Rare disease photo contest – showing aortic dissection to the world.

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A rare disease has different classifications over the world. In Sweden it is called “sällsynt diagnos” or “rare diagnosis”. For an illness to be classified as a “rare diagnosis” less than 100 persons out of 1.000.000 get it per year. Aortic Dissection (AD) occurs for less than 30 persons out of 1.000.000 per year. A majority of them dies either before they reach hospital or during or after surgery. So AD classifies as a super rare illness when it comes to survivors. There are not many survivors living with Aortic Dissection and that is why there are no regular patients associations for this group of patients.

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EURORDIS is a non-governmental patient-driven alliance of patient organisations and individuals active in the field of rare diseases, dedicated to improving the quality of life of all people living with rare diseases in Europe. Now they have opened up for an annual photo contest. A way to show rare diseases in an interesting way. I participate with a photo taken by the Swedish famous professional photographer Emelie Asplund – with my disease Acute Aortic Dissection

Timo och Marianne SöderlundPlease vote for my contribution (click here) in a European photo contest for rare diseases. . When i got ill, I had immediate acute open heart surgery, got new heart valves, a graft (tube) to replace part of my aorta, a pacemaker, and now live with a dissected aorta all the way down into my legs. A dissected aorta is like a double-barreled tube, where blood has found its way into the middle layers of the aortic wall and thereby made the aorta to swell. I hope this is one of many photos showing Aortic Dissection 2014. The photo i sent in is taken by Emelie Asplund (professional photographer in Gothenburg, Sweden), and is taken on our 25:th wedding anniversary day 27 may 2014. You can submit your own photo (click here) Let us show the world survivor pictures from many countries all over the world.

Many persons die in vain every year in the emergency rooms in hospitals all over the world in aortic dissection, since it is difficult to make the proper diagnosis. AD is often mistaken for a heart attack, and to make the proper diagnosis digital imaging is needed, as a CT-scan or MRI. Read more in the “Ritter Rules“. The more known Aortic Dissection becomes, the larger the chances to get a proper diagnosis.

Here are links to other AD survivors photos in the contest:

Allison Seed (Philadelphia, Pennsylvania US)
Joanna Husted McIntire (Philadelphia, Pennsylvania US)
Nicola McMeekin (Alnwick, United Kingdom)
Steve Gee (Ashland, Oregon US)
Steve Harris (USA)
Stefan Manning (Partille, Sweden)
Tammy White (Adelaide, Australia)
Timo Soderlund (Sandared, Sweden)

Scandinavian Survivors try to take another joint step – living with Aortic Dissection

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1954 the first surgery was done on aortic dissection in Texas USA by cardiac surgeons  Michael E. DeBakey, Denton Cooley and Oscar Creech. But the disease the surgery can cure is so uncommon that we talk about approximately 3 persons out of 100.000 that get it every year. And perhaps only one or two of these will reach the surgeon in time. (read more) It is a complicated surgery and many die during or failing to recover from surgery. And some survive ! And some live !!!

Aorta Dissektion

There are over 500 (five hundred) survivors to be found on Facebook in a group called Survivors of Aortic Dissection (find it here). Most of them are in the USA, some “down under” in Australia, in New Zeeland, some in Europe in the UK, in Belgium, Denmark and Sweden and in many other countries over the world. In Scandinavia (Denmark, Sweden, Norway, Iceland) we have a small group on Facebook written in the Scandinavian languages where you right now can find 16 (sixteen) survivors. (find the open forum here) There is also a closed forum for Scandinavian survivors where sensitive questions can be handled more freely. In september 2014 these sixteen survivors will try to take some new joint steps more than having formed the Facebook community.  We will blog more about this if, and when, things evolve further.

 

Do you want to make a difference?

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Will you help to promote the start of an Association for survivors with Aortic Dissection either by donating a small fund, or by doing something “pro bono” ?

A. Aortic Dissection – a silent highly lethal killer.

If the inner wall in the aorta tears and ruptures, the blood can stream out in the middle layer in the aorta, creating a false passageway (false lumen) like a double barrel for the blood, causing the aorta to swell and reducing the flow of blood into the other arteries. The enlargement of the aorta may lead to a rupture totally and then the person will die very fast.

Each year thirty (30) persons out of a population of one million (1.000.000) gets ill in Aortic Dissection. From the ones who get the rare condition type A, less than 1 out of 10 survives. More than half dies before reaching hospital. Having survived initial surgery, the number of survivors is reduced further due to infections, new dissections or need of further surgery.

Having survived an acute Type A operation, the survival rate is 75% the first 4-5 years. After that it is reduced to less than 50% in a few years. We talk about a few survivors on a million inhabitants per year.

Sixty years ago we all died. The first surgery on the planet was done 1954 in Texas USA by cardiac surgeons  Michael E. DeBakey, Denton Cooley and Oscar Creech.

DeBakey performing OHS

B. We survived – and now we want to make a difference

Having survived thanks to a lot of good decision by different persons acting in the correct way when I got ill, a fantastic surgical crew at the Sahlgrenska University Hospital in Gothenburg in Sweden, medicines, pacemaker and caregiving from our local hospital, I am still alive and have spent the last year thinking of how I can repay the gift of getting additional time in this life.

I have found others with the same illness as myself, mostly thanks to social networks like facebook and LinkedIn. But it is not easy to get information of how to find others, since we are so few, and there are no “regular” patient association for patients with Aortic Dissection, not in Sweden and probably not anywhere in the whole world.

We all share a rare or even “super rare” diagnose. Many of us also now have a condition where our life is quite different from before. We have remaining dissections in our aortas, pacemakers, new heart valves, suffer from slight or severe damage from open heart surgery and having been connected to heart-lung-machines (brain damage, memory problems, paralyzed etc) With this said, we do not function the way we did before we got ill. Writing this for instance, I have had to ask for help to get it done, since I have problems with spelling, finding words and with concentration.

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C. Creating an independent Association for Aortic Dissection Survivors

Having thought about how to repay the gift of extended life given to me, Firstly I have come to the conclusion that I would like to participate in creating a lasting  serious association independent of single persons (we do not have the same life expectancy as persons who are not ill in AD).

An association that could work to increase knowledge about our illness, reducing the number of persons who dies in vain in emergency rooms in hospitals due to that the staff have not even had though the though Aortic Dissection before it is too late. Personally, I was lucky. After 6 hours in the ER a new doctor went on his shift and thought the thought and sent me for immediate CT-scan. If not for him – I would not be here today.

Second – a place for survivors of AD to turn to, where they can find and meet fellow survivors and solid information about our illness and all that it brings with it. Since we are so few perhaps it should be an international or global association.  I have not figured that out yet.

I think the survivors in the US do a lot of super good things in respect of providing information to doctors and medical staff from foundations like The John Ritter Foundation, and The Thoracic Aortic Disease (TAD) Coalition.

Only problem is that we need that also in Sweden, in the rest of Europe, Australia, Asia, South America and New Zeeland.

And now, from the 19:th September 2014, we have an international official non-profit patients association in Scandinavia founded on a joint initiativ of survivors from Denmark, Norway and Sweden.

D. How you can make a difference

If you would like to participate, either with a small fund, or your skills or other resources, please let me know. Nobody can do this alone. We need help from other friends to set things up to last in a professional way.

Aorta Dissektion

If you do decide to make a difference, I thank you from the bottom of my heart; you will help to prevent people dying in vain

your friend Timo Söderlund

timo.soderlund at gmail.com

Survivors on LinkedIn – living with Aortic Dissection

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To find another survivor in real life is perhaps not so easy living with Aortic Dissection. 3 persons out of a population of 100.000 gets the illness each year. The ones who get acute type A have a survival rate of approximately 7 out of 100. Most of them die long before anyone has even thought of Aortic Dissection as a cause for their pain.

Doing the math, you will get an average of 2 survivors of acute aortic dissection type A out of a population of 1 million per year. The one-two years to come from falling ill, will decimate the numbers heavily further, due to infections, new dissections etc.

It was also only 60 years ago that the first surgery was performed on Aortic Dissection in 1954. (read more – repairing Aortic Dissection with surgery celebrate 60 years 2014)

But the strength in finding another and exchanging thoughts, fears and hope – is strong. And if you have Aortic Dissection, you are not alone. (read more – If you have Aortic Dissection you are not alone)

There are great groups on facebook to find fellow survivors. (Globally – click here  /  In Scandinavia – click here). Now there is also a group on LinkedIn to help survivors find each others. (LinkedIn – click here)

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Gaining Weight – living with Aortic Dissection

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Here comes my story

I used to work as an CEO or management consultant and always told my wife that being heavy was part of my management image working in companies in need of a turn around of some kind (my excuse for beeing heavy). 1 october 2012 I weighed 95 kilo in the morning when i went to work, got ill in aortic dissection type a at 08:15, had a lifesaving acute surgery done starting at 16:00 in the afternoon. Coming home from the ICU some three weeks later I was down to 88 kilo. 15 months later I was up to 102 kilo. This was right after Christmas 2013, having had ham, pudding, sandwiches with Christmas cheese, and not being out walking the meadows during the holidays.

Reaching 102 kilo was a weight gain of approximately 1 kilo per month during 14 months. I now had problems with arthrosis in my back and both hips, my heart was working not so good, I had pains from my chest, back, the aorta, the spine, both hips, had arrhythmia, could not sleep and finally went to the hospital again to get help – again afraid to die. I was not only a physical mess, I was also getting really fat.

Why cant I eat like before – why do I put on weight easier

Having a dissection, is also having a true and a false lumen (passageways for the blood, where the false lumen is the space between the inner and middle layer of the aorta – where no blood should be transported). It really also means that the strength in the aorta to withstand pressure increases and not to swell and rupture is much less than before a dissection. This fact combined with leakage in the heart valves, a synthetic graft as a part of the aorta, a pacemaker to run the heart and loads of medicines combined with knowing that strain from lifting heavy items or making fast och swift moves causing the blood pressure to rise is equivalent to the risk of the dissection to enlarge or even rupture. All this combined makes the life become quite different from what you are used to as a healthy person.

I have stopped doing a lot of physical activities like heavy gardening, carrying groceries from the shop, shifting tires on the car, chopping firewood, exercising by running. From the day I got ill I have not been running once and not liften anything exceeding 7 kilo. I do walk (and I like it), and a walk for me is about 2-3 km per hour, where my wife has the normal pace of 5 km per hour. So my daily energy consumption from movement is much lower than any ordinary person not being ill.

Back to end of december 2013, totally 102 kilo of Timo and the doctor that just had examined me. He had the stomach to say: “you have to lose weight“. Of course he was right. I replied “I want to – but I need help !!

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What I got was the help to help myself from a dietitian in our hospital. I was invited to participate as part of a group of heavy patients in urgent need of losing weight without surgery. In 4 months we were educated in calories, energy need and energy consumption and finally understood that what you put into your mouth, you will burn during your daily activities and just by being alive. The more you move, the more you burn. If you put in more in your mouth than you burn, it will all transform into fat”.

The body is really a chemical fat-burning factory.

Weight is really about mathematics and chemistry. Our body is a chemical plant operated by calories. The ones we supply to it which the factory does not consume, will be stored for later use. If we stop supplying the factory, the factory has to take calories from the storage facilities (around the hips, the belly, the butt etc…)

My experience is that the more you eat, the more your stomach requires to get the sensation of being satisfied and full. And when you start to get real heavy, you probably are used to eating quite large portions, or having seconds and thirds during dinner. This is also a problem to overcome when trying to control the weight. Same with sugar. The more sugar you eat, the more addicted you become. To start the process of loosing weight, is like quit smoking. Very tough the first 3-5 days, getting the body used to the new fact that food (energy) will come in less amounts.

1 kg of the fatty parts of our bodies contains around 780 grams of pure fat and 220 grams of water (I think).  The fat I think equals around 7000 calories of energy. If a slice of cheese is 50 calories, one kilo of our fatty parts equals the energy in 140 slices of delicious cheese. (You know, I looove cheese).

The medication slows down the processes in the factory

The medicines I take daily to reduce my blood pressure are Amlodipin, Enalapril, Furix and Metoprolol. I also take Kaleorid, Trombyl, Omeprazol and Atorvastatin daily as part of my daily medicines.

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Keeping the BP down also lowers the energy level in the whole body. And this does not improve the fat burning process at all. It is like the medicines reduce the efficiency of the chemical plant in our body.

It is not magic, it is all about the numbers

A normal man needs around 2500 calories a day to keep his weight. I am on medicines, have a false lumen, arthrosis, heavy addicted to beta blockers  so I think I should not consume more than 1800 calories a day to keep my weight.

If I want to lose 0,7 kilo weight per week (around 2,5 kg per month), I would need to lose 100 grams per day.  As you remember from what you just read, 100 grams equals 700 calories.

I am a man, weighing 96 kilo, 179 cm tall, and I burn around 260 calories per hour when I walk in average 2 kilometers / hour on a quite flat surface.

So let us use this knowledge and do the math

I should stay under 1800 calories, but if I want to lose 2,5 kilo a month I have to reduce my intake with 700 calories a day. That means not more than 1100 calories. If I can keep up my walking on a daily basis, each hour gives me either the possibility to eat 260 calories more that day (five slices of cheese), or an extra advantage of 37 grams of weight loss per day, or 1 kilogram of weight per month.

The 260 calories burnt walking one hour a day is equivalent to the energy you find in 40 grams of peanut butter – or – half a bagel with salami and Philadelphia cheese – or – three apples – or – two and a half bananas – twelve tomatoes. (google calories and food and you find lots and lots of interesting info on the web). No peanut butter more ! Comprende !

Keeping the weight – always feeling hungry

1100 calories a day is not much. I can tell you very clearly that it makes a guy weighing 96 kilo very hungry and grumpy. (I need 2000 at least to be jolly and happy).

We cannot stop eating completely to lose weight. We need minerals, vitamins etc. daily to keep the chemical factory working in a good way. To stop eating would be like sending home the maintenance guys and stop greasing the machines.

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What we should eat should of course be nutritious food giving a variety of what we need. Vegetables, fruit, grains, meat etc. And need I say – lots of water. If we want to lose weight, I think it is good to get knowledge about how much energy the food we eat contains, and practice on doing the math. What goes in has to be less than what we use in a day.

For the ones of us who can move our bodies, there is one more factor to help us. The more we move (even if it is very slow walks in the park), we burn some more energy than if we do not. All movement is good. Not only for the fat-burning, but also for the heart and rest of the body. But it would of course help if we could run 10 kilometer in maximum speed, lift weights, wrestle with bears, chop wood or pump our bodies daily in the gym to mesmerizing music. (I know I cannot and I also choose not to do this – to maximise my chances to live a little longer)

My dietitian has said that being ill, eating medicines, and not being able to work out like before, a weight loss of  1 to 2 kilo per month is good, and one should be very content reaching this.

Autumn is soon here again and i will try to walk for 2 hours each day, and to stay around 1100-1300 calories five days a week, and perhaps allow myself 2000 calories the remaining two days. If i can do this i think i will again lose som 6-8 kilo during the autumn, and hopefully be close to 90 kilo when it comes up to christmas. What happens during christmas (if I am still alive by then) is again a totally different story.

Note: this text took med three days to write, it probably holds lots of errors, both grammatical and factual, and the scientific value is null and nothing. It is my own findings on the web and what I remember from talks with my dietitian. Please if you are an expert on the subject, do not get upset by the errors, please remember this is my personal perception of reality, not the absolute truth. And you know, even knowing all this, I got down to 92 kilo, and then I had my 50 year birthday, had that celebration, followed by my wife’s summer vacation and a lot of barbecuing, and once again went up to 97,5 kilo. I have started to do the math, and again stopped feeding the chemical plant too much, and are currently at 96 kilo again. My goal? To reach 80 kilo. I should be there in approximately 16 months if a can keep a loss of one kilo per month. 

Note 2: I think I now have changed and added text 4-5 times to this blog post. I had forgotten a lot of what I wanted to say when it was published the first time. And then its been corrected for missing words, grammar, spelling etc several times. It is more difficult to get things right nowadays. I think it has to do with the Pumphead syndrome.

We never give up and we don’t quit – living with Aortic Dissection

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To find another person who has experienced the same as you have, can be as potent a medicine as any pills any doctor can prescribe. It helps you to cope with the whole concept and new reality of being ill in Aortic Dissection.

We never give up and we don’t quit” Jeff Bryan, survivor of Aortic Dissection, says this encouraging a fellow survivor. She is having a dark moment, and needs strength and support to keep holding the head high and not give in to the anxiety. Jeff, having survived Aortic Dissection and still being alive, is not only entitled, but more important, has an authority to say it. And doing this he gives comfort and strength, not just to her, but to every single one of us hearing his words.

Dr Vincenzo Lepore, cardiothoracic surgeon, specialist on lifesaving surgery when it comes to acute aortic dissection type A in Sweden, looked me straight in the eye and said with a firm voice “Why you survived? It was not just time for you to go yet“. These words hold so much more than you can imagine if you have not been close to death.

Having fought the way back to some kind of normal life, every single day enduring the pain, daily facing the anxiety, going in and out of ER in hospitals, meeting doctors not understanding the illness and explaining it all, over and over again, waking up in the middle of the night in pain and in sheer blind fear – and AGAIN AND AGAIN overcoming it all, moving on one more day.

Doing all that, and more – and having survived – you are really in a unique position.

It is all on overtime. It is a bonus. It is a gift. You have been spared, because it was not your time to go yet. And this is a blessing. You could ask yourself if there perhaps is a deeper meaning and perhaps something for you to accomplish before it is your time to go. I do not know what, but why give up now, when you could have done it so easily in the ICU (intensive care unit) after surgery.

We all fall back, for many of us our condition is like a sine wave, going up and down, having some kind of equilibrium a few days before heading on in a new direction again. We survived once. Beeing alive is proof that we have it in us to do it again.

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I end todays blog post by quoting Jeff again “We never give up and we don’t quit  and encouraging you if you are a fellow survivor, to find another survivor if you still have not done that (you are not alone). You find us easily on facebook (search aortic dissection). There are good mojo in these new friends.

Lots of big HUGS from Sweden

Hooray I can walk – Living with Aortic Dissection

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A good day I can walk up to 5 kilometers (3.1 miles).  It takes around 2 hours. Doing this I feel good, alive, strong, and I feel independent. This was my dream when I started to train my way back after having had surgery for my acute aortic dissection type a. I took me almost one year after surgery before I for the first time made the full 5 kilometers.

A normal day I walk around 3,5 kilometers.  (2,2 miles). That usually takes around 1,5 hours.

Going uphill is hard. Two different things make it tough. One is that the new surgically crafted heart valves are leaking, not too much, but still. The second is my medications and pacemaker that combined with a nonfunctioning sinoatrial node keeps my pulse at a steady low-level of around 70 bpm even when it would need to raise in pace. I think it is mainly the betablockers that keeps my pulse down.

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A bad day, like yesterday, I can hardly walk 20 steps before I have to pause. Those days I usually only tread on the lawn of our own back yard.  I would say that one or two days out of seven in a week are such days. And five or six are normal or good days.

Sometimes it is a sharp cutting pain in the chest on the slightest effort that puts an end to any plan of a walk in the woods or on the fields nearby. Yesterday it was not pain, but a feeling that the heart had no power when putting a workload to it. Like there is a small bag around it, and when starting to exhaust it, the bag is tightened and starts to squeeze around the heart and it becomes more and more difficult for it to beat. After ten to twenty steps I had to stop and pause.

A slight cold gives cause to the same symptoms.

Well, to be honest, after the beating the heart has had my first 48 years alive, the last 30 years constantly abused by fat food, nicotine, caffeine, and stress hormones in enormous amounts, and the last 15 getting very little exercise, it is a wonder it still has the capacity to keep me going.

Finally also the beating the day I got ill, when the rip in the inner layer of the aorta going towards the heart destroyed what was still functioning in the heart valves, and then the trauma when some guys opened up the chest and started to work on the heart with a lot of instruments in stainless steel.

It took me a month or two before I dared to watch an OHS (open heart surgery) on youtube. The first time I had to stop, lay down flat on the floor and almost vomited from thinking that what I just saw on the screen was what had been done to my heart just a few weeks ago.

Today I can watch it, but I do not do it anymore (it makes me feel bad and sad). I am so amazed of how the body can be handled, and that repairing the heart and aorta is almost like plumbing and piping, but in organic matter, and that it really works.  Unbelievable. Fantastic. Amazing. Wonderful.

The enclosed youtubelink is to the film I first saw, and having seen this (please do not faint) combined with knowing that battery in a pacemaker sending signals 98% of the beats my heart does (without it my heart would stop) makes me think it is a miracle that I can do my 3,5 kilometers (2,2 miles) almost 5-6 days in a week.

At about 10:40 into the film you can see the synthetic tube put in between the heart and the reamining damaged aorta. Knowing this is there – I think it is a miracle to wake up every morning.

Thank you God, thank you life,  thank you Science and thank you Dr Vincenzo Lepore in the Sahlgrenska University Hospital and the whole cardiac team around him. I appreciate every single heartbeat I got since 1 october 2012 (I can actually feel every single one). Thank you.

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A day in my life – living with Aortic Dissection

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One more day.
Still alive.
Only a little bit of arrythmia.
Piuhhhh…..

I love it!

Here comes the night.
Now it is ground zero again.

Almost falling asleep makes me fall in 100 kmph and this makes me awake again. Most of all it makes me afraid to fall asleep again.

I go over all the names of the people i love in my head and give thanks and praise doing this. Often i have to start over and over having lost track and focus of where i am in the list. There are 130 names in the list. Approximately 10 of the persones are not alive any more…..

I love lying on my left arm and shoulder. Doing this and it takes 20-30 seconds and then i get a sharp pain in the region of the heart. I have to shift position to my right side immidiatley to make it go away.

Sighhhhh……

I pray and hope that i can make it one more night.

Finally i wake again – not knowing when i fell asleep. Now it is 02:00. I get up, go to the toilet, drink 2 glasses of water to make the heart work easier, go out in the garden with our dog. Go to the bed and it starts all over again.

At 05:00 it usually repeats it self all over again. Sometimes it is at 05:30. Then i get the morningpaper in our mailbox when we go out with our dog, look at the ads, study the photos and wait until it is 06:15 and then i take my morning medicines. Now i usually do not go to sleep again, but sometimes i do.

Wow. Here comes another day in life. I love it !!!!

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Part of my intellect died on the surgeon’s table – Living with Aortic Dissection

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It is commonly called pumphead or postperfusion syndrome. The symptoms are subtle and include defects associated with attention, concentration, short-term memory, fine motor function, and speed of mental and motor responses (according to Wikipedia).

For me in my daily life it is having a bad short-term memory, (what i do not program into my mobile with an alarm i most probably will not remember), keeping track of names, finding the right words in a conversation, being able to think logically in sequenced steps, solving Sudoku, not being able to focus to read more than 2 pages in a book without loosing focus and thereby the context of the text, problems with spelling, low capacity of problem solving, ability to cope with stress etc. If i compare myself today, to how i perceived my self before i went under surgery I would say i woke up as a totally different person after surgery when it boils down to mental skills.

Writing a text like this is a project that takes a lot of energy, the text has to be corrected about 10-15 times for spelling errors, double words, missing words etc, and still when i read it slowly after putting it on the blog, i probable find errors on many places that i just could not see before.

I heard the word pumphead for the first time in my life, not by a doctor, but on facebook in the Aortic Dissection survivors group (wonderful group, and wonderful persons in the group). And all of a sudden i was relieved to get one more answer to what had happened to the large part of my intellect that is missing after having survived acute aortic dissection type A.

Shortly after surgery the doctors said that the slow brain was caused mainly by chemicals used during surgery and that i would go back to normal in a while. Only one doctor was direct and said, “you may need to live with this the rest of your life, so get used to it and start training your brain with different techniques“. I love this doctor for his direct and very honest approach to the matter. Since that day i have trained my brain every single day, in different ways.

One is that i have a list of names i go through every day. In the same time i thank the lord for the persons i the list. That is combining two important things in my daily routines :) Another is that I program everything of importance into my mobile phone with a sound alarm that goes off two times, first two hours before and then one hour before i need to do something.

Sorry, now i can’t do more today. I end this post with a photo from airport Charles de Gaulle in Paris France. Some 7-8 years ago i was travelling to France every monday morning with the 06:30 plane, and returning to Sweden on friday evening to spend the weekend with my wife and children. That specific year I worked with change management in a French company in Amiens, north of Paris. That was before i got my pumphead. Big hugs to everyone – and remember - life is wonderful also with a pumphead.

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Repairing Aortic Dissection with surgery celebrate 60 years 2014

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It is silent, unknown and highly lethal. It is still often misdiagnosed in the ER (emergency room) in hospitals all over the world for a heart attack, stress, flu, angina etc.

Many persons unfortunately die in vain every year, due to lack of knowledge and routines within the staff in the ER concerning a disease that has claimed numerous lives of unknown and famous citizens of the world.

I enclose two stories from Wikipedia as an example:

On September 11, 2003, Mr John Ritter (Wikipedia) was rehearsing for 8 Simple Rules for Dating My Teenage Daughter when he fell ill. He began sweating profusely, vomiting and complained of having chest pains. He was taken across the street to the Providence Saint Joseph Medical Center. Physicians misdiagnosed Ritter and treated him for a heart attack but his condition worsened. Physicians then detected that Ritter had an aortic dissection. Ritter died during surgery to repair the dissection at 10:48 p.m.

Mr Jonathan Larson (Wikipedia) died unexpectedly the morning of Rent’s first preview performance Off Broadway. He suffered an aortic dissection, believed to have been caused by undiagnosed Marfan syndrome, in the early morning on January 25, 1996. New York State medical investigators concluded that if the aortic dissection had been properly diagnosed and treated, Larson would have lived.He had been suffering chest pains and also had nausea for several days prior to his death, but doctors at Cabrini Medical Center and St. Vincent’s Hospital could not find signs of a heart attack and so misdiagnosed it either as flu or stress.

Today it is 2014, and this year we celebrate 60 years since the first surgery was done on aortic dissection in Texas USA by cardiac surgeons  Michael E. DeBakey, Denton Cooley and Oscar Creech. But the disease the surgery can cure is so uncommon that we talk about approximately 3 persons out of 100.000 that get it every year. And perhaps one or two of these will reach the surgeon in time.

In the city close to where I live in Sweden, Borås, we have about 100.000 inhabitants. That would mean that 3 persons in average get ill in Aortic Dissection every year. In average one of these three probably dies at home before he gets to hospital, the second either home or during treatment and the remaining third has a slim chance to make it through surgery and survive.

For me personally the doctors in the ER could not make a proper diagnosis until a cardiologist after 6 hours joined their team and ordered av CT-scan of the heart and aorta. First then a proper diagnosis was made. Then I had to be transported to a hospital with the knowledge to perform open heart surgery and repair of the aorta. Luckily for me the cardiologist was working that specific day in the ER of our local hospital, and a hospital that could perform emergency surgery was as close as 65 kilometers away.

This blog and many other blogs around the world, as well as webpages, books and social media are ways of the survivors of Aortic Dissection to try to increase the knowledge and interest for Aortic Dissection.

Of course doctors who never has confronted a patient with Aortic Dissection has problems in making a proper diagnosis. This is where the hospital and hospital management are responsible to put in routines in the ER to help the doctors and nurses to make a proper diagnosis.

Without proper routines to guide the staff to perform for instance a CT-scan quite early, many persons will continue to die in vain in the ER of hospitals. Having read the local newspaper since i got ill 20 months ago, i think that at least 2 persons has died in the ER of our local hospital due to that a proper diagnosis could not be made in time.

A way to improve the odds is to talk, write, blog, twitter about this disease that kills people every day in vain, partly just because it is so unknown.

The photo chosen today is showing a team including Dr DeBakey performing open heart surgery (found on this webpage)

DeBakey performing OHS

 

 

 

 

Living with Aortic Dissection is living right here right now

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I was 48 when it hit me (Aortic Dissection type A). Now I am 50, and i have been alive almost 22 months. In two months I am in for my second re-birthday. Sound strange, doesn’t it? Re-birthday? Well ask anyone with our disease and you will understand there is nothing strange about it at all. When the aorta tears, the clocks stop and time re-starts all over again.

Waking up from surgery 2:nd of October 2012 and the days to come, my cardiac surgeon visited me every morning until I was moved to another hospital closer to my home. His last advice to me was to ask for help with counseling/therapy to cope with the anxiety that had taken a firm grip of me. Every second i was so happy to be alive, but at the same so extremely afraid that my heart or aorta would fail and that i would die (again). I was not sure if I really had died, and this reality was something new, perhaps Purgatory. In fact, the way i perceived what had happened and was happening, i could not recognize much from the way i felt and perceived reality before i got ill. This is still the case, by the way, but it doesn’t make me so afraid any more, and I do not think so much about it since I can’t do anything about it.

Aorta Dissektion

To cope with the anxiety and fear of death i told the cardiologists in the hospital close to home that i wanted to talk to a psychologist. What i got was as good, it was a counselor who works with patients close to death, both the ones that are about to die, and the ones that will make it. First time we met i could not walk by myself and had to be wheelchaired into a small room in the Coronary Care Unit. This counselor, just by talking and listening, helped me to cope with the anxiety without drugs. She gave me some simple techniques to handle the thought when the fear of death became to overwhelming. One was to take a piece of cloth between the fingers in one hand and rub it between the fingers, and try to focus on the fingers, the cloth, the fabric, the texture and to think about what it was, how it felt etc – to gently move the thoughts away from the thoughts of fear and death. I have been seeing her every week the first year, and then not quite so often another 6 months.

The discussions we had during these 1,5 years helped me to change my way of perceiving myself, the way i thought other people expect me to become again, and mainly to accept that life is right here, it is right now, and there are no warranties about tomorrow or later on. The question about how long will i live, how many days, weeks months will i have before i end up on the surgeons table again, and this time finally pass away – haunted me. I asked most of the doctors in our local hospital, but most of them had not any or very little experience of a type A survivor, and when it came to statistics , none. So i made an appointment with the surgeon who saved my life, Dr Vincenzo Lepore at the Sahlgrenska University hospital in Gothenburg. I went there with my wife to get the statistic, but what i got was the words i needed to hear.

“You have to live right here right now. There are no warranties. Anyone in this room can be dead in three years time from cancer. Stop thinking about this and focus on living

These words and the help of the counselor in our local hospital was what has helped me to totally rethink my situation and the meaning/concept of life has got a totally new proportion for me.

It is simple. We just make it so darn difficult before we come close to death with all our plans, and postponement of things that we will do later on – since we all perceive life as going on for ever, until we end up in a situation where we all of a sudden understand that life if very fragile and definitely not forever, at least not as we know it here and now.

Sorry , now i am totally exhausted, and can not go on more today. But remember this – do not be afraid or embarrassed to ask for help with the anxiety. You will feel better much faster if you receive help to cope with anxiety and fear of death, living with aortic dissection.

We all share the anxiety and fear. We get it every time when we feel pain close to our heart or in the aorta. By getting help how to handle the fear, we can gradually start to live with it, without letting it cripple us too much. (The photo I enclose show a small pond in Borås in Sweden close to our home. I think it show the beauty of the life-concept in a nice way)

Big hugs from Sweden

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If You have Aortic Dissection – You are not alone

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Surviving Aortic Dissection of any type gives an impact on life as we knew it before we got ill. Waking up from a surgery made on emergency basis, having survived open heart surgery and have been in a heart lung machine is classified as trauma by the doctors. For me personally I had to learn everything from the beginning when I woke up after surgery. Sight, hearing, breathing, talk, peeing, taking a poop (crap), standing up, walking, and later on social behavior with people outside my closest family. The odds to survive are low, and the number of survivors are not so many. Doctors (cardiologists) focus mostly on rehabilitation physically after a surgery, and checking that medications put in are OK, but sadly they often miss the mental part, that probably is as damaged or more than the aorta that broke.

Before we got ill we were teachers, firefighters, soldiers, traders, managers, farmers, carpenters, handy-men, actors, nurses – and when we understand what incredible luck we have had to survive our illness and start to recover slowly physically, many of us start to realise that we are not the same anymore. For many of us it is just enough to be alive and cope one day at a time, and we are not able to continue the work we did before.

Some of us can not work anymore due to remaining dissection, heart problems, mental problems, medications, other physical problems that occurred as a result of surgery, and all the small and big things that limits us from doing whatever we did before we got ill. Perhaps You start to realise this when the drugs start to wear off after surgery and the brain slowly start to function a little bit more than when life is mostly about your own body and pains, and nothing beyond that is understandable or interesting at all. This is when you start to feel alone. And perhaps you have been sent home from hospital with a lot of drugs and thousands of unanswered questions.

For me this was the case in 2013. I did not understand my body, did not understand the illness, and realised that i was not the same person that got ill, and that i had to rethink my whole life/situation. Happily and luckily i had a dark moment one day and call the hospital that saved my life, and spoke about all my despair and questions to a nurse who did the right thing for me. She said “You are not alone“, and she arranged for me to get in contact with another survivor.

Soon after that i also found my way to the english facebook group “Survivors of Aortic Dissection“. ( A group with more than 450 persons). I also found Brian S. Tinsley’s page Aorticdissection.com where i could read stories from other survivors. And a scandinavian facebookgroup was formed by Anders Jansson in Stockholm, who invited Swedish, Danish and Norwegian survivors to his closed group. (A group with some 15 survivors).  I also got contact with one person in these groups who lives quite close to me, and we met IRL, His name is Stefan Manning, and he has made a webpage about Aortic dissection in Swedish called aortadissektion.se , writes a blog in Swedish about his life, training and illness called Ultrastefan – going to Badwater and will publish a book about his life in the coming future.

For me the contact to others with Aortic Dissection has been very important. It has given me strength mentally to handle my situation. It has also given perspective to my situation. There are many in the exactly same situation, we share the same problems, fears, we have the same limitations and we all have been very close to the point of no return. Some of us have more problems, and some are blessed and experience less limitations in their daily lives. I would like to write more today, but now i am to tired. So finally i enclose a photo of Stefan Manning and me the first time we met.

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The day I got ill in Aortic Dissection Type A

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The 15 August 2013 i had the strength to write my story the first time in English. I did it to the page AorticDissection.com to spread knowledge about what had happened to me, the following text is a copy of what is to be found in AorticDissection.com.

“Having worked as CEO in companies in need of financial turnaround and as manager in projects concerning change management, my life has included a high level of blood pressure. Now, i can only regret that i did not visit doctors more often and that i did not put health more as an priority until i got ill.

Monday 1 October 2012, i rose from bed around 05:00 in the morning and by 05:30 i was sitting by the computer handling mails and making payments on line. As usual i had a large cup of coffee, and a fair amount of “snuff” under my upper lip. (snuff is grined tobacco that is fairly common to use in Sweden, while smoking is not so popular any more).

At 07:30 i got ready to drive to work. This day a lite bit more tense than the last weeks. After a few months of discussion i had agreed to once again take on a heavy management duty where operations on the field was more important than thinking out strategies by a desk. And this morning would be the first day in office taking responsibility of around 400 employees, 4 production units in 3 countries in Europe, and a fair amount of turnover and profit. Already in the car i felt that the tension was unusually high this morning.

At 08:00 i picked up my first cup of coffee, walked through the office landscapes, and paid the personnel department a short visit. At 08:30 i was sitting in the office of one of the groups senior executives discussing the trip he had made with his wife the previous week. During the discussion i was going over the plan for that day in my head, probably for the 10:th time since i rose this morning. I reached over the table to get hold of my cup of coffee, and doing so something broke in my chest. I got afraid, and did not know what to do – so i rose and excused my self and sid i had to go to the bathroom. Stepping out from the office i realized i was in serious problems and probably was going to die. The pain in the chest was a cutting pain, and both my kidneys and throat was hurting very much at the same time. I stumbled in through the next office door, and asked the lady sitting there to call an ambulance, and sat down on a chair.

I arrived in the local hospital with ambulance around 09:10. There the doctors in the emergency room started to look for what was wrong. It took over 6 hours of EEG and a lot of doctors scratching their heads, before a cardiologist decided to make a CT-scan and an ultrasound control of the heart.

After that all changed. All personnel become very worried and i was told that my condition was critical, and i was sent with ambulance to the nearest university hospital 60 kilometers away for surgery at 15:30. I had AADA (acute aortic dissection type A) and the travel in the ambulance went on very high speed with sirens on the whole trip. I had time to think through my life and also to accept that this could be the day when my life was coming to an end. But it was not. I woke from surgery the next evening. Beside fixing the type A dissection, the surgeons also had repaired my heart valves biologically. 12 days in hospital followed and then i was sent home. 2 week later i was back since i now also had AVB (atrioventricular block) probably as an result of the main surgery, and now had a pacemaker put in.

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I am now 10 and a half months past surgery, and i have recovered in a very good way. I am not working, and will probably never work again. I go 3 days a week for training i my local hospital. I eat nine different medicines on daily basis, and they make me fell good but tired. We have got a dog 7 months ago, and i go for a walk in the woods every day. In the beginning it was a few hundred meters, now it can be 4-5 kilomters each day. The pace in though low, around 3 km/hour, probably due to the medicines.

There are most probably a lot of spelling errors in this text. This and also problems with my short term memory are a few of the side effects from the surgery where a heart-lung machine was used and a temperature drop to 20 deg Celsius was part of the procedure.

What had helped me a lot is that i have been blessed with therapy in addition to medications and physical training. Having had help to learn to cope with the fear of not knowing anything about the future, and accepting that life is now on a daily basis, i had not handled without solid professional help. This has made it possible for me to go on without medication handling anxiety. Another important factor has been that with help of the hospital we have formed a group of 7 people in Sweden and Denmark on facebook, who all have suffered from AD. This has also been very comforting when we all have found out that we almost all share the same fears. And talking about it with someone who is in the same situation is really comforting.

Well this is my story. I can also say that i love life in a more direct way now. I thank God each day for both family, friends and the nature that we live in. All that before was so normal, i now do not take for granted any more. I fell blessed to be alive and thankful for all the help i have received.”

I am still alive.

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My last blog post was done 30:th september 2012. 1 october 2012 my life changed dramatically. I got ill in Acute Aortic Dissection type A that ripped the inner layer in my aorta apart causing the aorta to swell and a false lumen to grow in both directions, towards the heart and also down towards the kidneys, stomach and legs. Today i have two scars on my chest as a reminder of october 2012. A large one from when my chest was opened and my aorta was locally repaired in the aortic arch with a graft and a new heart valve was constructed in my heart to replace the broken one. The second and smaller scar, is from when a pacemaker was put in a few weeks later as a result of damages to the heart during the first surgery. To survive Acute Aortic dissection type A, and to still be alive almost two years later (i think) has a probability of about 4%. From now on i think it is about 7-8% mortality annually if nothing out of the ordinary happens. This blog is about my life.

Aortic dissection

LinkedIn nätverksmöte i Borås Stad med 92 Boråsare

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7H33 Borås – LinkedIn. Igår var det IRL möte (möte In Real Life) för BoråsGruppen på LinkedIn. Totalt medverkade 92 goa Boråsare på en lunch på Ellagården. Lokalkanalen i Borås Stad var på plats och rapporterade “Tidigare var det i handelsklubbar och Rotary som företagarna träffades, nu är det digitala nätverk på webben som gäller. Men man träffas också i verkligheten – eller ”in real life” IRL – som dom kunniga säger. Idag var det lunch med Linkedin-nätverket ”City of Borås” på Ellagården i Viared. Möt också Lars Gustaf Andersson, kokhet i TV4-programmet ”Halv åtta hos mig”…” (läs mer) Foto och film i detta blogginlägg kommer från Lokalkanalen i Borås

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