Aortic dissection & aortic aneurysm information support group

Aortic dissection, aortic aneurysm - The aorta - Life after an aortic dissection

Hello everyone,

I am posting this for a very close friend. He just turned 49 years old, was going to be married in Dec of this year and moved back to Brazil for a new life as he was living between USA and Brazil. This was his special moment to re-invent himself and finally get married and looking forward for a bright future to restart a new family with kids.

On May 23rd, a Saturday, he was alone and felt terrible chest pain, back pain, breathless and cold sweat. He called for his fiance, Carla, to help him. She arrived immediately afterwards and took him to one of Sao Paulo's best hospital called Albert Einstein. He was immediately diagnosed with aorta dissection as a result of exams. Went to surgery, which took more than 8 hours.

Apparently, he had a ascending aorta dissection acute type A. His entire aorta was dissected and had to implant a new synthetic one with metal valves. His right subclava had some malfunction or was deformed and they could not find the connection to his aorta. Apparently, his heart was shut off for 180 minutes in order to reconstruct the aorta and all the arteries. They could not fix or find the right subclava artery. I am not exactly sure if this was the case but I'm gathering bits and pieces and putting together like jigsaw puzzle. Apologies for any technical mistakes or lack of more clear info...

It took him 3 days to wake up but still in a very fragile situation. It seems he will have permanent consequence to his legs and eye sight. He cannot feel his legs and apparently only the peripheral smaller arteries are circulating in his legs as a result of the spinal damage during surgery. The problems with his eye sight is also due to the problem with right subclava artery that did not circulate to brain and has left damages.

Two days ago (or 10 days after first surgery), they made a 2nd surgery to make a bypass for his right subclava artery in order to try to reestablish circulation to his brain in order to recuperate his eye sight and improve circulation.

He is still in the ICU unit with oxygen mask. His condition is stable but very fragile. All his friends here in Brazil are very concerned due to his current stage and, worst, is what is the future for this dear friend that could be potentially paraplegic and blind. Many questions come to our mind. His father and mother live in the USA but are weak financially and physically.

There are many issues such as, where will he do rehab ? Seems better and financially better for him in the USA.

Is this something common to have such severe consequences ?

Any light from someone ?

Thank-you,

Jose Kfuri

Sao Paulo, Brazil

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Comment by Richard Deal on June 24, 2010 at 10:19
good to hear that Tom is slowly getting better... Best wishes for him for the coming phase of convalescence and rehabilitation.
I am not sure about rehab options for you, maybe someone else has some input here? I guess this would be somewhat complicated by the fact that he will need not only cardiological rehab, but also neurological and motor.
take care,
r
Comment by Jose Kfuri on June 21, 2010 at 14:23
Hello Richard and dear friends !

Thank-you for your thoughtfulness.

He has left the ICU unit late last week (short of 3 days before completing a month) and is now in a normal room still in the hospital. He has a caretaker to be with him 24/7. Some of our exceptional friends have helped him by finding rehab options, both in Brazil and USA (he is an american citizen) to be evaluated in the coming days and weeks. This decision will also need to evaluated, not only based on clinical needs but, less fortunately also on the financial capacity of paying for his rehab. This trauma ocurred during a short window time frame when he was transferring from USA to Brazil and did not have his health insurance in place in Brazil. Fortunately, one of his friends in the USA (who has his Power of Attorney) was able to reinstate his US health plan as a result of a lasting period once health insurance plans are terminated. Thank God !!!

Today, friends and family are considering 2 options for his rehab. One in Sao Paulo, Brazil and the other rehab in Boston (Spaulding ?). This will be for both his eyesight and paralysis of both legs. As his recuperation is improving and he is becoming more conscious, hopefully, this decision will also be done by himself. This is important as he will become more conscious of his state and the need to improve. I have not seen him for a week now but we have friends visiting him every day to cheer him up and give him a lot of TLC. It is difficult as many of us have personal obligations that also need to be attended.

If anyone recomends any rehab for legs and eyesight, it would be very appreciated by all of us in Brazil.

All the best to everyone !!!
Comment by Richard Deal on June 19, 2010 at 19:02
is there an update here, jose?
still keeping fingers crossed for you!
r
Comment by Richard Deal on June 4, 2010 at 23:16
hey jose,
this must have been a shock for you all over there, but, like Marion has said, our bodies are amazing things and they are perfectly capable of recovering from such deep shock. i had a similar thing to your friend in that there were complications with my surgery and recovery and i was kept in an artificial coma for a week before they brought me back round. when i was first out of surgery i had no pupil response and the day after i had a 'massive' stroke and when i awoke from the coma i was paralysed down my left side. 15% of my heart muscle died due to a RIVA blockage during the dissection.
needless to say, i have pupil response now... and apart from the odd trip-up on the qwerty side of the keyboard (which i had before!) i do not have any lasting consequences from the stroke. the heart itself is one of the only organs (i think the only other one is the liver) that can self repair provided you exercise it regularly.
obviously it is very early days for your friend, but you will have already begun to notice improvements - a week after the surgery his kidneys would have started back up again and he will have been removed from "permanent" dialysis (i think normally two neck tubes). it helped my dad to count the amount of machines i was on each day to get a sort of status - maybe this would work for you too?
next you should see a vast improvement in him 3 weeks after surgery (when i imagine they will have him up and about in a not so critical care ward) and then the big one is when his body has finally got rid of the anaesthetic and the various other things they pump you full of during the life saving operation at around 5 or 6 weeks post-operation. the last bit was where i really started to improve.
this is not the descent into dante's inferno so do not abandon all faith all those who hope here - your friend has been to the depths of hell and he is crawling out of the other side. be there for him when he needs you, try not to make him laugh in the first month or so and if he has been on a ventilator (which i imagine he has) make sure he keeps a rolled up towel (or i think graeme had a pillow) close at hand to compress to his chest if he feels the need to cough - it is definitely less painful!
keep us posted as to your friends progress. i, for one, am rooting for him!
take care,
r
Comment by Marion Millington on June 4, 2010 at 20:20
Hi Jose,

What a terrible shock this must have been to everyone, I'm so sorry that he and all his friends and family have had to go through this.

Like Graeme I have never come across this mixture of surgial effects, but I can say from experience that I had by pass surgery last year, right carotid to the left caroited and left caroited to left subclavian, and yes my eye sight was affected for several days, I lost sight completley for short periods of time but it always came back, and now seems to have stabilised.

I also have lost strength and function in both my left arm and left leg but time has been a great healer. I can actualy see new veins appearing in my arm and I can now lift weight.

Please don't give up hope it is still very early days and our bodies are amazing, we have great capasity to overcome many hardships

Keep in touch - My ythoughts are with you

Kindest regards,

Marion
Comment by Jose Kfuri on June 4, 2010 at 11:48
Graeme,

I appreciate your feedback and thoughtfulness. We have built a positive chain across the world with all his friends and family to pray for a full recovery. I will keep you posted. Today, I will visit him in the ICU.

Regads,
Jose
Comment by Graeme on June 4, 2010 at 7:35
Hi Jose

Firstly all of us wish your friend a speedy recovery and all of our best wishes. His case - even by the diabolical complications that Aortic Dissection throws up is/was not common. Aortic Dissection is often called the 'great pretender' - and is VERY hard to diagnose especially within the frantic pace of an ER. As with a lot of us - LUCK plays a large part in our survival and our recovery..I can only say that if this holds true then he is going to get better as his luck WILL change.. In closing I dont think I have heard of another case like this - it is very unusual particularly the eyesight part..I still however get partial double vision 7 years later so Aortic Dissection does affect the sight but hopefully your friends eyesight WILL improve! Please keep us posted on his progress and recovery..

With all best wishes

Graeme Archer

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