Category: Forties

Jacqueline Davis Husband-48

Personal Stories: Roger Davis by Jacqueline (his wife)

Hi Brian,

My husband, was diagnosed with Aortic Dissection on September 4, 2007. He was actually sent home with a diagnosis of constipation. When the pain just got too much for him, I rushed him back to the ER and miraculously!!! Someone thought to run a test ( I dont recall the name) that they stated led them to believe that he had an Aortic Dissection and he was rushed to the nearest University Hospital, there he was diagnose with Type B dissection.

Since, that time he has been monitored twice by the attending physician, at the University (once a few weeks after discharge and then two months, later) and by the local hospitals Cardiologist (about three times in the last fourteen months). What concerns me is that they dont see him regularly, he has only had blood tests done three times; a chest x-ray twice since his initial hospitalization, and the cardiologist schedules his appointments in 3-4 month intervals. My husband is self-monitoring his blood pressure and it fluctuates from being higher than ideal 143 to 135 (systolic), mostly it regulates between 120 and 130 and 90 to 41 diastolic, on a bad day.

The cardiologist will change his medicine without even seeing him in his office and takes his time responding to his calls. My husband is not totally without out fault, since he was told that it was imperative that he lost weight and initially, at the time of the dissection weighed 407 lbs,  as a result of the hospital stay he lost 40 pounds but, has gained fourteen of those pounds back. He has a history of high blood pressure(2007), a hx of a fracture of his right patella, fracture of the left patella and compound fracture of the right ankle (2000). Between the period of the year 2001 and 2007, he had limited function capabilities with occasional walking, no climbing stairs or ladders, couldnt balance, squat or crawl. With restrictions of lifting of no more than 30 pounds, rarely up to face level and couldnt push or pull with a frequency of more than 66-74 pounds.

Due to financial constraints and the inability to get his disability he had taken employment as a certified nursing assistant at a Mental facility. Needless to say he was  not taking his blood pressure medicine before the dissection, because he was asymptomatic, or so he thought. Which, is the worst thing to do when you have been prescribed blood pressure medication. Also, there are times that, even now, he does not take his medicine more than once a day or on a good day, twice. Due to the fluctuating blood pressure levels and the symptoms of sweating, high/low blood pressure readings, and general dizziness.


I have wondered about the fact that he has a very unpredictable electric blood pressure monitor that runs on batteries and is not tested by anyone. The model is WelchAllyn.  What is a more reliable blood pressure monitor? Most of the time he feels as if, his blood pressure is too low. Especially, after taking his medication.

I have been a licensed practical nurse for over 18 years and the whole treatment of his condition alarms me. Patients that I took care of in the nursing home, got better treatment and we have private insurance. The Doctors, initially prescribed Clonidine, diltazem ER, hydrochlorothiazide, lisinopril, hydralazine, colchicine (gout), and a nitro patch for Type B dissection, Hypertension, Excess BMI, Obstructive sleep apnea, and Glucose intolerance.  He is only able to wear the nitro patch for short periods of time, but if he completing eliminates it his blood pressure gets too high and he begins using it, again.

I am concerned even more because of the fact that, his cardiologist has changed his medication so much, I dont even know what he is really supposed to be taking at what time and at what dosage and I doubt my husband does, either. He is told that they are doing everything that they can and he should be lucky because no one else has ever survived. This, of course, was condescending and not at all helpful or hopeful. So he basically, takes as much or as little as will get his blood pressure within normal range, and that scares me to know that that is the best care that he can receive.   I wonder about the long term effects of taking all these medicines; kidney failure, liver damage, stroke, aneurisms, and the onset of depression.

What can I do? Is there some way to combat this nonchalance, cavalier attitude by our physicians. I know that he would try harder to exercise or manage his diet and find some purpose in life, if the Doctors had not left him feeling like he was without options. Can he have the Abdominal bypass surgery to increase his limitations and thereby, improving his condition? What can you find out?

Urgently awaiting your reply,

Jacqueline Davis

Andres Story-46

Personal Stories: Andres Story

Hi, I am a 46yr old male that was diagnosed with abdominal aortic dissection on 5/04/08. Pain in the lower back and abdomen caused me to go to the ER with what I initially thought was a kidney stone (since I’ve experienced one of those).


The hospital kept me for observation for 3 days while administering BP meds. Last Friday I met the vascular surgeon from the hospital. He indicated that the it could be managed with BP meds and that the location of the tear was not near the renal arteries while the circulation to my legs seems good (strong pulses no tingling numbness). He would only recommend surgery if gets larger. He did say that it was small but couldn’t tell me the size (cm). Just as a precaution I am going to get a second opinion. It’s now almost three weeks and I’ve been getting adjusted to the meds (usual fatigue, some dizziness, etc). I asked the vascular surgeon about physical activity and his response was fairly vague. “You can do some lifting 20, 30 lbs. but not 100’s”. Also keep “stress situations to a minimum”. I have always been active in some shape or form most of my life. Athletics in HS and college, strength and cardio training etc. Prior to the AD I was doing 30-45min cardio 3x/wk and strength/cross training 5x/wk. I feel good but I’m definitely confused as to what’s next in terms of maintaining overall health. Any insight or information you can provide would be of great assistance.

Contact Andres

Lisa Tejadas Husband-43

Personal Stories:  Lisa Tejada’s Husband

Brian, this site has been very helpful to my husband and I. Here it goes, In December 2004,my healthy, athletic, non-smoking husband had an acute type A and B aortic dissection. He also had an aortic valve aneurysm. He is only 43, and has mild hypertension diagnosed 5 years ago. He also has a family history of various types of cardio and vascular problems.

After 3 visits to different E.R.rooms, they finally did a cat-scan and found the dissections. He was rushed to Loma Linda University Medical Center, for a life saving surgery, they could not believe he was still alive after being so acutely dissected. During the 6 hour surgery, he had a Bentyll Procedure placed in the ascending aorta, and a titanium valve replaced for the aortic valve. He came out of surgery like a champ and was sent home7 days later.


Since December, it is now June, he has been in and out of the hospital many times for various issues and severe pain. He is dissected from his brachiocypyllic trunk, down is aorta, down thru his lilacs, and into his thighs, and just last week, we were in the hospital again and found out is carotid  arteries are now dissected, but luckily blood flow is great.

We cannot find any answers to really how severe he is, it is like pulling teeth from these “specialists”. Have you known about anyone dissected from head to thigh, with a titanium valve? What can we expect? Is there a M.D. out there with some info? He is always in pain, and always tired. We monitor his bp, his diet, but he does not seem to be improving much.

His chest, back, right thigh always seem to be hurting him. He went back to work 3 months after surgery, we thought by now he would be making a little improvement, and none of his doctors are very helpful at all. I am just looking for some hope, we have 3 small children, he is just the best father and husband anyone could wish for. If anyone has any input or a similar story, we would appreciate it. Thank-You,

Lisa Tejada

Lisa Tejada-43

Personal Stories:  Lisa Tejada

Brian, this site has been very helpful to my husband and I. Here it goes, In December 2004,my healthy, athletic, non-smoking husband had an acute type A and B aortic dissection. He also had an aortic valve aneurysm. He is only 43, and has mild hypertension diagnosed 5 years ago. He also has a family history of various types of cardio and vascular problems.

After 3 visits to different E.R.rooms, they finally did a cat-scan and found the dissections. He was rushed to Loma Linda University Medical Center, for a life saving surgery, they could not believe he was still alive after being so acutely dissected. During the 6 hour surgery, he had a Bentyll Procedure placed in the ascending aorta, and a titanium valve replaced for the aortic valve. He came out of surgery like a champ and was sent home7 days later.

Since December, it is now June, he has been in and out of the hospital many times for various issues and severe pain. He is dissected from his brachiocypyllic trunk, down is aorta, down thru his lilacs, and into his thighs, and just last week, we were in the hospital again and found out is carotid  arteries are now dissected, but luckily blood flow is great.

We cannot find any answers to really how severe he is, it is like pulling teeth from these “specialists”. Have you known about anyone dissected from head to thigh, with a titanium valve? What can we expect? Is there a M.D. out there with some info? He is always in pain, and always tired. We monitor his bp, his diet, but he does not seem to be improving much.

His chest, back, right thigh always seem to be hurting him. He went back to work 3 months after surgery, we thought by now he would be making a little improvement, and none of his doctors are very helpful at all. I am just looking for some hope, we have 3 small children, he is just the best father and husband anyone could wish for. If anyone has any input or a similar story, we would appreciate it. Thank-You,

Lisa Tejada

Jeanne-48

Personal Stories: Jeanne

Hello Everyone

I’ve been trying to write my story since I found out about this web site last August. Ridiculous as it might sound I still have a hard time thinking & talking about it. My dissection happened in Feb. of 2002 & it was Type B so I didn’t have surgery.

About a week before it happened I had gone to the Dr. to start my physical. For the first time since I was pregnant my blood pressure was a little higher than normal for me. The dr. wasn’t concerned but she gave me some BP pills to offset any problems. My upper back started hurting but I just thought it was another getting older ache.

Sunday night my back was hurting & I had a headache which wasn’t unusual. I took my pain pills & started to get into bed. At that moment that I bent down it felt like my whole back exploded & I felt the most excruciating pain that I’ve ever had, plus I had trouble breathing. My daughter heard me & rushed into my room then she called 911.

I was praying to pass out because it hurt so bad but I wanted to make sure I told EMS that I had factor 5 (that’s another story) & to try & keep my daughter calm.

By the time I got into the ambulance I went in & out of consciousness. My daughter told me every time the EMS driver went over a bump I screamed in pain. They arrived at one hospital & luckily the ER Dr. knew what was happening to me. That hospital was not equipped to take care of me so other hospitals & a helicopter were called.


I woke up Tuesday afternoon not knowing anything. My family tried to explain what happened but there was so much morphine & demerol in my body that I couldn’t understand or focus on what was being said. Plus I lost a kidney. The doctors told my family that it would heal on its own but that the healing would be a long & painful process. So far that’s almost the only thing they’ve been right about.

Needless to say that was the beginning of a total change in my life. I’m so very thankful that I survived it but I’m still having a very hard time adjusting to everything. The excessive weight gain, the lack of activity etc…….

Obviously God isn’t finished with me yet because this is the 3rd time he’s given me life. Once when I was born, I almost died when I had my daughter & with the dissection. I just wish I could figure out what my purpose is.

From reading other stories, I see I’m not the only one with depression & frustration. But yet we are survivors & very grateful for each day we wake up.

Also the more I find out about dissection it doesn’t seem to be as rare as the doctors make it out to be. More needs to be made known about this illness.

There I finally did it. Thanks for reading this.

Jeanne

Anthony B.-40

Personal Stories: Anthony B.

I’m new to this website and am happy to have found it. When I first experienced my aortic dissection back on December 1, 2003 I could find very little info on the subject. I had never heard of the condition. I know so much about the condition now that I could probably write a book. Anyway, my story begins on 12/1/03 while working as a dock worker, loading and unloading trucks. I was in the process of unloading 250 lb. metal rods from the truck to the dock when I began to sweat profusely and had some pain in my back and in my chest. I thought if I could just ‘sit it out’ in my car I’d feel better.

When I got to my car the pain intensified everywhere and I could barely move. I couldn’t make it back to the dock, so I ended up driving myself to the nearest hospital. Lucky for me the hospital had a trauma center, or my condition might have been misdiagnosed as happens in so many cases. I was scared, thinking I was having a heart attack, or what I thought a heart attack must feel like. After being seen by numerous ER doctors a specialist was called in and tests were done and I was told I had experienced an aortic dissection (descending, type B). My BP was through the roof. I had never had high BP in my life. After I was stabilized I was transferred to the ICU and monitored round the clock.

The next morning I spoke with the Thoracic surgeon who diagnosed my condition and he went through the steps for treating my condition, which consisted of BP medications (Metroprolol, Enalapril, HCTZ), potassium, aspirin, Vicodin, Oxycontin and Oxycodone. The plan was to treat me medically, no surgery in the near future.

I was in the hospital for 8 days and was sent home to rest. No strenuous anything – lifted nothing heavier than a gallon of milk. My doctors continued to monitor my condition for about six months. I was told that the tear in my aorta went all the way down into the Illiac artery in my legs. I experienced numbness in my right leg off and on. At the six month point a CAT scan showed that the tear was expanding and surgery was my only option.


On June 22, 2004 I endured a 8 1/2 surgery to replace a portion of my aorta, about mid-way down. The doctors didn’t want to go lower, because of a chance of paralysis. I was in the hospital for 7 days following surgery. I was like a newborn baby — couldn’t do anything for myself. I could barely walk, was hurting in and around the 16″ incision which extended from below my shoulder blade to the front of my stomach. I had 2 chest tube ‘holes’ which also caused me pain.

Thank God for my wife…she had to clean and bandage everything for me for weeks, in addition to showering me, helping me eat, giving me my meds and helping to stabilize me when I attempted to walk. I got winded easily (and still do). I am ‘healed’ up now, but still face days when I struggle just to get out of bed. I sleep off and on most days and my energy levels have dropped. I also now have chronic pain and am being treated by a Pain Management clinic. I wear Fentanyl patches for 72 hours at a time.

The doctors say I have nerve damage as a result of my surgery, which will more than likely never go away. During the aortic replacement my left side vocal cords were paralyzed, so I’ve had 3 surgeries to repair them. For some strange reason I also lost 50% of my hearing in my left ear, which no doctor can explain. I had been tested prior to the surgery and had perfect hearing. I’ve gained about 30 pounds since this all happened due to the inactivity. The most recent CAT scan shows the abdominal section of my aorta is now expanding, though slower than the upper section had.

I am facing another surgery within a year to replace the abdominal portion of my aorta. It is riskier, because we’re dealing with the chance of paralysis when the legs are involved. The doctors say they may put a stent in there or have to replace that section…they won’t know until the time comes. I haven’t worked since 12/2003 and am in the process of trying to get Social Security benefits. I have been turned down once already, but have just re-applied. I think the fact that I am only 41 years old may have something to do with the SS Admin.’s decision to turn down my request.

If any one of those SS workers spent a day in my shoes, they’d see things differently. I am thankful for a supportive wife and family. I am lucky to be alive and I thank God and my lucky stars every day. My life has changed completely. I use to hold down two jobs at a time and now I have trouble holding a couple of books! I still drive, but sometimes the meds prevent me from getting around due to tiredness and fatigue.

Seems every aspect of my life has been affected. My moods fluctuate from good to bad. The pain patches don’t work 100% of the time, so I’m having to deal with constant pain and discomfort. Thanks for reading my story. Felt good to share it with people who understand what I’ve been through.

Contact Anthony

Jennie Logsdon-Martin-44

Personal Stories: Jennie Logsdon-Martin

Hi everyone! My name is Jennie. I’m a fishing addict who had a Type B or a DeBakey Class III descending aortic dissection December of 2004.

The doctors say no more fishing for salmon and steelhead, but guess what? I caught a steelhead last week. I just keep telling myself to breathe… and to do it with less gusto. Amen! We all have to decide how much we can take, and what is worth risking.

I’ve been through four major surgeries in as many months. I’m hopeful although I, too, feel like a walking time bomb sometimes. I think of life differently, now.

There is a difference after something like this that no one but us can understand. We have an appreciation for life that is only bought by this unfortunate experience. It is a gift, really, but one that comes at a very high price.


I am the owner of a large fishing website, (http://www.ifish.net) and  thankfully, the folks there have kept a pretty accurate journal of what I went through when I was unable to write my own journal.

It begins with the announcement, here: (This is long, but it sure raised my spirits when I read it, in the hospital!)

http://www.ifish.net/forum/showflat.php?Cat=&Board=UBB1&Number=694272

and continues with a “locked” thread that shows my medical updates.

http://www.ifish.net/forum/showflat.php?Cat=&Board=UBB1&Number=696202

When I was finally able, I resumed my own online journal which I have been keeping for over five years, now.

http://www.ifish.net/Jennie.html

The dissection part starts with December 27th, 2005 continuing to the present… I’m still healing!

This whole experience has brought me much closer to my creator. The miracles I have seen have opened my eyes to how closely He watches over my family and I.

I have Marfan Syndrome, as does my 17 year old son, Andrew. I was a spontaneous mutation. I have had many other medical problems, and I kept a journal also on the long involved story of trying to “fix” my eyes.

It is posted, here:

http://www.ifish.net/caseyeyeinst.html

I never did get my eyes fixed totally, but right now I figure I can live with that. I’m just not in the mood for another surgery, especially with all the Coumadin issues I would have.

Besides, I feel like I gained some vision throughout my dissection experience, that cannot be “seen” with the eye.

I wish you all the comfort of knowing that others have gone through this experience, and that reading these stories will make you feel less alone in this world. I know that reading them myself has helped tremendously.

Thank you, Brian, for this site!

Jen

——————————————

The goal in Life’s Journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out, shouting “holy moly what a ride!”

Don-49

Personal Stories: Don

The Dr. gave him ,I believe, Demerol, when that didn’t work, they decided to give him Morphine for the pain, Don had so much pain, it was hard for him to lay still. They decided to give him a CT scan, while they were waiting for it to come back, they gave him 2 baby asprins and 2 nitro pills,

and then hooked him up to an IV of Heparin.I believe during all this, they were also trying to get his BP down, I remember the bottom number being 108, but I’m not sure what the top number was.

When the CT scan came back with the Aortic Dissection results, they immediately stopped the Heparin IV. The Dr. came in and told him the diagnosis, and that he would have to be life flighted to UPMC Presbyterian Hospital in Pittsburg, Pa. and have surgery to correct it.

When I arrived in Pittsburg and got to the ICU unit, The Drs. there, including the surgeon’s, had decided that surgery wasn’t an option at that time because the dissection was to close to his spinal cord, and would most likely cause paralysis.


Don was in the hospital for 5 days, until they were able to get his BP under control. He was discharged with instructions to get a BP monitor and to take his BP 3 times a day, along with 600 mg of Labetelol, and was told to stop smoking, limit his alcohol intake to no more than 2 a day, watch his salt intake and no heavy lifting. He was to have another CT scan in 3 months with a follow up with the surgeon from Pittsburg.

On January 11,2005 Don had his CT scan. He was called the next day to have it taken again. He was informed that the dissection

was leaking and was slightly larger. We still don’t know the size of his dissection. But, they did mention an aneurysm. We’re kind of in the dark here. We can’t seem to get answers to our questions. The Drs. all act like it’s no big deal? But from what we’ve read, we think differently.

Don has his follow up appointment this Thursday the 20th of January and we were hoping to find out a few things then.

If you know of anything that might benefit us, please let us know. We will keep you informed.

Thank You, Don & Bert

Lance Shaw-40

Personal Stories: Lance Shaw

My name is Lance Shaw.

When I awoke on the morning of November 8, 2004, I was a chain-smoking, alcoholic, type-A, working between 64 to 72 hours a week. I liked both my coffee and tea, strong and dark. I work in an Oil Refinery in Northern California. I, and a team of others, were in the process of building a brand new unit along with making major upgrades to every unit in the facility. At best, it is an incredible undertaking in emotionally environmental Northern California.

Communities; people need to be reassured that the products you make, won’t go boom; the materials you use, won’t wind-up on their neighborhoods, homes, cars … their children. I had worked with some of the most talented minds and individuals within the company.

I felt out-classed, out-gunned and out-manned. I had become hypertensive, sedentary and mildly obese, over the two years that we had worked on this project. But, the finish line was in sight, the company would bring in more people into my area and I could delegate a lot of what I did, much of it was pre-planned, pre-written and already in-place.

I could finally cut back on my hours and schedule that appointment about my blood pressure that I had been putting off for God knows how long … and all that changed that morning.

I, and my partner, a Health and Safety / EMT responder, were going around to the various sites, ensuring that everyone had all of their required permits to work … with a workforce of 800 people … everyone would be covered from an administrative and more importantly, a safety standpoint.


My partner and I, were the perfect compliments to each other … He is a former operator and I, a former EMT … we counted on each other for support and information … I always trusted him to make the right call when safety was concerned and that morning he didn’t let me down.

We got started at 6:30 and by 7 am; we were visiting the third of six sites we would be at. We were making great time, but man … I didn’t feel right. I just gotten over a cold the week before and my lungs felt odd. It didn’t help that I didn’t quit smoking while I was infirmed. I had a smoke while waiting for a construction crew to show up for sign-on and that made things worse … first, it felt like mild indigestion … by the time we had reached the fourth area, I had mild discomfort behind my collarbone … but this was way wrong … it was behind both my right and left sides, like it was on the tops of my lungs.

The irritation was alleviated somewhat when I crossed my arms in front of me and pressed back on my collarbone. At the next group site, irritation had given way to pain, although it was still mild … 3 on a scale of 10, but it had changed to the feeling that two hands were on top of my lungs pushing down, like I could not get a full breath, even though I was now breathing deeply.

My partner noticed and commented. I just said, “I need to get back to the office and take an aspirin and everything will be alright …” Although, even the idea of taking an aspirin for what I was feeling didn’t seem as if it would help …

As we reached the last group, my partner asked me again if I was all right. “Hell no, I’m not … I’ve got pain in my back now, just above my kidneys … like I’ve been kicked … my lungs are on fire …” He said we should just go back to the office. He said, “Man, you just ain’t lookin’ right …” He also said the crew could wait …

Once at the office, I took an aspirin and now the pain was more intense … still across my back … I asked my partner to just give me a minute for the aspirin to kick in and he said we should go down to Howard’s office (volunteer firefighter/EMT) until it took effect …

At Howard’s office, as Jim asked him to look me over, he noticed right away the color had drained from my face and I had begun to shake. Jim, my partner, asked Howard to be first responder and begin an assessment of me. My pulse was 130 and bounding … I told them all of my symptoms and that now I could not find a position of comfort … Jim activated the Refinery EMS by calling “Man Down.” An ambulance was called and I was taken to hospital.

Although the ER did what they could, I credit a series of people and the sharing of information that saved my life that day. My wife, Sandy, because the ER wasn’t giving her any information on my condition other than, it wasn’t a heart attack and they were managing my pain. She thought they weren’t doing enough to find out what the problem was, instead of just medicating me.

She called our Union’s Grievance Committee Chair, Debbi Wimer, who is also a family friend, to see if there was anything she could do … Debbi called my supervisor, Lee Whitney, who contacted the company physician, Dr. Sorenson. Dr. Sorenson, after hearing of my symptoms and vitals, fourth hand, stated that I either had an aneurism or an aortic dissection. He contacted ER and had them perform a CAT scan. That is when my dissection was discovered. Type III, I believe.

Today has been what I call, “A Bad Day.” It’s been less than a month after my diagnosis and the severity and enormity of what has happened to me has just sunk in. I was awakened by a nightmare that the dissection had spread and my kidneys were failing. I’ve been depressed and anxious with no appetite all day and have been pondering if I may have to take anti-depressants as well.

As I see my children (ages 6 and 3, with another one on the way) in the next room … I wonder, what does the future hold us?

My cardiologist assures me that if I follow the plan: No smoking, alcohol, caffeinated drinks, get mild (walking) exercise, make some dietary changes … everything will be fine. With proper monitoring and management, I have been told this can heal and God willing, it will.

I am extremely grateful  to Brian for having a site such as this where survivors can share their feelings and experiences.

Contact Lance

Carol Martin-Buck-49

Personal Stories: Carol Martin-Buck

DYING WOULD HAVE BEEN BETTER THAN SURVIVING

I can’t believe that 2 1/2 yrs. after my aortic dissection I would feel that dying would have been better for me than surviving. My life today is a pure hell of pain, pills, depression, and the daily knowledge that one day one or both of my aneurysms will rupture. I am a single black female, aged 49 at the time and I live in Albany, GA. Here is my story.

On 1/14/02, I was attending a business meeting in Jacksonville, FL. At about 8:30am while talking w/co-workers, I suddenly couldn’t talk or breathe. It felt like an elephant was sitting on my chest. Then the ripping sensation and ohhhhhhh the pain. It was unbearable! Everyone acted fast in getting me down to the floor, comfortable (clothes loosened, fanning, etc.) and 911 called. I am told their quick action saved my life. The ambulance was there in what seemed like minutes and I was on my way to Shands (a teaching hospital) in FL. I stayed in the emergency room till almost midnight and occasionally was given something for pain. A co-worker had accompanied me, they told me but I don’t remember. I remember seeing my mother some time that night (she had arrived from Detroit) and that’s it. The next week was a blur. I was in CICU. Heavily medicated to lower my blood pressure and relieve pain. A couple more days and I was moved to a regular room where I first heard the words “aortic dissection.”

The diagnosis and a course of treatment was explained to me. My dissection had just stopped in progress. They didn’t know why. Surgery was not an option at this time due to the size and with considerable risk of paraplegic and/or the loss of a vital organ. Medication would be the course of treatment with a focus on blood pressure management.

A few days later, I had a follow-up CT scan and was told I could go home. Several of my family members (nieces, cousins, aunts) had arrived earlier from Macon, GA and along with my mother I was discharged. I had developed a severe pain under my left breast and in my left side. This continued when I was discharged and no one had an answer for it. The day after arriving home, I received a call from one of the doctors inquiring about the pain. Yes, it was still there and yes, it was getting worse. He advised me that the latest CT scan, which wasn’t read before I was discharged, showed what they thought was possibly a fluid leakage. To be sure that it wasn’t a further rupture, I was told to go to the nearest hospital and explain the situation with a request to contact Shands. My family and I left my house immediately. We arrived at Phoebe Putney Memorial Hospital in Albany at about 2:30p. At around midnight, I was life flighted out to Shands in Gainesville, FL. where they had a bed in CICU. For about another week, everything was a blur. I was heavily medicated again to lower my blood pressure. A few days later I was sent home.


My blood pressure is hard to control and the pain was continuing. Within a few weeks I was back in the hospital. This time the Medical Center of Central GA. which is in Macon. About a week in CICU and a few days in a regular room. Again no surgery but a different menu of medications.

After 4 months, I went back to work only to land back in the hospital after 3 weeks. My blood pressure was 200+ over 120 when I arrived at the hospital one night after work. I spent 5 days in CICU and 5 days in a regular room. Each day my pressure was high until finally another new menu of drugs brought it down. For the next 15 months I tried working through the pain, affects of meds, stress, the high BP readings, etc. I had learned to take my blood pressure and did so 3 times a day. At work I cut back on my hours at first but then fell back into my workaholic tendencies. On 10/27/03, I called it quits at work after 31 years. It was a hard choice to make but I physically couldn’t keep going.

I filed for social security disability in January, 04. My doctors (I have a Nephrologists, Internist, Thoracic & Cardiovascular Surgeon and a Pain Mgmt. Doctor) and I were all surprised when I was approved in May. My first review is scheduled for 5 to 7 years. I truly hope that in 5 yrs. this will be all over for me.

As of my latest CT scan on 8/13/04, my thoracic aortic dissection extends the length of the descending thoracic and measures 4.8. My abdominal aortic aneurysm is 4.7 with extension into my right iliac artery. The scan indicates that both are stable.

I have gone from zero pills a day prior to my dissection to 15 – 20 pills a day. I am on the following meds:

Atenolol 100mg 3 times daily

Lisinopril 20mg 2 times daily

Indapamide 2.5mg 1 time daily

Clonidine .2mg 3 times daily

Protonix 40mg 1 time daily

Tiazac 360mg 1 time daily

Cozaar 50mg 1 time daily

Crestor 10mg 1 time daily

Zetia 10mg 1 time daily

Paxil 40mg 1 time daily

Lorcet 7.5/650mg whenever necessary

Temazepam 15mg 2 at night, whenever necessary

Nitrostat .4mg whenever necessary

I was a workaholic (6-7 days, 60+ hrs. a week) as a retail executive. I suffer continuous pain under my left breast, lower back, left shoulder blade, and buttocks. My right leg swells constantly and I have difficulty walking any length. I have a hard time concentrating and sleep a lot due to the meds.

I repeat how I started my story, dying would have been better than surviving.

Contact Carol

Kathy Charests Husband-43

Personal Stories: Kathy Charest’s Husband

As I read through everyone’s stories I just want to say my heart goes out to all of you. I’m grateful to you, Brian for creating this site and to all of you who like me are living with fear and heartbreak.

My husband is 43. Two years ago he was diagnosed with Cardiomyopathy (heart failure from a viral infection). After about a year on medications he went down hill so fast that he was referred on to a University hospital for a heart transplant evaluation.

In June 2004 my husband received a heart transplant. He had been hospitalized in May and was kept on life support (LVAD) until the generous gift from a donor matched his blood and tissue type. It was like the most overwhelming, joyous, sad (for the donors family) day of our lives!

After 9 hours in OR my husband came out of surgery, only to go back for another four. Within the next 24 hours we were told that his aorta was dissected. Since he had been kept alive with first a balloon pump and then an LVAD and then, had a transplant within a short period of time it still hasn’t been determined if this was caused by so much surgery or what.


The next news was much worse. After 6 days on the ventilator he hadn’t urinated and when they were finally able to do a CT scan they found that the dissection had gone all the way through the renal arteries and had blocked the blood flow to the kidneys. The kidneys were severely damaged, they put stints in both sides and slowly, with much help from diuretics and dialysis his kidneys responded. He finally came home after almost 50 days in the hospital only to return two weeks ago in end stage renal failure.

To say we are both depressed is an understatement as we found out this week that the dissection has torn so far down that he probably won’t be able to get a kidney transplant. They don’t think there is any place to attach the kidney to get blood to it. I spend everyday at the hospital since I think I’m the only thing that keeps my husband going. He’s depressed, scared of what’s to come, what to do and like you all just waits. He takes tons of high blood pressure meds and after reading all of your stories I now understand why he’s always complaining about how bad his legs ache.

We need advice, please tell me about surgery, where, when any and all info is greatly appreciated. I myself have to go back to work in 5 weeks and I don’t know how I’ll focus knowing he’s all alone. Our daughter is 15 and has been our saving grace, the best part of both of us, she keeps us going.

I wish all of you the very best, thanks for reading our story and thanks again Brian for giving us a place to talk and great information!

Contact Kathy

Tim Bailey-48

Personal Stories: Tim Bailey

Brian,

My husband, Tim, had a dissection of the aorta in October. He was not properly diagnosed for it for an entire week. He had visited his doctor with shortness of breath, prior to that he had a vicious pain in his back that was at first diagnosed with being a back muscle spasm.

We live in a small rural town, so we understand that they had difficulty diagnosing him properly. He is 48 and never been in the hospital for anything prior to this. He is now considered a walking miracle. We are very thankful to God for sparing him


I was glad to find your site as I still continue to worry about his health and the damage this may have caused to his heart. He was out of the hospital in 4 days, and back to work in 6 weeks. Any information you may have about rehabilitation would be very helpful.

Thank you for what you are doing.-Janie in Iowa

Contact Tim

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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