This was taken last summer at Lake Chelan. My parents are taking us back again for their 50th wedding anniversary. We are excited about staying at Cambells again. It was such a beautiful evening and dinner we had here. I was looking over some old pictures and realizing how luck I am to have such a wonderful family. At church yesterday, the message was about “Loosing Everything” and how lucky we are to have this life as a gift from GOD. I true miracle! I can’t believe that I thought today was my dad’s birthday! You’d think after 47 years I would know if for sure! LOL!  It’s the 18th of the month, not the 8th! My dad came down with diabetes about 6 months ago. He’s lost a lot of weight and thanks to my mom, they both have been eating better and I think it’s the best thing that could have happened to my dad. My parents are another miracle from GOD. They are such GODLY people and I am so proud of them and the “volunteer” work that they do.

I am not sure where this came from, but… it was of my beautiful wife and I wanted to post it. Oh yah.. I got those flowers at the Pike Place Market and it made me think of her. She’s going through a very tough time with her mother ready to head on to another life. It’s been a time of immense stress for her and I am hoping that GOD will bring her mom very soon. I want my wife to be able to let go and get back on her feet and get back to being her bubbly self and finding Kathy again. I know she can do it! She’s a very strong woman. 

I had a good day at work today, we got some things accomplished with one of our customers and they were happy we got their services working. I am playing tennis in the morning and will go to bed early tonight. My favorite night ritual is to print out my USA Sudoku puzzle, grab my crushed ice water and then go try and solve the puzzle. I went to the club with my kids yesterday and actually jogged on the treadmill for 32 minutes. I am feeling it today! My son won his first Lacrosse game and scored two goals. My daughter’s week long play starts this weekend! Good night! God Bless You!

I found this on Google this evening. I feel like I am back in another uncertain time. I have been at my present company a year now and today I find out some changes are coming. I don’t really agree with the changes, but, I am still glad that I have a job. I just don’t agree with the companies direction for me. I am looking for a place to hang my hat and want to be able to have some faith that I will have a job for the next 3-5 years. I know in this day in age, that’s tough to ask for, but… I feel that after 21 years of doing this, I should be able to get this answer.

I am also wondering about the future of www.aorticdissection.com and if I can really move forward with the non profit plan. As of today, I have spent about $600.00 of the $1600.00 that I need to spend with this company to file all my paper work to the IRS, then the IRS wants anywhere from $200 to $800.00 dollars to process. I would really like to move forward, but my heart/mind and soul need to be grounded in my day job before I can move forward.

I will be back in touch!

Brian

Brian, here’s my story

May 1st (2006) started out great! I was on a golfing mini vacation @ Lake Geneva in Wisconsin (we live in Loves Park, IL). It was me and seven golf buddies playing the golf course called “The Brute”! We were having a great time although looking back I did feel a little weak that day. I thought it was from having one too many brewskies the night before. I’ll never forget what happened on the 17th hole. As I took a drink from my diet soft drink I felt a tearing feeling in my throat. I thought it was just one of those times you get too much air in your throat with the soda. But this was far more painful. The pain started at my throat and went to my stomach and looking back this probably the start of the tear.

I felt really weak and thought I may pass out. I sat down on the golf cart for a couple minutes and seemed to regain my strength. I went back to my ball and wacked it a couple more times to get it on the green. When I arrived at the green I felt this major whooshing feeling that started from my stomach area and ended at my toes. It was like a heat wave starting from top to bottom. One of my buddies looked at me and said “are you sure you’re alright?” I must have looked very pale. I said sure it’s nothing. When we got to the 18th tee, I felt OK, like my old self, no problem. We finished the round, went back to the room and got our suitcases and proceeded to drive home.

About half the way home the pain returned. It felt like a bad stomach ache. In my mind I still did not think it was anything more than a case of stomache flu. By the time I got home it was really getting painful. I took a couple pepsid’s and tried to lay down. When I couldn’t lay down or sit down I knew it was time to get to the hospital. My wife swung by from work and took me to emergency room. From home to the ER St. Anthony’s Hospital in Rockford, IL was brutal. Arrived at the ER a short time later but seemed like it took hours.

The pain was the worst I’ve ever experienced. I thought I was having a heart attack. The pain was a 10 out of 10. It felt as if someone had ripped my chest open and was pouring salt in the wound. When I was nearing passing out they finally gave me some pain meds. Long story short they did an excellent job diagnosing the problem.

 The next think I remember I’m on my way, in an ambulance, up to Univ of Wisc @ Madison where there is an excellent DR for this sort of thing. Dr. Charles Acher and his staff did an excellent job of treating my catastrophe. Five days in Intensive care was followed by six days in a regular room. I was lucky, I didn’t need surgery for my Type B Descending Aortic Dissection. It’s being treated with Meds and like many others on this site, I’m tired much of the time. I don’t get the physical activity I’d like because I feel lazy a lot of the time. But considering the alternative, I’ll deal with it.

As a side note, in 2003 my younger brother (I’m 48 and he’s 44) had the same thing happen only his was a lot worse and required major surgery (again @ UW Madison). That’s how we knew about Dr. Acher. We’ve been told that this is a heriditary condition and neither one of us has ever had high blood pressure nor Marfan’s Syndrome.

September 21st 2009: Bad News, I had to have thorasic Dacron Graft surgery. My surgeon had been watching the size of the injured area and when it got over 6 MM it was time for surgery. My doctor let me wait until after my daughters wedding so I could walk her down the aisle. with a one in 19 chance of paralysis this was very important to me. The night before the surgery was all about prep work at the hospital. UW Madison is a great hospital and every room is a private room. That’s pretty nice if you’re going to be there for a while.

The surgery was just over 7 hours and I was in the Operating Room for 9 hours (they tell me). The surgery went well. The only thing I really remember is being in intensive care when they woke me up the next day (with a ventilator – not good) to find out if I had full function and feeling in my legs. I remember praying to God to let me have my legs back. When they asked me to raise my legs they worked. Thank God for that.

My wife said I raised them way up and was very happy with the results. I then began to motion for them to remove the breathing aparatus. That took another day to remove. The good thing is they give you stuff so you don’t remember too much of anything. Long story short, I thank God for every day. I’m still in recovery mode but getting stronger every day. I’m back bowling again and can’t wait to get back out on the golf course this summer. Thanks for reading this and I pray for each and every one of you people on a regular basis.

God Bless. Jerry

My Dad collapsed at work one morning, in July 2006. He was rushed to hospital where we were told he had a blod clot and that he needed to be sent to another hospital for an operation to remove it, but that he would be fine. He was taken by ambulance and myself and my Mum travelled by car. By time we got there we were told my Dad had had a stroke and that the main artery from the heart was damaged.

We were told that this hospital didn’t have the facilities to operate and that he would need to be blue-lighted to another, however the other hospital refused to operate as they said he would have no quality of life. My Dad died a few hours later, he was 59. It was never explained to us how and why this happened and I know that it won’t bring him back but it would nice to be able to understand this.

Other than having asthma as a child my Dad was fairly healthy, altough he did smoke.By the time we got there he was in a room, unhooked from everything just waiting to die, I always felt not enough was done, but at the same time none of us wanted my Dad and neither would he have wanted to live a life where he had no quality.

His death certificate said Aortic Dissection, how did this happen is what I keep asking myself and how was it not spotted before and why didn’t they do more ? Maybe I need to stop asking these questions, but it would be good if anyone had any opinions on this ?

Many thanks. Jenny Cook, Scotland. UK

This is a picture of my son I took a week or so at a lacrosse camp. We had some of the Stealth’s top players putting on a free clinic. I have had the worst luck trying to keep all my digital camera’s working and saving all the various pictures in an organized manner. I also have a back up drive that is almost full. My son has taken 400-500 picture of little Lego guys making movies and that’s a nightmare to keep up with! LOL!

So, needless to say, I have been trying to get organized this morning and by doing that have run into pictures that I forgot I even had!

I found some of their Halloween pictures. They looked amazing! They were the best dressed KISS band around!

I have been in search of a new laptop as my work took back my laptop they gave me for the accounting lady to be able to close the books. So, I am looking at a Lenovo Think pad T-61 instead of the Dell that I was using. We lost our USTA match last night 1-4, we got smoked. But, I got my new rackets in and I am going to be getting them re-gripped and can’t wait to play with them. My wife and I are meeting with the Hospice people today about her mother along with her sister and husband to determine what’s best for their mom. Well, we just got back from meeting with the Hospice nurses and my wife and sister need to make some decisions. I don’t know why but for some reason, I have been feeling down and out today. I feel that my job security isn’t the greatest and with this economy the way it is, I want to know for sure that they are going to keep me around at least for the next 3-5 years. I guess that’s normal in this climate out in the work world. I am praying that the GOOD LORD will watch over me and help me to be able to continue to provide for my family.

Dear Brian,

After hours of searching on the internet I visited your site.

My name is Francis Proost and I live in Lisse, The Netherlands.

In 2004, my then 86 years old mother called me in the middle of the night, that she was suffering of a terrible pain at her back (between the shoulder blades) and that she had called 911 herself already.

Immediately I got into my car to drive to her in Amsterdam (about 30 minutes from where I live).

To make a very long story a short one, after laying at the Emergency for at least 8 hours (!) still in much pain, she got hospitalized and diagnosed dissection of the aorta.

After 2 days laying at intensive care, the doctor called me that my mom would die within a day. My brother and I called the priest and we said goodbye to my mom (she was not aware of all this).

(The dissection was from just under her chest till her upper legs and the doctor told us that the rupture was too large and her age (risk) too high to get operated, so they just left it).

A wonder happened, she ‘woke up’ and after an other week at the IC, they moved her with other patients on a regular ward.

She stayed for 2 months in the hospital. Had to learn to walk and eat again. Was very weak.

Then she stayed at an old-folks home in my village for another 8 months to recover.

Now, at age 92 she is living by herself again in Amsterdam at the first floor (no elevator), and she is feeling fine!!!!

She takes medication to keep the blood pressure down.

Now my question. My mother really would like to make a cruise (Spain, Greece, Italy). But to go on such a cruise you must fly by plane to Spain where you get on the ship. When we ask the cardiologist if there are risks if she goes on an airplane, his answer always sounds like: sure…………….. (you are already that old, who cares….).

Of course I know she has most of her life behind her, but my mom just does not want to take a risk, neither am I.

Do you know if there are risks?

I surely hope you can answer me, because if the answer is yes, we can forget about this trip.

Thank you very much and I hope you will forgive me that my English is so poor.

Regards,

Francis Proost

Right now, my face is on billboards here in the Poconos in Pennsylvania. A commercial featuring my story plays on TV stations throughout our area. I am “The New Face of Heartcare” for Pocono Medical Center, and I am a walking miracle, thanks to Dr. Nche Zama and his cardiac team and the hospital staff at PMC. I had a total aortic dissection– from inside my heart down to my groin (my femoral artery). Dr. Zama replaced my aortic arch and aortic valve and reattached every organ to my aorta. This all happened on April 14, 2009 at 58. Within three months, I was biking. Today, ten months later, I have already skied 40 times this season.

Dr. Zama tells me that the reason I am alive today is because of timing. He is so humble. (His brilliance tops my list of reasons.) Within 15 minutes of the ambulance’s arrival into the emergency room of PMC, I was being whisked into the operating room. Dr. Zama, who heads the cardio-thorasic unit at PMC, had specifically trained the emergency room staff to be alert to the signs of aortic dissections. He had told them that he never wanted an aortic dissection to go misdiagnosed in that hospital (as you’ve probably read on this site, misdiagnoses is one of the biggest problems).

Dr. Nancy Gabana, the attending emergency room doctor, immediately recognized my condition and used her cell phone to call Dr. Zama’s cell phone. Within seconds, he was shouting orders to prep me for surgery.

As every one of your testimonials state, timing (and the right medical team) is key.

I was conscious (and even talking, they tell me), even as I was being wheeled into surgery. I remember nothing of all this. My wife tells me the details, and she says what helped to pull her through the two days of surgery (first day, to replace the arch and valve, etc; second day to pull away all of the “padding” around all of the sutures and re-close my chest) and the week I was in the hospital, was reading the information on your website.

My dissection occurred while I was teaching my high school anthropology class. In the middle of my lecture, I felt a searing pain, like a hot zipper, rip down my chest, and moments later the pain went to my back. I have back problems (and have had two back surgeries, including a spinal fusion on my upper back), so I thought something had happened to my back. So I told my class, “I’m going to lie down on the floor, because I can’t fall off of the floor.” I talked with the school nurse and administrators who had rushed to my side, and told them about the pain in my back while we waited for the ambulance.

Ironically, on that morning of April 14, 2009, I had started with my usual teaching routine. I began the class with a quote on the whiteboard. That day, I had selected one of my favorites for my philosophy and anthropology classes—a quote by Woody Allen: “If you want to make God laugh, tell him your future plans.”

In less than three hours, the truth of that quote would hit me like a bolt of lightening.

I had only 45 days left until I retired, ending a 36 year career in the classroom. Yes, I was making “future plans.”

The morning went as usual, and by 9:00 a.m., I was in full teaching mode. Suddenly, a pain–much like a hot zipper—ripped through my chest cavity. Three days later, I awoke in the Cardiac Unit of Pocono Medical Center, and my first words were, “What happened to me?” My next question was, “Will I ever ski again”?

Seven days after entering that emergency room, I was discharged. Each day, I gained strength. The cardiac physical therapy (for six weeks) accelerated my progress. By Memorial Day, six weeks later, I was flat-water kayaking.

I know how fortunate I am to be alive. Dr. Zama explained to me that my surgery was more complex than doing 50 heart transplants at once.

I also know how fortunate I am to have suffered NO damage to my organs. The only signs of my dissection are fading scars on my chest and down my leg (although Dr. Zama didn’t need the vein he had removed from my leg) and the light thumping sound of the valve in my chest (I’m getting used to the sound). Also, my fingers and toes get cold when skiing because of the blood thinners.

Did I have any warning signs before the complete dissection? Probably. I had been feeling some pain in my back and numbness in my left arm prior to the event. But anyone with back problems can tell you that back sufferers live with such pain, and the numbness would last for only about five minutes.

I am so proud that Pocono Medical Center is using local media to let me tell my story to my community. Our hospital has grown from a community hospital to a top medical center.

What happened to me is a case of the right people, being in the right places, and most importantly, doing the right things. The team at Pocono Medical Center not only gave me back my life, but they gave me back a life of quality.

Yes, I am now retired. But the truth of the quote “If you want to make God laugh, tell Him your future plans” warns us not to focus only on the future, but to live each day to its fullest.

Mr. Paul Tetor

I found this picture because I have been trying to think of a vision (visual aide) that helps me really try to relay the image that I want this site to bring to people. When I think of the lighthouse, it’s light is shining out into the darkness of the sea. But… when a boat that is lost sees the light, it’s got a new outlook… a “HOPE” that the light will lead them to safety.

I am hoping to continue to strive to provide a place of hope that people can come to and know that there are other out there just like you. Me! I am living proof that you can move forward. You can live a normal life and learn to appreciate each and every day!

The website design is coming along, the non-profit is as well. I found a guy to help me get my website updated. Have a great evening!

Brian

Well, I sent my first payment to a company I found on the Internet to help me get my non-profit paperwork submitted to the IRS for approval. I looked and looked and finally am so happy that I found this organization. They are called the Foundation Group. The cost is $1600.00 and I got them to accept a 6 month payment plan from me. Then, I have to pay the IRS $850.00 to submit it to them for approval. However, they Foundation Group said that fee might go down to $200.00 as the IRS might go online for this process.

I also am getting back on track with my website design and will hopefully have that finished this week. I am watching the Olympics today, I took the day off and it’s quite impressive!

It’s back to work tomorrow and tennis tomorrow at 05:30am! We also have our first USTA Team match this Saturday at 7pm.  I took my dog for a long walk this morning and she’ s tired. We are so glad to have got a dog. My mother in law is still in the rehabilitation facility and pretty soon will be forced to leave there. My wife is looking for possible in-home live in care for her. That’s expensive, but, she’s got bladder cancer which has spread to her spline and it’s not getting any better.

Have a great day!

Brian

I hope everyone is as lucky as me to have a Valentine. My wife is my mine! I am so thankful to have one. I also got my kids each a card, chocolate and a teddy bear for her and a dancing thing for my son. We went and saw the Percy Hawkins movie last night with the kids and a couple of their friends-it was really a good movie.

I am not sure if the Daytona 500 is on today or tomorrow, but I would like to watch it. I am also taking Monday off as both of my kids are out of school. Speaking of schools, we are probably going to pull my daughter out of ABM and send he to the new public high school next year and my son to the new middle school. With the housing market in the toilet, I am hoping we can move back where we used to live sometime this summer.

I seem to have this recurring dream that I am one class short of graduating from college and that I have to go back and take summer school to pass the course and get my diploma… I had this dream again last night and man…. it’s like it’s almost so real, then I wake up and go whooooooooooooooosh… What is the issue? My wife says I have unfinished business I need to do! LOL! I do!  I need to get my new website finished-not sure what happened here? But… the person I hired has completely left me out in the cold. The project was supposed to start last Wednesday and I have not heard from the person since. I paid her $150.00 and have left her emails, posts on the project web and voice mails and no response. I am not sure what to do?  I am also going to have my Forum redone as well, that is supposed to start on Monday. And, then my filing of the 501 (c) form for my non profit. My buddy said to do it myself and he’s an accountant. So, I might try it today.  I also emailed the Marfan.org group to ask them for help, I haven’t heard from them yet.

Don’t forget, if you live in the NY area, to go to the Aortic Symposium 2010 I encourage you to attend if you have the chance, this is the Experts convention. Thanks to Gabe for letting me know about this and his news letter.

My USTA tennis season starts next week and we have our first match on the 20th. My son’s lacrosse starts next week as well and on the 19th, we going to watch the Stealth play again. They are great! If you ever get a chance to see professional lacrosse-go check it out!

I am looking into possibly getting new carpet for the house. Our new dog has chewed it up in a few places, we have spilled Ink from the dog getting a hold of an ink pin and if we do try and sell the house, we will have to get new carpet. Yikes! We are also selling our old couch and love seat on CL and hoping to get $150.00 for them!

Have a great day!

Brian