Year: 2008 Page 1 of 9

December 17th, Snowing and cold

It’s my brother’s birthday and I just got off the phone with him. It’s nice to have such a wonderful brother. I strung a racket today with my new   I really like it! I even put up a website about my new stringer! I am hoping to actually play some tennis tonight, granted it’s snowing, but I am thinking I’ll take the Expedition out and I like driving in the snow!!! I got a call from one of my best friends and it was nice to hear from Paul. He’s been with Nordstrom for 23 years! The new job is going well and I really like my new friends I work with and the company. I am now on some new medication for my cholesterol and having to take an additional medication for my high blood pressure at night.  I have to wait 2 months then get it re-checked. My son keeps bugging me about my chin and tummy and he thinks it’s funny.. but I don’t! 🙂

Happy Holidays!

Brian

 

Sunday… A great day!

It’s a beautiful sunny day here in Everett, WA!  I am watching the Sea-hawks and the Redskins game and decided to write a bit. I have just finished publishing my 187 personal story on my website. You can read all the stories here.  You can also join the Aortic Dissection Forum and read stories as well as chat with other survivors. That link is found here.

I can’t believe that Halloween is over and this week it’s Thanksgiving already! Wow.. time is flying. Speaking of Halloween! My daughter was a candy corn princess and my son was a gangster. They always have so much fun trick or treating!

 We are having Thanksgiving at our house this year and I think there’s going to be 16 people! Everyone brings something and we do the Turkey and drinks!

My tennis game is still in the toilet. I got my Prince Graphite 107’s back and have been playing with them again, but just feel that my service return and serve are not that great! I am going to try the Mid size (93) and see how I like that. If not, I am eyeing either the Head Microgel Extreme Pro or Babolat Pure Storm Tour. My stringer should be there this week too!  You can see it here!

Have a great rest of the day!

Brian

Michael Knox-52

Personal Stories: Mike O’Connor Knox

Michael O’ Connor/Knox, my fiance of 13 years, was diagnosed with a Type B Descending Aortic Dissection 2 years ago on August 3, 2006. He was 52 at the time and had a history of high blood pressure. His mother and her twin sister both had aneurisms in the brain and had stents put in when it was still a new procedure. My ex husband had high blood pressure so I knew a little about it and I had finally convinced Michael to go to the VA here in San Diego to get his blood pressure under control. We also requested and had an MRI done to check his brain for any aneurisms a few months before the dissection. We had no idea that the aorta can also become aneurismal.

Michael kept his blood pressure in check for a while and then got lax and forgot to refill his blood pressure meds. I told him we could go to the pharmacy and they would give him some until he could get the refill but he was stubborn and didnt listen. Instead he started taking his daily pill every other day since he was so low. He had been out running some errands that day and when he returned home he told me he had a really bad pain between his shoulder blades and I needed to take him to the ER. Due to a bad experience at the hospital closest to us, he wanted me to take him to VA 20 minutes from our Home. I knew the ambulance wouldnt take him there and didnt have time to argue with him so I got some of the neighbors to help me get him in our car and I drove him to the VA. I pulled up to ambulance doors and lied saying he was having a heart attack because I knew they would see him immediately. While I parked the car they did a CT scan on him and had the diagnoses within 20 minutes, the time it took me to park the car and walk to the ER. They told me his blood pressure was 200/110 and he had a dissecting aorta and that the next 24 hours would be critical to get his family there and his things in order.

I thank God every day that I took him there, the Dr. on duty (whose name I didnt get) in the ER had just been to a class and knew what to look for. They gave him Morphine for the pain and told me he would be admitted to the ICU and only time would time would tell if he was going to make it. If he did survived it could be controlled with medicine and they wouldnt have to do surgery. I got him settled and went home to our 12 year old son who had stayed with a neighbor. I called the rest of the family to let them know what had happened and started praying and doing some research. I didnt have the internet at home and had to research on my breaks at work. That is when I found this site and wanted to eventually add our personal story so that it might help others. I just got internet at home this week I’ve been busy to say the least.

He was in ICU for two week until they got his blood pressure stabilized then another week in the step down unit and then home. The nurses were great and got his blood pressure down to the 120/80. He takes 16 pills a day, not including his pain medication and potassium and, to keep it there but he is alive. He is taking Clonidine, Felodipine Diltiazem, Lisinopril,(no longer takes due to high Kriatin levels in kidneys) Furosemide, (for Edema and Hypertension) replaced with Bumetanide and Spironolactone. He also takes Metoprolol (a beta blocker) Baclofen, Amiripline,(for back pain). Omerazole,(for stomach ulcers) a stool softener and Simvastatin (for cholesterol). I got 2 weekly pill organizers so he only has to worry about one container 4 times a day and I only have to do it every 2 weeks. The VA here is great they are affiliated with UCSD Medical School so he had a team of Doctors and interns and some great nurses. All the Doctors were just amazed that he had survived and that the tear had only gone through the first layer and, as we found out just this year, was torn from the aortic arch to his groin area 23 inches. Of course he was terrified all he heard was there is nothing we can do go home and spend time with your family. I heard its not bad enough and we wont fix it until we have to. I made them draw me a picture and then I drew him one.


Right after he got home he had an abscessed tooth that had to be pulled and a boil under his left arm that had to be lanced. We have been doing the scans every 6 months and have seen the surgeons 3 times so far. The first surgeon told us theres good news bad news. The good news is its not bad enough to do surgery and the bad news is we will see you in 6 months. They did an intravenous test a nuclear die and put him over a Geiger counter to make sure there was no blockage to the kidneys. Then we saw a Kidney specialist because his Kriatin levels were high. There was no blockage so I asked the Doctor if it could be due to something he ate like shell fish and he said yes and no. It wasnt something he ate but it could be one of the pills he takes that ends in pril. I told him he takes Lisinopril every day and we had to wait for his primary doctor to tell him to stop taking it and since then his levels have been normal. We saw different surgeon at the one year check and we learned more from him than all the rest put together. Michael also requested to see a counselor and it helped a lot for him to get ok with it. They weren’t use to someone requesting help and had to set up a hole new category for him who had too much support unlike all their other patients.

Michael got pneumonia this last July and was in the hospital for a week. Then his weight went way up and the Edema got bad and his already swollen feet and legs got worse and were actually weeping from some old wounds. It moved up his body and from sitting his groin swelled to 4 times the normal size. The Doctor admitted him again for 3 days to get the water weight off. His potassium levels were also extremely low and so they changed some of his water pills and he has to take 8 potassium pills a day now. He lost 25 lbs, from 345 to 325 but it is really hard for him to get any exercise when his feet are so swollen that it hurts to walk and he cant wear any shoes. His primary doctor increased one of his water pills and forgot to tell the pharmacy and just when all the swelling was finally starting to go away he ran out of pills and we were without for 2 weeks and the water weight is just now starting to go down again. Then a few weeks later he fell down the stairs here at home and I took him to the ER and they did his annual scan that day since he was there in the ER he got moved to the front of the line.

Then we were scheduled to see the heart and lung surgeons again and this time they said they wanted to do surgery because his aneurism had grown I asked them if it had become an aneurism (in my mind it wasnt that far yet) and he said it was
only aneurismal. He said it had gone from 5.3 to 5.6 and they wanted to do surgery before it became an aneurism and that he needed to lose weight before the surgery. I asked them if the cough from the pneumonia could have made it larger and they said no. One doctor (intern) gave us the scare you to death version, you could become paralyzed because of the blood supply to the back or die from other complications. The other doctor came and he had a better bed side manner and said that it was only a 3% chance of paralysis and they would have to get together with the other doctors for the complicated part in the middle which made us feel a little bit better. They requested and did another full scan at our request instead of doing two, one upper and one lower with contras, and then we scheduled another appointment. Now they said that it hadnt changed and they would not do surgery yet, see you in 6 months. I asked him what the size was and he said they didnt put it in the report only that it hadnt changed. Back on hold again but it could be worse.

Sorry to go on but I think it is important and this might help others to know you are not alone out there in your frustration. We have tried to be vigilant and one or two of us goes with him to every one of his Doctors appointments and we ask lots of questions. I would like to thank you Brian for being an angel in my time of need. Michael was diagnosed with Sever Sleep Apnea. That means no recuperative sleep to heal. He now sleeps with a CPAP machine and he feels it has help him a lot

Mike and Juli

Janel Denny-47

Personal Stories: Janel Denny

In the Spring of 2001,I had an Aortic dissection at the age of 47 (same thing that the actor John Ritter died of) , It seemed like it took me a long time to feel like my old self…. I went back to teaching elementary school Physical Education after 6 months after my dissection. At the time I was not sick enough to get Social Security, but my doctor felt that teaching was too stressful for my heart. I retired early from Warren Township but not the State of Indiana. I have not reached the rule of 85 yet. I have 28 years of teaching and I am now 54 years old. September 20, 1954 is my birth date. The year I turned 50 in September, I had to turn 50 by July to be eligible for the Warren Township retiree insurance program so I missed it by three months to get the Warren health insurance for a dollar a year. Warren Township schools and the State of Indiana made the change in the insurance policy to the VEBA account.  My VEBA account ran out in two years.

Warren personnel director Jim McLochlin, told me that I would quality for the Disability Insurance with the Huddleston company.. needless to say, you have to be on your death bed to get that coverage. My family doctor signed the papers, but I was turned down. And at the time I was so stressed out that I just retired.  Bitter that I did not get my retirement health insurance…I can buy it from Warren for around $600 a month….needless to say with my heart I need insurance.   I had and have always followed the rules in life. I just feel like someone could find a way to get my insurance paid for me… that someone at MSD Warren would have stepped up to the plate and said this is not fair.


I have written a number of letter and they are all going to some black hole. I keep thinking that someone will look into this matter for me and give me some support.

I am sure you think I am some kind of nut. I should just be happy to be alive.

I have read your web page….and I feel so lucky to have been at St. Vincent’s hospital here in my home town of Indianapolis…. I went in on a Monday night and they ran tons of tests on me…….and finally on Friday of that week they found my Aortic dissection after a swallow test.  To be fair to St. V’s…. I must have had a blood clot go up into my brain when the dissection started….they thought I had sometime going on in my brain, or that I was on drugs.  I was a combative patient in the Emergency room…spent the first day at St. V’s in the Psysco Ward.  I can’t tell you how many test I had run on me that week.  I could have ended up like so many dissection patients do, get sent home to die. Thanks for all you do for all of us and for our friends and family. I am one lucky person…but honked about the insurance.  Keep up your good work!

Janel Denny

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

Miracle Lady survives an AorticDissection

I got this alert from my Google notifications about a women who experienced and AD while giving birth to her child. It’s a terrible outcome for the baby, but the mother survived and was able to keep going forward with her life.  The story is here and it’s a great outcome for her. What’s interesting is that they show a Type B dissection in the story, when it appears to actually be a type A, requiring emergency surgery. I actually agree with the doctor that there’s few cases under the ages of 30, but… they are out there and I have documented them on my website as well. Those can be found here along with many other AD stories.

I feel so fortunate to be alive today thanks to Dr. James Brevig and the staff at Providence Everett General Hospital in Everett, WA. And, I am so thankful to the ER room for being able to catch it!

God Bless,

Brian Tinsley

My tennis game.. and stringing dilemma

Well, after playing with my Prince Oversize 107 rackets for 25 years, I have decided to switch.. Or did I? I ordered 3 new Head MicroGel Extreme Pro’s and had leather grips put on them, but never gave them a chance as I was having issues with overheads and forehands. So, after selling my Prince’s on ebay, I ordered 2 more Graphites, strung one, went to the wall, hit a few balls and realized that the HMP really were my new sticks. However, I had already sold them too! So, I had to ask the buyer to listen to my story and I gave him the funds back and have been watching my rackets travel to Arkansas and now are on the way back.

Next problem… I sold my stringer too! Then, I decided to get the new Top of the Line, LaserFibre Quantum. That’s what I ordered last week and was told it would ship out this Friday, 11/7/08. However, that got shipped out yesterday and left my bank account in a negative situation. I contacted the LaserFibre folks and asked them what happened? I also asked for a refund of the shipping charges as it’s the least that they can do for the screw up that they caused me!

Oh.. the game of tennis! 🙂

Brian

Back to work… Getting back into the swing of things!

Well, it’s back to work for me.. finally, after being laid off on 5/2/2008, I landed my first day on the job with Global Crossing on 10/20/2008. I really like the company so far and the people are great! It’s nice to be in a much smaller company than BIG BROTHER VERIZONBUSINESS. I am so happy to have a job at such a great place. The being out of the work realm was a bit tough to get back used to. I am still struggling a bit to try and stay focused. I am getting better and better each week. I also got my first paycheck and just in the nick of time!

I had my review of my Echo-Cardiogram that was done back in May/08 of this year. My doctor said that everything looked fine, still small leaking in the valves due to my “genetic” make up of a deformed bicuspid valve since birth. The nurse checked my BP and and it was 140/71. The my doctor checked it about 10 minutes later and it was 176/78. I told him that I was going to get my weight down from 212 to under 200lbs and that I would do it by Jan 1st, 2009. He said that I needed more BP meds and now I am going to be taking a pill at night. It sucks having high BP…it really does! I am on so many medications as it is, granted I take them about every 3 days on average, I need to get on the daily program – which I am going to do! I am also going to get my Excel weight charts and BP charts, put them on the bathroom walls and get focused about getting this BP thing down. We also discussed that I could go to 1 Echo per year and I told him about my CT/Angio’s and how Dr. Liang thought going to MRI’s would be less radiation for me. He seemed to agree. I also had a blood test for him to review and my hope is that my cholesterol is OK and I don’t have to go on meds for that!

Take care!
Brian

Mike Morgan-46

Personal Stories: Mike Morgan

My husband had an acute type A aortic dissection on 6/25 of this year.  I have been reading other people’s descriptions of how their dissections occurred and his was pretty much the same way.  We got up that morning the same as usual and I left for work at 7:00 a.m. my oldest son was home until around 8:00 when he left for football practice and his dad was fine, but around 8:15 he said he had the worst pain ever and thought he was having a heart attack.. He took 2 aspirins and couldn’t get me at work, so he called the ambulance.  About 8:30 I walked in my office and my cell phone was ringing and it was him, telling me he had called the ambulance because he thought he was having a heart attack, the ambulance was not at the house yet. I work at a hospital and told him I would meet him in the ER.  He didn’t arrive until about 9:15.  He called me from the ambulance about 20 times and kept saying how much he loved me and the kids and he didn’t think he was going to make it.  That was the longest 45 minutes in my life, waiting for them to get to the hospital.  We only live about 8 miles away, but I figured if I went home I would pass them on the way. Anyway when he arrive at the hospital I met him and he was really acting weird.  Kept telling me over and over how much he loved me.  It was very scary to see him so upset.  They did an ekg and blood work and a chest x-ray and couldn’t find anything wrong.  Our young male nurse said his blood work looked better than his!! At this point they thought he was having a major PANIC ATTACK, which frankly I did too, they also kept questioning him about what he had taken.  I explained to them that we had nothing in our house to take!  They left us alone in the room and I was watching the monitors I noticed his blood pressure dropping down to 60/48 and his heart rate was in the 40’s and so I called the nurse back in and he said the blood pressure cuff had probably slipped and reset it and then all Hell broke lose.  My husband by this point was looking very ashy in color and wasn’t making sense. The dr came back in and my husband didn’t know what year it was or what hospital he was at.  Then he started throwing up.


We’ve been married almost 20 years and he has thrown up 1 time, so I knew he was really sick.  They gave him Dopamine (probably the worst thing to do with a dissection) to bring his bp up, which then jumped up to close to 200/.  They immediately took him for a CT scan w/dye and within 10 minutes the cardio surgeon was in the room talking to us.  My husband by this point really didn’t know what was going on.  He was talking crazy. The surgeon took me in the hall and said, ” It doesn’t look good, I don’t think he’s going to make it.  You need to get your kids, family and clergy up here now!  He said even if he did make it he would probably have neurological problems, stroke, be paralyzed, but that he would do everything he could do to save him.  I couldn’t believe it.  I went from thinking he was having a panic attack to hearing this.  My aunt brought my kids to the hospital (it only took her 10 minutes) and they got to see their dad as they were taking him up to surgery.  As bad off as he was mentally, he still knew who me and the kids were, and that gave me so much hope. He was in surgery for 7 1/2 hours and when the dr. came to talk to me he said he had given him blood, WBC’s, plasma and couldn’t stop the bleeding.  He said he had done everything he could and was going to pack his chest and send him to ICU for continued warming.  He went to ICU and I got go see him around 10:00pm.  The nurse suggested I go home and rest and he would call if anything changed.  Around midnight the phone rang and it was the nurse needing permission to take him back to surgery for the bleeding.  I gave verbal permission and went back to hospital.  He was only in surgery for less than an hour.  When the surgeon came to talk to me, I thought he had died.  But instead he said he placed a single stitch and it stopped the bleeding.  He felt much more positive after that.  He was unable to close him, so packed his chest and sent him back to ICU. The next afternoon they took him to surgery to close his chest.  They kept him in a drug induced coma for several days and it took a week to get him off the vent.  It was a very scary time.  He stayed in ICU for 12 days and was tx to the floor for 5 more days.  He did wonderful.  2 weeks after being dc’d from hospital they did a f/u CT to check his aorta and found blood clots in his lungs.  Back in the hospital we went and an IVC filter was put in and he is still on coumadin.  They tried to remove the filter the first of October, but were unsuccessful.  Looks like he’ll have it for life.  The Dr. said they would keep him on coumadin for sure until next year and then reevaluate it then. By the grace of God my husband it back to normal.  I know it is truly a miracle.  The first few weeks were very scary and hard.   He could barely walk and had horrible night sweats.  He couldn’t lay in the bed, so I went a bought him a recliner.  That was a life saver.  He was able to get some sleep in that.  He’s now back working, he’s in sales and he works out of the house. He does have to travel some, but mostly day trips.  He’s now down to only 4 bp meds, plus his coumadin and Zoloft, I think we’re going to talk to the Dr. about getting off of that pretty soon.  He really needed it at first.  He had severe panic attacks and I had to come home from work several times.  He was originally on Xanax, which did nothing, and I finally talked to the surgeon and said can we please try something else and Zoloft has been great! My husband is 46 years old, was very healthy, didn’t smoke, didn’t have high blood pressure, (but does now).  We did find out after the fact that his uncle died about 12 years ago from a type B dissection.  His mom died from a brain aneurysm.  So apparently it runs in his family.  My kids are 12, 15 and 17 and we’ve already send our samples to the university of Texas Genetic study.  I want to find out if my kids carry the gene so we can prevent this from happening to them. Hope I didn’t ramble to long, but I’ve been reading other peoples stories and it has really helped me get through this.  Thanks.  Stacie M. We know how truly lucky he is to be here.  They say most people don’t make it to the hospital and a lot don’t survive the surgery.  Also, the fact they we have such a wonderful hospital and surgeons who were able to operate on him immediately.  They took him to the OR within 25 minutes of the CT results.  In fact the anesthesia list actually started giving him medicine in the ER to speed things up. It only took about 2  hours from the time he arrived at the
ER until he was diagnosed.  He was VERY, VERY, LUCKY!

Contact Mike

Vickie Swing-57

Personal Stories: Vickie Swing

I am a 57 yr old female that has never had any heart or blood pressure problems. On 9/24/08 I awoke with the most severe pain in my upper back that I have ever experienced. I was in Indiana visiting my family, so I told my mom I didn’t feel well and we went to the local er. The pain was so severe all I can remember is begging someone to please stop the pain. They did an ekg which was fine and then a CT scan. I was immediately life lined to Methodist Hospital in Indianapolis. I don’t remember the flight or even being admitted to Methodist although my family tells me I was awake and talking.

They were giving me morphine and Fentanyl for the pain. On my third day at Methodist I went into a coma that no one seemed to be able to explain. I was in that state for a full week. After waking from the coma I honestly did not know what was going on or why I was there. Very little was explained to me about the aortic dissection, they were more thrilled with the fact I came out of the coma. I was released from the hospital 4 days after waking from the coma with limited instructions. I was told to keep my blood pressure at or below 140, no physical exertion and no lifting.


The next day I noticed a hard knot on my left arm where an IV had been, so I went to the er and discovered I had a blood clot. This was treated with antibiotics and heat compresses. It is still there. I recently saw a cardiologist in my home town an he filled me in on all the information that was not given to me at the time of my dismissal. I have a descending aortic dissection that starts at the subclavical area and goes past my left kidney. He said he has never seen anything like it before and can not actually believe I am alive.

The lack of blood flow to the kidney is now affecting the function of the left kidney. He says the experts at Methodist are doing the right things. They are hoping that scar tissue will close off some of the dissection because if they tried to fix it surgically now I would not survive the surgery. I am supposed to keep my blood pressure at 120 or below and heart rate at 60 or below, not always an easy task. I have had to quite my job in Maine and move back to Indiana permanently, so now I have no insurance and no income. Needless to say I am terrified.

Thanks for letting me vent

Vickie

ElaineWolfe-58

Personal Stories: ElaineWolfe

Thursday, January 17, 2008, a typical cold winters evening in Michigan. I had just finished watching two of my favorite shows, “Survivor” and “The Celebrity Apprentice.” Suddenly I noticed a sharp pain just below the indentation in my neck that seemed to go through to my back. My right jaw also hurt. I asked my husband, Jim, to rub my back and the pain went away. So I went to bed. I was awakened about an hour later by the same pain. This time I asked my husband to drive me to the hospital.

The hospital closest to us, Providence, was for emergency only. They were building a new hospital which was going to be state-of-the-art. So here we were driving to the emergency at a new hospital that wasn’t a hospital quite yet.

We were in emergency all Thursday night into Friday. They did an EKG and regular testing and could find nothing wrong. They must have given me something for the pain, because I was quite comfortable. I thought that they were going to send me home. So did the doctor on duty in the emergency room who said, “If it was up to me you would go home, but the cardiologist on duty at the main hospital wants to see you.” The main hospital where I went via ambulance, was about 25 minutes away. Again nothing seemed to be happening at the hospital. Again Jim and I thought that they were going to send me home. So Jim drove home to let the dog out. While he was gone the cardiologist, Dr. Saba, came in with some interns. He asked them, “If a patient presents with these symptoms, what might you think it could be?” I have no idea what the interns said, but then Dr. Saba said, “And what would be your next step?” Whatever the interns said sent me immediately to get a dye study cat scan. I knew something was up by the way everyone was acting. I suddenly had many doctors (I guess that is who they all were.) in my room. Dr. Saba told one of the nurses to call my husband. He then gave me a brief idea of my problem and told me that I was going to have emergency open-heart surgery.

Jim and our oldest son, Scott, stood at the side of my hospital bed. The doctors were on the opposite side. I was sitting up. I had arrived in emergency about 18 hours earlier. It was now about 5:00 p.m. on Friday. Dr. Saba told us that I had a dissected aorta and needed immediate open-heart surgery. Jim’s knees seemed to buckle and he leaned into the bed. He put his hands on the mattress, bending forward as if to brace himself and said, “No, we can’t do this…not again.”

I had open-heart surgery in 2002 at the age of 52 for a bicuspid aortic valve, which was replaced with a St. Jude mechanical valve. My bicuspid valve was a result of having rheumatic fever when I was a child. After I had my first open-heart surgery I vowed never to have to do that again and had taken steps to insure that I was taking care of my heart. I had exercised three times a week at the cardiac rehab gym from 2002 until the present. I had exercised the day before the aorta dissected. I had tap danced every week for 12 years. I had a tap class in the evening of January 14, just 3 days before my aorta dissected.


Dr. Saba was so kind. He took Jim and Scott to an area where they could view the image of my heart on the computer and explained to them what had happened and why I had to have the surgery immediately. It never occurred to me that I might die. I guess I did not have time to think about it. But it must have occurred to my family, as Jim had tears in his eyes as they wheeled me to the operating room.

The actual surgery for my ascending dissected aorta took about 5 hours. My anxious family (which now also included our other son, my brother and his wife) must have went through a very hard time waiting to be notified that the surgery was over. I woke up on a respirator in the ICU hooked up to all kinds of tubes and wires. I remember looking at everyone and motioning that I wanted to write. They gave me a pad of paper and a pen and I wrote ‘out’ and pointed to the respirator that was down my throat. The nurse must have given me something to knock me out again soon after that.

I was in the hospital for six days. I had another visit to the hospital emergency room on Super Bowl Sunday. Jim had to call EMS because I was having a rapid heartbeat, which left me short of breath, feeling like I was going to pass out. I was in the hospital for two nights. I could not wait to get out.

It has been a rough road. I had some other complications; costochrondritis – which is an inflammation of the sternum. Then in June I was diagnosed with an infection in my incision caused from one of the internal stitches. In July I retired from my job, which I had for 16 years, because I could not keep up with it any longer. I needed to focus on my health issues. I am feeling pretty good now. It is October 29, 2008, and I will be having my gallbladder removed on November 12. After that I hope that all of the “surprises” are done and I will be what I call “a real girl” again.

Some of the things that I have learned and am still learning after having two open-heart surgeries is that I won’t be exactly as I was before. There are things to adjust to. I call it my new “norm.” My mechanical valve is loud and seems to be even louder since the graft was put on the aorta for the dissection. A doctor told me that you get used to the sound. But I do not think that I ever have. You just learn to live with it. I am very conscious of things going on in my body. I know to back off exercising when I feel what I call a “bubble” in my chest or if I feel a bit nauseous. I have to repeatedly tell myself that “everything isn’t something.” So if I feel a bit strange it doesn’t have to mean something. I know that I am the judge of what I can do. The doctors encourage you to do whatever you want. I pulled a vacuum up four stairs in March and ended up with the inflamed sternum. Guess I shouldn’t have done that. My pectoral muscles seem to be very weak, a problem that I did not have with the first open-heart surgery. So I am very conscious of lifting things now.

The best thing that I have ever done is to continue going to cardiac rehab at Providence Hospital to exercise. It is like going to a gym for people with heart issues. You have your blood pressure taken once before you start to exercise and once while you are exercising. I also wear a heart monitor to give me my heart rate. It cost me $50 a month and I go three times a week. The gals that work in the rehab are professional, caring individuals. They keep an eye out to make sure that everyone is okay. And you get a chance to meet other people who have had open-heart surgery. I have met several people who have had their aortic valves replaced, but so far no one who had had an aortic dissection. Even when I don’t feel like exercising, if I go I know I will feel better afterwards just from talking to the friends I have made.

“Life isn’t about waiting for the storm to pass. It is about learning to dance in the rain.”

It is so nice to be able to go to a website that is devoted to aortic dissection. Thanks.

Contact Elaine

David Emmitt-46

Personal Stories: David Emmitt

They tell me I am not supposed to be here.

On Oct 8, 2008 I woke up to what I thought was going to be a normal day. I got ready for work, fixed my daughter breakfast and got her lunch ready. I told my wife that I felt like “my body was shutting down” – I had been working long, long hours on a new business pitch the last several weeks. But nothing seemed weird, because I expected to be tired.

My wife left for an out of town meeting, my daughter went to school – she was going to stay with friends since I had to get on a plane that afternoon. I was still feeling tired so I emailed work and told them I would be in late. Then I tried to lay down and that’s when the “pain” started. At 9 am it felt like I had tried to swallow a softball and it got stuck in my throat.

I spent the next 3 hours trying to figure out what was going on. The pain was not intense. It certainly hurt, but more just weird and uncomfortable. But it started to move, up my neck and I could feel it in my jaw. It also hurt a lot more. I called my wife who had just landed in and told her I was driving myself to the ER.


I got to the ER around 12:30 pm. After some CT’s and XRAYs this amazing Dr. grabbed my hand and told me that I was in a life-threatening situation. The surgeon I needed was at a larger hospital 20 miles away and that I did not have time to go by road. So the bonus part of this story is that I got to take a Life Flight helicopter ride.

Well I called my wife – tough, and one of my two daughters – tougher. And then they put me on the helicopter and by 3:30 or so I was in surgery. The folks at the ER all lined up to see me off. I later found out that they were saying good bye as much as good luck. Turns out nobody thought I was going to make it out of there alive.

If I remember they put in a 28mm Dacron graft and some supports in my valve. There was no high blood pressure or heart disease – no one could really figure out why this happened. Unlucky they said. I was in the hospital 5 days and then they sent me home. Unfortunately I was back within 24 hours for another 5 days – seems I had a pulmonary embolism.

Anyway, only a couple of week out from all of that. Not back to work yet. Feel OK. Lots of creepy, hyper awareness of every single heartbeat and ache or pain. Figure that is normal.

My surviving is all due to Dr. Mooere and the staff at the ER at LDS Hospital in Salt Lake City and Dr. Doty and the folks at Intermoutain Medical Center’s Heart and Lung Center.

I owe you guys.

Glad be here.

de

ps: It’s nice that this came at the tail end of fly fishing season.

Contact David

What a Family means to me…

This is one of my favorite pictures with my kids. It’s probably two/three years old, but I just love the picture and the smiles on every one’s faces. We were on vacation and stayed at this place with a great outdoor pool. I just absolutely treasure these kids that the GOOD LORD has granted me. I am so deeply blessed to have such beautiful and wonderful kids. I just love them for all eternity!

 

This is another favorite of mine as well, this is at Lake Intiat in Eastern Washington, on the Columbia RIver. My brother/sister in law have a nice place in the Sun Cove development and we have a blast when we go over there in the summer time. My kids just love riding in their boat and going tubing and the parade. However, there’ a bit older now and the parade is still fun for them, but they’d rather just relax and kick back!

 

 This is my brother’s family and it’s about 2 years ago on Christmas Eve and my parents house. I can not begin to tell you how thankful I am for my brother and his LOVING family. My brother was there for me, as well as my entire family when I was in the hospital. He was TRULY amazing and is a TRUE BLESSING from GOD! I can remember babysitting their oldest daughter, Kylie when she was just a baby!

 

 Here’s me and the kids 2 years ago at Lake Intiat again enjoying ourselves and having a blast. My beautiful wife was taking the picture. It’s so pretty to watch all the stars at night here!

 

 

 

 

 This is my brother and his wife at their new house, it’s a beautiful house and it has a tremendous view of the mountains and water! They are wonderful!

Have a great day…. Remember your family!

Brian

I got the job! Going back to work soon….

Well, after being laid off since 5/2/2008, I received word today that my paper work is all done, my background checks are completed and now I am waiting for my official start date. I am excited to be finally getting back in the working world. And.. not a minute too soon! My severance is just about gone and my UE is about to run out.

My back is still hurting since last Thursday’s tennis match. Since then, I have had to go on Prednisone to help the swelling and started doing a bunch of new lower back stretches. I am also committed to making the racket switch to the Head Microgel Extreme Pro and put my Prince Graphites on ebay for someone else to enjoy. I can not look back and need to believe not only in myself, but my game and new conditioning efforts.

I am so thankful to JESUS CHRIST for allowing me this new job opportunity.

God Bless!

Brian

Eric Sonnie-38

Personal Stories: Eric Sonnie

Hi all my name is Eric, Its been 10 months since my surgery….cant believe its been that long I feel normal except for the 12 inch scar on my chest…Let me get back to the story of my life…It was January 18,2008 and I came home from work. I had 12 people coming over my house cause I was taking all to high school musical on ice and than I was taking a shower and I felt like I was having a heart attack….Being the stud that I was..lol..I told everybody that the show must go on.

On the way there my tongue went numb and it was scared…it was time for the Cleveland clinic…I spent the night there and the kids saw the show…thank GOD…My sister is a O.R. nurse and as I was in the room with me she wanted to see my pulse….the doctor thought I was born with a weak pulse and my sister said I should see another doc.


Do I need to continue…On Jan 25th my world went crazy…this day my sister set up with a ultra sound with a great doc at the clinic and I barely remember this…my doc told me to sit in the wheel chair and I’m admitting you to E.R NOW…Holy sh..the entire Cleveland clinic came to my rescue…some saw me the week before and cried, some saw me now and.

I woke up 2 days later with a breathing tube in my throat and life still coming out of me…wtf is this I thought I’m 38 and in my prime if I was Bret Farve….I went rehab and they were awesome I ran…I lifted weights…I felt like a million bucks….And the saga continues………..I lost my dealership, I lost my wife and all I ever wanted to do is be happy…I try to feel everyday like I am on top of the world,….but I want to just be back to jan.08 when I was invincible…..My name is Eric Sonnie and I have a arotic dissection what do I do now………My email is thunderrolls1969@yahoo.com….Please somebody tell me…………….

I got the job! Persistence is the “key”!

Well, I got the call today and the offer letter is to be overnighted to me and arrive tomorrow. I am planned to start sometime around the 7th/8th of October for Global Crossing. I am so excited and just in the nick of time! I am out of my severance funds and my unemployment benefits are due to run out as well. God works in mysterious ways! I am so thankful that I am going back to work and for a great bunch of folks.

There’s a lot to be said about being persistence and taking those small steps (many) in trying to get where you want to go. In the same manner, I have been working via YouTube on my decentization process about my flying. I am really fealing confident about the strides I am making here. Thanks to Dr. Fear, I am on the right track to victory.

The kids are both in socceer and it’s so much fun to be able to watch them play. It’s one of my favorite times of the year as I just love to watch them…grow! I don’t know what hit me, but I decided I could switch tennis rackets after 25 years and that didn’t work out – what was I thinking? Anyway, I am glad to be back playing with my Prince OS Graphites and will be working on my fitness to help my game get better.

I received a call from a wife of an aortic dissectiion survivor today. It sounds like he had a very similar experience to my surgery. Apparently, he’s struggling and it was nice to speak with her and tell her that there is “hope” and that we can get her and her husband some expert help. This is what makes me happy is when I can give something back to others and help them.

Well, I am getting up at 4:50am to head to the club for 5:30am doubles tomorrow and playing singles tomorrow night at 8pm. Full day of tennis!

Best!

Brian

Loretta Young-70

Personal Stories: Loretta Young Dear Brian,   I’m sure that you can relate to the relief I felt, when I was referred to your website! My only problem is, I was so overwhelmed and frightened, I kept putting off contacting you! Your website is awesome, and today I’ve pushed myself to really get involved in this, but don’t even know how to begin; again, I feel so overwhelmed by everything about this condition.   My name is Loretta Young, and I just turned 70, last April. On September 29, 2007, I just felt incredibly sleepy, so snoozed on my bed with my cats all day. It was a Saturday, and some close friends of mine had called me in the afternoon, to tell me that they were in town, and invited me to go out to dinner with them. I agreed, then got out of bed, after another 1 1/2 hour nap, took a shower and got dressed to go out. When they arrived, I was in the process of putting on my mascara. Suddenly, I got this piercing pain in the back of my head, and it was like someone was pulling a zipper down, in my head, and the pain went into my right shoulder. I commented to my friend who had come up to let me know that they were there, “Hmmm, I am having the most unusual pain in my head, and I just don’t feel right!” My friend is a nurse (we were roommates in nursing school), and she advised me to just rest for a few seconds and see if it got worse. It got decidedly worse! She dialed 911, and I was whisked to the E.R. of the nearest hospital. I felt so weird, and the E.M.T.s were obviously concerned about my condition. To make matters worse, since 1992, I’ve had serious breathing problems, due to a paralyzed diaphragm (who knows how that happened!), and was forced to retire in 2001, because even with my portable Oxygen with me, I would have breathing episodes and have to be sent home.   My friends located my daughter, who immediately notified my son, who lives in Lodi, CA, who flew right down.   After rushing me in for various C.T. scans, and they saw the nightmare they presented, they told my daughter that I would have to be taken into surgery, to see if any repair could be done, She was told that I most likely wouldn’t survive the surgery, and with my breathing problems, would  probably be on a breathing tube for the rest of my life, if I did survive. Just as they were nearly to the O.R. door, another Cardio-Vascular surgeon stopped everyone and asked to speak to my daughter, in private.


He told her that he seriously doubted that I could survive the surgery, and his suggestion was to treat it medically. He told her that his dad had suffered the same thing, and by treating it medically, he survived 11 1/2 years, and died of something else! That sounded great to my daughter, so they both came over to me, to share the information. Believe me, that was a real relief!   I was in ICU for a long time, then “Special Care,” and on Oct.16, I was released from the hospital and sent to a Convalescent Home until I was released to come home on November 5, 2007   My daughter, grandson (6 yrs. old) and I live together now, in a nice, roomy one-level townhouse. We are very happy together, except that my grandson is highly allergic to most animals, especially cats, and I had to let my precious little cat family be placed in other homes. I suffer intensely from this grief; we were family for almost 15 years. I comfort myself by knowing that they will all be with me again (never to part), when we get to Heaven.   What a year this has been, and I truly need help, and possibly more aggressive treatment for my condition. I was referred to a Thoracic/Cardiac surgeon, and he was so blown away by the reports of my condition, he was is shock. He couldn’t believe that I was still alive. He had me undergo another series of C.T. scans, and nearly fainted when he saw them. I was diagnosed with Type I Aortic Dissection, from my shoulder, next to my heart, my abdomen and in the groin. I had four aneurysms. When we got the results of the latest C.T. scans, the aorta had healed up, and there weren’t any evidence of aneurysms! He wants to see me in a year for more scans, but in the meantime, it’s not easy or pleasant living with the symptoms, all the discomfort and feeling so weak, tiring so easily and sleeping nearly ’round-the-clock!   I gave you this rather long “Thumb-nail sketch of what I’ve been, and still am going through. I really am grateful for this website, and plan to make a lot of use from it. I just don’t know where to begin. I thought I would send you this much, so that you would have an idea as to where I’m at in this process, and maybe you can lead me to various people who can possibly improve my situation. I feel that I’m way too much medicated, and that disturbs me, and there a lots of things I need to learn.   My Sincere Thanks,   Loretta Young

Tony Penland-35

Personal Stories: Tony Penland

My name is Tony Penland I am 35 years old, on September 11th of this year{08} I was taken to Duke University Hospital, thinking maybe I was having a heart attack. I had passed out 2 times in our bathroom here at home and my wife called 911 as soon as possible. Now I don’t really remember much after the ride to the hospital only hearing my wife and mother and sisters talking in the emergency room.

I woke up in the ICU department 4 days later having no idea what had happened. My surgeon came in with my family and told me what had taken place. I had an aortic dissection surgery. He told me that in the aorta there are 3 leaflets that come off of it, well I was born with only 2, so over time the back flow and pressure build up caused the dissection. It was still a few days later until I realized exactly how serious this procedure really is. During the week in the hospital the diabetic doctors that were working with me came in and thanked me for letting them work on my case, because there was no reason for her to be standing there talking to me.


Well that’s when it sat in that I was blessed by the hand of god. I don’t think I have to describe the emotions that I felt, I’m sure you guys understand what I’m talking about. I am extremely thankful to my surgeon Dr. Jeffery Gaca and his team, there are no words to describe how i fell about these people, I owe this man more than he could ever know.

I know that there are so many life changes that I have to make, I have to find a whole new line of work to be in, and the meds I will be on for the rest of my life, but compared to the alternative I think I can handle it. I am so thank full to find this site, it is like another blessing in my life. Look forward to talking with all of you in the future. Thanks for letting me tell my story.

Tony Penland

UPDATE: 8/19/2010:

Well I have actually posted my story on here and you can read it in the Ascending Dissection by age under the thirties age group. I just wanted to come on and let everyone know that I celebrated my 2 yr. anniversary of my dissection surgery this past week. Sorry I didn’t start off this message with my name, but I am Tony Penland and I live in the triangle area of North Carolina. We are smack in the middle of what most people who are sports fans call ‘Tobacco Road’. I live Hillsborough NC which is about 15 minutes from UNC’s campus and about 20 minutes From Duke University…..GO BLUE DEVILS!!!! Like I said it has been 2 years since I had my surgery at Duke hospital, where my ascending dissection was corrected and had a mechanical aortic valve put in.

I have had a few trips back in the hospital because my blood pressure will go crazy on me sometimes and they have to admit me to get it under control. The first time this happened i did have some pain in my chest and back, which freaked me out, but after ct scans and other tests everything was fine. I just want to tell Brian how much I appreciate this site and everything he does for the people on here. It is a wonderful felling to know that I can come to this site and talk with others who have been through the traumatic experience that I have. I still thank God everyday for giving me a second chance at life, and also for giving my surgeon Dr. Gaza at Duke the skills he needed to successfully complete my surgery with no complications, ya know 9 and a half hours is a pretty long time perform surgery, but he would have stayed in there if it had taken 20. If anyone ever needs to talk to someone or an needs anything you can email me at tonypenland@yahoo.com and i will send you my number.

Thanks again Brian, and to everyone on here…..Live life to the fullest, don’t take any day for granted, be happy, love your family, but don’t forget to thank God for all of these blessings he has given us. Thanks…

9/21/2008-Sunday

It’s been a few weeks since my last post. I have been busy with kids school, soccer and playing tennis. Also, I have been praying for a job to finally come to fruition. I have been told that I have the job at Global Crossing  and I am very excited abut the opportunity. However, it’s taking them some time to get me the actual offer letter. I am going to meet with them this Wednesday and this Monday, I am supposed to hear from another possible opportunity with ATT Wireless. I had originally applied with them, but did not get the position. I was called out of the blue a week ago about another position and interviewed with them. They are going to make their decision on Monday evening.

In the meantime, I am working on my flying issue. I discovered (what I believe is my cure) a book called “Freedom From Fear: Overcoming Anxiety, Phobias and Panic” 
Howard Liebgold; Paperback; $11.21. I stumbled across the book trying to help my daughter with some issues about school. I have gotten to know Dr. Liebgold via email and he’s a super nice person. He struggled with phobia’s for 31 years! And, he’s a medical doctor! He’s specializing in helping others and I would HIGHLY recommend him! One of the most helpful things, is the desensitization process. The definition is:  To make emotionally insensitive or unresponsive, as by long exposure or repeated shocks. Or in other words to constantly expose yourself to the things that give you the fear/phobia/anxiety because the ONLY way to deal with fear is THROUGH IT! The desensitization process is done on a hierarchical format. Meaning, you give your phobia/anxiety levels on a scale. I can honestly tell you that I have tried everything and this is the FIRST person who I believe really understands what is going on. He should, he’s been through it!

I hope to know this week about my job situation and hopefully will get the offer letter this month from Global Crossing so I can join them and get my life back on track with a great company.

Cheers!

Brian

JH Rodriquez-48

Personal Stories: JH Rodriquez (Eric)

My name is Eric Rodriguez, I am Latin American, I am  48 yrs, born in the Caribbean Island of Puerto Rico. I am also, or better yet, was working as a contractor in the Middle East, Iraq. I was not a very conscious healthy guy and I gain some weight, 290 lbs. to be factual. The stress and the weight were a bad combination, ending in racing my blood pressure unsafely.

Even I ride my bicycle to and from work the exercise was not enough for what I was going to go thru one night. August 5, 2008 that night on or about 10pm I was awaken by a sharp pain in the upper chest area that soon took over my central area in the back, my left arm and leg too. The pain will go for a moment lower but it will come back stronger. I immediately took 3 Aspirins and seek help in a near by Emergency Phone pole. Luckily there was a soldier there and call an ambulance.

At the Air force Hospital I was diagnosed with the beginning of an Aortic Dissection and it was about to burst. The longest and most painful night I had ever live, and I have to say this it was a miracle I made to Germany in 8 hrs flight from Iraq. At Germany the Surgeons conducted the repair of my Ascending Aorta and then I was transfer to an Army Hospital for recovery, almost one month.


Finally the company I was working for in Iraq sent me to my home town, Colorado Springs, CO. Here I have almost a month, by myself, recovering and doing the best I can to get better and go back to work. There were many complications; Sleep Apnea did not help, Sinusitis, and a lot of sneezing took a hold of me. Sometimes I feel like something is loose inside my chest, my surgeon said it was because of the complications I have some loose wires nothing dangerous, if they do not get completely detached from the chest muscles.

The bottom line is; be wise take regular checks with your primary doctor so you can prevent or at least detect the illness on time. Above all live a healthy life, and stay out of smoking. I have learned a great lesson. God knows I thank all the medical personnel who help me and my boss too. One thing very important, be honest with yourself, because once the Aorta is sick it may happen again. Stay healthy and live long happy life.

Contact Eric

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