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My name is Carol and I am writing about my husband Frank. Frank and I have been married for 28 years and have three wonderful children, ages 26, 25, and 16. (Our eldest, a daughter was married on February 29, 2004 and moved to Florida just before Frank's turn of events began.) Frank was employed full time by the Mass. Turnpike prior to his illness. He was in fairly good health (apart from being overweight), and enjoyed going to the gym three times a week, working overtime, yard work, and cooking. Although he complained about our daughter getting married in February (a cold and snowy month in Massachuset ts), in retrospect we are thankful she did. The day was beautiful and the weather perfect. That was the last enjoyable time Frank spent with his family until recently when he returned home after almost four months in the hospital. He unfortunately missed his nephew's wedding, Easter, Passover, his wife's birthday, his birthday, Mother's Day, Father's Day, and more. He thankfully is here today with anticipation of enjoying the missed holidays of 2004 in 2005. He owes his thanks to all who prayed for him, his family and friends, and the wonderful doctors and nurses at the Massachusetts General Hospital. We can only hope that the prayers and phenominal care will now carry him through his recovery process and into the years ahead. As I his wife, watch his "rebirth so to speak" I can only marvel at what the human body can go through and come back from. It was a long, hard four months, and we are cautiously optomistic for the future yet amazed how far Frank has come after witnessing first hand his fevers, his coma, his inability to walk, talk, and think clearly, etc. It is with hope and good wishes I share his story with you.
22 August 2004
My husband experienced a DeBakey type II dissection and abdominal aortic aneurysm rupture on June 2, 2004. I vowed once we got our feet on the ground I would help others going through this. I intended to "park" myself at Massachusettes General Hospital and pass out tissues to all the people on cell phones and crying on the side of the road just to help them feel better as I knew just how they felt having sat there hours on end myself from April 10, 2004 until August 6, 2004. I have not been able to do that as of yet,and have decided tonight to share our story to help anyone who may need our encouragement.
During the first week of March, 2004 my husband began exhibiting symptoms of the flu. He had a fever, diarreah, stomach cramps, and total body malaise. We went to the Mass. General Hospital (MGH) and to make a long story short found out he had food poisoning and it had gone into his blood, affecting his major organs, arteries, and joints. While an MRI to view his collar bone (which had become swollen due to the infection) a 5cm. aneurysm was noticed. The plan was to correct the infection in his blood stream, build him back up, and months or even years down the road to correct the aneurysm. Shortly after that decision was made, he went home on IV antibiotics.
About two weeks into the antibiotic regime my husband experienced severe back and heart pain. I drove him back to the hospital to find out his aneurysm had grown to 9cm. in two short weeks and had burst into his left pleural cavity. Affected was his entire aorta with dissections between 8 and 10 cm. from the top of his chest down into his abdominal cavity. Emergency surgery was performed, lasting 10 plus hours and requiring my husband to have 10 plus blood transfusions. He required 225 stitches on the inside and 300 staples on the outside. His incision was/is 5.5 feet long!
From surgery he was placed in the CCU of MGH. He remained there for a number of weeks due to the fact that he had trouble breathing on his own, his blood pressure kept falling to dangerously low levels, and more. He was kept in a hospital induced coma for 3 weeks. During that time there was fear of permanent paralysis, dialysis, mental disabilities, and more.
Thankfully and coincidentally on his 52nd birthday, June 14, 2004 he was able to be reborn, woken up for a short period of time. He woke up with all his facilties intact and smiling! He even ate birthday cake! A few days later he went to a step down floor where again recovery was slow. He was transfered to a rehab. hospital in June to begin to learn how to walk, feed himself, project his voice, etc. again. Unfortunately 6 days later he developed breathing trouble and a fever. He was sent via ambulance back to MGH w! here they discovered he had a staff infection which had attached itself to his new man made aorta. Sigh...again fevers, set backs, instability, and tears.
Recovery began, yet slowly. Next set back, his left lung filled with fluid and needed to be drained. He developed atrial fibrillation, an irregular heartbeat, which required paddling to shock his heart back into a good rhythm. This corrected the next set back came into being, a urinary tract infection as a result of the catheter he must wear due to the fact that he experienced nerve damage during surgery and can not void on his own. This required yet another IV antibiotic. Next setback, a bleeding ulcer causing his red blood cells to fall to anemic levels. The list of trials is endless yet he began to turn the corner and on August 6th came home with IV antibiotics, 24 plus medicines to take, weak, and only able to walk 2 to 4 steps with a walker, and 60 lbs. lighter than he was in March. But, he was home and glad to sit on his couch, sleep in his bed, pat his dog, see his children, talk on the phone, and eat homemade food.
The first 2 weeks home, I felt as if I had a new baby. He slept 20 hours a day waking up only to eat, very little, empty his catheter,receive his medicines and a shot in his stomach to help with his anemia, and smile at the people in our house. The third week has found him a little stronger. He now can walk some in the house,somewhat enjoys eating again, and is able to tolerate being up 4 hours at a time. Until perhaps yesterday, I still cried daily thinking his recovery is so slow maybe something is still wrong. He is however making progress in baby steps. It is so hard to watch and at times I feel helpless. One night the pain was so bad I did not know how to help him so I tried hypnotizing him. I felt desperate. At any rate, I do believe he is improving and I am so thankful. Cautiously optimistic, but thankful.
I am here to share anything I can with anyone who needs. If I can lessen the saddness or fear even if only for a second, I would feel blessed to do so. If anyone remembers going through this horrible ordeal and can give me any insight into the recovery process I would readily accept the good and bad of that path. Life hands us many hard "chapters" but if we experience these chapters with the support of others it helps to cope a lot easier. So....I am here to listen, help, share, etc.
Peace and God Bless.
Update: 8 October 2004
It has been four months to the day since Frank's surgery. I am pleased to tell you he is improving, slowly, but improving. His red blood cell count has gone up from 30 to 35 (at last check, hopefully it is still up) and we have been able to decrease his aranasp shots a bit, his creatinine level (kidney function) has stabalized at 1.4, no longer in the 1.7 -1.9 range, and the numbness in his legs, thighs, and buttocks is lessening somewhat. He still needs to self-catheterize himself but that too may improve in the next year or so. He hopes to possibly return to work by January, 2005.
I continue to be cautiously optimistic, however the cautiously is diminishing somewhat. His next check up is on the 21st of this month. I nervously await the results.
Now, for the most shocking news. As I type this, his brother (Dr.Salvatore Vinci, who is 18 months older than Frank, and has been in excellent health all his life) is being med-flighted from a neighborhood hospital to Mass. General Hospital with an aneurysm! It is 5 centimeters in size and is leaking.
He actually was on the phone with one of Frank's doctors, thanking him for all he has done for Frank, when he experienced a sharp pain in his chest. The doctor told him to go right away to the ER at his neighborhood hospital. He did, thinking he was having a heart attack. They immediately checked him for an aneurysm, due to his brother's evil turn of events and apparently found nothing. They kept him overnight to watch him.
Today (October 7), his pain lessened, however he began running a fever. They thought perhaps he had a lung infection. They were just about to send him home when they decided to check one more time for an aneurysm, and they found one. In the exact same spot that Frank's began. They then called the helicopter and he is on his way to MGH! I truly believe if Frank had not been recently sick, they would have sent Sal home and would not have noticed the aneurysm. In some off handed way, Frank probably saved Sal's life!
At any rate I do not know what they will do next. My guess would be to operate on Sal, rather than have him wait, perhaps using a stent (I think that is what it is called) procedure. I will let you know. I am just in such shock over the coincidence of this whole thing. (Could it be hereditary for these two brothers, I think so). My husband is very upset at the moment, however I truly believe this whole thing was a blessing in disguise for his brother.
Life never ceases to amaze me. Thank you for listening/reading and for the support of this site.
Update: 15 January 2005
My husband just returned from a check up with the heart doctor. The doctor said everything looked good, blood pressure 106/60, weight going down slowly, heart sounded good, etc. My husband then commented on how tired he always is and apparently (I did not go with him) the doctor said it was due to all the medication he was on. He then said in July they will look at reducing some of his medications (amirodorone sp?).
He went on to say that Frank would be on the numerous antibiotics for life due to the fact that when his aorta burst he still had the food poisoning infection in his body and apparently on his aorta as the tests of the removed aorta tested positive for the infection. My husband interpreted this discussion as a red flag type of talk.
Do you know anyone who has been on life long antibiotics and lived a relatively normal life? Can people be on antibiotics for a long time? My husband is still in tremendous pain and continues to take oxycotin, and oxycodone. That worries me however the doctors feel that he should take them rather than live a life in pain. His neropathy has not improved either, and he still is on a catheter. Hmmmm this is probably a silly question but can he live another 5 - 10 years like this.
We realize Frank has been given the gift of time to return home alive to fix any life long relationships that need rebuilding however unfortunately we both sit here waiting for something to go wrong. Do you or anyone know of people who have survived a AAA rupture yet continued to live a relatively comfortable life for a number of years later? I feel embarrassed to ask Frank's doctors as I know I should be thankful he has come as far as he has but still I worry.
On a lighter note, I have shared Frank's story with others as I teach school and see many people. One day a mother came into my classroom crying. She told me that she had retold my story to her husband and her husband said, "Gee, maybe we should have our children checked as my mother died from a burst aortic aneurysm at the age of 40." Off they went with their three children to Children's Hospital and believe it or not their 13 year old daughter has an aorta which is 100% and is being watched carefully. So we also realize Frank's episode has saved both his brother's life and now this little girl's life, and that in itself is an ultimate blessing. So we do realize so much good came from this and we are thankful, just worried too.
Well, thanks for listening, reading, etc. Peace.
Update: 18 April 2005
It is almost a year since Frank's AAA and I felt the need to fill you in. Mainly because when Frank first became sick, I frantically read every story and prayed with all my heart and soul that he would recover. Each time I read something to the effect that it has been a few years since my surgery and I am doing better. I returned to the hospital for another minor surgery.... I would cringe inside hoping Frank would not return to the hospital. Well, he has and we have made it through and for the first time in a year, I see that he is improving, and once again (although on a better level) I am cautiously optimistic.
Let's see, Frank continued to improve through the winter. He however was still extremely tired, unsteady on his feet, and just never looked right. Then in March, he went back to work for 3 hours on a Sunday. Well, while he was at work, I came down with what I thought was a cold. How ironic for the first time in almost a year, Frank left the house and I felt too sick to enjoy it. The very next day I went to the doctors and found out I had viral pneumonia.
Sadly enough within three days, Frank too had pneumonia. However, within 48 hours, he not only had pneumonia but he swelled up everywhere, going into congestive heart failure. He went back into the hospital for 2 weeks. While in the hospital, his primary care physician asked me if he had been taking his antibiotics. I then realized he had been taking two of them, however had not had the third one (doxycycline) since December. Sigh....back on the IV antibiotics, back with the infectious disease team, etc. To make a long story short, he did not display any signs of a new infection in his new aorta and everyone calmed down in week number two of his hospital stay.
After he lost the 26 pounds of fluid he had gained, he came home. He just went back to his heart doctor and his primary care physician. His primary care physician was still upset that he became so ill, even wanting him to stay a bit longer in the hospital, until his "numbers" from blood work, evened out. Thankfully on his second visit to him and with the visiting nurse's reports, he has calmed down. His heart doctor however thought Frank looked wonderful. He said to Frank, "Boy you had us scared this last time...we were not sure you were going home. But you look great and are a fighter, it is amazing!"
They think one of three things happened;
1. Frank was overmedicated this past year, and his heart rate and
pulse rate were too slow, causing his heart not to beat well enough
to get rid of the fluid that was accumulating from the pneumonia.
They cut back considerably on his heart medications!
2. He had a "bad batch" of water pills, they too cut back on
those!
3. Or, his body just acted adversely to the pneumonia.
Whatever the reason, Frank seems better than ever right now. He has
energy, has worked on the lawn for the first time in a year, and
even got a sunburn! His face had not seen the sun in a year! I hope
he stays this way.
The hospital stay I dreaded, when reading all your stories a year ago, seemed to have been a positive turning point. Oh, I just hope he stays on the upside of this whole thing. Frank is going to try and return to work part-time in May, over a year later! He also is going for a stress test at the end of the month to see if he can handle going to a heart rehab type of gym to build up his heart and his muscles. Oh I hope he can.
So, what all this long (and probably boring to you) story is trying to say is that if you feel you or someone you know is recuperating ever so slowly and just cannot believe it can ever get better, it can. With prayers and time things can heal. By the way, Frank's brother is doing extremely well, feeling better than ever! He is back at work, has traveled to Florida, and is planning his second son's wedding in June. He is living proof that if an aneurysm is noticed early enough and taken care of before it ruptures, the recovery time is shorter and easier. (Remember this too, if you are contemplating surgery!)
God Bless.
Update: 13 August 2005
Just to let you know, Frank has just closed a year since his rupture. He is doing fairly well. He is mobile, working, and glad to be alive. He still must self-catheterize himself and will for the rest of his life. He cannot go on a permanent catheter as he continues to carry an infection in his new aorta. He also now walks with a limp and tires easily. All considering we are proud of his recovery and thankful for each day God has given him!
Our daughter who lives in Florida is due to have our first grandson in January. With God's graces we hope to go visit her in December. My husband's doctors will assess him in December and let us know if he can fly. Please pray for him that he can meet his first grandson and that his grandson can meet him!
I have a question for you all. Did anyone hear that vortex carries cancerous materials? I believe I did, and I also believe that is what the new aorta is made of. Oh well, what will be will be, for today we are thankful and blessed. I continue to read this site daily and draw strength from everyone's entries.
Update: 4 February 2007
I must first say hello and want to say I am sorry for being so remiss in continuing on my husband's story. Things have been relatively stable, and I have been happily lazy. I do always comment on other's entries and feel fortunate to have met many wonderful people from this site. We are all so lucky for this site.
Now to my news. Frank has been doing well, back to work, here to meet his first grandchild, and here to spend time with his family and friends. As I type this however, he is in the hospital. Nothing serious, yet but I have a question and was wondering if anyone has heard of this "dilemma"?
Frank has been on numerous medicines since his aorta ruptured. One of them is called AMIODARONE. This medicine is used to help his heart beat, I believe. He was put on it due to the fact that during his surgery for his aorta, he developed an irregular heartbeat, I believe. Well, this medicine has caused his thyroid gland to become overactive (from what I can understand). He now needs to have his thyroid gland removed. However, the doctors at Mass. General (whom are the best, I must say!) feel they should not remove his thyroid gland until they get it more under control. (Well, they are hoping to get it more under control before surgery as again from what I understand removing a thyroid gland when it is hyperactive-Graves disease-is risky).
They have tried numerous medicines and none seem to work. There apparently is a medicine in China (only 5 lbs. of it left in the world) which is not FDA approved and is used to treat cats with hyperactive thyroids that they may perhaps try as a last resort, but not all of Frank's doctors are in accordance with this decision and so we are waiting. Personally I am glad, sounds risky to me.
Also sounding risky is the surgery on an unhealthy thyroid. What happens when surgery is performed to remove an overactive thyroid when it is still overactive? Have you heard of any medicine that works on thyroids other than steroids and methimazole? Have you ever heard of this cat medicine? (I am asking as I thought maybe someone else is on Amiodarone and has run into this dilemma. Thank you in advance for any feedback.
Discussion, comments, or questions: Carol Vinci
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