Category: Ascending/Descending Page 1 of 6

Jeffrey Randa-48

Name: Jeffrey Randa
Email: avaroni@aol.com
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…

GAGAN DEEP KAUR-35

Name: GAGAN DEEP KAUR
Email: sahnigagandeepkaur@gmail.com
Age at time of Dissection: 35
Type of Dissection: Both Ascending and Descending
Date of Aortic Dissection: 30 June 2013
Tell Us Your Story:

It was a normal routine Sunday till 9 pm. I had just finished my dinner and about get up from my table when the pain started in my back . The pain was located between the scapula.It soon started increasing and a sensation of something tearing down was felt.Since I am a qualified Homeopathic practioneer and already lost my elder brother to this disease i.e. aortic dissection in 2002 at the age of 25. It took me just few minutes to realize that it is dissection.

I told my parents that this pain may be due to dissection. for both of them it was once again the same old time of mental trauma which they had earlier gone through when my brother died.Our neighbors are really very nice they took me GMSH SECTOR 16 Chandigarh. There I told the likely cause of pain along with medical history. ECG was done, Sublingual medicine was to minimize the chances of cardiac arrest along with 2-3 injections for pain killer.In the meantime I had vomited 4-5 times .

I was sweating profusely along with severe pain and tossing about to get relief. The doctors then referred me to PGIMER Chandigarh for furthur treatment.The doctors at PGI emergency went for CT ANGIO which confirmed the dissection.It was type A and B dissection and was obstructing the coronary artery.I was at higher risk of getting a cardiac arrest due to blockage of the artery.

I then called My father’s cardio thoracic surgeon Dr RANA SANDIP SINGH at his place.It was already 7 in morning the next day 1/07/13. He asked me what is wrong , Is my dad is alright as my father had been operated upon for aortic aneurysm at the sinus as well as at ascending aorta. I told him about the whole episode, he immediately asked his subordinates to make arrangements to shift me to CCu and prepare me for surgery.

He was there by my side before i reached CCU He told my parents that I will be undergoing a massive surgery and this one is going to be a complicated one and there are bleak chances that she will survive.I still remember the time it was 11 am and I was shifted to operation theater.

It took more than 12 hours to complete the surgery. My mom told me later after my recovery that it was 1 a.m. when the told her that surgery is over and she will be better and out of CCU after few days. I stayed at the hospital for 40 days. I had few complications post surgery like left lung effusion was not draining, developed hallucinations due anesthesia. MY life have changed since then.

Charles McKenna-56

Name: Charles McKenna
Email: charliemckenna@att.net
Age at time of Dissection: 56
Type of Dissection: Both Ascending and Descending
Date of Aortic Dissection: 25 January 2014
Tell Us Your Story:

On Thursday January 24th, 2014 I was 6’0″ and 180 pounds. Reasonably fit non-smoker. On a Thursday evening I lifted a 175 pound, big, awkward snowblower into my SUV, took it to a cottage, used it, put it back in and returned home and took it out. My wife helped on all but one of the lifts. I stupidly did it myself on the last one. It was too heavy to lift comfortably alone and I knew it but did it anyway. I felt fine, slept fine and worked on Friday. Friday night, while I was home alone as my wife was at the cottage, I felt a searing, ripping pain in my chest and abdomen.

I called 911 and laid down to die on the rug by the front door. I had sustained a Stanford type A and B aortic dissection. It was diagnosed and my ascending aorta was removed and replaced with a tubular Dacron graft the next morning. Three weeks later I was finally conscious and able to be removed from the respirator. I couldn’t talk or swallow and was very weak. Those things had completely resolved about 4-6 weeks later with rehab. Today I am three years post surgery and doing fine.

I was on a sick leave from work for about four months. I do plan to retire a little early to enjoy life beyond work. I do still have some abdominal pains periodically, maybe every few weeks or so, which I attribute to the descending dissection. But that is being monitored for size and my blood pressure is being controlled. I do have some numbness in my toes.

I can live with that. But a cautionary word- exhale when you lift heavy weight! Google the Valsalva maneuver as it relates to heavy lifting– ramifications are serious for anyone with aortic flaws. I believe the heavy lift caused my dissection.

Lloyd Erickson-55

Name: lloyd erickson
Email: lloydandjoan@frontier.com
Age at time of Dissection: 55
Type of Dissection: Both Ascending and Descending
Date of Aortic Dissection: 9 July 1997

Tell Us Your Story: Celebrated my 20th survival year ////// My heart doctor thinks that is a world record. That length of time is exceptional considering I suffered a “total” dissection. I am known as the “miracle man” at the hospital.

I have two aneurysms that have been at a critical stage for the last ten years but have not failed. I have gotten very familiar with living day to day. Life is great, enjoy every moment.

Romney Mawhorter-48

Name: Romney Mawhorter
Email: romneym@hotmail.com
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.

Christopher Reed-57

Name: Christopher Reed
Email: Creed4295@icloud.com
Age at time of Dissection: 57
Type of Dissection: Both Ascending and Descending
Date of Aortic Dissection: 17 January 2015
Tell Us Your Story:

I am presently 58 years old and my dissection occurred while I was building a fence while working on my cabin at Eagle Lake, CA. I was setting the posts when it felt like someone drove a Bowie knife through my chest. It dropped me to one knee. I was lucky my wife was there talking with me when it happened. She asked what was wrong and I said I thought I had some bad indigestion. She knowing me, said I don’t think and called 911. We have a volunteer Fire Dept. near my cabin.

While she was calling I went down to my butt and then laid down on the ground. I finally picked myself up and walked over to the deck to change my shoes as they were muddy. I got in my truck and my wife drove me to the Fire Dept where the volunteers were headed. When we got there my right arm had lost all feeling and I couldn’t move it. The volunteers took my blood pressure and told me that life flight had been called and we needed to get to our small little airport. When we arrived at the airport, the trauma nurse took control. She check my blood pressure and told the pilot they had to leave now.

The gurney I was on would not lift me high enough to get in the helicopter so the nurse asked me to get in. The platform in the helicopter was about 4ft long and I am 6’6″. so after scrunching I was able to make it work. I looked out at my wife and told her that I loved her and to tell my kids I loved them. Then the nurse told the pilot to get in the air and hurry to Renown Hospital in Reno, NV. The last thing I remember before I past out was flying over the lake and wondering if it was the last thing I would see. I was told later that I died when I past out and the nurse revived me and was able to get me to the hospital. The next thing I remember, I woke up and I was on a gurney and being ran down the hallway to surgery.

I looked at one of the nurses and asked where I was and what we were doing. She explained that I was on my way to surgery and it was serious. I told her I needed to talk with my wife who was driving from Eagle Lake to Reno. The nurse pulled out her phone and asked what the number was, dialed it and handed me the phone. When the phone was answered, my Mother in law was on the other end and said my wife was asking directions from the service station attendant. When my wife got in the truck I told her I was headed to surgery and it didn’t look good, she told me she was 5 minutes away and would be there soon. When she got to the hospital the Dr. was there to talk with her before he went to surgery and explained that I had died in the helicopter on the way and again in the emergency room and was revived both times and was now going into surgery. He told her that I had both an ascending and descending Aortic dissection and that my artery to my right arm, the artery to my right kidney, the artery to my left leg and my carotid artery had also dissected.

He told her it would be a miracle if I pulled through and if I did I would be out for 7 to 8 days and be in the hospital for 30 to 45 days. After 10 1/2 hours of surgery and an ascending graph I woke up a day and a half later and my wife said I reached up and pulled all the tubes out of my throat. The nurse that was in my room called Code Blue and the Drs. came running. The respiratory Dr. told the nurse that I must not like the tubes and for her to put me on a mask. I don’t remember any of this, my wife said I past out as soon as the tubes were pulled out. I woke up in the morning and my wife was in my room. When she saw I was awake she started checking my feet and hands to make sure I could move and then she started asking these stupid questions. I looked at her and said what are you doing, and she said they thought I would have brain damage or possible paralysis. I told her I was fine and could move with no problem and I understood everything she was saying.

She called the nurse and she got a hold of the Doctors. By this time my family was all there and I realized that I had just dodged the Grim Reaper. If it wasn’t for the love of my family and all the prayers I don’t believe I would have made it. The next day I ask the nurse if I could get up and sit in a chair while they changed my bed, and the day after I asked to take a walk, I made it about half way around the ICU Unit, the day after that I completed a whole lap, I then moved up to two laps and at the end of 2 week in ICU I was discharged and got to go home with a pile of pills, 34 a day. The doctor couldn’t believe how fast I was able to go home. I believe it was God that kept me here for a reason that I have not figured out yet.

I will keep thanking him and hope to live a productive second life. I went back to work 1 year to the date of my dissection and have been back to work for 11 months now. I am so happy to be productive again. Being off work for a year was hard, and after gaining 40 pounds I realize my life has to change. I am on a diet and working to get control of my life. Good luck to all that go through this life altering issue and thank you for listening to my story.

James LeClaire-57

Name: James LeClaire
Email: jamesmech@outlook.com
Age at time of Dissection: 57
Type of Dissection: Both Ascending and Descending
Date of Aortic Dissection: 18 April 2016
Tell Us Your Story:

I‘m a recent survivor of an Ascending and Descending Aortic Dissection. I worked full time as an automotive technician, and had just recently switched shops so that I could be closer to family members. I started the job on April 1st and was looking forward to working there, because they are a great crew, and the insurance benefits that I would qualify for would take effect on May 1. I had gone in on the Saturday, previous, to fulfill my weekend obligation, which happened once every month. I had, absolutely, no symptoms that were apparent on that day. My wife had left for Texas to visit relatives, while I stayed behind, because I hadn’t accumulated any paid time off, yet.

The following day I had my 5 year old Granddaughter over for a fun day at the park and we were out, together, for about 5 hours or so. On returning home, I was exhausted, and asked her if she could hang out with her Great Grandpa while I took a short nap. While they played in the other room, I noticed a very slight pain in my abdomen and back that I attributed to, possibly, pulling a muscle in my previous days work (It happens quite often in this business.). My Stepdaughter came by at around 5pm, after her5 work shift, and picked my Granddaughter up. I continued to sleep.

That evening around 8pm, my wife called from Texas and we chatted a little, but the pain was a little worse now, and I told her that I wasn’t feeling well, and that I would call her the following day.

I went to work the following morning after eating a light breakfast and felt okay, except for the pain that hadn’t changed from the previous night. I brought in my first vehicle of the day and had to pry on a part with considerable force to make the new part fit properly. I dropped the vehicle down from the lift and proceeded to finish some other repairs that were needed on the vehicle.

The pain from the previous night was intensified, and I marked it off as probable indigestion from my breakfast, when, suddenly, the pain intensified incredibly. I also began to feel dizzy and somewhat out of breath. I still debated whether this was a true medical emergency, however, which was very dumb on my part. I finally asked a co-worker to call 911 as I suddenly felt very weak, and thought, finally, that I was having a heart attack.

Surrounded by co-workers, the ambulance finally arrived and I was shipped off to a local heart hospital. Nitro and an EKG were started and IV lines were set. The pain was incredible… it felt like my heart was being ripped from my chest while I was still fully awake. I remained conscious throughout.

Arriving at the ED I was given another EKG and a series of blood tests, that, basically, told the staff that my heart was fine. I was pulled out of the triage and moved to the hallway (The ED was incredibly busy that morning, around 9:30AM), to await an X-Ray of my chest. I assumed that my case wasn’t dire, as the staff had moved me out into the hall and seemed far less urgent, than when I had first arrived. I did remain uncomfortable and in a lot of pain, but figured I would get a shot of something, and be told to go home and rest for a day or two. I called my wife and told her that I was in the ED and might have had a heart attack.

I went for my X-Ray and was pushed back into the hallway and noticed that there were a lot of people who seemed more critical, than I was, at the time. I waited and waited, until the Hospitalist came over and told me that I would stay overnight for observation, and have a stress test the following morning. Cool, I thought, maybe a blockage or something and I would possibly miss a little work, but nothing major.

The PA on duty looked at her triage board and my case had come up in the rotation and she came to discuss, with me, how I was feeling. I told her I was in pain and she ordered some morphine and told me to sit tight and relax while she discussed me with her colleagues. I was then visited by a Cadio-Thorassic surgeon who asked me where my pain was and he promptly went away. The Hospitalist then ordered a CT Scan and I was returned again, to my previous hallway location.

Within a half hour or so, the PA returned and brought along a few more people, and I was suddenly back to the head of the line and was being prepped for surgery. I had had many more injections of Morphine and Fentanyl and was pretty much still in the same pain. I remember my step daughter and her fiancee asking me how I felt as everyone around me was feverishly working to get me prepped. I asked the PA to please call my wife, in Texas. I was told that I was going to have my chest opened and I was suffering from an “Aortic Dissection”. I had no idea what that meant, but figured it was “Serious!”. Where was my phone? I need to look that up.

The next several hours (7 or 8, I’m told) vanished, while I was in the ER as the hospital staff worked to save my life. Unknown to me, Te PA contacted my wife, and told her that she needed to get here as soon as she could and that I probably wouldn’t survive the surgery, and prepare to have me removed from life support.

I woke up and noticed that the ICU nurse was sitting beside me and that my Stepdaughter was reading her textbook, from the nursing course she was taking. I remarked that it was awful bright, still, at 8PM in April, and was amazed at how long the day had become. I was informed that it was the following morning.

I made it through the worst of the mess and my wife arrived, to find, to her amazement, that I was awake and doing pretty well, considering. I was in the ICU for a couple of days and was then sent to the Cardiac Care ward, with the intent that I would be soon released to rehab.

Toward the end of that first week, the pain returned and my wife noted to the staff that something was still seriously wrong (I thought I was merely constipated from the pain meds), and she relayed that information to the Cardiac PA who ordered another CT scan. They found that I also had a descending dissection and that a TEVAR procedure was needed, so they brought me back to the ICU so they could administer Lobetalol intravenously to keep my blood pressure below 120 Systolic. The TEVAR was scheduled and I waited. I was, also, informed that the TEVAR procedure may result in the loss of a kidney, and, even worse, could render me a paraplegic.

Unfortunately, the blood thinners they had prescribed (Assuming that the second dissection didn’t occur), had a long half life and my scheduled surgery was pushed back a week. Finally, on May 2nd, I had a successful surgery and spent the following 2 weeks in the ICU and Cardiac care ward.

I am going to lose a Kidney at some point in my life, but it will be a slow degeneration. I still have the use of all of my facilities, and count myself extremely lucky to have, not only survived this killer, but also with virtually no serious complications!

I have to thank all of the people who got me through this, because without them, I wouldn’t be here typing this story.

Barry Willis-65

Name: Barry Willis
Email: bwillis2112@gmail.com
Age at time of Dissection: 65
Type of Dissection: Both Ascending and Descending
Date of Aortic Dissection: 30 March 2015
Tell Us Your Story:

My name is Barry Willis. I am a 66-year-old retired industrial chemist, living with my wife in Sydney, Australia. I have three adult children and two grandsons.
Last year, I suffered an aortic dissection and my life hung in the balance for more than three days, although my family and I were completely unaware of this at the time.

This is my story.
On the afternoon of 30th March 2015, at around 4:00pm, I was using the computer when I suddenly felt dizzy and experienced severe, sharp pain in the chest. I lay down and after a few minutes of the pain persisting, my wife, Penny, rang an ambulance, which took me to Concord Repatriation General Hospital in Sydney, Australia. I was initially treated for a heart attack by the ambulance paramedics and doctors in the Emergency Department.
During my admission, the pain persisted, with limited relief from morphine. Following a number of tests, including ECG, a chest x-ray and blood tests, I was advised by a doctor early the next morning that I had not suffered a heart attack, but that they were unsure of the cause of the ongoing pain. The doctors advised that I would be sent for a CT scan later that day, Tuesday 31st March. This did not happen.

Following inquiries by my family on the morning of Wednesday 1st April, a doctor informed us that the CT scan had been cancelled. The doctor also advised us that the CT scan machine was being serviced and I could not receive a CT scan that day. I’ve since been advised by Concord Repatriation General Hospital that they cannot explain why the CT scan was cancelled, and that contrary to the information provided by the doctor, there was an operational CT scanner available that day.

Nearly three days after presenting to hospital, and after experiencing constant, migrating pain which was never completely relieved by morphine, I underwent an abdominal CT scan on Thursday 2nd April at approximately 2:00pm. Soon after, I was visited by another doctor, who told me that I may be suffering from a Type B aortic dissection involving the descending aorta. I underwent the second CT scan, a CT aortogram at approximately 8:00pm, which revealed that I not only had a Type B aortic dissection, but also had a Type A aortic dissection involving the ascending aorta. I was then rushed to Royal Prince Alfred Hospital (RPA) for emergency surgery.

The following morning, after a longer than expected operation, my wife received a call from the surgeon to say that I was out of the operating theatre. He and his operating team then met with my family and informed them that it had been a very difficult operation. He explained it was “touch and go” as to whether I would survive and the next 24 hours would be crucial.

During the operation, I had to be returned to cardiopulmonary bypass due to uncontrolled bleeding and the surgeon had opted to delay chest closure until the medical team was sure the bleeding was controlled. Over the next two days, I was in an induced coma, while my family waited to see if I would survive. The bleeding slowed over the next 48 hours and on Sunday 5th April, I was returned to theater for the chest closure procedure. After the surgery, I gradually regained consciousness and commenced the long road to recovery.

For the rest of my life, I will be taking medication and undergoing regular scans to monitor my aorta which continues to dilate.

Stacey Payne’s husband-53

Name: Stacey Payne’s husband
Email: elp7632@windstream.net
Age at time of Dissection: 53
Type of Dissection: Both Ascending and Descending
Date of Aortic Dissection: 28 January 2016
Tell Us Your Story:

This happened to my husband. I will never forget the first time he went to the hospital two days before. He had me rush him to the hospital he had indigestion, and chest pain and weakness in his arms. They kept him overnight to do test. They done a echo cardiogram, stress test, and lots of blood test. Which they found nothing. And sent him home. He got up the next morning and went to work. He had been there about 3 hours, and he called his boss and said it was happening all over again, that he was going home. His boss told him to stay where he was he was coming to get him.

Because they were about 10 minutes from the hospital. He got in the truck and drove him straight to the hospital. By the time he got there he was out of it. And very sick to his stomach from the pain. When I got to the hospital I had never saw him in such pain. He never complained. They did the CT Scan stat, and rushed him straight to the OR. Where they only gave him 20% chance to live. And they were in surgery for 9 hours. During this they had to do a double bypass and put in a stint.

And he had a stroke. Withing 24 hours they had took the breathing tubes out, and from there they slowly took something away each day. Took them a while to figure out he had a stroke. He was really out of it and talking really crazy. He spent 9 days in the CICU, and 3 on the step down unit from there. The stroke affected his vision, and his memory. He has been told to take it easy. What brought me to this page was looking to see if anyone else had to have another surgery. He may have to have another one, as his aorta is leaking, and they said it can cause his heart to weaken. I have been trying to research treatments and outcome of another surgery. If anyone knows anything I would love to know.

He has always been a hard worker and this not being able to do anything is driving him nuts.

Tony Hojnoski-54

Name: Tony Hojnoski
Email: wahojnoski@yahoo.com
Age at time of Dissection: 54
Type of Dissection: Both Ascending and Descending
Date of Aortic Dissection: 2 April 2016
Tell Us Your Story:

Iwas a 54 healthy active medication free, symptom free, male. I jogged into a rest room on a highway. Went to the bathroom, washed my hands and suddenly my jaw had severe pain that brought me to my knees. I made my way to our truck and my wife and had her drive me the hospital. The ride was ten to fifteen minutes. My symptoms spread from my jaw to my chest to my left leg.

My wife wheeled me into the ER. I was still conscious but the pain in my leg was becoming over whelming. I recall the triage portion of the ER but have no memories of the ER or scans that took place after that. i thank God for the experience of a couple of nurses who almost from the moment I arrived activated the Cardiac and Vascular surgical team. Within two hours I was out of the ER and in Surgery.

The Cardiac surgeon at my chest and the Vascular surgeon at my legs. 11 hours later, a mechanical Aortic valve, repair of the ascending Aortic tear, a new tube placed, Femoral bipass from my right leg to left leg and a Fasciotomy on my left shin. A long stay in ICU and then to Cardiac critical care. I Then 10 days in a rehab hospital moving from a wheel chair to walker to no aids. I was very weak but doing better every day until the 29th of April. Double vision and back to the hospital after suffering a TIA. It resolved without any residual effects.

I am grateful to be at home. A pile of pills every morning and night with a self administered shot in the belly. I just completed my first week of Cardiac rehab with out complications. I sometimes feel I am a star. The nurses and therapists keep saying “oh you’re the guy’. Its difficult to explain to people what happened to me. I am grateful to our fine local hospital, the nurses,doctors and all their supporting staff. I was lucky to have a quick diagnosis and even quicker surgery. I know with extended time it would have been unlikely that I would have survived.

I have always lived day to day but I cant help wondering what life will be like in the future? My ultrasounds still show dissections in my Carotid, Descending Aorta and Femoral arteries.

Tricia Monico-65 (Husband’s Story)

Name: Tricia Monico
Email: triciamonico@gmail.com
Age at time of Dissection: 65
Type of Dissection: Both Ascending and Descending
Date of Aortic Dissection: 20 April 2013
Tell Us Your Story:

Background info: my husband was a 65, seemingly healthy man. He was not over-weight. He golfed and played tennis regularly. His high blood pressure was controlled with meds which he took religiously. He was a non-smoker and drank socially 2-3 drinks per week. His father died at 86 of heart disease. His Mom was 99 and living on her own. (She died recently at 102.) Genetics seemed to be in his corner. Not so much.

In April 2013, after a busy/stressful day and a long weather delayed flight to Naples FL my husband experienced extreme pain in his chest. He immediately went to the ER. At the hospital he had the usual tests for a heart attack which turned up nothing. Still experiencing pain, (luckily!) he was given a CT scan which determined that he had an AD ascending and descending ~ from his carotid artery to the top of his legs. He was rushed in to surgery. After a 11 hr successful surgery, we were told he would be awake in approximately 12 hours. Five days later he was still unconscious.

The stress on our family was unbearable. After three weeks in intensive care and another week on the floor, he was released from the hospital a shell of the man who went in. What began as a long weekend in Florida didn’t end until June when we were able to fly home to Chicago. That Summer was a blur of doctors appointments, numerous scans, physical therapy, speech therapy. He slept 18 hours a day.

We took walks through the Botanic Garden which not only has beautiful flowers but more importantly many benches to rest on. At his six week check-up, we were told that he had an aneurysm which had to be “watched”. We were shocked … almost as much as we were when he had the AD. Would this nightmare never end??!!! By August he was at the Cleveland Clinic having his second open heart surgery of the year . In December he had the second part of the Elephant Trunk Procedure to repair his aneurysm. We celebrated Christmas at the Cleveland Clinic. It took him another 5-6 months before he was well enough to go back to work. We watched his salt and fat intake and be began to exercise moderately in addition to walks at the Chicago Botanic Gardens.

Fast forward 3 years. He’s doing great. Says he’s 90% better ~ perhaps the 10% could be because of natural aging. He works full time, plays tennis 2x/week, golfs as much as Chicago and Florida weather permit. He exercises moderately. Yoga once a week for mind and body.

Surely he is one of the lucky ones. If you are reading this, no doubt you are desperate for hope ~ just as I was 3 years ago when I read these blogs while my husband was in surgery ~ wondering what life had in store for him/us.
Stay strong. Be patient. Sleep as much as you like/need. This probably the one major carry-over my husband has experienced. On weekends he’s known to take 2hr+ naps.
Good luck!!!

I pray you are as lucky as my darling. God bless.

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.
====
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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Lisa’s Dad-74

Name: Lisa W
Email: skioop29@hotmail.com
Age at time of Dissection: 74
Type of Dissection: Both Ascending and Descending
Date of Aortic Dissection: 19 December 2015
Tell Us Your Story:

My dad died suddenly and unexpectedly from an acute aortic dissection on Dec 19 2015. He just finished having dinner at their home with neighbors and was sitting in his living room chair, when he was stricken with sudden and ripping chest pain. He was rushed to the ER and after 30 minutes of evaluation, he began to lose sensation in his left leg and foot, with numbness. The ER doc knew then that this must be a dissection and summoned lifestar helicopter for transport to a leading hospital. While lifestar was enroute, they rushed him for CT scan to get more information for the cardiac surgeon at the hospital.

By the time he was out of the CT scan he began to rapidly decline and lose consciousness. The surgeon read the CT scan and concluded that my dad would not likely survive the air transport and would never survive the surgery. Our family was told to stay with him at bedside. They had intubated him when he began to have labored breathing after the CT scan, and by the time I got to his bedside he was unconscious and non-responsive. Yet he remained alive for 2 hours on manual intubation.

The question and doubt that haunts me is how could he still be alive with a beating heart for that length of time, and not be a candidate for emergency surgery. I will always question whether they could have saved his life if they airlifted him to the hospital for emergency surgery. My dad had a preexisting thoracic aneurysm and hypertension but it was stable and was checked every year by his cardiologist. The dissection began at the root of the heart and involved both ascending and descending aorta.

The saddest part about my Dad’s death is that he had a simple prostate surgery in August of 2015 but contracted a UTI infection which persisted for 4 months. He was on a strong course of Cipro antibiotic for this duration of time to clear the infection but it persisted. After he passed away, I researched more about Cipro and found a most disturbing report released by the AMA during the same time he was on the drug that Cipro. This report found Cipro to be linked to aortic dissection because it weakens collegen in vessels. I believe there is a direct correlation between the drug and his sudden aortic dissection.

It is horrible to know that my Dad may still be here today were he not on this toxic drug for this length of time. But my main question remains, why did the surgeon feel that he would not survive surgery if this man lived another 2 hours under intubation until we asked them to remove the tube and put my father out of his suffering?

Jeremy Myers-32

Name: Jeremy Myers
Email: Myers.jeremyd@outlook.com
Age at time of Dissection: 32
Type of Dissection: Both Ascending and Descending
Date of Aortic Dissection: 22 March 2015
Tell Us Your Story:

I was in the middle of my hitch on an oil=rig. The oilfield was declining quickly so my rig was in the yards and I was spending my days painting over rust. At 3:30 my day was over so I headed over for my daily workout ritual.

I was in the best shape of my life had stopped smoking and started eating right. But during my workout I lost all motivation and decided to go take a shower. I never made it that far. Just as I got the water right and was about to step in it felt like someone just unzipped me.

Immediately my legs started hurting and I was completely lost and confused. I couldn’t collect my thoughts, or really anything for that matter. Luckily enough about the time I felt my legs give way beneath me a Coworker walked into my room saw my current state and got help.

They flew me in to a tiny hospital that diagnosed me with dehydration, and started pumping fluids to me. After 3 bags they they realized something else was wrong mainly because I was exhaling blood. So back on the chopper I went and ended up at oschners in new Orleans.

Ascending and descending aortic dissection. It’s been ten months since the dissection and I’ve had two Stents, lost a kidney, nerve damage on my left side. And have the memory span of goldfish. Don’t know what’s next just lost at the moment.

Dina Wright-50 (husband’s story)

Name: Dina Wright
Email: dmwright13@yahoo.com
Age at time of Dissection: 50
Type of Dissection: Both Ascending and Descending
Date of Aortic Dissection: 5 December 2014
Tell Us Your Story:

My husband Mitch had an ascending and descending aortic dissection in December of 2014 at 50 years old. He was at work when he had severe chest pain that moved to his back. I had never seen him like this before. He has a high threshold for pain so when he said he needed me to take him somewhere to get relief for his back I knew it was serious. We left our kids with my mother in law and went to the ER. There was an incredible ER Dr. who quickly diagnosed his dissection from his symptoms and cat scan. He was immediately transferred to a nearby heart center by critical care ambulance and immediately taken into surgery. This happened so quickly it was difficult to understand the magnitude of what was going on.

I would not let myself Google aortic dissection until he was out of surgery for fear of what I might find out. After surgery, his surgeon gave me more details. His dissection began at the root of his heart and travels down into his left thigh. His aortic root was replaced with a synthetic one and his root was re suspended. Every Dr. that saw him during his stay in the hospital would shake his hand and congratulate him on being alive.

The tear was as close to the heart as could be without killing him immediately. The surgeon said he will always wonder why my husband had a dissection because other than high blood pressure (which was controlled with BP medication prior to dissection) he has no contributing factors that would cause his dissection. The high BP alone should not cause a dissection he told us. Mitch stayed 1 week in the hospital to recover from surgery with the help of incredible ICU nurses.

It has been just over a year since his dissection and we are extremely fortunate and grateful for his recovery. It has been a year of learning a new normal for Mitch and our family. Mitch was unable to go back to work as a self employed carpenter which was very difficult for him to accept. But there was no choice in tha one. Our Kids, who were 13 and 11 at the time of his dissection, are extremely protective of their dad now. They don’t let him lift anything they feel is remotely heavy, even if it doesn’t come close to the 20 lb limit the Dr. restricted him to. They are also very understanding about his sodium intake and how it effected what we as a family eat.

Since the surgery it has been very difficult to keep his blood pressure stable. The systolic # is generally 125-155. He currently takes 300 mg of beta blockers daily, 40 milligrams of BP med quinapril daily, and 60 milligrams of calcium channel blockers daily, all to try and help control his BP. He also takes prescribed pain medication and muscle relaxers to help reduce his significant back pain due to his previous back injuries. When his back pain is high it increases his BP even more.

He goes to physical therapy weekly to help his back pain. The high dosage of meds he is on makes his day very different than it was prior to his dissection due to all of their side effects. His memory and attention span are significantly reduced. His level of energy is almost depleted after small amounts of activity. He always feels fatigued. When he occasionally feels good he can tend to over due it which causes more back pain and even more fatigue. Naps are a necessity and not a luxury anymore. But we are slowly getting used to our new normal and happy to, if it means it will help Mitch.

One of the struggles we have had is finding the right cardiologist for my husband. We have been seeing the same cardiologist since he was released from the hospital. Unfortunately, this Dr. has only 1 other patient with a dissection and in many ways a very different case than my husband’s. I expect our cardiologist to be more informed on this subject that he appears to be at my husband’s appointments. It has been very difficult to find a Dr. that has significant experience with dissections. We live just outside Tampa, Florida and not anywhere near any of the listed hospitals or Dr.s listed on this site or we would definitely visit one.

I would greatly appreciate any information on finding a Dr. that can provide us with experienced guidance, instead of us telling the Dr. what information we found online about dissections. This site has been an incredible wealth of information and I am extremely grateful for all the time you have invested in it. It has helped to answer so m
any questions we have and has given me such peace of mind reading survivors and survivors spouses experiences. Thank you for this gift.

Bill (My Husband)-58

Name: My Husband
Email: mrscdewitte@yahoo.com
Age at time of Dissection: 58
Type of Dissection: Both Ascending and Descending
Date of Aortic Dissection: 22 December 2015
Tell Us Your Story:

My husband Bill suffered his first aortic dissection on December 20, 2014. He was 58 years old at the time. He was on the treadmill when he felt what he described as, “My heart feels like it just ripped from the lining of my chest.” Having suffered a heart attack five years earlier, I assumed the pain had something to do with the stents that had been inserted.

Upon arrival to ER we were quickly whisked back into a room and things moved pretty quickly. We were initially told that he had a lesion on his aorta and that he needed surgery. I asked if they would go through his groin to fix it, similar to how they put in his stents. The ER Doctor said, “No, this surgery is a much more involved but I’ll let the thoracic surgeon talk to you.”

When the surgeon arrived he told us that if my husband didn’t have the surgery he would die. He also said that a quadruple bi pass was a walk in the park compared to the surgery my husband was about to have. After 8 hours of surgery, my husband had a new ‘radiator hose and was good for another 100,000 miles.’ We spent Christmas in the hospital and my husband was finally released on December 31.

During 2015 my husband was the text book patient. He ate healthy, went to cardiac rehab, and continued exercising- no weights just mild cardio and calisthenics. In August, after riding his bike he started having chest pains. He thought he overdid it on the bike; however when the pain didn’t subside after a couple days, we went back to ER. He was kept overnight and a host of tests were ran. The doctor told him his heart was fine and that there was nothing wrong. After a week or so my husband resumed his normal exercise routine.

On December 22, 2015 we picked our youngest son up from the airport. He recently joined the Air Force and this was the first time we had seen him in 6 months. After spending last Christmas in the hospital we were all looking forward to a quiet Christmas at home. Unfortunately, that wouldn’t be the case. That evening, around 7:30 pm my husband said he was having chest pains. He didn’t want to go to the hospital because our son had just gotten home. Fortunately, my son insisted he go to ER. Upon arrival, my husband was diagnosed with an MI and they took him to the Cath lab and implanted another stent. When his chest pain didn’t subside, a hospitalist finally ordered another CT scan. The news was devastating. My husband’s aorta had dissected from the point of last years repair all the way down to his right thigh. Plans were immediately made to transfer him to a University hospital 2 hours away.

Due to his heart attack and the complexity of the tear, surgery was not performed. The surgeon also informed us that the CT scan done in August (after his bike excursion) did show a dissection down to the diaphragm. This was missed by doctors at our local hospital. The latest dissection extended from the diaphragm down to his right thigh. After spending 12 days in ICU, my husband was sent home on a boat load of BP medications. The plan is to keep his BP low and monitor the dissection. It’s my understanding that the aorta has torn but does not have an aneurysm.

We’ve only been home for 5 days so my hope is that somehow we find our new normal. I could ‘what if’ our situation to death but I know that will not do any good. Right now I am paralyzed by fear that something will happen to him. I spend my nights listening to his breath and watching the rise and fall of his chest. Each morning he wakes, I praise God for giving us another day together. For those of you living with or taking care of a loved one with a similar situation please feel free to share how you cope with situation.

Tase Evans-36

Name: Tase Evans
Email: tase.evans@gmail.com
Age at time of Dissection: 36
Type of Dissection: Both Ascending and Descending
Date of Aortic Dissection: 14 December 2011
Tell Us Your Story:

A little background first. I was a pilot in my 20’s, working on an Airline Transport rating in college when I was first diagnosed with high blood pressure. The diagnosis ended my flying career before it really started.

I got depressed and dropped out of school, and kept my college job at a grocery store for much longer than I ever intended. Even at full-time with decent health and prescription coverage, I found it hard to keep up with my blood pressure.

My work schedule was different every week, and I’d miss appointments which meant I’d run out of my meds. Doctor would drop me for missing appointments and it’d take months to get a new Doctor. Really, I never took high blood pressure seriously. I was also very overweight and had untreated, un-diagnosed, sleep apenia.

I also live in Chillicothe, Ohio. A small town of 22k people; 60 miles due south of Columbus.

Tuesday, December 13th was a pretty good day. I remember not wanting to murder my co-workers, which was a good sign. That night my wife and I joined my parents, my brother and his wife for dinner at a nice restaurant and learned I had a niece or nephew on the way. All in all a good day.

The next day, I was scheduled to be at work at 6am, the opening shift. I woke up shortly before 4am, needing to pee, an hour before the alarm was set. After I did my business, I returned to sit on the edge of my bed and felt a sudden, severe pain in my chest.

I woke my wife, whom had just received her nursing license two months ago, and told her about the pain in my chest that ran down my left arm. That I was sweating, and also had a pain located between my groin and belly button. That last symptom confused her but all the rest told her “Heart Attack”, and she called 911.

We got dressed, and walked down stairs to meet the ambulance. By the time EMTs arrived, I was having difficulty walking. By the time I arrived at the hospital, five miles away, I was unable to move my legs.

I remember bits and pieces of the next 24 hours. My wife and my parents filled in some of the holes, but I don’t like to ask them about it anymore. The first day at Adena Regional Medical Center were horrible. It was after 12 Noon before anybody gave me something for pain, I was in agony for hours. I’d always had a high pain tolerance, I rated a broken arm as a 7 in high school, but now I’m telling them I’m 15 and a half on a scale of 1 – 10. I was finally given a single 5mg tablet of hydrocodone.

Around 3pm, I’m taken for an x-ray. Surprise, surprise, they found nothing. A doctor came to tell my family the results of the x-ray, sat on the edge of the bed, ignoring me and told my wife they found nothing, then asked how I got around at home. Her response:
“What do you mean? He WALKED TO THE AMBULANCE. THIS IS PART OF THE PROBLEM!”

At 4:30 I’m taken for a Lumbar Puncture. I’m not a small man. Six foot four and 350lbs. I’m moved by a gurney (not my room bed) to a room where I was transferred to a tiny table for the LP, and back to a gurney for my next trip across the hospital for a CT scan. With Radiology in sight, they couldn’t fit my gurney around a corner, it was too wide! So they took me back to the LP procedure room, transferred back to the tiny table, and back across the hospital again, where Nurse Ratchet couldn’t start an IV to save her life, but she knew how to dig. And when she gave up on the IV, they gave up on the CT scan!!!

I don’t remember the MRI at all, but that was when they finally found the dissection. It began in the ascending aortia, and ran all the way to the illiac crest. By this time, 7pm, the weather had changed, the sun had set and no air-ambulances were flying. A doctor (the same one as before) told my father he didn’t think I’d survive a flight to Columbus anyway, and it’d be a miracle if I survived the ambulance trip.

I did survive the ambulance trip, but that alone didn’t improve my odds. The team at Ohio State University’s Ross Heart Hospital didn’t sugar coat things. I was given less than a 5% chance of survival. But a wonderful team of surgeons, including Dr. Jean Starr and Dr. Michael Go, helped me survive every step of the way.

I had several severe complications, which included repertory failure, liver failure, chronic kidney failure, “Raging Pneumonia”, a total blockage of the illiac arteries, heparin-induced Thrombocytopenia, and an increase in abdominal spinal fluid(the reason I couldn’t walk).

I spent a total of 90 days in the hospital where I vowed never to “Tell them No!” What ever test they wanted, what ever they wanted me to do in rehab, I’d never say no. I’ve had (in no particular order) three weeks of dialysis, three blood transfusions, three intubations, two weeks on lumbar drain, and three weeks of physical rehab learning to walk again.

And today, I still wake up above the ground, thanking God for the opportunity. I have bi-lateral Illiac stents, continuing chronic kidney failure (Staged 3a) and non-diabetic neuropathy / partial-paralysis of my left leg.

Some of my memories of my time in the hospital are horrible. I will never willingly return to Adena Regional Medical Center. Some are funny. I remember being told that Aortic Dissection was the cause of death for John Ritter and Lucile Ball, and that night laying awake watching TV, but the only things on were infomercials, I Love Lucy, and Three’s Company…

And then there are memories caused by the cocktail of medications I was on too embarrassing to share.

And my mother remembers looking for information on Dissections online, looking for survivors stories to share with me while I was in the hospital. And only finding stories of those who weren’t so lucky.

So thank you for hosting this site.

Dan Brackle-51

Name: Dan Brackle
Email: dbrackle@aol.com
Age at time of Dissection: 51
Type of Dissection: Both Ascending and Descending
Date of Aortic Dissection: 4 January 2011
Tell Us Your Story:

Iwas sitting in my office at 10 in the morning, and got a tremendous pain in my back and lost feeling in my leg.

My co-worker took me to local hospital emergency rom I had a cat scan and then was air-lifted to Univ. of Pa. Hospital and had surgery next morning to repair type B dissection. 5 days later had to have open heart surgery to repair type A dissection.

In June of this year had a stroke and after recovering will be going back to work in January. My mother had 2 brain aneurysms 20 years ago and is still living at 81. I am interested in any treatment or clinical trials in the future.

Nora Balogh-83

Name: Nora Balogh
Email: norabalogh@sympatico.ca
Age at time of Dissection: 83
Type of Dissection: Ascending
Date of Aortic Dissection: 6 October 2015
Tell Us Your Story:

My 83-year-old Mom was very fit and healthy leading up to the events of October 6th 2015. She lived on her own in her own house, was a member of a number of bands and music groups and she was always out and about. She played badminton three times a week, did a lot of walking and race walking and went to the gym regularly. She did have a few age-related annoyances but no serious previous health problems. Her blood pressure had always been normal and she wasn’t taking any medications.

On the morning of October 6th, 2015, she was awakened out of sleep at around 6:30 am feeling terrible (“…as though I was about to die…”). When the feeling didn’t go away, she called an ambulance. Her friend and neighbor who was just heading out to work, accompanied her to the hospital and emailed me to let me know that Mom had been transported to Toronto East General, the local community hospital, by ambulance and that I should fly to Toronto as soon as possible. I made immediate arrangements and also contacted my brother and sister, who each lived thousands of kilometers away, so that they could also come. I knew it must be serious, but I didn’t yet know how serious.

Mom’s friend later told me that Mom had arrived at the hospital looking awful, with a lot of chest and back pain. Since her blood work showed that she didn’t have a heart attack, they ordered an MRI scan and that immediately revealed the problem: an acute type A aortic dissection that extended from next to her heart well down the other side of the aorta. Mom was initially told that they would prepare her to be transferred to St. Michael’s Hospital in Toronto for emergency surgery. She and her friend high-fived each other: they now knew what the problem was and it was going to be dealt with!

But then everything changed. The surgery was off. Apparently there was 100% chance of death from this surgery at Mom’s age, so it made no sense to go ahead with it. Unfortunately, bluntly put, Mom was going to die and it was probably going to happen relatively soon. All they could do in the meanwhile was to aggressively control her blood pressure to give her a little bit more time.

I arrived in the early afternoon that same day, my brother in the evening and my sister the next day. We were a good team together, taking turns staying with Mom overnight in the acute cardiac care unit and all three of us were with her during the day. Mom was alert, though she was full of intravenous lines and at times in a lot of pain – mostly severe back pain as a result of not being able to really move – and they had to use morphine a couple of times. Over the following 3 days, we shared information about my mother with the cardiologist. She knew that our mother was an unusually active and healthy 83-year-old. She continued managing Mom’s condition medically, a course of treatment that had been determined in consultation with the same specialist from St Michaels who had denied my mother the surgery.

At the start of the fourth day, Mom was still hanging in there and no terrible and irreversible medical events had yet taken place. There had been a change of shift and another cardiologist came on duty and took over my mother’s care. He talked with us, and my mother joked with him as he examined her. After assessing the situation, he then told us that in his opinion, Mom would in fact be a reasonable candidate for surgery and it would be very much to her benefit. He was willing to try and seek a second option about the surgical option. We knew it was going to be major, risky surgery, but then the current course of action was even more risky. We were all for it!

This cardiologist got on the phone and started calling around. I overheard him advocating for Mom, saying “Yes, she’s 83, but she’s a wonderful 83 and she really wants to live! The previous surgeon denied her purely on the basis of age and I don’t agree with that.” Two CV surgery specialists on duty at Sunnyside and Toronto General Hospitals both agreed to bring her in for assessment. A bed opened first at Toronto General and Mom was transported there by ambulance. She was assessed by the surgeon, with us sitting around the bed and listening intently to the interaction. Then he said in a low-key way “I think the surgery will be beneficial for you” and she signed the consent forms with a firm hand. Wow!!!!!

Mom received the 5.5 hour surgery about an hour later, as soon as they were able to get together the team and prepare the operating room. The long and short of it is that she came through it fine and no serious issues arose. Ten days later, she was released to a rehabilitation hospital and another month later, she went home. I moved in with her for the first month and a half after her release to smooth the transition and she’s now on her own with a little extra help (e.g. cleaning people coming in every second week, with several neighbours offering to help with heavier tasks as necessary). And I’m visiting for a few days every second week. Mom is functional and her recovery is coming along well.

Last week, 9 weeks post surgery, Mom had her first appointment with the cardiologist, the same one who advocated for her and found her the surgical space. It was quite joyful, I think on all sides. She was able to do 10 minutes on the treadmill for the exercise stress test, in other words, to walk rather briskly on an every-increasing slop uphill for a sustained period of time, with no cardiac abnormalities. The technician turned to me and told me part way through “We expected her to be able to do 1 or 2 minutes! Dr. … is going to be thrilled with this result!” And of course he was, saying “Look at you – you’re looking fantastic!”

Mom still has quite the road ahead of her to get back to where she was in terms of conditioning. But I think we can safely say at this point that she’s had a great outcome, all things considered.

Lisa Elliott-50

Name: Lisa Elliott
Email: elliott070@gmail.com
Age at time of Dissection: 50
Type of Dissection: Both Ascending and Descending
Date of Aortic Dissection: 4 August 2015
Tell Us Your Story:

I am a professional aerialist with a history of chronic CMV, but otherwise very healthy. I began experiencing chest pain (upper left), shortness of breath and faintness in November of 2014. I went to a cardiologist in December of 2014 and lucky for me, I fainted in their office during a stress test. I was sent to the ER and received every imagining test there is during a three-day stay in the hospital. Everything came back perfect, except for the echo-cardiogram, which showed an enlarged aorta and leaky valve. They were not particularly concerned due to the absence of obvious risk factors, and sent me home once I could stop fainting. We planned to look at it again in a year.

I continued to have symptoms of shortness of breath, weakness and upper-left pain, which the cardiologist could not explain. Apparently because “you don’t feel an enlarged aorta or a leaky valve” I was told in early Spring that they believed my symptoms were psychological. I am a professional athlete, and my body awareness is far beyond the norm. I am very peaceful and calm, and knew my symptoms were not psychological (i.e., anxiety). It drives me nuts that MD’s routinely make a diagnosis that they’re not particularly qualified to make, based on the fact that they can’t find another explanation.

I continued to train, though modified to reduce symptoms, and performed an aerial act at a public event on August 2nd. I felt horrible. I was weak, and continued to feel chest pain. During a coaching session (I was the coach) on August 4th I felt a sudden, intense burning in my upper left chest and knew it was an aneurysm. It was like a blossoming of fire. After the initial pulse of pain it was unchanged for about 45 seconds, and then it began to burn downwards along the length of my aorta.

EMT’s diagnosed a heart attack and transported me to Swedish Hospital at Cherry Hill. Oddly, I knew it was an aneurysm, but because I had researched aneurysms and understood them to be deadly within minutes, I didn’t bother to tell the EMT’s. I believed I was dead. The only thing I cared about was the trauma I would be causing my two teenagers by my death. Everything else paled in comparison.

Once at the hospital they began treating me for the heart attack, only to quickly discover the aneurysm in the aortic arch. I was quickly moved to another surgical team and repaired in a 10-hour surgery. I have a dacron arch, St. Judes valve and a length of vein harvested from my left leg replacing artery above my heart. The dissection extends about 6 inches into each thigh.

The dissection also interrupted blood flow to my left kidney. I was placed on diuretics and put on fluid restriction, and my lungs were drained several times of up to a liter of fluid from each lung. I was also told that my breathing difficulty was “psychological”. Sexism, anyone? Eventually they discovered the issue with my kidney and placed a stent to improve blood flow. My breathing eased immediately and has remained stable.

During the month-long episode with kidney failure I was also paralyzed twice for several days because, theoretically, flaps of tissue from the dissection blocked blood flow to my spine. This was an intermittent problem, and I currently have use of my extremities, though not complete.

I’ll be returning to surgery for placement of a stent at the bottom of the aorta where it splits into the femoral arteries. Currently I can’t walk more than a few feet without running out of blood and oxygen in my leg muscles. Blood flow is predominantly in the false lumen, and turbulence from the complicated path leads to an inadequate supply. At this point my mobility and the possibility of leading a active life will depend on the success of this procedure. I am hopeful, and very, very nervous. So much depends on it. I have many questions for my surgeon.

I continue to go to the gym and do what I can. Mostly I work on range-of-motion and air squats. I also work, very carefully, on a form of acrobatics I have developed using a physio-ball. It’s very fluid and easy. I’m amazed I haven’t experienced more atrophy than I have. I have to lay down flat quite often to allow perfusion of my muscles in my extremities. It’s very uncomfortable to exert myself, and results in a burning and cramping in my abdominal, hip and leg muscles. I also have an intense tingling in my extremities, especially on the left side, where the weakness is also the worst, which increases with exertion.

I have no family history of aneurysm or dissection, no problems with my heart at all, no problems with my blood pressure, no lifestyle-related risk factors, and no predisposing diseases. I’ve eaten an anti-inflammatory diet for 20 years (Paleo). This seems to be related to my connective tissue disorders (CMV and something like CFS) combined with the very high intra-thoracic pressure produced by my aerial acrobatics training and performing. In that way it’s very similar to aneurysms and dissections resulting from weight lifting.

The story isn’t over yet. I’m looking forward to working with the rehab team after this stent procedure to determine what, if any, of my acrobatics practice will be possible for me. I love practicing hand balancing, but of course no one knows if that’s advisable for post-dissection patients. The two don’t generally go together! It’s up to me.

So glad to have found this site. Thank you!
Lisa

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