Category: Forties Page 1 of 2

Jeffrey Randa-48

Name: Jeffrey Randa
Age at time of Dissection: 48
Type of Dissection: Both Ascending and Descending
Date of Aortic Dissection:  8 December 2011
Tell Us Your Story:

[dropcap]T[/dropcap]his is a follow up to my first post about 6 years ago.  Re-reading it, I am humbled by how humbled I was as I wrote it, and reminded of how lucky it is to survive this trauma.  I am glad to report that my life has almost entirely returned to normal over the last 6 years, despite the severity of my dissection.

Bit by bit, over the years, I have returned to weightlifting, although I have learned to do it much differently than before (no “Valsalva” maneuver), taking the time to breathe through every rep. My cardio conditioning is fair to good, meaning better than average for my age, but probably not as good as it should be given my AD; I’m working on it.

And that’s really the point of my post.  It seems that many people find this site soon after they have surgery.  I was wounded when I made my first submission, and even my typing suffered as I wrote it.  I thought I’d never be strong again and that I was going to forever be hobbled.

When I finally did make it back to my weight bench, the 45 pound bar felt like a ton.  I’m not out to get huge or lift tons of weight anymore, and even now, as I age, I’ve backed off a bit, but a few years ago I was able to dead lift 350 lbs and breathe through it rather easily.

At one point, my cardio conditioning was much better (that tends to go in cycles) and I could run a few miles without killing myself.  I can still outrun and outlast almost anyone my age. 

As I recovered from my surgery, I thought I would be frail and weak forever.  That’s not necessarily the case, and you MUST make the best of what you have.  Never give up, quit or otherwise surrender.  Fight to be the fittest and strongest you
 can.  Nothing good will come from just sitting, or, worse yet, just sitting and eating all the wrong foods.

I do think it’s important to take one’s time, but also to work at becoming fit.  Walk.  Walk a lot.  Do some strength training.  Eat well and enjoy life, but do it intelligently (everything in moderation (including moderation) remember?). 

As I sit here now, I cannot think of any limitations that my AD has imposed on my life or lifestyle.  I think one should live fully, albeit mindfully, at that.

In the early days of my recovery, I was taking every day as a gift. I sometimes lose sight of that now, at least for a bit, but then I remind myself how lucky I am to be here, how easy it is to be gone, and the wisdom of the old adage, “Don’t sweat the small stuff because it’s all small stuff.”

Carry on, my friends.  Remember, the best revenge is to live well…

Romney Mawhorter-48

Name: Romney Mawhorter
Age at time of Dissection: 48
Type of Dissection: Both Ascending and Descending
Date of Aortic Dissection: 7 November 2014
Tell Us Your Story: I was a 48 year old white man who had an aortic dissection deBakey I or Stanford type A who was very physically fit; a college track star and since then an avid gym rat going 6 days a week to lift weights and play basketball up to the day of my surgery. I have a wife of 23 (then 21) years and 3 sons who then were 18, 15 and 11.

Iam from Los Angeles. My wife and I were on a romantic weekend on Catalina Island. We had just taken a 2 hour boat ride from Long Beach and got off the boat and went directly to our hotel to check in. They said the room was not ready so we sat in the outdoor lounge overlooking the beach to have lunch.

After only a few minutes I felt a terrible crushing pain in my chest. It was so bad that immediately I told my wife, “I think I’m having a heart attack!” and proceeded to lay down. My wife described my “laying down” as passing out but I never lost consciousness.

I was helped by the couple at the next table who held my head up to help me breathe, stopped others from pounding on my chest, giving me water, or giving me an aspirin. They calmly told others to call 911 and waited with me until the paramedics arrived.

I was in the paramedics’ care for about 20 minutes with my wife waiting anxiously outside. They were testing me for a heart attack but could find no enzymes or other signals that it was a heart attack. I was unresponsive to glycerine.

At the small local island hospital, the doctor there was calling everyone she knew to help her diagnose what this incredible pain was coming from my chest. Finally she called my surgeon’s “aortic dissection hotline” which instructed her to perform a CT scan. When it was done, immediately the doctor could see I had “two” aortas running the length of where I should have one aorta.

This was a severe dissection from the aortic root to the legs including the left coronary artery and both carotid arteries all the way to the brain. A helicopter was scheduled to fly me to Keck USC Hospital.

On the roof being taken off the helicopter I could see the doctors running to receive me, and for a moment I juxtaposed my memory of the movie “A Few Good Men” when they astronauts came out of the elevator.

While on the gurney in the ICU the doctor was explaining to me all the risks of the surgery, as I still was a little confused as to what was wrong with me. I had survived now with this level 12 pain on a scale of 1-10 for the past 5 hours maybe this would just “go away.” So I interrupted the doctor and said, “can I live without the surgery?” He promptly replied, “no, this is a fatal event.” So I replied quickly, “then stop telling me about the risks and start the surgery!”

After 8 hours my wife was relieved to see the surgeon come out of the elevator and sit down next to her and said to her, “he’s going to be alright.” I remained in ICU for 3 days and released from the hospital in 7. He said my aortic dissection was the worst he had seen on a surviving patient. Immediately after opening my chest, my ascending aorta disintegrated as if it were wet tissue paper. After several minutes trying to determine some real tissue where to attach the prosthetic mesh, the assisting doctors and attendants said it was no use that I was beyond repair. But my surgeon persevered. He did have to forgo removing my aortic root and replacing my aortic valve with a mechanical valve (which I had elected) to save the time in surgery to “fix what was broken and save your life.” So I continue to be on the “probable” list of needing that surgery in the near future

Since then my health has been good, with the only ongoing complications are from my left carotid artery which has the most severe tear all the way to my brain, which slows my blood and causes some ocular muscle problems and once a stroke symptom (but no evidence of stroke found in any CT or MRI scans).

From this ordeal I learned that I must care what I eat. I must eat a low sodium, low red meat, high fiber diet and drink at least 4 8 oz. glasses of water, or better 8 glasses. The thinner my blood the better. While I do take a BP medicine, I only take it when my morning BP reading is above 120. My “normal” BP is 110. My dissection was not caused by hypertension. Doctor says it was congenital.

Jennie Logsdon martin age 44

Name: Jennie Logsdon martin
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.
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:
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.


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Age at time of Dissection: 47
Type of Dissection: Both Ascending and Descending
Date of Aortic Dissection: 6 July 2012
Tell Us Your Story:

I am a wife and mother of two boys. On July 6, 2012 I woke up with a radiating stabbing pain and thought I was having a heart attack. I have suffered with acute hypertension most of my life and was on medication at the time. I was rushed to the local emergency room and thank God the emergency room doctor ordered a sonogram. I was then told to get my family members to the er.

To make a long story short, I was experiencing an aortic dissection from the top to almost the bottom of my aorta. I was then put on a helicopter and flown to the University of Pennsylvania. After about two weeks there, I was sent home. A week later my blood pressure was still out of control and I was once again flown to the University of Pennsylvania.

Two surgeries were performed. Corodic bypass and the next day my aorta was coiled inside. I have to see a cardiologist every three months for the rest of my life, however long that may be. I currently have no medical insuranc e and have been denied disability by the State of NJ and am now on appeal.

I need information to make the Department of Disability realize that I am not “fixed” and how serious of a condition this is. I do not feel sorry for myself and rarely mention my condition to people. I try to live each day like its my last. I was told by my surgeons to “change my lifestyle” and absolutely “no stress”. Can you help with info.

Ken Johnson-49

Name: ken johnson
Age at time of Dissection: 49
Type of Dissection: Both Ascending and Descending
Date of Aortic Dissection: 1 March 2015
Tell Us Your Story:

I was walking thru a parking lot when i had a pain in my chest that went thru to my back, i went to the hospital they sent me to a larger city by ambulance for ct scan, 7 hours later i had the scan and was immediately flown to Calgary, had emergency surgery (12 hours) resulting in spinal cord ischemia. prior to this event 7 month earlier i had been electrocuted with 6000 volts 3 time before being blown off.

Has anybody ever heard of electrical injury weakening the aorta to result in a delayed rupture.thank you for any feedback.

Abbas R-42

Name: Abbas R
Age at time of Dissection: 42
Type of Dissection: Both Ascending and Descending
Date of Aortic Dissection: 14 December 2014
Tell Us Your Story:

I was having a very pleasant flight till the The Worst Pain Known To Mankind hit me. I of course had no idea whatsoever what was really happening to me, and dismissed it seriously bad gas and/or indigestion. I had never suffered gas or indigestion as bad as this before, so the sneaking suspicion that something was very wrong continued to linger in my mind. The first thing I did was stand up, because I felt I needed air, and went to the back of the plane where the serving galley was. There I paced gently and tried to breathe deeply, and actually felt better as a result. We were still about 30 minutes from landing, and now I felt like I needed to lie down. I went to the restroom and improvised a bed, putting the toilet seat down and opening the baby change shelf so I could put my feet on it.

And I just lay there for about 20 minutes or so, and kept breathing slowly and deeply. Years of meditation really came to help at this point. When the pilot announced the plane’s landing, I walked slowly back to my seat, feeling much better thankfully. The plane landed in Dubai and I walked out of the plane and into the terminal eventually where I sat down again before immigration, and had a drink of water. When I went to stand in line at immigration, it hit again, That awful, terrible pain and the sweaty, sinking feeling. This time I knew I needed help. There were only 2 people ahead of me at immigration, and my turn came quickly, and before I knew it I was headed into the baggage claim area. That is where I collapsed, and summoned some airport staff over to me. They were fantastic, because within 2 minutes there were paramedics at my side, and in under 10 minutes I was on a stretcher on the way to an ambulance waiting outside.

I was passing in and out of consciousness on the way to the airport, but I think we reached there in under 10 minutes. Then I passed out till I was medically woken up ( i think) and found a grim-faced panel of doctors standing at my bedside. I was told then I had suffered a ruptured ascending aortic aneurysm, and a dissection all the way from the descending aorta down to the femoral branches. They gave me some statistics on how I had beaten the odds to be alive at this point, and that only surgery can give me another chance at living, no other options. I had to give consent, and I have no time to think about it, they said. Well… pretty cut and dry eh? So I signed off on it, and being given the survival stats etc, felt quite upbeat strangely. I remember saying “Lets do this!”, all gung ho about it.

Twelve hours later, I was wheeled out of the operating theater, still unconscious, on heavy sedation. I had received an aortic graft in the ascending aorta, and endovascular stenting in the thoracic and descending aorta. Over the next few days, I am told there were complications. My heart was not beating properly, my kidneys had shut down completely from shock, and there was a lot of fluid collection in my lungs. The few days were critical, but thankfully I survived. Had to get a few electric shocks (though I don’t know the logic of this straight after open heart surgery! Probably the only way to get it done….), and I was on dialysis for those few days as well. The heart started beating normally, and my kidneys came back online as well. I stayed in the ICU for 3 weeks, during which about a liter of fluid was drained from each lung. The first couple of weeks after surgery, I was also in quiet delirium as a result of post-surgical sedation. I can’t even begin to describe the
hallucinations I was having – they were so fantastically crazy.

After spending a few days in the ward post-ICU, I was discharged and went home for a more relaxed recovery (the ICU is a noisy, disturbing place, despite what ICU stands for…). It took my chest wounds and sternum about 2.5 months to heal. At first I wasn’t even able to sleep comfortably, as I felt I was unable to breathe while lying down. But eventually as the would and bone healed, it got better over the first week. I still felt those pings and twangs of awkward pain while moving around in my chest, but one day after about 2.5 months it suddenly went away. My chest felt absolutely normal. I had to re-learn how to walk, as I could barely get out of bed to even stand up in the hospital. It felt like I was dragging or balancing a ton of bricks on myself. This was probably due to the excessive sedation I needed in the week post-surgery. Upon discharge, I was able to walk, but just barely, and I would get winded after walking about 20-30 ft only.

But I kept trying, and slowly was able to build up my strength and balance over the next few months. I was walking a mile non-stop by about week 8 post-surgery. I then started doing stretches as prescribed by my cardiologist which helped tremendously with the back and shoulder pain and stiffness, which is to be expected.

Its now about 8 months after the surgery. I’ve started light weights and light cardio and walking is upto 5-6 miles without a break. I feel good. And I am thankful. It’s amazing what technological development has done for the medical industry.

Tammie Purcell-40

Name: Tammie Purcell
Age at time of Dissection: 40
Type of Dissection: Both Ascending and Descending
Date of Aortic Dissection: 27 August 2011
Tell Us Your Story:

I experienced a Type A aortic dissection in the 9th month of my pregnancy in August of 2011. MANY people were involved in an emergency caesarian, life flight and open-heart surgery all within the span of 12 hours.

My story can be read on the following link

The story was published in the local newspaper in Akron, Ohio on Christmas Day, 2011. They also produced a piece on the television news on Mother’s Day weekend the following spring. You could probably still watch that online, too, though I don’t know how to find the link.

I do want to say, the experience I went through was life-changing, humbling, frightening and wonderful all at the same time. I believe my survival was miraculous. The fact that I was able to give birth to a healthy son and can now raise him, with both of us healthy and strong is a testimony to God’s saving grace and to the skills and dedication of dozens of doctors, nurses, surgeons, paramedics and other medical personnel at both Akron City Hospital and the Cleveland Clinic.

Cheryl Devine-41

Name: Cheryl Devine
Age at time of Dissection: 41
Type of Dissection: Both Ascending and Descending
Date of Aortic Dissection: 19 November 2009
Tell Us Your Story:

After my daily gym workout, I returned home to prepare for bed & work the next day to feel a burning sensation in my chest, rapidly creeping up my neck. I assumed it was acid reflux which I had never experienced before so I wasn’t sure exactly. I phone a friend.

She decided to call 911 and I was transported by EMT to the local ER. The ER Doctor ran a CT Scan and immediately ordered a life flight helicopter ride to the Cleveland Clinic Foundation to have open surgery for Type A dissection. Survival was 10% and rapidly declining and had just minutes to get started. After 13 hours of surgery I’m here to tell about it.

In my 5th week of recovery i experienced Type B dissection, a 2nd life flight and ICU since surgery was out of the question. Now after 5 years they are still managing the Type B dissection with meds but the dissection is growing larger. They are closely watching it. I have found little support for how to cope, exercise, and live normally without difficulties.

Bob McNaus-45

Name: Bob McManus
Age at time of Dissection: 45
Type of Dissection: Both Ascending and Descending
Date of Aortic Dissection: 4 April 2012
Tell Us Your Story:

My Descending Aortic Dissection / Aneurysm occurred on April 4, 2012.
Prior to the “episode” I had been experiencing moderate discomfort between my shoulder blades when I exerted myself. I chalked it up to a pulled muscle since we had just completed a move to a new house.

The week of I had traveled to our company’s manufacturing site in south central Georgia. For a couple of days my shoulder was bothering me, but on April 4th it was really uncomfortable. Around 1pm I told my co-worker that I was going to the hotel to take some aspirin and a hot shower to see if I could get some relief – which is exactly what happened – after the shower I was pain free. That evening we were visiting with co-workers when I was hit with the most excruciating pain that started in my lower back and soon had spread to my chest, upper back and abdomen. The pain in my chest was so severe that I could barely catch my breath let alone communicate.

As fate would have it, one of our co-worker’s wife was a cardiac nurse so after looking at me for about two seconds they loaded me in the truck and sped off to the ER.
The docs at the ER were great and got me out of pain and then informed me that I had a dissection and needed to be life-flighted. I could either go to Gainesville or Atlanta, I asked my co-workers wife where she would go and we choose Shands in Gainesville. The hospital informed my wife that I had a dissection and was being airlifted to Shands – oh and you need to get there because he will probably die – nice.

My last strong memory is of the helicopter taking off – everything from that point on is a blur. Apparently while en-route my BP was spiking up to 225/175 and the helicopter crew got permission to give me meds and some sedation. Once I arrived at Shands the “Team” got to work. I was given some meds for BP, the tear and pretty heavily sedated. Apparently on my second night there my oxygen levels had dropped due to pneumonia and the nurse asked me if it was OK to intibate – sure whatever you want must have been my answer because the tube went in and the battle to keep me from pulling it out began.

Eventually my oxygen levels came back up and they removed the tube. My lungs began to clear up and then one day a priest was at my bed to offer a blessing for my surgery the next day – news to me, I guess I should tell Jennifer when she comes back from lunch. She comes back and I tell her and she thinks I’ve been hallucinating again, like the time she sat down in the chair next to the bed and I told her she just sat on our dog. During this time I was pretty much sedated and whatever the drug was it gave me horrible nightmares. I mean just the craziest, scariest stuff. It was during one of the dreams that I tried to get out of bed, fell and cracked my head on a chair but thankfully no stitches.

The surgery Dr. Beaver and Dr. Beck did was a success, stent inserted into Aorta, no damage to the valve. Spent some additional time in ICU and the to a step-down ward where I had to kind of learn to walk again and then finally home. 30 days in the hospital and 90% of that in ICU. I couldn’t believe how weak I had become, walking from the bedroom to the family room was a workout. Slowly though things started to get better until Memorial Day weekend.

The weekend came upon us and my back was bothering me. I thought it was a pulled muscle and didn’t pay it any mind until the pain became sharp. Took a trip to the ER and the CT revealed that the stent was pushing against the Aorta wall. Back in the helicopter for another ride to Shands, arrived and was in surgery within the hour. They had to insert another stent to get it around a curvature of the Aorta. I guess the big concern was paralysis which didn’t occur but my right small toe is numb – I’ll take that trade.

This time when I got home recovery seemed to be a lot harder. It took a long time but after 18 months I feel pretty good. I walk a lot, even do some running. Doctor told me not lifting over 50 lbs for the rest of my life which isn’t that big of deal. It was a rough little haul but I think I’m going to come out of it OK.

Even though I was the one with the medical condition, I spent most of my time in limbo land while my wife had to deal life. She was the one that the doctors would say, “his kidneys are not performing very well, I hope we don’t have to do dialysis” or ” the sedatives are very strong and we are worried about ICU psychosis”, etc. She was also the one that had to handle all the details for follow-on doctors appointments and meds to take since my brain was scrambled for a good while after getting home.
The folks at Shands Gainesville, and Jax Beach Baptist were wonderful professionals. Their care and expertise is one of the reasons I’m here today.

Timo Söderlund-48

Name: Timo Söderlund
Age at time of Dissection: 48
Type of Dissection: Both Ascending and Descending
Date of Aortic Dissection: 1 October 2012
Tell Us Your Story:

Having worked as CEO in companies in need of financial turnaround and as manager in projects concerning change management, my life has included a high level of blood pressure. Now, i can only regret that i did not visit doctors more often and that i did not put health more as an priority until i got ill.

Monday 1 October 2012, i rose from bed around 05:00 in the morning and by 05:30 i was sitting by the computer handling mails and making payments on line. As usual i had a large cup of coffee, and a fair amount of “snuff” under my upper lip. (snuff is grined tobacco that is fairly common to use in Sweden, while smoking is not so popular any more).

At 07:30 i got ready to drive to work. This day a lite bit more tense than the last weeks. After a few months of discussion i had agreed to once again take on a heavy management duty where operations on the field was more important than thinking out strategies by a desk. And this morning would be the first day in office taking responsibility of around 400 employees, 4 production units in 3 countries in Europe, and a fair amount of turnover and profit. Already in the car i felt that the tension was unusually high this morning.

At 08:00 i picked up my first cup of coffee, walked through the office landscapes, and paid the personnel department a short visit. At 08:30 i was sitting in the office of one of the groups senior executives discussing the trip he had made with his wife the previous week. During the discussion i was going over the plan for that day in my head, probably for the 10:th time since i rose this morning. I reached over the table to get hold of my cup of coffee, and doing so something broke in my chest. I got afraid, and did not know what to do – so i rose and excused my self and sid i had to go to the bathroom. Stepping out from the office i realized i was in serious problems and probably was going to die. The pain in the chest was a cutting pain, and both my kidneys and throat was hurting very much at the same time. I stumbled in through the next office door, and asked the lady sitting there to call an ambulance, and sat down on a chair.

I arrived in the local hospital with ambulance around 09:10. There the doctors in the emergency room started to look for what was wrong. It took over 6 hours of EEG and a lot of doctors scratching their heads, before a cardiologist decided to make a CT-scan and an ultrasound control of the heart. After that all changed. All personnel become very worried and i was told that my condition was critical, and i was sent with ambulance to the nearest university hospital 60 kilometers away for surgery at 15:30. I had AADA (acute aortic dissection type A) and the travel in the ambulance went on very high speed with sirens on the whole trip. I had time to think through my life and also to accept that this could be the day when my life was coming to an end. But it was not. I woke from surgery the next evening. Beside fixing the type A dissection, the surgeons also had repaired my heart valves biologically. 12 days in hospital followed and then i was sent home. 2 week later i was back since
i now also had AVB (atrioventricular block) probably as an result of the main surgery, and now had a pacemaker put in.

I am now 10 and a half months past surgery, and i have recovered in a very good way. I am not working, and will probably never work again. I go 3 days a week for training i my local hospital. I eat nine different medicines on daily basis, and they make me fell good but tired. We have got a dog 7 months ago, and i go for a walk in the woods every day. In the beginning it was a few hundred meters, now it can be 4-5 kilomters each day. The pace in though low, around 3 km/hour, probably due to the medicines.

There are most probably a lot of spelling errors in this text. This and also problems with my short term memory are a few of the side effects from the surgery where a heart-lung machine was used and a temperature drop to 20 deg Celsius was part of the procedure.

What had helped me a lot is that i have been blessed with therapy in addition to medications and physical training. Having had help to learn to cope with the fear of not knowing anything about the future, and accepting that life is now on a daily basis, i had not handled without solid professional help. This has made it possible for me to go on without medication handling anxiety. Another important factor has been that with help of the hospital we have formed a group of 7 people in Sweden and Denmark on facebook, who all have suffered from AD. This has also been very comforting when we all have found out that we almost all share the same fears. And talking about it with someone who is in the same situation is really comforting.

Well this is my story. I can also say that i love life in a more direct way now. I thank God each day for both family, friends and the nature that we live in. All that before was so normal, i now do not take for granted any more. I fell blessed to be alive and thankful for all the help i have received.

Paul Maiden-44

Name: Paul Maiden
Age at time of Dissection: 44
Type of Dissection: Both Ascending and Descending
Date of Aortic Dissection: 16 August 2012
Tell Us Your Story:

At around 9.30pm on the 15th August 2012 my husband came into our lounge where myself and our two teenage daughters were and calmly said he had a pain in his chest. I asked how bad it was, was it indigestion, heart burn? I even joked do you need me to take you to hospital are you having a heart attack? Paul said no he would be fine had a glass of water and went to bed. By 10.30 pm he was belching a lot which led us to believe he had trapped wind. Round about that time as he was laid in bed with the TV on he said the vision in his left eye had a black disc in it, but still assured us it would pass and he did not need to go to A&E. He had a very restless night and was up showered and going into work by 6.30 am. We have our own business and Paul is pretty much a work aholic. By 9.30am he was back home complaining still belching and complaining of being very cold. By 3pm he asked me to take him to hospital, we drove to the closest one and after a 30 min wait saw a doctor.

Paul’s BP was 180 (can’t remember the bottom number), he was sweating profusely and saying the pain was now in his stomach. He had an ex ray done, was put on the ECG machine which didn’t really show anything. By about 7.30 pm his BP was 230 (again can’t remember the bottom number), they then did a scan with dye in his veins, which showed the dissection.

I was told by the doctor that he needed emergency surgery and they had informed the consultant at James Cook University Hospital. I was taken to my husband, they had given him medication to try to control his BP, he was very calm, as he had been since the previous night (so brave). We were rushed in an ambulance (code blue) to the waiting surgeons at James Cook Hospital, amazingly through my weeping but trying to be strong for Paul we managed to joke and laugh with the nurse in the ambulance. We met the team of surgeons, anesthetists and nurses etc and typically my husband asked the consultant “will I be in work Monday?”.

Paul was in theater from 9.30pm for eight hours, they replaced the worst part of his ascending Aorta, oxygen to his brain was stopped for 11mins, apparently they had problems with stopping the bleeding, but aside from that all went well and he was in CICU by about 6am.

After three days Paul was still not awake, so he had a CT scan which we were told showed a firework display of brain damage. He was in a coma for 3 weeks, during that time we were told he would probably be severely disabled both mentally and physically. After 3 weeks he started to very slowly come round, he couldn’t move his left side, couldn’t walk, feed himself, speak, it was pretty horrible. After about a week and once off life support he was moved to the HDU ward, where over the next 2 weeks began to improve dramatically, two weeks later he was moved to the neuro rehabilitaion ward where he was expected to stay for at least three months.

Paul was discharged from hospital on the 26th October 2012 after about 10 weeks. He is back at work, got his driving license back in March 2013, we have flown to Spain four times. He has had his 6 month CT scan on the 24th of May and he is due to see his consultant on the 5th of June, we have our fingers crossed all will be well.

Paul’s dissection was caused by HBP, which really has no symptoms he is now on lots of medication to control it.

I can honestly say that this has been the most awful thing that has happened to our family, but we have got through it, we have cried, cursed, laughed hysterically, hated the surgeons who left Paul in a coma with the worst outlook possible but on the other hand they saved his life. We appreciate life more and don’t take things for granted as much. Paul’s consultants say he shouldn’t really be here and that his recovery has been amazing. After such a bleak prognosis thank god I still have my best friend.

Rodneylee Vogt-41

Name: Rodneylee Vogt
Age at time of Dissection: 41
Type of Dissection: Both Ascending and Descending
Date of Aortic Dissection: 16 December 2012
Tell Us Your Story:

What began as a relaxing day hanging out with a friend turned into a nightmare. It was a cold December Sunday in Omaha, Nebraska. I had spent the day at a friend’s apartment watching movies and playing video games. I had walked out to my car to go home when I sat in the driver’s seat and immediately felt the worst pain of my life in my chest, upper back, and lower back. Something was horribly wrong!

I pulled out my cell phone and called my friend to have her come out and walk back inside with me just in case I passed out. I managed to walk back to her apartment, (about 100 feet) before collapsing onto her bed. After telling her to call 911 I lay there suffering for what seemed an eternity but in reality was a scant 15 minutes before the squad arrived. By this time my right leg was completely numb from hip to toe.

On arrival the paramedics gave me a half dose of Morphine that did nothing for the pain. with their help I was moved to the gurney and rushed to the waiting squad. Once there I was given the other half of the Morphine which thankfully blocked my memory of the next 5 days.

I awoke in the hospital honestly believing that I was having a bad dream and was laying comfortably in my own bed. The next day was more of the same. On the morning of my 7th day in the hospital something in my eyes told my nurse that I was aware which prompted him to tell me in great detail what had happened to me.

I learned that my entire Aorta from the Aortic valve to the split of my kidneys had dissected and that a large section of my aortic arch had ruptured. The surgeons had replaced the ruptured section as well as the Aortic valve.

I spent a total of 12 days in the hospital and another 14 at my father’s house recovering before beginning 6 weeks of cardiac rehab. It has now been almost 4 months and I’m back to work and getting stronger every day.

I would love to hear from other survivors. I believe we all have a story to tell that can help save lives.
I’m alive! After that what else matters?

Leisha H-49

Name: Leisha H
Age at time of Dissection: 49
Type of Dissection: Both Ascending and Descending
Date of Aortic Dissection: 20 April 2012
Tell Us Your Story:

Let me begin by saying that I thought I was healthy and without medical problems. I had been in Iraq for 50 months! It is truly amazing that I am still alive and thanks to God for watching over me. Death was near and it was my fault for inviting it. I knew that my father’s family had a terrible history of aortic rupture, but thought my family had been passed over; even though my father had aortic valve replacement and died from an abdominal aneurysm!
While I was on vacation in Honduras, I experienced a warm burning sensation that traveled from my neck down my legs, caused weakness and a sensation of lock jaw. I then became violently ill and thought it was bad water (never experienced that before either).

I recovered except for a bad pain in my back between my shoulder blades that never left and that I had never experienced before. Once home, I continued with normal activities but was plagued with shortness of breath and a cough. I was treated with steroids and typical nasal remedies.Finally on June 18, 2012, not being able to breath, I went to the doctor and asked for lung x-rays. It showed both lungs 1/2 full. I was hooked to EKG (went tachy) and told an ambulance needed to take me immediately to a hospital.

I replied, my insurance won’t cover that! My sister in law drove me to the nearest large hospital, where they told me I needed Life Flight helicopter immediately. Once again I replied, my insurance won’t cover that! So, away in ambulance, through rush hour traffic to the medical center where my life was saved. I spent 11 days recovering after replacement of the aortic valve and descending thoracic. Unresolved aortic dissections held up my release and continue to be a worry today.

I am in genetic testing without a match so far, other than in is not Marfan. My grandfather died of pneumonia at 28, but I am confident he experienced the same thing I did, because I would have sworn I had pneumonia. Dr Cooley replaced my dad’s aorta and told us that we needed regular testing, but I ignored the warning even though I lost 3 cousins, father, and uncles.

Had I been unhealthy, I would not have lived. Generations of my father’s family, married, had one male child, and died. This is not an old person’s disease, in my family there are no old people who survive.

Dale S-44

Name: Dale S
Age at time of Dissection: 44
Type of Dissection: Both Ascending and Descending
Date of Aortic Dissection: 1 June 2009
Tell Us Your Story:

We had just come back from a weekend trip the night before, sort of a working vacation, and I was back at work with one daughter in tow. I had been feeling extra tired for the few weeks prior, but attributed that to being overworked and completely stressed out. That morning, my younger daughter (age 9) had thrown a tantrum over having to go to school when her sister (age 13) had already started her summer vacation. I had work piled up to my eyebrows and I was feeling just awful.

At noon, my husband, daughter, and a co-worker were down in the food court eating a greasy, unhealthy lunch when the pain hit. It was like someone had taken a sword and stabbed it straight through my chest and out my back. I couldn’t breathe. It was terrifying, like my insides were ripped clean through. Someone called 911 and the paramedics loaded me on a stretcher and started treating me for a heart attack. (It made sense, I was over 40 and about 40 pounds overweight.) I only remember telling my co-worker to take my daughter home.

At the hospital, they took X-rays and EEGs, but everything looked normal. In fact, the pain had lessened somewhat and moved lower, into my abdomen. I actually started to feel embarrassed that I was experiencing some kind of indigestion. But the attending physician was a friend of mine from high school that I hadn’t seen in 22 years, so she kept coming back to ask if I still felt the pain in my back. That was the one thing that was consistent, that even though the pain was moving lower, it still went straight through me. ‘One more test,’ she said, ‘to rule out dissection’ and so I was transported up for a CT Scan.

As he started running the dye in my I.V., the Tech said this was just a precaution because I was too young for an Aortic Dissection. I wasn’t back in the ER for more than a couple of minutes when the doctor came in again. I can still hear her voice say, “we got the results back and it’s very very bad.” She told me I had to be transported to another hospital, the first with a cardio-thoracic surgeon and an available O.R. They gave me meds to slow my blood pressure way down and put me in an ambulance. On the way, my left leg went numb and I blacked out for a bit.

When I came to, a doctor was telling me that the two inner layers of my aorta had dissected from the aortic arch, down to my abdomen, but the outer layer was holding. I remember him saying that there was a 20% chance I’d survive the surgery, but the only thing that went through my mind was that I had argued with my little girl that morning and I was so sorry that her last memories of me would be of that fight.

I woke up one week later, after having been moved from the ICU to a regular room. I learned that they had done a femoral to femoral bypass when the dissection cut off the circulation to my left leg. I had also suffered a stroke so they weren’t letting me eat or drink anything.

I remember sitting in that hospital room with my iPod, not able to work it because I couldn’t get my fingers to move the way I wanted them to. It seemed like my whole world had imploded on me.

Recovery was slow. It was four months before I could walk on my own, and another three to go back to work for a couple of hours a day. It was even longer before I got clearance to drive again. Emotionally, it’s been a bit of a struggle because I’ve had a rough time coping with the changes in my life, but my body has healed to the extent that I’m able to work part time and care for my family again.

Shabir Abuwak-41

Name: Shabir  Abuwak
Age at time of Dissection: 41
Type of Dissection: Both Ascending and Descending
Date of Aortic Dissection: 25 July 2010
Tell Us Your Story:

In July 2010 i had an aortic dissection, i had an interpositional graft in the aortic arch January 2012 it spread to the descending aorta the thoracic aorta abdomen aorta and the left iliac my body is in constant pain everyday and i have been ruled out of possible surgery by both thoracic and vascular surgeons.

Jeff Edwards-43

Name: Jeff Edwards
Age at time of Dissection: 43
Type of Dissection: Both Ascending and Descending
Date of Aortic Dissection: 6 May 2012
Tell Us Your Story:
I‘ve always been healthy and outgoing guy. I love to play and joke around, ride motorcycles, sports cars, and fly planes. I worked for San Mateo Sheriff’s department.
But during Sept 2011 – May 2012 I had a tremendous amount of stress with internal harassments on my job, which completely stole my joy. I began having difficulty sleeping at night, had night terrors, was drinking Pepto-Bismol for stomach upset and broke down crying 3 times! This was so not like me!
Then on May 6th, while bowling with my family, I felt severe pain in my back, between my shoulder blades. I yelled, “Call 911, something is wrong”. I am a CPR instructor and I knew the heart beat in my neck felt like a gush of blood, not a normal flow! I was rushed by ambulance to the ER where I was worked up for a heart attack. My blood pressures were high, but my EKG and Cardiac enzymes were normal.

It took 7 hours and a cardiac catherization for this hospital to finally understanding that my Aorta was dissecting all the way down my body. The KEY was in a test called DDIMER (mine was 1300!). Once the Cardiac Catherization camera saw the dissecting wall of my aorta, I was rushed emergently to Stanford where I was immediately taken to a 10 hour surgery to save my life. The doctors gave me less than 50% chance of survival – because I am only 43 and in otherwise good health.
My wife, waited, cried and prayed as physicians replaced six inches of my Aortic arch. I suffered a stroke as a result of the surgery which was determined to be “embolic” in nature, but continued to hemorrhage during the next two weeks post-surgery. I stopped talking, swallowing, and being able to control my bowels. Physicians said my response to the anesthesia and subsequent ICU stay was as if I had PTSD….given my work stressors, I am certain of it. The psychiatrists ask if I had been in Afghanistan in the Military because I was fighting and acting out so horribly. I don’t remember the ICU now.
God spared my life for a purpose! I spent four weeks in ICU on a vent, and was readmitted to the hospital three times during the next 4 months. I had fevers in the weeks to follow. Doctors thought it could be fevers trying to break down the blood clots in the false lumen of my aorta, or I was possibly septic. Scary times! Then I was readmitted again on week six for dehydration as I have not had the ability to swallow without choking. The stroke has left me unable to move with any speed at all, unable to articulate my thoughts, and with decreased blood flow to one kidney now, my blood pressures are difficult to control.

E Jones-47

Name: E Jones
Age at time of Dissection: 47
Type of Dissection: Both Ascending and Descending
Date of Aortic Dissection: 20 August 2007
Tell Us Your Story:

I was transported to the greatest hospital in Pennsylvania. (UNIVERSITY of PENNSYLVANIA) where I was taken directly up to surgery. 7hrs later … and 3 days of being induced in a coma.. i woke up !!!! Saw loved ones !! who i know loved me.. 5 year later… I still alive. It’s a great thing to hear a doctor say… “YOU ARE MY MIRACLE PATIENT !!!!”

Chris Morgan-42

Name: Chris Morgan
Age at time of Dissection: 42
Type of Dissection: Both Ascending and Descending
Date of Aortic Dissection: 11 March 2012
Tell Us Your Story:

Two weeks before his wedding, Chris Morgan’s aorta literally tore from his heart to his pelvis—a rare condition that almost cost him his life.

Chris Morgan was emceeing a three-and-a-half hour banquet when a strange feeling passed over him.

“The moment they handed me the microphone a busload of tingles drove through me,” the Eagan High swim coach recalled. “I felt kind of weird, but I didn’t feel like I was having a heart attack or anything, so I just kept talking.”

As the night wore on, Morgan felt unusually fatigued as if “someone had unplugged my heel and all my energy drained out.” He began to sweat heavily, but he kept going. Little did he know that the largest artery in his body was splitting, tearing apart from his heart to his stomach. Chris Morgan was in the throes of an aortic dissection—a medical condition in which a tear develops in the aorta, the main blood vessel branching off the heart, causing the inner layers of the vessel to separate.

It is a rare and often fatal condition. The exact causes are not fully known, though aortic dissection it is more frequent in older men and has been known to occur as a result of blunt force trauma, like a car accident. It also sometimes strikes otherwise healthy pregnant women.

It remains unclear why such a lot should befall Morgan, an energetic and active father of three.

“You’re as likely to have this happen as you are to win the lottery or get struck by lightning. It’s one of those things,” Morgan said.

A Twist of Fate, A Wedding Delayed
Though Morgan recently had troubles with kidney stones, his heart and vascular system were in tip-top shape. He had no blockages, no high cholesterol or high blood pressure.

His number came up at a time of great hope for the Morgans. The two were legally married in November, but both had worked tirelessly to fund a white dress ceremony in Mexico. They were looking forward to saying their vows on a pristine white beach surrounded by family and friends.

“We both worked two jobs, our full-time positions and then coaching for 14 weeks so that we could save money and go,” said Morgan’s wife Amy, an IT project manager with Capella University and diving coach for Eagan High. “It was hard. That wedding is what we looked forward to when we were getting up at 5 a.m. every day.”

With the end of swimming season, their dreams were in sight. The plane tickets were reserved, the hotel was booked and the white dress was hanging in the closet — all ready for their big day on March 20.

“We had it all worked out perfectly. It was all going according to plan,” Chris said.

Instead the Farmington couple ended up in the ER at Burnsville’s Fairview Ridges Hospital. One of the first to see Chris was Nurse Molly Mattson, a swim parent who had been present at the banquet before going on her shift at the ER at 11.

“He had all the classic symptoms. We knew really quick that he was in trouble,” Mattson said. “He was pale. I watched his heart rate drop from 80 to 70 to 60 to 50 to 40 to 30. It was real touch and go type thing.”

Within about five minutes of the Morgan’s arrival, Doctor John Houghland decided to do a CAT scan, in addition to an electrocardiogram (EKG) and an ultrasound.

“I think he knew that I had it right away, based on the fact that I had two different blood pressures in each arm, but he wasn’t letting on until he knew for sure,” Chris said.

The results confirmed Houghland’s suspicions. The ER team kicked into high gear, giving Chris fluid and blood in both arms to stabilize his blood pressure. A chopper was called in. Chris was going into surgery immediately in the operating room at the University of Minnesota Medical Center.

There was no plan B.

“That’s when things got a little scary. They stopped talking to us and moved us out of the room with the TV where you can sit around and make jokes,” Chris said. “That’s when you get moved to the room with the shiny metal and no creature comforts.”

A Race Against Time
Hastily, the team loaded Chris onto the helicopter. Eight-and-a-half minutes later he arrived at the U of M. He was on the operating table within the hour. If even five more minutes had passed, Chris Morgan would not have made it, Mattson said.

“He was very lucky. His survival chances were 5 percent,” Mattson said. “I don’t think they comprehended that he was going to die at any moment on the table. Every time I looked at him I thought that this was it.”

On the operating table, doctors found extensive internal damage. A series of tears riddled 28 inches of his aorta, extending from his heart all the way into Morgan’s right leg. Surgeons replaced the top four centimeters of Morgan’s shredded aorta and repaired the top half of the blood vessel. The surgery concluded during the wee hours of March 12.

Chris was in the clear.

An Uncertain Prognosis
So far, surgeons have not touched the bottom half of his aorta, which remains compromised. A number of his vital organs are getting blood through the breach. At this point, Morgan’s doctors don’t want to risk further surgery, which could cut off that blood supply.

As a result, Morgan has a double pulse in his abdomen, just one of the many oddities resulting from this unusual condition.

Aortic dissection is not common, but survival is especially rare.

“I recently spoke with a vascular surgeon recently who specializes in fixing dissected aortas from the mid-chest down. He’s only met 12 people in his life who have survived it,” Chris said. “Because of that they’re taking a wait and see approach: I don’t feel there’s a lack of effort, but a lack of data to support decision making. You can’t look at 100 case studies and say that XY or Z will happen in three months.”

The Morgans are grateful to the team at Fairview Ridges. Without their quick and accurate appraisal, Chris would not be here to tell the tale. They are particularly indebted to Nurse Mattson, who made a special effort to get him the best care possible at the U of M. With a few frantic phone calls, Mattson was able to get one of the most talented surgeons, Herbert Ward, out of bed and into the OR.

“I felt like I had the A-team everywhere I went,” Chris said.

Nevertheless, the ordeal has taken its toll on the couple. The uncertainty of Chris’ fate has also weighed heavily on the two of them.

“It’s been hard. We feel blessed and then we’re mad. It’s just this whole gamut of emotions,” Amy said. “It’s been a real roller coaster for both of us, but we know we’re lucky.”

Chris, a sales manager, went back to work this week. The Morgans missed their wedding, of course. The resort has allowed them to reschedule their stay, the ceremony and the dinner, but Delta Vacations has been far less flexible. For now, the white dress is gathering dust, but the Morgans hope to make it Mexico by October.

Jill Schreiber-48

Name: Jill Schreiber
Age at time of Dissection: 48
Type of Dissection: Both Ascending and Descending
Date of Aortic Dissection: 4 October 2010
Tell Us Your Story:

It was a Monday..I remember it well. I am an elementary teacher, and was in a co-worker’s office visiting. It was a little before 11am. I glanced at the clock and stated that my students would be coming soon. I went toward the door, and all of a sudden it hit me. I had the strangest and most painful sensation in my chest I had ever felt. I told my friend there was something terribly wrong and to call 911, I thought I was having a heart attack. I passed out at that point and fell to the floor. The next thing I remember I saw my husband’s face and paramedics.

I was taken to our small town hospital and treated as if I was having a heart attack. The pain continued…it was horrible. They couldn’t give pain meds until they could figure out what was happening! I knew that something terrible was wrong!! All of the standard heart attack tests where negative. They had no idea what was happening, but they too knew something was very wrong. Finally after 5 hours of tests and x-rays, it was decided to perform a CAT scan. THANK GOD! The ct scan showed the dissection! I was told this was a very serious critical condition, and that I should tell my family good bye.

I had a hour flight to the closest larger hospital, and it was highly possible that I would not survive the flight. I did….after an 8 hour emergency surgery, I spent 3 days in a medically induced coma, and then…..after 8 days in ICU..and two days on the regular floor, I was discharged. I had survived and I was blessed. However…my story doesn’t stop there. While recovering I developed a plural effusion, and had to be hospitalized several times to drain fluid off my lungs., would be a long recovery. My plan was to return to teaching on February 1, 2011. However….on January 25th, I began experiencing stomach pain.I was once again flown an hour from home to the hospital that saved my life in October. I knew I would be in good hands. I had not expected what was about to happen. I was told after tests, that I was in renal failure…my organs were shutting down, my arteries were dissecting.

I was also beginning to show signs that my abdominal aorta was also dissecting. Within a week, the doctors felt they would lose me, or they could try a procedure that would replace all of my arteries and my entire aorta with a dacron graft. This procedure had not been done in it’s entirety in this facility, and they had tried to transfer me out. However…in my condition, we didn’t have a choice, they would have to attempt the surgery. My arteries and aorta were measured and grafts were ordered. The gratfs would have to be flown in. I now had to wait…..wait in a bed…wait for what lies ahead…wait for what God had planned.

I spent 6 days in the hospital waiting for my “new parts”. I was scheduled for surgery on Tuesday Feb. 1. I dissected on another Monday…strange it as is…Monday January 31, 2011. I was rushed into surgery, my surgeon and team happened to be in the hospital that night. They were preparing for my surgery which was scheduled the following morning, but now…it was happening now…I couldn’t wait. I survived. I spent 16 days in ICU and then was moved into a “step down” room for 2 months. I was discharged to my hometown hospital and placed in “swing bed” for another 2 weeks, and then finally discharged after a long hospital stay! I had gotten compartment syndrome in my right leg following surgery and lost the movement in my left leg from the knee down, but I walk with aid of a brace. I didn’t have any symptoms, not over weight, no high blood pressure, no family history.

I missed a year of work, but I am back to teaching full time and haven’t missed but only one day this school year~! I am truly blessed…however, I do have my ups and downs…I am a miracle. I am looking forward to my 50th birthday in September! I would love to correspond with others who may have my similar story. Please post my email…

Ray Hendrix-44

Name: Ray Hendrix
Age at time of Dissection: 44
Type of Dissection: Both Ascending and Descending
Date of Aortic Dissection: 23 January 2011
Tell Us Your Story:

It was Jan. 23rd 2011 when my life changed so tragically. I was a 44 year old male with diag. of uncontrolled hypertension since I was 20, diabetes when I was 42 years old, I was born with only 1 kidney, smoked since the age of 13, and a drug addict for many years. To say the least I did not take care of myself and really did not think anything about my health. If only I could do over. My wife is typing this for me. I suffered complications after the dissection that prevents me from doing alot of things. I had been clean for 5 years that time when I suffered the dissection.

It was about 3-4 weeks before the actual event that sent me to the hosp. where I just was not feeling good. My blood pressure finally got half way controlled with a new Dr. and Cardiologist. It was nothing for my B/P to be 180/120 and me have no symptoms what so ever. Over the years I did have some hosp. stays and E.R visits for severe hypertension and chest pain but the Dr.s never seem ed to be too worried about it. I was not good at taking my meds. like they were prescribed either. Anyway I noticed a knot on the front of my shin that hurt and it got a little red around it plus I had pitting edema in my ankles that I had not had either so my wife thought maybe it was a blood clot possibly but I needed to get it checked out.

I went to my cardiologist and he sent me to get a doppler on it and that was fine so then we was going to set up an appt. to have a CT scan done from my lower back to my ankle. Well 2 weeks went by and I had not heard from them so my wife calls and there was a miscommunication along the way and they were going to set up the appt. for the CT scan now. Well I did not make it to the appt. On the evening of Jan. 22nd 2011 I was having a normal day. I was standing in the living room and my wife was cooking supper when out of the blue I started having severe chest and back pain.

I knew that I had never had any thing like this before and I yelled at my wife to get me to the E.R now. I heard my husband yell but I thought he was playing around like he always did so I finished what ever I was doing and I went into the living room to find him standing up with his shirt off and him holding his chest stating take me to the E.R. What made me realize that this was serious is him asking to go to the E.R. He had been clean for 5 years and he always refused to go to the E.R because he knew that they would shoot him up with Morphine first thing and he did not want that so him asking to go was serious.

Made it to the E.R and they got me right in. My B/P was out of the roof and pain was almost unbearable. Of course the first thing they wanted to do was give me morphine and I told them I was a recovering addict and could you not try NTG tabs first. I did not want any narcotics!!!! Well they gave me some, drew blood and done EKG and all the normal stuff. In the mean time I was getting no relieve and my B/P was 210/130. My wife told me I was going to have to let them give me Morphine and so I did. My wife which is a nurse told the E.R Dr. about the place on my shin and how they were going to do a CT scan but never did. She did not know if there was a connection or not but thought they needed to know. I guess we were in there for 5-6 hours having every test, X-Ray and yes a CT scan done when the doctor came in and stated that I was going to be air lifted to another hosp. to have heart surgery due to an Aortic Dissection. That is all I really remember due to the fact they pumped me full of Morphine, Dilaudid and Lorazepam. I do remember telling them they better knock me out before I got on the helicopter.

The Drs. and nurses were telling the family to say what ever they needed to say to me for this was a very serious surgery with poor odds. Got to the hosp. at 2am and they decided to wait til 7am in the morning to do surgery where the surgeon would be fresh and thought I was stable enough to wait. Dr. did not tell us of any complications from this surgery if he did make it. He just said it was a 50/50 chance. Really stressed the fact that he might not make it. He made it.

They made him a new aortic arch. He had both the ascending and descending tear. Surgery was 6.5 hours. Of course he was on the respirator, Subclavian I.V, chest tubes and foley cath. They took him off the respirator the next morning before we got there and they attempted to give him some meds. and he aspirated. They had to suction him and when they did they must of hit some small blood vessels in his throat because the blood was bad they said and that is one thing Ray does remember. Needless to say they had to place him back on the respirator for about another 4-5 days. He was able to communicate by winking at me or moving his hands when they would decrease his sedation med.

They were very worried about his kidney due to all the antibiotics they had to give him but that managed to do well. He was weak but that was all we could really tell when he was moved out of CCU and placed on the floor. When he got to the floor the next day we noticed that his balance was bad when he sat up or anything but was told and thought that was normal. He could not open his jaw all the way.His speech was a completely different tone and everything but was told that was due to the suctioning and respirator being in for as long as it was. Then we noticed one pupil was bigger than the other and he was not able to follow anything with them. Also noticed that he was weak in the left arm. They called in a neurologist. She was in there for approx 10-15 minutes and gave him the diag. of Progressive Supra-nuclear palsy.

He was able to see and identify every object that was given to him as long as the objects was placed where the eyes were focused at. PSP as they call it is another devastating diag. and Dudley Moore died from it. I refused to accept that diag. due to the fact that he was was improving. Well no Dr. nor nurse could tell me what happened just that I should be thankful that he was still alive. I cannot count the many times I was told that when I would want them to give me some insight on what happened. Also they had to place a feeding tube in him because he failed his swallow study and everything he swallowed went to his lungs. Now it is time for him to go to rehab. facility. He passed his swallow study there but still could not eat enough to sustain his weight due to his jaw. They got him to where he only needed stand by assist for walking now and he was dressing himself and everything else. His eyes still no change. They would be looking up sometimes then down sometimes but only because of the way he moved his head. His memory was good both short term and long term but his personality sure had hanged.

He is funnier and he hugs alot more. It is like all walls were removed. A year and 3 months after the dissection I must stay with my parents during the day while my wife works a 40 hour job. My balance is worse. I cannot walk with out some body giving me moderate assist. I have taken several falls and alot of them caused by me due to me just jumping up with out help. My impulse control is very poor. I can dress and bathe myself but somebody must be right there. I have had alot of Home Health therapy sessions and out pt. therapy but insurance will only pay for so much and then they cut it off. My emotions have been good considering but I did and I still do have those days where all I do is cry and wished I had died. I have thought of suicide several times. I believe in God very much so and depend and lean on him alot because he is not finished with me due to the fact I am still here. My faith is tested daily but I am believing that I will recover even if it is thru death.

Gods plan is better than mine and he will bring me thru this his way. My eyes I am moving them slighty on my own every once in a blue moon but that is progress. Speech is still hard to understand at times and my jaw has gotten some better but I still do not eat enough to sustain my weight so I must get tube feed. My CT scans and MRI’s showed that I never had a stroke so what happened I do not know. My lower dissection is good and my upper is doing good so far. I thank God every day that I am here a little while longer with my wife and Son. If any one has had or have heard of the complications I have had please let me know. I am a survivor and I want to spread the word around about Aortic Dissections.

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