En riktigt bra patientbroschyr från Danmark

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I Danmark är man också duktig på bra information kring Aortadissektion. Här en publikation på nätet på Danska riktad till oss som är sjuka i Aorta Dissektion och våra familjer, från OUH Odense Universitetshospital.

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Den tar utgångspunkt i oss som HELA människor – den trasiga intiman i aortan och medicinsk fakta är endast en liten del. Det handlar mycket mer om hur vi som är sjuka kan påverka vår situation – kost – träning – psyke – mm mm. Läs den om du inte redan gjort det. (klicka här)

Min fina Aortic Warriors t-shirt har kommit från USA

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Min fina Aortic Warriors t-shirt har kommit från USA. I USA engagerar sig människor varje vecka med att på gräsrotsnivå informera om sjukdomen Aorta Dissektion, under den gemensamma logotypen ”Aortic Warriors”.

AORTICWARRIOR SWEDEN 2014

Peter Tsai som överlevt AD typ A precis som jag har gjort, är eldsjälen bakom denna gräsrotsrörelse. Aortic Warriors har ett mål att genom kommunikation och information minska den initiala dödligheten från den av dem angivna nivån 80%, till 20% och därmed rädda liv. Ett annat mål är att stötta andra överlevare som lever med Aorta Dissektion. ”YOU ARE NOT ALONE​” är ett slagord som Peter Tsai upprepar gång på gång i sin kommunikation. Nu finns det ännu en gräsrot i Sverige.

Vi kan inte starta en gräsklippare eller hugga ved – men vi kan göra en fotobok

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Tillsammans med 14 andra, som alla har fotografering och naturen som något dom tycker mycket om – har vi gjort en fotobok med naturfotografier. Förutom foto och natur, delar vi alla femton även samma sällsynta sjukdom – Aorta Dissektion Typ A, vilket innebär att vi alla opererats akut med öppen hjärtkirurgi, fått en del av aortan utbytt mot en protes och även fått våra aortaklaffar lagade.

Många av oss har permanent pacemaker, vi har alla varierande grad av kvarvarande skador på kroppspulsåder och andra artärer kopplade till den. Vi får/kan inte längre starta en gräsklippare, kan inte hugga ved, får tänka oss för när vi går på toaletten för att inte ta i för mycket, vara försiktiga när vi nyser – allt för att inte öka trycket för mycket i våra blodkärl – så att dom inte sväller ytterligare och eventuellt brister.

Fotobok Aorta Dissektion typ aOm vi bortser från det vi inte kan göra – så finns det också saker vi kan göra. En är att ta bilder, med kameror eller mobiler. Och nu har vi samlat en del av dessa i en gemensam fotobok som trycks i endast 20 exemplar. 15 av dem går till oss som fotograferat (Australien, Nya Zealand, Oregon, Florida, Michigan, Danmark, Pennsylvania, England, Sverige, New Jersey, Massachusetts, Kalifornien). En av dem skall skickas till Amy Yasbeck som grundat The John Ritter Foundation, och någon skall gå till andra speciella personer.

Aorta Dissektion Föreningen Skandinavien invalda i Riksföreningen Sällsynta Diagnoser

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Vår sällsynta sjukdom Aorta Dissektion, och vi som lever med den (vår patientförening) har igår blivit invalda som patientförening hos Riksföreningen Sällsynta Diagnoser. Detta är ett viktigt steg för oss som överlevt och lever med sjukdomen, då vår sjukdom inte finns med på Socialstyrelsens lista över ovanliga sjukdomar. Det innebär att personal på försäkringskassa, sjukhus mm – inte får en samstämmig information om sjukdomen från Socialstyrelsen.

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Vi har tidigare varit i kontakt med Socialstyrelsen, och dom har lovat ta upp frågan om att kanske få med vår diagnos på listan över sällsynta sjukdomar. Att vår patientförening Aorta Dissektion Föreningen Skandinavien – nu blivit invald i Riksföreningen Sällsynta Diagnoser – är ett stort steg i rätt riktning för att göra vår sjukdom mer känd – även officiellt vid sidan om allt tjat här på facebook och denna blogg. (läs mer)

PS: bilden är köpt på bildsidan 123rf.com

Ny svensk hemsida om sjukdomen Aorta Dissektion

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Hemsidan AortaDissektion.com är en svensk hemsida som är ett privat initiativ av mig (Timo Söderlund), att öka informationsutbudet kring den sällsynta sjukdomen Aorta Dissektion Typ A.

Sidan kan inte användas för medicinska råd, utan skall ses som en länksamling med länkar som antingen kan hjälpa människor med sjukdomen att finna andra med samma sjukdom, eller länkar till mer information kring sjukdomen för den som söker mer information.

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Jag har ingen som helst medicinsk kunskap, utan har sammanställt saker jag lärt mig de två år jag själv varit sjuk i Aorta Dissektion Typ A. Jag har också tagit med länkar till sidor jag själv tycker ger en bra information kring denna okända sjukdom.

PS: bilden är köpt från bildsidan 123rf.com

Aortic Warriors informerar om Aorta Dissektion

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I USA arbetar människor varje vecka med att på gräsrotsnivå åka runt och informera om sjukdomen Aorta Dissektion, under den gemensamma logotypen ”Aortic Warriors”.

Aortic Warriors TM logo

Aortic Warriors TM logo

Peter Tsai som överlevt AD typ A, är eldsjälen bakom denna gräsrotsrörelse. Här en film från Youtube tagen den 5:e oktober, då Aortic Warriors tillsamman med en lokal Marfans förening höll information om sjukdomen. I filmen som är på Engelska (15 minuter) intervjuas människor med Marfans som också drabbats av Aorta Dissektion.

Aortic Warriors mål är att genom kommunikation och information minska den initiala dödligheten från den av dem angivna nivån 80%, till 20% och därmed rädda liv.

Projekt fotobok

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Idag påbörjade jag ett litet projekt med att samla ihop naturbilder fotograferade av överlevare med Aorta Dissektion typ A. Om det blir bra så tänkte jag låta trycka dels någon almanacka med foto, och en fotobok med naturbilder från olika delar av världen. Vi får se hur det går.

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Aorta Dissektion Föreningen Skandinavien first time in the Media

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There is always a first time for everything. Today, four days after having participated to found the non-profit patients association, our friend Stefan Manning hits the head-lines in a great article in the swedish tabloid press.

stefan manning aortic warrior

Please note that Stefan is dressed in the Warrior t-shirt (by Peter Tsai and the ”Aortic Warriors” concept from California USA). The article is about the launch of Stefans new book at the national bookfair this weekend, and about our new Skandinavian association for Aortic Dissection Survivors in Scandinavia.

stefan manning bokExcellent & congratulations Stefan to a great first media impact! Horray !

We did it – living with Aortic Dissection

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We did it. We have founded an international patients (survivors)  non-profit association for a super rare diagnosis, and even more rare when it comes to survivors of the illness that is so lethal. ”Aorta Dissektion Föreningen Skandinavien”

Seventeen survivors, all in different cities in Scandinavia.
Four (4) survivors in Denmark from Tønder, Fredrikshavn, Stenløse and Aalborg.
One (1) survivor in Norway: Flisa.
Twelwe (12) survivors in Sweden from Mariefred, Sollentuna, Gävle, Göteborg, Eslöv, Örebro, Alingsås, Stenungsund, Partille, Staffanstorp, Hällingsjö and Sandared.
Together we have founded the first non-profit international patients association for survivors of Aortic Dissection in the World.

Aorta Dissektion

We have statutes that has been discussed and revised nine times before we all agreed. We have a formal board with a chairman, secretary and treasurer. We have an auditor, and two alternate board members. All in all five (5) survivors has taken on formal duties to be able to set up the association.

Most of us have never met in real life, we have found each other with help of internet, we have had meetings in closed forums on facebook, live meetings over Skype, and we have had an open democratic debate to agree upon the statutes to give guidance as for what the association is about, how it is run, and how it will survive most of us who are the founders. We finally agreed on a meeting that lasted most of the day friday the 19:th of September 2014. We have during the day voted for the board, and elected a chariman, a secretary, a treasurer, a auditor to revise the annual accounts, and two alternated board members. It is a Scandinavian organisation, who will use the Scandinavian languages in public communication, Danish, Nowegian and Swedish. Main aim is to get known to all the survivors in Scandinavia, so that survivors who never met another survivor can find others, and to provide support among ourselves within the group.

DeBakey performing OHS

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. There are no official statistics in Scandinavia when it comes to who many survivors there are in our countries.

We will now proceed with all the administration to formally set up the organisation, registering it with the approriate authorities, joining larger organisations like the ”Rare disease” association founded by the Swedish National Board of Health and Welfare. We will also get the word out to media, and to all the university hopitals performing surgery and who has ICU handeling AD patients in the Scandinavian countries.

1954 the first surgery on AD was done. 2014 the first official patient organisation was founded. Horray !

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.

Aorta Dissektion

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.

Aortic dissection

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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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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