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.

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

Kanske sista kvällsdoppet sommaren 2012

7H33 Borås – Weekend. Efter en dag med gräsklippning och eftermiddagskaffe i solen vid Viaredssjön, så blev det ett avslutande kvällsdopp vid Rydets badstrand. Kanske sommarens sista, beroende på hur vädret utvecklar sig i veckan. De första veckorna i Augusti har bjudit på ett ganska härligt väder i Borås. Bland alla regnskurar har solen tittat fram och vi har fått känna av sommarvärmen även om semestern tagit slut sedan några veckor. Om det var varm i vattnet? Nja, det kunde ju varit lite varmare, men det var friskt och härligt.

Underbara sommarkvällar i Augusti i Borås

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7H33 Borås – fotoreportage. Vi har kommit till mitten av Augusti, och sommaren hänger sig kvar i Borås Stad med helt underbara sommarkvällar. Dagens bloggbilder från Borås är tagna vid en kort kvällspromenad längs med Viaredssjön igår kväll. Solen går nu upp lite senare varje morgon, och det börjar märkas en aning att vi går från sommar mot höst.  Hoppas att ni alla får njuta av en underbar sommardag, även om de flesta av oss nu är tillbaka på jobbet. Passa på att gå ut när jobbet är över, och njut av den underbara natur vi Boråsare har runt omkring oss.

Sommarväder i Borås denna idrottssöndag

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7H33 Borås – Weekend. Ett härligt sommarväder har vi haft i Borås i helgen. Sol, värme och luften har varit full med fjärilar. Vi har passat på att njuta av vädret och trevligt sällskap under helgen, och hade en fantastisk eftermiddag vid Viaredssjön där vi fotograferade både fjärilar och gräshoppor. Idag spelar Elfsborg en mycket viktig match mot Malmö, och samtidigt spelar Sverige OS-final i handboll mot Frankrike. En riktig sportsöndag, som kan avslutas med både jubel och klang. Låt oss hoppas på det.

Soundcheck inför @Sommartorsdagarna i Borås idag i Världsklass

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7H33 Borås – Breaking News. Soundcheck på Stora Torget i Borås City idag inför Sommartorsdagarna. Ikväll uppträder Kalle Moraeus och Molly Sandén. 7H33 Borås som följde soundcheck på plats på torget uppmanar Boråsarna att gå man ur huse.

Det låter jättebra !!! Kvällens uppträdande kommer sannolikt att bjuda på bland det bästa i musikväg vi kommer att få uppleva på ett bra tag i Borås Stad

Turister berömmer Borås Djurpark

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7H33 Borås – fotoreportage. Efter att besökt Borås Djurpark i början av semestern (läs mer), så blev det dags för ett nytt besök igår igen.

Vädret var mycket bra, och djuren i Djurparken på gott humör.

Detta besöket gjorde vi med goda vänner som kommit upp till Sverige från Södra Europa, och vi ville visa upp något av det bästa som Sverige har att erbjuda – och då stannade vi givetvis kvar i Borås Stad – och åkte bland annat till Djurparken.

En nästan 4 timmars promenad tog oss genom hela djurparken, och glada och nöjda med vad vi upplevt, så åkte vi ner till Sandwalls plats i Borås City och unnade oss en fantastiskt god fika på Café Viskan, där vi satt och njöt av både solsken och över att kunna blicka ut över Viskan och den vackra Stadsparken. Vi instämmer med våra goda vänner i deras iakttagelse att Borås Stad utvecklats otroligt positivt de senaste åren, och att vår stad är idag har mycket att erbjuda för turister. Betyget “Världsklass” fick igår en bekräftelse av 3 glada Boråsbesökare.

En underbar augustimorgon i Borås City

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7H33 Borås – Fotoreportage. Onsdag morgon 1 augusti 2012 har det hunnit bli. Morgonen i Borås Stad var idag helt fantastisk. Solen steg över taktopparna i Borås City och livet känns en dag som denna helt fantastiskt.

En promenad över Teaterbron in i Stadsparken inledde vår morgon. Här var första stopp ett besök vid skulpturen Lodjuret av Arvid Knöppel.

Efter en stunds fotograferande och en härlig promenad bland blommor och planteringar i Stadsparken korsade vi Teaterbron igen och inhandlade dagens första Latte hos Café Viskan.

På väg till kontoret blev vi stående en lång stund vid de underbara skyltfönstren hos livsstilsbutiken Greta & Anna på Lilla Brogatan 22 mitt i Borås City där vi tog några sista Boråsbilder innan vi klev in på 7H33 Borås kontor på Lilla Brogatan 19.

Med dessa små rader önskar vi alla våra läsare en helt underbar onsdag i underbara Borås. // Redaktionen 7H33 Borås

En fantastisk semester hemma i Borås

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7H33 Borås – Semestersummering. I sommar har bloggen 7H33 Borås semestrat hemma i Borås Stad. Det har varit en av våra bästa semesterledigheter på länge. Vi har valt att fira vår semester i vår egen stad, och försökt och faktiskt upptäckt vår egen stad Borås på nytt.

En dag gick vi runt på Borås Djurpark, och det var en av höjdpunkterna under semestern. Den nya anläggningen för våra svenska rovdjur imponerade och i allt var Djurparken en helt fantastisk upplevelse.

Vi har också besökt ett antal Sommartorsdagar i Borås City och sett och hört helt fantastiska artister som kommit till Borås för att underhålla oss Boråsare.

Promenader med kamera under semestern utan fastställda mål och utan några tider att passa i Borås har visat fram vår stads skönhet på ett sätt som man kanske inte tänker på när man är i stan och jobbar när det inte är semester.

Borås är vacker på både dagar och kvällar, och några av kvällspromenaderna har varit helt magiska. Sommarvärmen, vårt Nordiska ljus på sommarkvällarna och den vackra miljön kring Viskan och Sandwalls Plats gör Borås till en fantastisk turistupplevelse för alla turister men även för oss som bor och lever i Staden året om.

Med hjälp av buss, tåg och bil har vi gjort några små dagutflykter, där en gick till  Göteborg för att äta räksmörgås

och den andra till Boråsarnas egen Riviera Varberg för den årliga traditionen att få bada i havet åtminstone en gång per år.

Summa summarum så får årets semester betyget “Gööör bra” och Borås befäster sitt betyg som Världens Bästa Stad 2011 – som inte kan bli annat än “Världsklass

7H33 Borås tar en titt på kulturen i Borås

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7H33 Borås – Mitt i kulturen Skulpturen “Walking to Borås” (eller Pinocchio) är kanske en av Borås mest omtalade skulpturer.

Men det finns så många andra skulpturer att titta på för den som är intresserad, så som “Ute”, “Bodhi” och den i Borås så omskrivna “Declination”, en gul skulptur som det både klättrats och klottrats på.

Nu finns också skulturen “Mann” som står vid entrén till Gustav Adolfskyrkan, eller varför inte skulturen Kanllen som nu står längst ner på Gågatan i Borås.

I Borås Stad kan du göra en “interaktiv” egen skulpturvanding på Internet (klicka här).

Du kan också gå med på en riktig skulpturvandring i Borås, anordnad av Borås Konstmuseum (läs mer – klicka här)