Name: Helen Rubin
Age at time of Dissection: 56
Type of Dissection: Descending
Date of Aortic Dissection: 6 June 1999
Tell Us Your Story: This is my husband’s story. Please let me know if 9 pages is too long – his hospital time + rehab was prolonged and complicated – 70+ days in the hospital alone.
Martin Rubin Dissection and Replacement Aortic Valve 6/6/1999
With the approaching 13th anniversary of my husband’s collapse at home and emergency 7-hour surgery in 1999 for an aortic dissection and valve replacement, and his amazing survival, I am sharing our experience. Thank you to everyone who posted their family member’s story here – you make a difference to us all!
Around 11 a.m. on Sunday the 6th June 1999 Martin was in the bathroom shaving when there was a tremendous crash. I ran to the bathroom door and got no response, and then ran to call my oldest son, Daniel. We couldn’t open the bathroom door and there was still no sound from inside. Daniel rammed the door with his body, he could take only two steps in the short hallway – it turned out later that he had pushed the door frame out of the wall; and then a voice from inside said “I’m OK”.
We both knew something was terribly wrong. My mind was racing, was this a heart attack? I knew if I called an ambulance I would further stress Martin (you have to know him to understand what I was thinking!) meanwhile Daniel was very calmly telling his father they were going to the hospital. Martin removed his watch and wedding ring and went to the car with Daniel. I tell everyone that Daniel, at 21, rose to the height of his abilities in those few minutes. I still don’t know why I drove behind them in my car – did I need that extra two minutes to lock up the house? I guess so. I tend to go extremely calm at times of duress; I do not panic easily!
Mercifully our county hospital is within 5 minutes of our house and as soon as Daniel pulled in by the ER door he told the staff “I think my father’s had a heart attack”. Being a Chest Pain Center they were ready to get him a wheelchair and tend to him very promptly. Martin hates the fact that his chart described him as ‘56 year old obese male’. He was well overweight at the time the dissection happened and under extreme stress.
I don’t remember too much of the pre-op hours except for filling in forms, answering questions and waiting. Martin had never been sick before, his primary care doctor’s practice was 30 miles away. He had been an avid weekend cyclist and had also carried our sons as babies and toddlers in a backpack when we went hiking each Saturday morning – he was a very strong man. A cardiologist told us that he thought Martin might have one of three conditions – I now realize one was ‘aortic dissection’ but I don’t recall the others. He then got on the phone to find a cardiovascular surgeon. He later said to me “Try to find a cardiovascular surgeon on a Sunday afternoon”! Martin was sent to the cardiac cath lab for further testing and by then it was determined that there was no more time for tests. Emergency surgery was the only choice.
I told Daniel to track down his younger brother Alexander – this is all before we all had cell phones. – Alexander at 18 only had a beeper and was 20 miles away; I didn’t want him to drive like a mad man. Daniel apparently didn’t quite express the severity of his Dad’s situation because Alexander made a stop to check in at our Boy Scout hut just before he came to the hospital! But fortunately Alexander arrived just before his father went into surgery and was able to see him, although Martin didn’t recognize any of us at that point. We really didn’t expect him to survive and we now know that the survival rate for a dissection, even with prompt emergency surgery, is slim – as with John Ritter and Lucille Ball.
So we sat together in a cold waiting room for the next 7 hours. Daniel’s girlfriend came and brought a blanket and some playing cards and a friend came to see us. I’d simply called to wish her daughter a happy birthday and say that I wouldn’t be over to see her because we were in the hospital with Martin. But she tracked us down in the hospital telling her husband “I must find Helen”.
Around 10 p.m. that Sunday evening Dr. S., the cardiologist, who had watched the surgery, came to see us in scrubs and told us to go up to the CVICU floor waiting room (CVICU became for us the affectionate name for the Cardio Vascular Intensive Care Unit and all its staff – a true team in the best sense of the word). Shortly after we arrived the surgeon, Dr. R., came to speak to us saying, I suppose, that the surgery had gone OK, we could go and see Martin and that a nurse would be at his bedside for the next 24 hours, and then said the words I most remember “I’m going to get horizontal in my office next door, but I will be on call”.
We visited Martin finding him prostrate in bed with tubes everywhere, machines attached, but of course could do nothing. The nurse reassured us that he would be with Martin all night so there was nothing to do but go home and come back in the morning.
The next day Alexander came with me in the morning and Daniel stayed at home. A few days later Daniel announced that he thought he was going to have a nervous breakdown at which point I had to choose, him or his father. I put his girlfriend in charge of him and called two old friends who I knew would help and support him if he needed more. They came the next day to the waiting room. I am forever grateful to them and Daniel’s now ex-girlfriend, they are all good family friends.
The next 50 days were exceedingly complex to say the least. After two weeks we received a hospital bill for $1.3 million! At which point Alexander said “I guess we can’t worry about money, so we’ll just worry about Dad” – a very wise 18 year old, he hasn’t changed.
Martin was shortly put in an induced coma to keep his body calm and allow him to heal – he had come out of the initial anesthetic and burst open the staples of his chest incision! As I said, he was strong and I’m sure then very alone, scared and disoriented, never having been in hospital. Alexander and I stayed at Martin’s bedside from 9 a.m. to 9 p.m. every day except when another patient was ‘coding’ when we promptly left to let all staff do their best, when a new patient came up from surgery, for lunch in the hospital cafeteria (we were there for so long I asked for the employee discount!), or at evening shift changes when we went to get supper.
After a while we were allowed to remain in Martin’s room even when there was another crisis, the staff just pulled the curtains and we sat quietly with a book or journal.
There followed multiple relatively minor surgeries although I’m sure in his case they were quite serious, including a cardiac tamponade plus what seemed like constant changing of central lines (I now know they are a major source of infection if not changed frequently). They even used the paddles on him at one point. And eventually performed a tracheostomy to allow him to start breathing by himself. Through all this we never allowed staff to shave off his handlebar moustache and even put a sign above his bed!
Martin was on kidney dialysis for many of those days. The rest of the aspects of what happened are in my journal. He did suffer at least two medical errors by nurses. The most debilitating mistake was with Lovenox, a drug used to keep his blood thin. It is a drug which must only be injected into the stomach – a young nurse (just back from maternity leave) took pity on his black and blue stomach and put an injection of Lovenox into his upper arm. That shot caused a hematoma (a large swollen ‘bruise’) that had to be lanced, but not before he had permanent damage to the nerves in his right arm and lost the use of his right hand.
When medications were reduced to let him come out of his coma he was very confused he even spoke in Spanish to one of the nurses, who responded in kind. (Martin just has the basics of Spanish, he is by no means fluent so that was a strange response from him). Later he yelled at Alexander saying “I’m a 65 year old man why don’t you go back to New York”. This from a 56 year old to the 18 year old son who had been by his side for 49 of the 50 days he was in the coma! Alexander firmly said “If you continue to talk to me that way I won’t visit you again”. And then little by little we discussed ordinary and sensible subjects. We had to ‘force’ Daniel to visit his father before and after he came out of the coma. On occasion when I look in my journal from that time and find the one photo we took of Martin once he was awake it is very scary to see, so I truly understood Daniel’s reluctance to visit. But since that time Daniel and Martin have shared many great moments together; they are as close as ever.
One male nurse was from New York where Martin had lived until he was 18, they talked about the music from their youth – Martin suddenly remembered where his high school year book was and his old 45 records! They were just where he said they were and Alexander put the records on tape and we played them in his CVICU room and looked through the year book. Good memories coming back. He also remembered where his Army discharge papers were which I’d needed for applying for SS disability – all I could say to the social security official was “He saves everything, I know his papers are in a safe place”. The more ‘normal’ he became the more we could find things to jog his memory: a favorite comedy on TV then the Tour de France – each gave us topics of conversation. “Do you remember…?” and the ability to check his memory. Many weeks before I had plainly asked Dr. S. “What are we going to get out of all this?” He knew what I meant but as ever he found the 1% of hope to give us and that’s how he responded once again. We’ve never lost hope with Dr. S. around us.
Once Martin was off dialysis, out of the coma and breathing without a machine he went to a step down unit but he was still unaware of how bedbound he was and what he had been through. His left leg had also atrophied as a result of the complexity of his case. How were we supposed to explain it all to him?
Approaching the 65-day mark in the hospital the insurance comapny representative was very anxious to get Martin out and into a rehab center. She was the most awful person we had contact with during this whole experience. Martin’s secondary surgeon, Dr. H., asked him how much longer he wanted to stay in hospital and I’m sure he put his career on the line by ensuring that Martin could stay for another week – we were so grateful.
Martin was sent to a nursing/rehab home which was awful – we had the choice of two on our insurance, neither of which was as close to our home as the hospital. The only saving grace was that Dr. H’s physician’s assistant, Ed, who was a contemporary of Martin’s gave him his card and told him to call any time he needed to talk – Ed was special. The second day in the nursing home we discovered that two rehab therapists didn’t know how to lift a 200 lb bedbound man! Plus he still had the stub of the tracheostomy – who would keep that clean? Would he even get his meds on time? And what would that atmosphere do to his mental state? What about his bedsores, getting a bedpan? The list of questions was endless.
After driving home sobbing two August evenings in a row we determined that we would take Martin ‘home to die’. We begged the nursing home staff physician to give his permission and by the time we got Martin home in an ambulance our sons had cleared our living room of furniture and a hospital bed was in place.
While Martin was in the step down unit I was thinking about the logistics of getting Martin home (not thinking of him being in a rehab facility)) so our youngest son and a good friend knocked a hole through the wall of our front porch, installed a door and laid a front patio for what I anticipated would be just wheelchair access. It was certainly what we needed to get a gurney to the front door and inside the house!
I have never been sure how all the services were provided to us at home. I just assumed the administrator of the nursing home made sure we had everything we needed. Gratitude again.
Now what? I knew nothing of Martin’s meds. I called the cardiologist to tell him what we’d done and Dr. S. got me started. Blood tests for Coumadin every day to check his INR. How was I to do that when Martin was bedbound? As ever another wonderful person came to our aid. Our neighbor is a critical care nurse in a neighboring hospital and she came every morning before her own shift to take Martin’s blood. I ran the blood to our primary care physician’s office nearby and they did the blood work. With results in hand I could call Dr. S., get instructions and administer the right amount of Coumadin each day.
I became Martin’s ‘nurse’. 21 years of home educating our sons gave me the ability to quickly learn new skills, plus having cared for babies but especially an elderly friend in a nursing home during that time I already knew how to clear up Martin’s residual bedsores. I made sure he had three nourishing meals a day plus two fresh fruit and yogurt shakes as snacks. Then therapists came to visit – a hand therapist and a physical therapist. Martin well remembers the exhaustion he felt taking his first 10 steps from the bed to the door – he slept the rest of the day.
The therapists were both brilliant and so understanding of the chaos of our house. They each came three times a week and taught us what we could do in the days in between. So in effect Martin had therapy 7 days a week – sometimes twice a day when our sons made him do his hand therapy again! Both therapists had so much wisdom and good humor. We are still in touch with Martin’s first hand therapist.
Friends phoned, visited with treats to eat and sent cards and interesting bits and pieces through the mail. They really made a difference. A young 20-something friend, David, was blinded in a family shooting accident in which his father died just a few months before Martin went in the hospital, called regularly to offer Martin the same support Martin had given him at his time of need. They each provided the other with support, understanding and laughter!
We started having outings with Martin in the wheelchair. He remembers so clearly the first time we all went out for breakfast, he has often said “The sky was so blue”. He hated being in a wheelchair and the walker which followed – both spurs to keep up the therapies! On one of those outings to my horticulture club a friend of mine kindly ‘covered’ the nature of Martin’s incapacity by announcing “We are so happy to see Martin back after his accident in the Iditarod Race”. That joke has long lingered and provided much laughter as the story just got amplified over time. How do you explain an aortic dissection anyway? After four months of therapy at home Martin had an amazing custom leg brace made and because he was ambulatory he was admitted to the cardiac rehab center at the hospital. He could now also have out-patient therapy for his hand.
His physical abilities improved gradually. When a therapist asked “What do you want to be able to do?” Martin would always answer “I want to be normal again”. He refused to have velcro shoes, learning to tie his shoelaces again despite that awkward right hand; even learning to sign his name again the same way – he refused to use his left hand! That fine leg brace enabled him to start walking – we even found a lovely cane for a bit of extra stability. We were able to explore and get out in the fresh air together. We found plenty of free things to do together – a bit like forced retirement but now we know better how to get along together and what we both enjoy. Martin could even get in and out of the shower using a shower bench – no more bed baths from me!
I should add that all the professional services were provided as part of his medical insurance. We were so lucky.
You have to know that Martin had quite reluctantly signed up for medical coverage for our whole family just three days before he went in the hospital, fully intending to leave himself off the coverage due to the monthly cost. But the office secretary convinced him of the importance of putting all four of us on the policy – how right she was! We had yet to pay a cent! His company continued to pay the monthly fee for coverage for six months for us all, and a further six months just for Martin. We are so grateful. By then Martin was legally disabled including chronic renal failure and went on Medicare disability. He only has one functioning kidney but we are thankful that it is functioning ‘as well as can be expected for a ‘healthy’ almost-70 year old’ – another miracle.
He does not need dialysis and only sees his kidney doctor once a year but does a blood test for him twice a year. Martin sees his cardiologist every 6 months – a visit we both look forward to. Dr. S. has always been at the end of his cell phone for us – what doctor gives you his cell phone number? Gratitude just isn’t enough for him – he’s the best.
Forward to late December 2001 and Martin is hospitalized suddenly after being at the gym – he is diagnosed with MRSA! We were all very distressed. Dr. S. asked “How could this have happened? I hope MRSA isn’t on his prosthetic valve, we will be in real trouble.” We waited together outside the echo lab waiting for Martin and Dr. S. to come out with the results. Daniel couldn’t bear to stay he was so distressed, so he left. Alexander sat with me and when Dr. S. came out of the room he said “MRSA isn’t on the valve” so we were OK – we had a group hug and all shed a few tears with great relief.
Martin was then in hospital for several weeks in isolation. Finally an IV port was put in his arm and he was sent home to self-administer multiple antibiotics for a further two weeks. It was a very stressful time! Dr. S. said he’d never prescribed such large quantities of Coumadin as he did then. Specific and powerful antibiotics are needed to combat MRSA but they affect Coumadin while at the same time Coumadin has to be kept in balance.
In the fall of 2007 Martin wanted to find work again, particularly to provide me with medical insurance. I was anxious about where he would work and worried about something happening to him. However, he got a job with Starbucks (one of the few companies providing medical insurance for part-time workers) working in the store in the lobby of the hospital that saved his life!
I was happy because I knew there were many people who would take good care of him if the worst happened. He still works there for Starbucks, he has even become a Coffeemaster and has enjoyed meeting many of the nurses and doctors who took care of him in 1999. Remember, since he was in a coma he didn’t know most of the nurses! However, he is pleased to get to know them and over time has built a history of what at least his body went through – and something of what we all endured! Hospital staff have already started coming into Starbucks to remind him “It’s nearly 13 years”. What memories they have. They know the miracle they contributed to. Martin’s words of support to family members currently in the CVICU waiting room have already made a difference.
Our ancient and beloved Volvo station wagon was instrumental in getting Martin about with the wheelchair and eventually back to driving, but only after we’d put him through a 2 hour professional advanced driving check to ensure his reactions were good enough. I don’t think I could have allowed him to drive in any other car, it was safe plus it was an automatic. It had been our workhorse through our scouting years and had 300,000 miles on the odometer. Then one eventful night it was sitting parked outside our house and a cab driver totaled it! Martin had to then accustom himself to driving my old stick shift VW bug – quite a challenge with that weakened left leg for the clutch even though he knew how to drive a stick shift. That’s our only car now although on occasion we borrow Daniel’s when he’s off traveling, or rent a car to go further afield for a weekend. Martin’s still a pretty good driver although we are constantly on the alert for his reaction times and decisions when on the road – he loves the freedom of driving!
So we are approaching ‘lucky 13’! Our lives are full. In 2008 I finally found much needed work caring for babies, working in a daycare for the first time (after our family, caring for babies is my other passion). During these past 4 years I’ve also been doing respite care for my aging mother twice a year – juggling my patients and caregiving at each end of life.
In February of this year I finally found the daycare stress (not the babies!) too much for me (Martin and our sons had apparently seen me on track to emergency surgery! They were all very happy and relieved to learn of my resignation). I am now working to recover from the stress and find out what else to do with my life. Perhaps I’ll write, but perhaps I should go back to focusing again on Martin, enjoying family life and catching up with jobs in the house and garden. Life is too short to go through any more stress!
As I write Martin is attending a Boy Scout weekend, although since it’s close to home he’s not camping out. He has retained his interest in scouting and enjoys driving around the state to gatherings several times a year. We both also love going to concerts where our sons, in their quartet and chorus, sing barbershop harmony. Seeing and hearing them sing together is one of our greatest pleasures in life.
Both our sons are amazing people and lead full lives, are independent, dynamic at work and play, and are both in stable relationships. Alexander got married last year. We all enjoyed a simple yet very happy and carefree day. Both sons have continued to help us in every possible way through this very challenging time in our lives. We have yet to recover from the trauma or the serious financial challenges we’ve all experienced over the past 13 years. I attribute our sons’ strength to forming close family bonds through our home education years. Perhaps no one actually recovers? You just have to move on one day at a time.
Alexander and I freely discuss everything that happened during those eventful months Martin was in the hospital whenever we feel the need – that seems to be our mutual therapy. Daniel I know still finds it a challenge to talk about his experience but despite that remains close to us all and overall seems quite resilient. Neither of our sons has ever used our family trauma as an excuse for not doing their best at everything they tackle, they never complain. Most people do not know the magnitude of what we’ve all been through – except perhaps those of you reading this! Our boys lost all the underpinnings for their future that eventful day in 1999.
Our families and friends have stood by us this whole time. One friend said “I didn’t pray every day, I prayed every minute of every day”. The front desk at the hospital said that one young man came every day to ask if he could visit Martin – we’d said ‘No visitors’. All we know is that he was a Boy Scout – we never did get his name. Everyone respected our desire to cope by ourselves. I had one loyal friend to whom I could say anything that was on my mind. She usually kindly said “You have to put such thoughts aside and just keep going”. We have so much to be grateful for.
Our lessons: Always stay with your patient. Therapy 7 days a week is better than therapy 3 days a week, let your therapist teach you. Family is more important than money. You can always bring your family member home (for a patient’s psychological well being home always trumps nursing/rehab homes). Always be civil. Know the names of staff members and physicians. Feel free to always politely ask questions. Be appreciative of the hard work of everyone who helps you or your patient – write your thank you letters. Take a chance and ask physicians’ office managers if they will accept just what the insurance pays. Keep a journal with you even if all you write about is your own emotions – staff will think you are documenting the case (we never intended to sue and we didn’t). Just choosing a new journal is a very therapeutic. True friends show their colors and are worth their weight in gold. Family support is unending.
Things we’ve learned:
1. A nurse who returns from maternity leave is pulled in two directions emotionally and isn’t capable of making the best decisions on the job, especially if she’s a critical care nurse! (At least two young nurses returning from maternity leave made mistakes in Martin’s case)
2. When you can’t balance the INR of a patient on Coumadin it is because of a discrepancy between diet and exercise. When diet and exercise become stable, INR and thus Coumadin intake becomes stable. No physician has confirmed this, but most know when I’m not preparing our meals Martin’s INR is off!
3. We’ve just discovered that here in Florida medical records are only kept for 7 years. Make sure you have CD’s of every scan and MRI (particularly the one’s closest to your surgery) and all the radiologists’ written reports. Last week we needed a CD of one of Martin’s early scans but they have all been destroyed. We have copies of all the radiology reports but we needed the CD for true comparison with a current CT scan.
4. Keep an updated report of any additional conditions your patient develops plus current meds.
5. Your pharmacist can be a great asset. Ours has been wonderful.
I have just read three books by Atal Gawande MD a general surgeon from Boston. They were a struggle to read because of the details of various surgeries, explaining a lot about what happens in the OR and how physicians learn. Each book made perfect sense to me and reminded me of how much of a miracle Martin’s survival is. I highly recommend Dr. Gawande’s books.
Sunday mornings are very important to us both. We wake up by 9 a.m. and watch CBS Sunday Morning as we did on 6th June 1999 and I say “Thank you Charlie” at the close of the show.
Thank you all for listening. Never give up!
Helen Rubin (Martin’s wife)