Category: Unknown/Ascending

Frank DeFord’s wife story

Personal Stories: Michael DeFord’s Wife Story

This is an incredible story and dedication from a loving husband. The story is very large and includes other helpful information about AorticDissections. You can find the document by clicking here.

You can contact Frank here.

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

Trudi Karcher

Personal Stories: Trudi Karcher

This is the story of my Mom. Shirley Smith. She and my father were getting ready to fly out to their winter home in FL and on the 2nd of Oct. she ended up in the hospital. They said she didn’t seem to have a heart attack nor a stroke. Through her testing they found that she had a leaky aortic valve and 4 – 50% clogged arteries. Her doctor told us they would treat this with medication and released my mom from the hospital. On Oct. 14 she went back to the same doctor and he released her to go to FL.

So, mom & dad went to purchase new tickets and were to leave on the 18th. Well, on the early morning of the 15th, Oct. She woke to a terrible pain in her chest. Dad drove her to the emergency and they put her into a CT Scan. Found that she had a torn aortic valve. They sedated her heavily and put her into emergency open heart surgery, which they had said would only take approximately 6 hours. 17 hours later, they came into the waiting room and told us she was being moved into ICU. They had her in a induced coma and also paralyzed so she would not be able to move.

My mom was so swollen from this they were never able to sew her chest back up. She was on a by-pass machine for her left heart and a ventilator and so many med, I think she had 16 IV’s. They put her back into surgery on Saturday night because her chest cavity was filling up with fluid. Then again on Tuesday the 19th, more surgery to try and take her off the by-pass machine.

They said it would take up to 7 hours if it was going to work. They came out after 1.5 hours and wanted to send her to the University of Michigan hospital. The doctor said her kidneys were failing and dialysis might help but also that her lungs were hardening and leathery. Her blood OX at this time was only 69.

She never came out of this. I wonder if they could have diagnosed this the first time she was there? Why didn’t they do a CT Scan? Obviously, there was something wrong when they found the leaky valve and the arteries clogged… I miss my mom, she was so full of life and none of us expected this.

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Cynthia Fisher

Personal Stories: Cynthia Fisher

I had been employed in a Veterans Affairs hospital for 35.5 years.  I had one of those thankless and prone to being harassed jobs in the Clinical Laboratory Service.  Approximately a year before my ground zero, the laboratory hired a new manager who, apparently, had determined that all supervisors (GS-11) should be eliminated…the goading began.  Approximately 30 years before, the nursing staff had taken blood pressures of the staff, gratis.

Mine was high. I continued to work all shifts and all units, pursue two master degrees, and did get medical pharmaceutical treatment for my high blood pressure.  Treatment was moderately successful until ….at a hastily called staff meeting, the manager goaded a lot.  I left the meeting to return to my office and work…I felt this excruciating  pain between my shoulder blades.  I considered sliding out of my chair onto the floor but did not trust my suddenly absent coordination.  Eventually, my room-mate came in, helped me to the floor and called 911….and my husband.

The circus that followed was extraordinary.  I was taken to the CAT scan, bypassing Radiology.  The emergency room physician treated me as if I had had a coronary…stuffing me full of heparin…and was totally bewildered by the scans….thought she was seeing blood clots in the aorta.  Since I was not a veteran, I was sent to a large civilian hospital in the area.  (That was good and bad.)  The physicians there were able to diagnose the problem…a complete aortic dissection, from root all the way into the right leg.  I was admitted to the cardiac unit, given

blood pressure medication to drop my blood pressure from over 200 to less than 100, percodan and morphine for the pain, and dropped the temperature of the room to 65 degrees F.  After freezing for five days I was  sent home. Several physicians have said that I should have the dissection repaired but the two options I am aware of seem unlikely to help.

Local surgeons have been experimenting with repairing (closing) the dissection at the beginning, but have only attempted partial dissections.  Similar caution seems to apply to using a stent. Have surgeons at Mayo, Cleveland, John’s Hopkins, Mass General any recommendations?

Contact Cynthia Fisher

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

Pat Bussinger

Personal Stories: Pat Bussinger

My name is Pat. I have a dissection of an aneurysm of the aorta. I was is the hospital for pneumonia, and had a chest x-ray. The doctor reading the x-ray saw what he considered an abnormally, and it was followed by a CTscan of the heart. Then came the cardiologist came! They had no good news. The aneurysm had sealed itself off—which was a good thing, but the bad thing is they say it cannot be operated on because it is only 4ml (or whatever). I wait every day for it to rupture, therefore I do next to nothing. It has me very depressed. I neglect my home, my husband, my friends. I have an appointment with my cardiologist next week, and I will again ask if it is not possible to put in a stent. If he says no, I will ask for a referral to the Mayo Clinic. I do think a second opinion is in order…….Pat

Update: 8/6/2004

Hi Brian   I have been in touch with Dr, Liang and Sunny several times now, and I am preparing for my trip to California on Aug 13th.  My surgery is the 18th, but Sunny told me to give myself a few days to enjoy the beauty, so I am.   I sent my CTscans from the past year, including the one my doctor insisted I have before he would see last month—which he didn’t he didn’t even look at.  Dr Liang called me at 10pm Sunday night to discuss the films, and said al the films before this July showed nothing that indicated a dissection of any kind—they showed nothing, even though the reports said there was a dissection—this was for a year.  Now the one in July showed something, but it was not a dissection—-it was an ulcer growing at a rapid rate inside of my aorota.  If not removed in 2 months I would be dead.  What luck that the doctor never looked at the films—God knows what he might have done.  Dr. Liang worried all night about them and called a conference to discuss them in the morning—they all agreed it was a dangerous ulcer.  Dr Liang called me again Monday morning and asked me how soon I could get out there.   He assures me that with-in 6 months I will back to my old self doing as I please, as if it had never happened.  This is truly Divine intervention.  To not be able to sleep—go on the computer—search on aortic dissection, just happen to hit on Brian’s page, Brian going the extra mile for me—putting me in touch with Dr. Liang—and putting where I am today.  Brian I love you.  You are a miracle. Pat

Update: 9/3/04

Hi Brian   I feel a special bond between us because you pointed me to Dr. Liang.  I flew out to California, and had my surgery on August 23rd.  All went well.  I had no problems, but it will take me a bit to recover completely.  I don’t handle surgery well.  It saps my strength, and others may say it was a walk in the park.    The whole experience was a wonder.  Everything was prepared as though it had been planned for months.  No waiting in line.  Sunny walked me through the whole thing.  I could not get over how smoothly things went.  I feel privilaged to be a patient there.  I wish everyone would have the chance to go there.  Think how many lives would be save.   I just want to thank you for your intervention.  I’m sure I would not have had the good experience, and chance to live a normal life.  You are making a differnce—please keep up the good work   Thank you from the bottom of my heart Pat Bussinger

Update: 9/4/04

Hi Brian   Dr. Mitchell did the surgery.  They certainly make a great team.  I got a bit un-nerved waiting for the surgery, as they had to wait for the right stent to arrive.   I have been put into a study for this stent.   I did not have a dissection of the aorta.  Mine ended up being an ulcer inside the aorta that had made it’s way through the wall, and a sac formed and was holding it all in.  There are miracles for sure.   I feel I am on my way to a new life!   Thank you again Pat Bussinger

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

Judy Cardamone

Personal Stories: Judy Cardamone

I am so excited to find your website.

I so agree, knowledge is power and the best defense against this disease. Here is a brief summary of my story. Thirty-two years ago my mother died of a ruptured aortic aneurysm. I had never heard of such a thing and was led to believe this was just “one of those things.” Fast forward about fifteen years and a paternal Aunt had an ascending aortic aneurysm that was ready to burst. Good news.

They found it, she survived the surgery. I thought it was coincidental that my Aunt had this. And of course since she was related to my father, I still thought what happened was an anomaly. Fast-forward to 2000. My sister calls me from PA to tell me the sad news that our cousin, a male on my father’s side, age 51 and as far as we all knew quite healthy, suddenly collapsed and died.

I live in CO so I did not get to talk to his siblings much about what killed him. My sister seemed to think it was some kind of congenital heart valve problem. Fast forward to April, 2003. I get the most awful call of my life. My nephew called to tell me my sister had died of an aortic dissection. While I was home for her funeral, I asked my cousin’s brother what the exact cause of his death was. He gave what the autopsy said: aortic dissection.

Six months after my sister’s death I was beginning to emerge from the shock. I had seen my doctor and learned I have a “slightly dilated” aorta. Since then I decided I had to do something. I realize that when my mother died the tests available today were not available them. But my cousin and sister may have had a chance to have had life saving surgery if it were not for ignorance.

I learned that my cousin had been probably dissecting for a week but because no one ever connected the dots about our family, they were treating him for the flu and a pulled back muscle. My sister already had been informed she had a dilated aorta and told them that in the emergency room.

She lay there for 12 hours. They did an EKG and gave her an enema. She had arrived at the ER at 6:00 AM and at about 4 pm one doctor decided she did not look so good and ordered a CT scan. At 6:30 she still had not been scanned and she died mid-sentence with her husband there with her.

Ignorance I believe killed my sister.

I have found some great articles. Here is the link for one:

http://www.sfgate.com/cgi-bin/article.cgi?file=/news/archive/2003/11/04/financial1108EST0078.DTL

Also Robert Kaiser, Associate Editor of the Washington Post, did an article called The Tell-Tale Heart. He too suffered an aortic dissection.

Brian, your site is wonderful and a great start. I think the only way this disease will get the attention is needs is for people like us to get the news out. There needs to be more information for families.

I admire what you are doing and the fact that you survived this gives me hope. I worry not only for myself but for my sister’s children, my cousin’s children and all my first cousins. We are all at risk. We are a part of genetic research programs at both Cornell University and the University of

Texas. But, research is long and tedious and needs funding.

Anyway, I am a recently retired teacher, age 57, and I want to be able to make a difference in this. I want somehow to get the information out there to the general public.

Thanks for this site. You have inspired me.

Sincerely

Judy Cardamone

Contact Judy

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

Stan Loeb

Personal Stories: Stan Loeb

Dear Brian, and all of you brave survivors.

Four years ago my husband experienced a second episodes of shingles which weakened his immune system. We were scheduled to be on an Elderhostel and decided to attend. He was having trouble sleeping and his breathing was difficult. As soon as we got home I phoned our PCP, Neil Blair. Neil’s dad was our kid’s pediatrician and Neil and our older son had been classmates.

As soon as he saw my husband, took his bp, an EKG, he called 911 and zipped Stan off to the ER at Providence, ST. Vincent hospital in Portland. Stan was in great distress, but the cause was a secondary infection causing pleural pericarditis–the sacs around his heart and lungs had filled with fluid and causing his heart to struggle to beat and his lungs to be able to breath. But while testing him, they discovered that he had an ascending aortic aneurysm. It was not at a stage yet for surgery, but they watched it carefully and when It looked like it was getting into the danger zone it was repaired with the dacron apparatus

He was fortunate with this incident and that he was in the care of one of the best cardiac teams in the country–Starr-Wood. Storm Floten did the surgery–he has been the head of thoracic surgery at the Oregon Health Sciences University. Stan did very well after the surgery–but still overly loved his wonderful wines and good food. His blood pressure was hard to control in spite of taking calcium channel blockers, beta blockers, etc. and not exercising enough—He also often seemed angry.

Fast forward to May 22, 2004. We had driven to the coast–1 1/2 hours from Portland–to celebrate my birthday and enjoy the sea air for a few days. We were scheduled to have dinner with friends on Saturday night. Around 5:30 he suddenly developed excruciating pain and was looking and acting just like he had four years before. There are no nearby ambulances or cardiologists, so I piled him into the car and drove back to town to the ER at ST. Vincent–after all, his records were there and they did have excellent ER care.

His symptoms were terrible pain in his back just below the shoulder blades. The pain radiated down his back, into the kidney area, on to his buttocks and his right leg. He was wheezing for breath and his BP was high as usual. The ER staff pulled out all the stops to diagnose the problem, and the last test was a CT scan. It was 3 am and the ER doctor came in and said “we’ve found the problem and it’s quite serious. You have had a descending aortic dissection.”

The dissection was huge and Stan was immediately admitted to Critical Coronary Care. The cardiologist and surgeons explained the dangers of surgery–the worst being death, the less dire being a 30% possibility of paraplegia. They said that they had great success managing things medically–keeping his BP around 100/60. He was in CCU for about 6 days and then on the cardiac floor. I brought him home a week ago.

He’s very weak, a little confused, he had a bad reaction to hydralazine and had to return to urgent care to get a different med–clonipine. He also had to get an anti-histimine injection.

We see the cardiologist in a couple of days and hope we can find a way to tweak the meds so his bp stays more stable.

We are staggering under this second assault on his aorta and have no idea how long it might take for the tear and dissection to scar over or if he’ll ever be completely well.

By the way, I had a heart attack 5 years ago and CABG surgery. Stan is 71 and I’m 68.

Brian, I really grateful to have access to this site. I hope we can find ways to cope with this latest situation by messages with other survivors. Stan had read several articles by a wonderful writer with the WSJ.

It’s very late–time to get some sleep.

Update: 8/20/04

The miracles of science never cease to amaze.  For three months my husband has been on bp meds to treat an aortic dissection.  He was scheduled for a CT scan this month to check the healing.  Bottom line, not only was he not healing, he was reaching critical mass.    He complained of pain in the kidney area, weakness, and pain in the back.  We returned to the ER at St. Vincent hospital in Portland.  This is where he was taken 3 months ago.  Alerted to his current problem, the ER doctors did all the things you do in an emergency , including CT scans of the thoracis and abdominal area.  He had dissected more, was aneuristic and had signs that there was leakage.    After admission to the CCU, the surgeon who had successfully repaired his ascending aorta aneurism 4 years ago, told us that regretfully, he did not have the team in place to do the huge open reapair, so we were medivaced to Stanford University Hospital in Palo Alto, CA.  He was heavily sedated by this time and there was great concern that the aorta would rupture.    We were met by the intervention team headed up by Dr. Philip Oyer.  The team consisted of Dr. Conrad Vial, Dr. Kwon, the radioligist Dr. Daniel Sze and an amazing team of calm, positive medical people.  After a day and a half of evaluation, it was determined that Stan might be a candidate for a clinical trial using a stent made by the Gore  Co.  We held a sample of the stent and had our questions answered about his prognosis.    The implant was done the next morning and he also had a stent placed in his left renal artery because the blood supply to the left kidney was severly limited by the dissecttion.  Stan did not come out of the anaesthesia for 6-7 days and was not really coherent for another 2.  He was combative, thrashing about, unable to process talk, etc.  Most of this is a result of the heavy drugs he was given.    After he was stable, we were medivaced back to the hospital in Portland and kept there until his medications seemed to put him on the right track.  We brought him home a 2 days ago and he is slowly recovering.    This has been a dramatic, trying and amazing experience.  We can’t know where things will go from here–hopefully only upward.  But his cardiologist said they rarely see a dissection this bad.  He will be followed with blood teast, x-rays, CT scans on a specific protocol set up for the clinical study.  The stent has not yet been approved by the FDA.  But we were sent to the right place at the right time.  The trial will cover 100 candidates.  Stan was number 51.   New techniques are constantly being tested, giving much hope to people who experience this devastating and more often tha
n not, catastrophic event.  ER doctors, cardiologist and other medical people need to be educated about this condition.  We will do anything possible to save others the anxiety we have experienced.

Contact Joyce

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

Nancy Smith

Personal Stories: Nancy Smith

I believe I experienced an aortic dissection 3 years ago, as the result of a biopsy that hit a blood vessel, with subsequent hemorrhage and massive transfusions, pleural effusions, heart enlargement, etc.

However, I was incorrectly diagnosed with kidney cancer and given 3 days to 3 months to live, and shipped to another hospital.   These two weeks were hell. Somehow I knew this abrupt intense searing pain which came after the biopsy and before the hemorrhage, etc. was NOT cancer.  I already had a hematoma from a prior surgery (hysterectomy), which resulted in a mass finally “organizing” 6 months later.  It was THIS mass that was biopsied and ANOTHER blood vessel caused ANOTHER big bleed….THIS biopsy was MISDIAGNOSED…   Ugh. I sound like such a nut. It seems so simple, and yet the doctors staring at me in what appears to be utter cluelessness, doesn’t help.   While I am naturally glad I never had cancer, what happened??? I haven’t been “right” since. I believe in being responsible, taking care of myself however I can, and solving things, at least preventing a re occurrence.   Due to a casual indifference from the doctors, I am now seeking information directly from others that I may, like yourself.   Up until this past November, I had an increasing, SOB that was Misdiagnosed as TR failure.  Unbelievable. Helping my sister with a new baby this summer, my mother took me to her pulmonary doctor. I had only $50 and he asked to see my last scan of my heart/chest and he did some preliminary or basic lung function breathing test.   He ordered an x-ray of my heart, and then upgraded it to a chest-x-ray CAT with contrast. As Medicaid would not pay, my mother had me request Catholic Charities, who did help.   Okay. Sorry I tend to be wordy. I have had PTSD around this nightmare, and my ADD has been so much worse since this time (my hematocrit went far too low during this time of bleeding)   This Cat scan showing an “eclastic process of ascending thoracic aorta of 4.5 cm with fluid anterior to pulmonary window”  This was put in a highlighted fashion, and my mom’s doctor said to get back to Vermont right away to the treating cardiologist.   Back in Vermont, I got “blown off” again, told it is only my (increasing) anxiety. I asked for another opinion, the doctor diagnosed a heart murmur, and said come back in 3 years.   But this cat scan gets ignored. With rhetoric, not another test.   Also, the first cardiologist did an ex cerise stress test with radio-active substance, and determined that while exercising, my FE went to forty-something, and my risk of CAD went up to a high-percent (I don’t recall) due to a “transient perfusion defect in the apex of the heart.”   Naturally, all I got was yelled out for daring to look at my own records.   I am tired, still don’t feel right, am out-of-breath from moderate activity (not like I used to be), I have periods of laryngitis and difficulty swallowing which I have learned can be from an aorta if widening can press on another blood vessel and nerves going into the pharynx and epiglottis area, etc. This was a problem SINCE I left the hospital from the episode I wrote about above. For an entire year and 1/2 I am told this too is ONLY anxiety. Upon a recent swallowing study, the difficulty is documented as real, and I am scheduled for a neurology visit in 2 months. A neurologist will not consider aorta difficulty.   Thank you for listening. I guess I wanted to speak with someone, yourself, who might be able to relate, and to ask you if you have ever heard of a problem with the aorta being caused from a biopsy (I believe it hit the branch of the aorta where the aorta divides in the lower abdomen) AND if it is at all possible to have it go undiagnosed for 3 years.   Also, do you think it is conceivable that an identified “4.5 cm ectastic area with surrounding pericardial fluid” should warrant a true 2nd opinion?  I am beginning to hate myself, I just do not want to be a hypochondriac or to remain on a futile, warrantless goose chase. I am prepared to sell my home, to get some money for a proper check-up or referral out of this network.   I just turned 47 years old. It has been 3 l/2 years of problems SINCE this time. It has NEVER been “just anxiety.”    Brian, please forgive me for rambling.   I am going to send this off now.   Thank you.   Nancy Gallucci Vermont

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

JoAnn Delmotte Husband Story

Personal Stories: JoAnn Delmotte’s Husband

This is still very hard for me to even think about and yet my mind never seems to let go of what happened to my husband. On May 23, 2001 I came home from work about 10pm and my husband Joe was up and said he did not feel well, to look at him and hear him I said good thing you have tomorrow off so you can go to the doctor’s, you sound like you have bronchitis real bad.

I stayed up with him until 11:30 and said “I have to be to work by 6am I need to go to bed”. I kissed him good night and asked if he was coming “he said in a bit”. At midnight Joe woke me up and said something is really wrong take me to the hospital. When I turned on the light it looked like he was standing in the shower, that is how much he was sweating & he was so pale I could not believe it. We got him to the hospital, they treated him for a heart attack.

After several hours they called in a cardiac specialist because nothing was helping Joe. They had given him oxygen saturation at 100%,on 2 liters, GI cocktails and morphine, nitroglycerine with no significant improvement. The heart specialist told us he was sending Joe to another Hospital, he was in over his head, not sure what was happening. When we got to the other hospital they did a cardiac catheterization, they found a type 1 aortic dissection with 1+ aortic insufficiency.(said he needed emergency surgery).

They repaired and did a re-suspension of aortic valve and repair of right common femoral cannulation sight. During the surgery Joe lost 14 pints of blood and had a total circ arrest time of 21 minutes. These are all doctor’s terms. I can tell you, they came to me with a minister and said Joe would die without this surgery and that if I signed the paper work for the surgery he still only had a 10% chance of making it out alive, and if he did come through surgery he would suffer a stroke or brain damage.

Joe had a stroke on the table. But he was & is Alive…He is OUR MIRACLE!!!! The doctor’s had told me at the 21 minutes of circ arrest if they had to do a heart valve replacement they would just close him up, because you can only have 45 minutes of circ arrest and that replacement added another 2 hours on. During the surgery Joe’s femoral veins on his legs also collapsed, (they were so week) so a doctor worked on that end too (they were trying to get a graft from his leg veins and that went wrong also) Joe went to the intensive care unit in critical condition and was there for 3 weeks, he was on tube feedings and a ventilator, a staff infection set in.

They had not expected Joe to make it through the night. But he did..after he started to improve they moved him out of ICU, and started all kinds of therapies. The doctor’s said while Joe was in the hospital they found out he had sleep apnea (450-500 episodes a night) this is where you quit breathing at night and when your body starts back up your blood pressure shoots so high, but can be normal during the day.) Joe did not show the signs of someone with sleep apnea-tired and needing naps all the time.

The doctor’s said all them years of so many episodes at night made his veins weak so they gave out. He is now on a c-pap machine at night and meds. for blood pressure + beta blockers). It has been a very, very long road for Joe, Myself and Our Children. But we live one day at a time and Thank GOD for OUR MIRACLE. There are questions we would like to ask but are not sure we want the answers, so we leave them unsaid and enjoy each other every single day..

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Kim Adams

Personal Stories: Kim W.Adams-By Jeff Hurt

My name is Jeff Hurt and I am using my partner–Kim W. Adams–of 19+ years’ account to post some info. The day before Thanksgiving 2003, Kim had an aortic dissection followed by a 10-hour surgery, six days on life support, ten additional emergency room visits after the surgery and three more additional hospital stays. Kim experienced a host of complications and today all his doctors say he is a true walking-living-breathing miracle. Kim’s an RN-case manager and works for Dallas County Parkland Hospital which is also a teaching hospital for University of Texas Southwestern Medical School. I will let Kim eventually post his story and then I follow up with a view as a family member and caregiver. The main reason I am writing today is to address a side effect–cognitive processing deficits–of the open-heart surgery used to correct the aortic dissection. Five and half months after Kim’s initial dissection, Kim’s health is great. Aside from the frequent back and chest pain from the surgery, he is doing well. He tires quickly and easily but the biggest challenge facing us today is the setbacks from his cognitive thinking and processing. Kim’s short-term memory is poor and he often has challenges with word finding, expressing himself, multi-step tasks, normal coping skills, poor judgment, loss of inhibitions and other normal thought processes. Stress exacerbates the problems and work has been somewhat difficult at best. Some of his doctors think he went back to work too soon and we are now waiting for test results concerning his brain to see if he should stop working for a while. We were unprepared for this side effect and have since learned that this is rather normal for anyone who has open-heart surgery. Some of the docs lovingly refer to this side effect as “Pump Head” because of the time spent on the lung and heart bypass pump. Short-term memory loss, mood swings, difficulty focusing and intensified emotions are some of the traits associated with “Pump Head.” At first, Kim was unaware of his deficits but eventually came to realize that he had some challenges with his brain. Three weeks ago, Kim spent two days in neuro-psychological testing in hopes of identifying the problems and finding ways to deal with them. The Neuro-psych doc stressed that Kim’s challenges are common for people who have open-heart surgery and could last for up to two years after the surgery.

This doc further stated that current research showed that those who did not have immediate symptoms experienced similar challenges five years after the surgery. We will receive all the results next week and are anxious to have a medical diagnosis. Then we can officially start making the necessary changes to our lives to adapt to these new challenges. For a long time after the surgery, I was not sure that Kim was the same person I had known for 19 years. He looked the same and sounded the same yet he acted very different. In today’s world, change is the one constant but when it is in your own household, with the family you love, it is still hard to embrace. I have titled this portion of our life together “White Water Rapids Change” and decided just to enjoy the ride. If I get soaking wet from the river ride, it really doesn’t matter. Life is a journey and when you’ve seen and faced death, nothing else really matters. We have a saying in our home, “What’s the worst thing that could happen at this point?” Death? Well, our faith rests in a higher power and for us that is just a crossing over to the other side. Yet, deficits of the mind were one of those challenges we never thought would happen. We have not come this far to give up. We will get through these hurdles and will make whatever changes to our lives are necessary so that we both can experience “quality life.” I primarily wanted to share with folks that once you clear the hurdles of diagnosis, successful surgery, the correct balance of meds and some semblance of a normal routine again, there may still be another unexpected challenge staring you in the face: “Pump Head” or deficits with normal cognitive brain processing. Face those challenges with the same tenacity as the aortic dissection, one day at a time.

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

Howard

Personal Stories: Howard

Brian,

I am a survivor of an aortic aneurysm in 1990 due to Marfans. Thanks to my surgeon I have had nearly 15 healthy years thanks to a dacron graft and valve re-suspension (own).

I still am being monitored, and have just found out that dacron can dilate, so my post operative measurement was 4.8, but varies between 4.6 to 4.8.

I am amazed at how I live a completely normal life playing tennis twice a week, yet always at the back of my mind the worry of further dilation or the dreaded rupture.

I recently had a daughter who thank god does not carry the gene. We would love a second child, but are we chancing our luck.

Cheers,   Howard

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

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