time of night, and have excused myself, early. This year I’m going to plan a nap, mid day, so that I might… just might be able to make it to the end! I’ve heard it’s the most joyous time of the event, and I need that kind of energy!
Today, one of my boys who is learning to drive, will drive me to Costco, to finish off some Holiday shopping for the party.
After this Christmas party, I will have (count them!) ten days to complete my own children’s Christmas shopping, so that I can have my surgery on the 16th, and be well by Christmas day.

I think I will be doing a lot of online shopping!
Either that, or I’ll again “just go fishing” and perhaps give everyone salmon for Christmas. Wouldn’t my kids just love that? I don’t think so!
Steelhead prediction: I think it’s going to flood by Friday, looking at the forecast.
I think we have a week off of fishing, here, but if my thoughts are correct, as it lowers, we are going to be into the steelhead! Plan on fishing week after this!
Get your Christmas shopping done this week! By week after this, we are going to be into the steel! The Kilchis is very low and clear right now. Almost worthless fishing, unless you like to hook old darkies. There may be a shot, depending on if we drop in between systems or if we catch a good day that is slightly on the rise. But my best bet is week after next… say Tuesday?

December 7th

May I quit ifish, now? I’m exhausted. Or, at least, a day off.
Last night at 9:00 PM, I sat in the emergency room of Emanuel Hospital, surrounded by several big white boxes of toys. Sally from Emanuel met our delivery team, and we unloaded the toys to take them to their final destination.
It hit me hard. Here comes the tears!
The tears were of joy mixed with sheer exhaustion. Look what ifish did!
At every stage of the day, I kept thinking, “OK, now the hard part is done, I will now enjoy myself and relax. That didn’t happen at noon. It didn’t happen at dinner time. It didn’t happen as the freight truck took off for the hospital. It finally happened in the emergency room. Tears of sheer exhaustion and final accomplishment overwhelmed me.
Today, I relax. Today, I can be satisfied that at the very least, children in the hospital will wake on Christmas Day and have lots of toys!
Many thanks go to all of the people who made this possible. Thank you all so much for attending, and sharing your love with so many.
It was another great year!
..and guess what? I didn’t forget anything! Only thing I had trouble with was remembering names, monikers and faces of so many giving people!

December 8th

Alright, so I’m strange. I just don’t know how to choose my emotions when I see all the dead salmon in the river, and laying half eaten and mutilated on the rocky shores. I find myself staring, trying to figure out how I feel.
Some are pointed up, statue like, laying in the sticks in the shallows. It’s haunting.
But, is it also a joyful thing? To see the end of the journey that they have fought so hard to complete?
Is it a sad thing? To see life end?
Or, is it just all simply amazing?
Day after day I walk by the river as more and more salmon collect. First, mostly chum. Now huge chinook salmon that I remember hooking, not too long ago in the summer in the bays, near the ocean. Shiny, chrome, full-of-life salmonids, fighting their way home. The energy they once had! I stop to remember my reel screaming, as they fought their way away from the boat! Zipping across the top water, their full force body slams that made me scream with excitement!
Now, the journey is over. Their rotting carcass litter the shores. Is this where I want to live? At the end of the road?
But–It’s simply amazing! All the way from Alaska? What a trip!
Flocks of seagull, accompanied by an occasional eagle, soar up river once a year for their own style of Thanksgiving. I never know if it’s the egg before the chicken or the chicken before the egg. Every year they show up, though, seemingly knowing it is time for the feast. Do they follow the salmon upriver visually, or do they come before, seasonally knowing that it’s time for heavy feeding?
Maybe I’m nuts. For some reason, I keep thinking of the bible verse that says, “He died so that we could have everlasting life.” I know it doesn’t really work, there, but I just keep hearing that.
When a salmon dies, their bodies feed so many creatures with rich nutrients. There is purpose in death. To start the lives of many new salmon, and to feed the river and the tall, tall trees that surround it. Every living thing around the river is fed by the death of a single salmon. The rich, lush sword ferns, the brightly lit purple flowers that line the bank in the springtime, and the life that lives in the river, itself. From a crawdad, to a small salmon fry.
The whole experience is spiritual to me. A cosmic mixture of joy, sadness, curiosity, amazement and fear. Yes, death of any kind rings a hollow fear in me. But, it all comes full circle, and the realization of the good it brings balances out… and it settles alright with me.
Yesterday afternoon I walked beside the river, and a haunting calm before the storm was present. A darkness fell over the water, and everything turned black and stormy and threatening. The wind swirled the currents backwards. I couldn’t see a single salmon carcass through the darkness of the storm cast and ruffled waters. This had been my last shot at witnessing the bulk of dead salmon that would feed the rivers this year.
As the winter rains set in and the full blast of a fifty mile per hour wind woke me in the middle of the night, I know to expect a clean river bank, soon.
Most of the salmon carcasses will be washed out to sea. A few of them, left high on the bank, as the water recedes.
They are left there, I believe, as a kind of haunting reminder that won’t let go. Spirits of the river, of the forest, forever. Their memories, hanging from the bushes in oddly colored strips sometimes, even as the rush of fresh steelhead arrive and breathe new life into my daily walks on the Kilchis river.

(Uh oh! Jennie had an aortic dissection and has been in the hospital for almost three weeks!!)

I did it! I wrote a column!!!!
December 24th

It’s beginning to look a lot like Christmas! Even around here! It’s mostly not of my doing. It’s like magic! I don’t know how to begin to thank people that have helped us during this awkward time. I even have Christmas cookies!
I had a very definite plan for when I got home. I remembered after my eye surgery when I was somewhat incapacitated, I spent hours, just sitting along the river. It was wonderful, and very healing.
Well, things are not quite the same this time around, and man oh man, am I having trouble adjusting. I have learned to pray to God on a constant basis. He has again become my closest and most relied on friend and companion. I am learning to walk again. Both as a dependent daughter of Christ, and as a human being, physically making my way from room to room! At times, it is so difficult, and I have so little energy, that I’ve found myself literally crying and crawling to get back somewhere.
My plan to immediately and ceaselessly visit the river has not come true. In fact, it wasn’t until yesterday that I even made it to visit the river. And no, I could not walk there. In fact, it was late in the afternoon, and my energy had nearly vanished for the day. Yet, my disappointment in putting this trip off drove me to accomplish my wish.
Bill packed the dogs in the car, threw in my portable duck seat, and off we went, through the yard.
Several times during this life changing event, I have been surprise attacked my bursts of emotions. This occasion was no different.
As the truck rolled to a stop on the high water tossed gravel bank, I opened my car door. A blast of salmon stench hit me in the cool, foggy darkness of afternoon.
All seemed so quiet!
“Hello river.” I sobbed, as waves of tears poured from my eyes and the sound of the river song welcomed me home.
This river is going to heal me. That’s what I heard peep out from the around the tops of the trees, and from under the smallest new agate that peered between my weak and shaky foothold.
Bill picked up my chair as I walked 6 feet and asked him to now set the chair, “here.”
New dead salmon were scattered along the creek beds, and huge agates lay untouched along the sand banks! Oh! Just wait until I can walk!
I had trouble controlling the flow of tears, but you know what? I didn’t care. Let them flow like the river…. I figure I bought and paid for each one of those tear drops, and it’s all part of the healing process to use them, to feel things, and to acknowledge each and every way there is to feel, whether sorry, grateful, sad, lost, scared… let me tell you, I’ve felt them all.
By the time we made it back into the garage, I had trouble with numbness in my feet, and I was unable to make it back into the house. I literally crawled up the back steps, and found my way to a kitchen chair. Now, that’s embarassing and humbling! Kilchis thought it was darn funny, though!
As I sat, though, and poured through thoughts of my visit to the river, I know I’d not put that trip off again, today. Of all of the feelings I felt, as I realized the river would come to heal me, the one that left me the most impressed was how darn glad I am to be alive.
Yes, life is a pain right now, and it’s tough, often disappointing, and very tiring. But, I’m going to make it, and I’m darn glad.
Glad, and very, very lucky to have a river to help to heal me.

December 27th

O.K., so I’ve been through a lot. Alright, so I was “under the knife” for 12 hours. I know, I know… My body is healing. They used a tile cutter to cut me apart. My heart was outside my body. I know this and more… that neither you nor I wanted to know, I’m certain!
Still, I’m very frustrated that I can’t walk very well. Very, very frustrated. I mean, I can walk. I just have literally no sustaining energy. Once around the kitchen. Once from the kitchen to the office. I sit down and it hurts so bad from exhaustion that I want to cry. I do think this is the feeling Jane Fonda describes in her exercise videos, regarding, “Make it burn!” Oh, Baby! It burns! I do not think this, however, is the duration of time she expects before it happens, and neither do I!
I sit in my upstairs bedroom and stare down at the river. Sometimes a boat will be anchored mid stream. Sometimes I see a heron. Rarely, an eagle. You have no idea the strong, loving connection I feel, here. I want to be there. I don’t want to just watch. I want to touch, feel, breathe, walk, experience, get my feet wet-my hands cold, BE THERE.
I will. With the desire and the passion for it to happen, this strong, it’s sure to happen, soon.
I’ll tell you all about what happened that fateful day, as well as I can recall. It’s all a bit of a blur to me, so I’ll have to write or call different onlookers, friends and family to fill in the times and dates more fully. It will be nice to make full sense of where two weeks have gone.
I remember getting my hair done that day. I remember fishing, afterwards. I didn’t catch anything, I don’t think. I don’t think I did anything very strenuous.
After an uneventful dinner, I put on a fresh, soft nightgown. I washed my face, and headed from the sink to the bed.
It was then that it happened. Pain shot across my jaw, so absolutely unmistakably that I had no doubt what was going on with me. Within 2 minutes, I said, “Bill, call 911.” His response of course, because it was so out of the blue, “What?”
“Yes, please call 911.” I was very calm. More so than I ever thought to be. I knew what was happening. I remember having Bill call the kids upstairs as I lay on the bed. I remember telling them I loved them, and that all would be OK. I knew that aortic dissections are most often not lived through, so I told them how much I loved them, etc. I was very, very calm. I remember that.
LOL. Later, I asked Andrew if he really thought I was sick. “I thought you were being dramatic.” You know, I can see how he’d think that! I would have wondered, myself.
But yes, I really was that sick, and to this day, the surgeons still have to look at me and say, “Jennie, this really happened to you, big time.”
My aorta burst, and it burst all the way down. The surgeons replaced the aortic root, ascending aorta, the arch and the top portion of the descending aorta. which were the most immediately life threatening parts of my dissection. He said at the time that they did as much as they could do, as much as he’s ever done on a Marfan syndrome patient. Part of his concern was that the coronary bypass have good blood flow, where they put in the graft from your leg.
They could not fix it all, and to this day, I am walking around with a full dissection, partially un repaired. That is a really weird feeling!
I’ll tell you more, next time. I have to do some questioning about times and places.
Until then, I remain fixed on the picture outside my window. The river. The river that will heal me…. If I could only get close enough to feel it’s magic.
I have never prayed harder for physical strength, and if you’d like to join me, I’d be more than thankful.

December 30th

Last night on television I was watching a moth work it’s way out of a cocoon. They stated that they could open the hole in the tip of the cocoon for the moth to escape more easily, but if they did, the moth would not be strong enough to make it on it’s own in the world.
So, here I sit, tediously and routinely trying to work my way out of this burdensome (and seemingly very heavy!) cocoon. It hurts to try and get out, but I bite my tongue against the pain, and continue my “progress.”
What progress? I keep asking Bill, the boys, anyone around me. “Am I different from two days ago? How? Are you sure?
“Oh, yes, Mom. When you first got home, you’d walk 5 feet, and then sit down to sob that it hurt.” Now you walk twice as far, and don’t whimper as much! You can make it up the stairs, and now you only rest at the top for 5 minutes. When you first came home, you’d nearly take a nap at the top!
Who said, “No pain, no gain?”
I’m thinking that this is what this is all about.
So, yesterday I was out for pain. As the pain hit, instead of giving in to it, I clenched my teeth, and walked past it. I walked past it to water just one more plant, or to feed the kitties their cat food. I tried to do “helpful things.” Oh, my, but it’s difficult for the Mother of the flock not to be helpful!
As I walked, I kept reciting, “still walking, still walking, still…..” and breathed through it. It worked!
However, today, I think I’m paying for that!
I get so darn sleepy. I can fall asleep at the drop of a hat. In fact, as I sit here, I fight the sleepies. I just want to sit down and nap, just for a second! Please!
My doctor said to me yesterday, “Jennie, as surgeries go, one being simple, and ten being extreme, you had a 10 plus. Be gentle with yourself.”
When I went to my surgeon the other day, I complained of the ‘numb cold feet thing’ and told him about my fevers, and he said, “Jennie, you tried to die on us on the table that night. We will work on your problems, but right now, let’s just be happy that we have a girl with cold numb feet to work on.”
You know, I remember times weaving in and out of anesthesia during the surgery, or after, when I thought and felt, “This isn’t worth it. This is too hard.” Plain and simple, I wanted to die. But, I remember the surgeons and nurses saying, “Jennie! I know this is hard, but this is the hard part! It’s easier from here on in!” They cheered me. I’m glad they did.
I have a goal for today, or tomorrow. I’m not sure which. yet. It depends on if I feel I should rest today, or push forward. It depends on my reserve of energy. I want to be recharged and rested for this one.
I have sat on my bed and stared down at the river for so long, now. I simply must make it out there. I stare at the river and sing,

When peace like a river attendeth my way,
When sorrows like sea billows roll,
Whatever my lot, Thou has taught me to say,
“It is well, it is well with my soul.

Bill has brought out the portable duck seat. It’s very, very light. I’m not going to wear hip boots, or boots at all. They are much too heavy. I’m going to put on light, well worn tennis shoes.
I am going to swing the duck chair over my shoulder ever so gently, and I am going to point myself in the direction of…. the river!
This way, I can rest when I am tired! If I make it down to the river in 8 hours, I’ll still make it, and OH! what reward there will be in that! I will not take a rod. I will take a camera, maybe, just to prove to you all that I can make it.
…and if I can not make it, I will not be upset. I simply have a goal, now, and someday, I will be able to make it!
Then, I can count my progress by how many rest breaks in the duck chair I need on my way.
I’m excited. I think I’ll take a shower, and try this. I don’t care if I make it 10 feet and tucker out. I love having something to work towards!
What a reward! The river! Yikes! It’s almost too good to be true! You know that when I get there, the water levels will be on the rise. There’s going to be some tears of joy coming out of this girl’s eyes!

—-

There is more after, at my journal website, here:
http://www.ifish.net/Jennie.php
The red “dec” crossed out in 2010 was when it happened.

Good luck and life to those that stand with me, alive.
Much love and sadness to those who don’t make it.
My 26 year old (Marfan) son Has passed on.

Jen

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Kathy Whalen’s Son-25

Name: Kathy Whalen
Email: kjojo55@att.net
Age at time of Dissection: 25
Type of Dissection: Ascending
Date of Aortic Dissection: 17 September 2009
Tell Us Your Story:

I t’s really my son’s story. He had severe chest pains eating pizza at Costco one day. Knew something was really wrong and went to the ER room. Thankfully the staff saw the seriousness of the situation and transferred him to a larger hospital.

Turned out, yes, he was having an aortic dissection and needed emergency surgery. They figured out he was suffering from Marfan’s Syndrome and this was one of the classic signs (Marfan’s). He is doing good, taking his medication and trying to get on with his life. I cry when I think how close I came to losing my baby boy.


Thanks to the Drs. at Santa Barbara Cottage Hospital I can talk to and hug my son everyday.

Thanks for stopping by to view our stories. Please help me keep the site going by shopping at Amazon.com-It’s very much appreciated. Brian Tinsley founder of AorticDissection.com (please book mark the link once you get to Amazon.com for future purchases!)

Denise Mannino-58

Name: Denise Mannino
Email: manninoarts@frontier.com
Age at time of Dissection: 58
Type of Dissection: Ascending
Date of Aortic Dissection: 9 April 2011
Tell Us Your Story:

Iwas in good shape, bicycle commuting to work regularly, doing yoga four times a week, and eating very conscientiously. (I’ve been a vegan for almost a decade, a vegetarian most of my life.) I almost went for a recreational bike ride on Saturday, April 9th, but I surely would have died. I felt slightly under-the-weather, kind of lacking energy – but nothing unusual.

After dinner, I was brushing my teeth when I had a sudden, intense pain across my upper chest. I also felt like I would black out if I didn’t get my head down because my blood pressure drop dramatically. I called out to my husband to call 9-1-1 because I thought I was having a heart attack. We live an exit away from a hospital, and the ambulance was here almost immediately. They took vitals, and got me over to Evergreen ER quickly.

Once I was at the hospital, they did an enzyme test which determined I was NOT having a heart attack. I had no sense of time passing, but my husband said it took awhile before they finally put me into the CAT scan, but once they did it, their whole MO stepped up dramatically. They start calling the area hospitals to find a team that could do the surgery, and they let me know I was in critical condition and would die without open heart surgery that night.

Fortunately, they found a cardiothoracic surgeon in the next community and he was available. They quickly transported me to Overlake Hospital in Bellevue, WA, where I was met by Dr. Bobby Binford and his team. I signed papers, said good-bye to one of my kids and husband, and I was whisked away to surgery.

I didn’t come out of my medically-induced coma till Tuesday, and it was easy to forget that I had gone through open heart surgery. Hearing someone tell me that just sounded like a bad dream, but I’d stir and feel the tubes and all the associated discomforts. My whole family, sister and husband from California where there, so I quickly remembered what had happened. Dr. Binford said it was the worst tear he’d ever repaired, about 5″ long, 2cm into the carotid artery. I was given transfusions after woke up, because of much blood lost. Finally, toward the end of Tuesday, I was moved out of ICU to the cardiac floor.

I was hospitalized for a week, out for a week, then Easter evening – April 24th, I had a TIA (transient ischemic attack) causing me to lose sight in my right eye. We ended up back in the ER, and then I was readmitted to Overlake as tests were done. They did an echocardiogram, ultrasound, xrays, and another CT scan. A vascular surgeon looked at the results and declared my vessels and arteries to be ‘pristine’. She couldn’t understand why I had an aortic dissection, though Dr. Binford said the walls of my aorta were ‘like butter’ – so I hoped to find out why this whole thing happened to me.

The vascular surgeon recommended blood thinners while my heart was healing, so I was brought up to a therapeutic dose of Heparin while I was on IVs. I’m on Coumadin for six months and have to have my INR monitored at the local anticoagulation clinic.

I’ve had lots of time to read articles on the web, and I have many Marfan features – but so far, no conclusive tests. I’m trying to strengthen my connective tissues with high doses of Vitamin C, l-lysine and l-proline – but will be interested to find some place to find out why my connective tissue has issues. Meantime, I’m on a three month break from work, basically trying to reclaim some normalcy by getting out and walking, doing lots of writing, painting, and generally reflecting on why I survived (and what I should be doing.)

Thanks for stopping by to view our stories. Please help me keep the site going by shopping at Amazon.com-It’s very much appreciated. Brian Tinsley founder of AorticDissection.com (please book mark the link once you get to Amazon.com for future purchases!)

MarfanDX.org New Website

Puts Marfan Syndrome Diagnosis Directly into the Hands of Physicians

(HealthNewsDigest.com) – PORT WASHINGTON, NY, — A new mobile site – www.MarfanDX.org – was launched today by the National Marfan Foundation (NMF), to facilitate diagnosis of Marfan syndrome and related disorders. The site content is based on the new diagnostic criteria for Marfan syndrome that were published in the Journal of Medical Genetics (J Med Genet 2010;47:476-485. The site is compatible with Droid and iPhone smartphones.

“The new mobile site is an innovative use of new technology for doctors who are concerned about the possibility of underlying Marfan syndrome or a related connective tissue disorder,” said Mary Roman, MD, Professor of Medicine, Weill Cornell Medical College, and a member of the NMF Board of Directors. “Marfan syndrome is a condition that has a varied expression and requires a multi-system clinical examination for diagnosis. The revised criteria simplified the complex process for diagnosis and provided insights into the diagnosis for conditions with overlapping features. The NMF’s new mobile site facilitates instantaneous access to diagnostic criteria for Marfan syndrome and provides diagnosis and management information for related disorders. This is a real benefit for busy doctors.”

Marfan syndrome and related disorders affect about 200,000 people in the U.S., but experts say that half of those affected are not diagnosed. Without a diagnosis and treatment, they are at risk of a sudden early death from a tear or rupture of their aorta. Related disorders, including Loeys Dietz syndrome, vascular Ehlers Danlos, mitral valve prolapse syndrome, familial aortic aneurysm and more, are outlined.

Features of the Mobile Site

According to a study conducted last year by Manhattan Research, a full 72 percent of U.S. physicians now use smartphones, and the number is expected to jump to more than 80 percent by 2012.

“With so many physicians utilizing smartphone technology,” says Dr. Roman, “it makes sense to provide a resource that is compatible with the latest trends.”

The mobile site features a summary of the new diagnostic criteria, including seven simple formulae for diagnosing Marfan syndrome. Expandable text provides a detailed explanation of each formula.

The site features:

* Interactive Systemic Score Calculator used to consider the lesser characteristics of Marfan syndrome throughout the body that can be key in making the diagnosis. This too has expandable text and graphics, as well as ability to email results for patient file.
* Interactive Z-score calculator, used to determine the size of the aorta compared to body surface area. This can also be emailed for the patient file.
* Key points about the role of genetic testing and family history.
* Important information on differential diagnosis and related disorders.
* Helpful links and resources.

The mobile site is also viewable on a desktop computer; it is compatible with Safari and Firefox browsers.

This mobile web site was supported by the CDC Cooperative Agreement Number 1H75DD000703-01. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention.

Revised Diagnostic Criteria for Marfan Syndrome

The revised diagnostic criteria for Marfan syndrome were developed by an international team of medical experts led by Bart Loeys, MD, Center for Medical Genetics, Ghent University Hospital, Ghent, Belgium. The purpose was to streamline the diagnostic process in order to provide patients with a more accurate diagnosis and better medical management.

“While diagnostic criteria should emphasize simplicity of use and the desire for early diagnosis, the highest priority in developing these guidelines was accuracy,” said Dr. Loeys.

Because connective tissue makes up the entire body, the disorder manifests itself in many body systems, including the skeletal system, eyes, lungs, blood vessels and heart. Many people with Marfan syndrome experience an expansion of the aorta. It is essential for affected people to be diagnosed and managed properly. Without proper monitoring and medications to reduce the stress on the aorta, affected people are at high risk for aortic dissection or rupture, which could result in sudden death. With an accurate diagnosis and proper medical treatment, they can live a normal lifespan.

The revised nosology provides a method for evaluating a patient by deriving a systemic score, with various features of Marfan syndrome assigned a numeric value; the diagnosis depends on the total systemic score. This is a change from the previous nosology which relied on evaluation of features as “major” or “minor.”

The scoring system reflects three significant changes in the way Marfan syndrome is diagnosed:

* The two cardinal features of Marfan syndrome – aortic root dilatation/dissection and ectopia lentis (dislocated lens of the eye) – are weighted more heavily than other characteristics.
* There is a more precise role for molecular testing.
* Less specific manifestations of Marfan syndrome are either removed or given much less weight in the evaluation process.

The diagnostic criteria have been defined for those with a family history of the condition and for those who may be a sporadic case; that is, they are the first in their family to be affected. Specific guidelines are also given for children (less than 20 years of age), with different scenarios proposed for those with family history and those without family history. For those who do not meet the diagnostic threshold for Marfan syndrome or a related condition, the nosology employs the diagnosis of “non-specific connective tissue disorder,” which fosters ongoing monitoring of the aortic size and function, until such a time when a specific diagnosis can be made.

The nosology also offers additional diagnostic considerations and recommends more testing if a patient has sufficient findings of Marfan syndrome but, additionally, shows other unexpected features. The differential diagnosis and management for alternative diagnoses, such as Loeys Dietz syndrome, vascular Ehlers Danlos, mitral valve prolapse syndrome, familial aortic aneurysm and more, are outlined.

The National Marfan Foundation

The National Marfan Foundation is a non-profit voluntary health organization dedicated to saving lives and improving the quality of life of individuals and families affected by the Marfan syndrome and related disorders. For more information on Marfan syndrome, call 800-8-MARFAN or log on to www.marfan.org.

Diego Roswell-37

Name: Diego Roswell
Email: elfsysop@yahoo.com
Age at time of Dissection: 37
Type of Dissection:Both Ascending and Descending
Date of Aortic Dissection: 2 March 1998
Tell Us Your Story:

Today is the 13th anniversary of my dissection. I am posting my story because I don’t know how much time I may have left.

March 2, 1998 I was getting ready for work when I felt a stabbing pain in my chest immediately followed by dizziness. Fortunately there was an old fashioned wall phone nearby that I grabbed on my way to the floor and dialed 911. The paramedics arrived quickly and I knew it was an aortic dissection since I had been diagnosed with the Marfan Syndrome and was in fact on an beta blocker at the time, my cardiologist had foretold of this day, and I just knew. Unfortunately I was also a recovering alcoholic/addict and had used a bit of methamphetamine the night before. I told the police and nurse about the illicit drugs so they could perhaps save my life – in retrospect, it was the biggest mistake of my life (second only to using the drugs in the first place). You see, I was a high school teacher at the time and had been given the substance by a student. I knew my career was over, but was more worried about the other kids that might OD from the drug if there was something wrong wit h it, you see I was lying there on the floor dying at the time. On arrival to the local public hospital, of course, no one knew what to do with me. I was delirious.

My wife came to the public hospital as the nurses and doctors were running around “looking for a surgeon” to “operate” on me. She got me out of there with a little help from my cardiologist and Dr. Craig Miller at Stanford Hospital – soon I was airborne on a helicopter (wow a helicopter ride and I can’t even remember it) to Stanford Hospital. It was like God had lined everything up for me. Dr. Miller ( a hard guy to get a hold of) was available to do my surgery (a very complicated one) my cardiologist was available to intervene at the public hospital – (or I would no doubt be dead).


The angels were with me that day and night as Dr. Miller needed to keep me in a comatose state and open me up several times to repair an ascending and descending aortic dissection. Aortic valve replacement surgery with arch replacement. Lots and lots of bleeding. I woke up a few times (I am told) and tore off IVs and was combative, despite having had open heart surgery. I was told that I had psychotic episodes and basically was freaking out after the surgery.

I woke up 21 days later to see a formerly 220 lb man standing in front of the mirror weighing 140 lbs and looking like a concentration camp survivor. I could walk, barely. The psychiatric staff wanted my wife to commit me to their psych ward.

I left the hospital AMA immediately.

13 years later, several hospitalizations later (for stroke, knee surgery, angiogram, colon ulcer blood infection, cerebral hemorrhage) I am still fighting the social security administration for disability benefits. I am due in court soon for the final decision.

Thank you Jesus for my life.

My advice to Marfan patients: take your beta blockers and do the suggested voluntary heart valve surgery, don’t wait for a dissection.

Contact

Thanks for stopping by to view our stories. Please help me keep the site going by shopping at Amazon.com-It’s very much appreciated. Brian Tinsley founder of AorticDissection.com (please book mark the link once you get to Amazon.com for future purchases!)

Amber Berg-28

Name: Amber Berg
Email: ambersinlove@yahoo.com
Age at time of Dissection: 28
Type of Dissection: Descending
Date of Aortic Dissection: 29 August 2010 Tell Us Your Story: I am a 28 year old Marfan’s patient in Denver Colorado and on August 29, 2010 I was 6 days post postpartum (my 2nd daughter was born via scheduled c-section on August 23, 2010). I had been advised against giving birth to a second child due to the dangers and risks with Marfan’s…of course, I didn’t listen…

My husband had just cooked a late dinner and I was sitting on the couch eating. I started feeling an odd pain between my shoulder blades, not on my back, and not on my chest. It literally felt like it was in the middle. I kept telling my husband that I felt weird and I had never had that feeling before. All of a sudden the pain shot down my back, it felt like someone was stabbing me from the inside. The pain was so intense that it took my breath away. it came in waves and was so scary. We packed up our 3 year old and our 6 day old and headed to downtown Denver to the Emergency Room. Luckily, one of the doctors that was working new a little bit about Marfan’s.

I told them that I was 6 days post postpartum, I already have a dilated aortic root (4.3 cm) and I had Marfan’s. He immediately gave me some pain meds through an IV and ordered a CT Scan. After my scan, he broke the news to me. My descending aorta had dissected. I called my parents from the hospital and told them, they raced to be at my side. Marfan’s is very present on my dad’s side of the family and both my grandfather and my auntie passed away when they had their aortic dissections. I remember them wheeling me up to the ICU and I don’t remember the next 17 days.


I was in the hospital for 20 days, I remember the last 3 days and have been told that it’s better I don’t remember the 17 earlier days. The vascular surgeons were about 5 minutes away from sending me to Houston Texas for Dr. Joseph Cosseli to perform surgery when he had suggested that they try to use medication to control my dissection first. While in the hospital I have been told that I “Freaked out” and was ripping tubes out of myself and pretty much going crazy, I don’t remember any of that. My dad did tell me that he was advised by Dr. Cosseli that this “freak out” was very common among dissection patients and that no one has been able to figure out why it happens. I have been home now since September 17, 2010 and am terrified everyday that something bad is going to happen.

I continue to have extreme pain in between my shoulder blades, not the same pain that I had that dreadful night, but severe and extreme pains. I am on a TON of blood pressure medication, take my blood pressure twice a day and send my numbers to my cardiologist once per week. On Monday October 18th I have a CT Scan schedule and then I meet with the vascular surgeon’s and my cardiologist shortly after. I pray that everything is OK and healing correctly, but I am very anxious about my appointments. I am hoping that I will not have this continuing pain for the rest of my life and that it is not a sign that something is wrong.

Eventually I will have to have 2 surgeries. One to replace my aortic root and one to replace my descending aorta. Now that I have kids and a family I am very worried about these surgeries and am overcome at times with an extreme feeling of guilt. I don’t want to leave this earth without seeing my girls grow up and I don’t want to leave my husband as a single father. Finding this website offered a bit of relief. To read other stories similar to mine and to see that I am not the only one with these feelings.

Has anyone else continued to have pain after their dissection?

Thanks for taking the time to read my story.

Amber Berg

Denver, Colorado

Thanks for stopping by to view our stories. Please help me keep the site going by shopping at Amazon.com-It’s very much appreciated. Brian Tinsley founder of AorticDissection.com (please book mark the link once you get to Amazon.com for future purchases!)

Health News – New Diagnostic Criteria for Marfan Syndrome

Health News – New Diagnostic Criteria for Marfan Syndrome
from Google Alerts – aortic dissection news
Without proper monitoring and medications to reduce the stress on the aorta, affected people are at high risk for aortic dissection or rupture, which could result in sudden death. With an accurate diagnosis and proper medical treatment, …
Health News from HealthCanal.com – http://www.healthcanal.com/

External aortic support for people with Marfan’s syndrome

I found this article this morning while searching my Google Reader. Although, I personally don’t have Marfan’s Syndrome, the “commonality” is that this type of connective tissue disorder leads to many folks suffering from aortic dissections. So, it’s imperative to get this bit of good news out and increase everyone’s knowledge of hopeful progress being made.

Article source:
Camilla Allen, patient1, John Pepper, professor of cardiothoracic surgery2

1 Thornbury, Bristol , 2 Imperial College, Royal Brompton Hospital, London SW3 6NP

Correspondence to: C Allen allen@vilberie.wanadoo.co.uk

In 2007 Camilla Allen became the ninth person with Marfan’s syndrome to have an external aortic root support wrapped around her dilated aorta. She has since become the first woman with an exostent to become pregnant and give birth.

The first 150 words of the full text of this article appear below.

In October 2006 I agreed to take part in research related to Marfan’s syndrome being undertaken at St George’s Hospital in London. The research involved detailed measurements of my heart being taken using echocardiograms. I did not give my participation a second thought until a couple of months later when I received a letter from St George’s telling me that my aortic root diameter had expanded to 4.3 cm and that with such a dilated aorta I should not conceive a child due to the risk of fatal aortic dissection. This news was a devastating blow to my husband and me as we had been trying to conceive our second child for the previous nine months.

An appointment with my local cardiology consultant was hastily arranged for January 2007. The measurement was confirmed, and, although it was not particularly worrying in itself, as most patients undertaking root and valve replacement . . . [Full text of this article]

Thanks,

Brian Tinsley

Marfan News

Google News Alert for: Marfan syndrome or Aortic Dissection
New Guidelines Aim to Prevent Unnecessary Death From Thoracic  … DG News … genetic conditions that weaken connective tissue, such as Marfan syndrome. … The symptoms of acute aortic dissection, which can mimic those of a … Google News Alert for: Marfan syndrome or Aortic Dissection
New guidelines aim to prevent unnecessary death from thoracic … EurekAlert (press release) In the case of aortic dissection, a tear in the inner lining of the aorta … genetic conditions that weaken connective tissue, such as Marfan syndrome. …
Subject: Segment on CBS Early Show on Wednesday, March 17th

Great News! Our media outreach efforts at the American College of Cardiology Scientific Sessions are paying off!

We have just found out that Amy Yasbeck (wife of the late John Ritter) is scheduled to appear on CBS’s The Early Show tomorrow morning during the 7:30 half-hour. It is anticipated that she will talk about the TAD Coalition (www.tadcoalition.org), the new AHA/ACC Guidelines for Diagnosis and Management of Patients with Thoracic Aortic Disease, and the new Ritter Rules, which include Marfan syndrome as one of the genetic risk factors that increase the risk of aortic dissection.

Check your local listings for your CBS affiliate and tune in!

Thanks!

____________________
Jonathan D. Martin, MS
Director of Education and Public Awareness
National Marfan Foundation
22 Manhasset Avenue
Port Washington, NY 11050
(516) 883-8712 x. 16

Google News Alert for: Marfan syndrome or Aortic Dissection
Source: Developed in Collaboration With the American College of ..Cardiosource Annual imaging is recommended for patients with Marfan syndrome and if stability … Initial management of thoracic aortic dissection should be directed at …
Thanks, Brian Tinsley

Vanderbilt Children’s Studies Marfan Syndrome

This came in on my Google Aortic Related news feed this morning:

Research Conducted Through Pediatric Heart Network

With its participation in a study concerning a cardiac side effect of the rare disorder known as Marfan syndrome, Vanderbilt Children’s Hospital is a member of an elite club, the Pediatric Heart Network.
Founded in 2001 and funded by the National Heart, Lung and Blood Institute (a unit of the National Institutes of Health), the PHN is a group of hospitals dedicated to research studies in children with congenital and acquired heart disease. In the past 25 years, fewer than 40 randomized clinical trials have been conducted in pediatric patients, leaving clinicians frustrated by a lack of evidence-based medicine in their field.  Read more……
Have a great day!
Brian

Marfan’s Syndrome Information

-Marfan’s Syndrome
      Definition
      Diagram
      Marfan.org
      Stanford Clinic
      The Canadian Marfan Association
      Marfan World
      The Children’s Heart Institute
      Marfan Life.org
      A personal site-Jon
      Australian Marfan Website
      Turner Syndrome
            Puget Sound Turner Syndrome Society
      Cozaar
            Blood Pressure Meds May Help

Thanks,

Brian

Earl Hamm-50

Personal Stories: Earl Hamm

I was was repairing a septic tank on Dec. 30th when I started feeling like something was not right. I went home for lunch, and then went back to work for a few hours, even though I felt like had been drug through a knothole backwards. I continued my regular routine that evening, and worked at a local church, making and carrying boxes of food to distribute to the needy, but I finally felt so awful that I had to go sit down for a while. That night my blood pressure would spike to over 212/120 and then go back down on its own.

The next morning I still felt awful, and since I have Marfan Syndrome, and have already had two aneurysms with dissections, my wife called the cardiologist. He was out of town, and the only one who could see me was the nurse-practitioner. She took my vitals, and listened to my heart and told us that she felt it was just a strained chest muscle, since I had been doing some shoveling. We told her that we wanted a CT scan, and she finally agreed to it if it would make us feel better.  She also agreed to get some blood work drawn.

It took us a couple of hours of walking to different parts of the hospital to do the tests. After the CT, we went back to the Nurse Practitioner. Immediately she asked us to sit down and brought in one of the Cardiologists that worked in the same office. She said I had a dissection that included the entire aortic arch and running the entire length of my back. She said to sit still; the paramedics were on their way. Immediately after bringing the gurney to the room, they carefully transported me to St. Lukes Hospital, in Boise, ID.


The surgeon met with us right away, and started me on IV meds to try to get my blood pressure under control, and to thicken up my blood for surgery. I was in no real pain, just felt icky. The plan was to keep the pressure low for a week or more while the dissection healed and to then replace it with a graft. By the next day, though, the dissection was progressing into the great vessels that feed the brain and I was starting to hurt badly. They did surgery the next morning. After more than 10 hours, the surgeon came to the waiting room, took the family to the conference room to tell them that I was not going to survive the surgery. He said my aneurysm and dissection was humongous, the tissue was like wet paper to sew to, and I had hemorrhaged greatly. I had been on ice off the bypass machine for over 99 minutes without circulation, and they felt that there was just not much chance of recovery, and if I made it, there would be paralysis and brain damage. The surgeon went back to the operating room where his assistant was still working on me. The family was devastated, of course.

About an hour later, the surgeon returned to the conference room and informed my family that I had rallied and might just pull through. He had replaced my entire aortic arch, but could not repair the remaining dissection running the length of my backbone.

It was a long, hard recovery, with 14 days in the ICU, a thoracentisis, a paralyzed vocal cord, and two more hospitalizations or complications. I am now feeling almost back to normal now. I suffered no paralysis besides my vocal cord, and my voice is starting to come back. Even though I suffered from a depression, there is no discernible brain damage either. My remaining dissection is stable for now, so I may not need surgery for quite some time. God has truly blessed me and my family.

Earl Hamm

hammclann@msn.com

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