New Here - May I Join In?

[Shari]

My name is Shari and my husband recently had emergency heart surgery to repair a type A aortic dissection as well as receiving a new heart valve (St. Jude). This all came on quite suddenly and was quite a shock. He was travelling for business and became ill in his hotel room on the morning of May 22. He was rushed by ambulance to a local hospital in Rochester, NY, where he was diagnosed with a strep A infection. We live in NE Ohio. I received a phone call from the hospital saying that my husband was in critical condition and how soon could I get to NY. (!!!) We have two young children...it was a very surreal experience to say the least. I flew to Rochester that afternoon. His condition was critical for the next couple of days. On Friday, May 25, they did an echocardiogram in the morning and saw that his aorta was enlarged. They did a CAT scan and saw that he had an aneurism that required emergency surgery. He was ambulanced over to Strong Memorial Hospital for the surgery. It was very scary. He made it through surgery, but needed a second surgery one week later as a blood clot formed around his heart. We were in Rochester for 25 days and came home Father's Day weekend. He's on his 5th week after surgery. He's doing okay. His voice is still weak from being intubated twice. He lost a lot of weight. We're dealing with the coumadin issue. (That's a tricky one.) His INR was 5.7 today so his doctor is having us stop the coumadin until Monday when he'll get another PT test. This is all so new and overwhelming. A volunteer from the Mended Hearts organization gave us this website. I've been gathering all the information I can. We're both so thankful that he made it through, but it's still such a shock that this all happened in the first place. He's only 38 with no history of heart problems at all. He's not a smoker or a drinker. We were barbequing and planting flowers the weekend before all of this happened. This seems like a great website. I'm going to show it to my husband tomorrow. It's a nice feeling to know that you're not alone. Sometimes I still can't believe that all this has happened to us. We have two young children. I just pray that nothing will happen to this mechanical heart valve and those grafts. He's such a wonderful man....I don't know what we would do without him. Thanks for listening.

 

[Gillian (in UK)]

What a terrible shock for you and what a nightmare you have been through. You must have felt torn in all directions with concern for your husband and responsibility for your children.

But I hope and pray that now the damage has been repaired you have turned the corner and can concentrate on recovery. And I am sure that the information and support you find here will be a help to you both. There's nothing like talking to people who have had similar experiences and emerged to a new life.

With best wishes to you both.

(AVR 13 March 01)

 

[hensylee]

Hi Shari - Welcome to our house and come on in. You have been through a truly traumatic event. Most of the valve recipients in here at least have had a chance to prepare and that, in itself, is traumatic enough. You will receive much, much information and support here. Ask whatever question you need answered and there will be an answer for you and your husband. God bless.

 

[Nancy]

Hi Shari, welcome

Hi Shari, welcome

Hi Shari-

So glad you have joined us and have shared your story with us. It's been a very scary time for you and your family.

My husband has 2 mechanical valve replacements, aortic and mitral. His aortic valve is 24 years old. So he's been on Coumadin for 24 years. He's scheduled for surgery on July 18 to redo his mitral valve and to possibly repair or replace his own tricuspid valve. Both are regurgitating. He also has a pacemaker. In addition to his heart problems, he has had 2 thoracotomies, one for a benign tumor and one for removal of scar tissue which had caused fluid buildup and a partial lung collapse. Joe has never smoked in his life.

He had rheumatic fever as a teenager. He is now 70 years old.

He's had many, many episodes which involved passing out, multiple TIAs and other heart related emergencies which required trips in the ambulance to the Emergency Room. There have been many times that I didn't think he would make it, but he has pulled through, thanks to some wonderful doctors and his own physical stamina.

The Coumadin issues will resolve over time. After a while it becomes routine and no big deal. You go, you get tested, you take the dose they say and that's it until the next test. At the beginning it takes a little adjustment phase to get regulated. But it will all work out. Just make sure the facility that does the testing gives you your results the same day as the test. That's very important.

I can relate to your feelings and can tell you that this website offers much support and terrific information. Any question you have, there is always someone who can answer it. It is often hard to find people around you that can relate to what you are going through, they just don't understand all the critical problems.
The people here do. It's a website for survivors. Lots of spirit.

Please feel free to contact me if there is anything I can do to help. You can send me a private email through this site or use the forums.

Best wishes to you, your husband and children.

Nancy

 

[Christina]

Hi Shari,

I am glad you found us Shari and we are glad to have you. We hope we will be able to help you whenever you feel the need to talk to us, but it makes us all feel good if we can hold your hand and help you through this difficult ordeal. So pull up a chair, grab a cuppa, and make yourself at home with us.
This is such a great site to get the necessary support, and everyone that I have personally met so far are just super human beings. People you know will be friends for life. When I met some of them last March (we had a reunion in Scottsdale, AZ) it felt like I was amongst family and friends right away.

What a scare for both you and your husband to have to go through. I can relate with you how scary it is. You also did not have any time to prepare for this. Many of us are able to prepare for surgery, but some of us are not. I am so happy that your husband made it through the surgery. I'm sure he'll do okay, as most of us do. He's only 38 and if he has no other health problems he'll be just fine. It will take time for the sternum to heal though, and for most of us it takes about a year to get over this all together. So give him time.

I also had two open heart surgeries very close together last year August, actually within eleven days. The second one was also due to a blood clot just like your husband but mine formed underneath the new mechanical valve that had been implanted. I was on Coumadin but my INR had not stabilized yet, and the INR got too low (1.4). There is a long story behind this, and if you are interested to read my story (Christina Winkelman), go to the old forum:www.valvereplacement.com and to the personal story section. A lot of us have written our stories and anyone is welcome to read our experiences with this kind of surgery.

I am almost 11 months post-op now, and am doing okay. I thought I'd have all of my energy back by now, but I don't. It is different for all of us, and none of us are alike. I have had periods that I was feeling really great and on top of the world, but I also have times when I feel very depressed and down in the dumps and scared of what the future will hold for me.
I had no idea that I had a heart valve problem. Mine was congenital and the Aortic Valve stenosed (calcified) over time as I got older. I was lucky I went to a doctor last year and I had to really exercise my assertiveness in order for him to write me a referral for an Echocardiogram. I really got the shock of my life last July 13th when I was told I was only a few months away from heart failure. I was beside myself with fear, and this totally consumed my mind and thoughts. It was horrible! With the support of my family, close friends and many of these wonderful people I went in for my first surgery the 7th of August. The second surgery came unexpected and I told them about it later.

The INR can be very tricky, but he'll learn over time. I bought my own Protime machine 6 months after surgery, because going without testing for long periods of time can be dangerous, even if it is only one week. Mine was at times so low that I went to the lab three times a week.
I refuse to take any more chances because this is nothing to fool around with and I need to avoid another surgery at all cost. I also did not want all those veinous draws from the arm as that causes lots of scar tissue, and that can cause health problems later on in life.
If you are interested in obtaining one of these Protime machines for your husband please call LANCE at QAS Tel. 1-800-298-4515. These machines are FDA approved, and it gives me the peace of mind I need for my health. I home test most of the time, but will go to the lab maybe once every two months just to compare the INR results.
For the rest I CALL my results in to the doctor and they call me back with any medicine change. I know how to adjust the medicine myself by now, but don't feel comfortable to be totally on my own with this.
I don't ever want to be at the mercy of a doctor's office again to call me with the INR results, because they don't always call you back the same day, sometimes it is 3 days later. In the mean time the INR can be either high or low. In the interest of my health I need to know the results the same day so the Coumadin dosage can be adjusted accordingly to avoid ANY problems.

I hope I have helped you in some way. If you want to e-mail me privately, please do so. Click on the members icon above, and click on the e-mail link when you get there.
Give my very best wishes to your husband.

Christina.

 

[Zazzy]

Welcome!

Welcome!

Hi Shari,
Welcome to our little group! I am so sorry for your husband's recent ordeal... try to keep his spirits up (surgery is sometimes harder on the caregiver than the patient)... humor has helped me tremendously.

Read the member's stories.... it will enlighten you some, and hopefully show you that there is life after heart disease! lol

Take care and post often,
Zazzy

 

[FredH]

Welcome

Welcome

Hi Shari,
Sorry to hear about your husband's problems. I think you will find this site very helpful. Tell your husband to try and walk as much a possible as it really helps in the recovery. And find some food he really likes. Be careful with foods that have Vitamin K as they can cause the blood to thin. Good luck to you both.

 

[Gerry]

Hi Shari

It must have been very frightening for you.

Welcome.

Sometimes we forget that we don't always have the luxury of planning our surgeries and often events are thrust on us in unplanned ways.

I trust your husband recovers ok and that things work out for you both. It is often harder on the family than the patient.

Best wishes

 

[Jean]

Shari

Shari

You have found a haven. How shocking all this must have been for you with no preparation or anything. But rest assured that this will pass and things will start looking up for you soon. Many of us had these conditions for our entire lives but with no symptoms we recognized until near surgery time, but at least we had a few weeks or months to figure it all out. Still think of how lucky we all are living in these times when things can be done to remedy the problems instead of even 10 -20 years ago.

I have a homograft valve so can't help you much with that , but many (maybe most?, have the mechanical valves and can be a big help to the two of you on the coumadin routine. The others will be around shortly with help.

Do not hesitate to drop in and ask away with the questions. We have all be helped and are here to help to pay back the debt.

Welcome!

 

[Dan O'Brien]

Shari,

I am sorry to hear of your husband's (and your) emergency situation. I had my aortic valve replaced a little over 3 months ago. I am 37 years old and have a 7 year old son and a 21 month old daughter. They were a godsend to me in my recovery, along with my wonderful wife. I looked at having my young kids as more of a help to me than a burden -- they definitely kept my spirits up. My wife worked her butt off to take care of me and the kids during my recovery. I"m sure you have been quite busy.

My only advice is to look at this as best you can as a temporary setback. I now feel as good as I can remember feeling lately. I'm walking every day, eating better, etc... This surgery is not a stigma for me and will not hinder me in enjoying life to the fullest. To the contrary, I think it has helped me appreciate more aspects of my life and certainly my wonderful, loving family. I hope the same can come from your difficult experience. Enjoy your closer time together and focus on the positives as best you can. You fortunately have many wonderful times left to share together. Best wishes and welcome to this terrific site.

 

[Shari]

Dan,

Our girls are 5 years old and 22 months old and, like your children, they have been wonderful since we've gotten back from the hospital. It was the first time my husband and I had been away from them for more then one night. They held up remarkably well during those 3 1/2 weeks we were out of town at the hospital thanks to the support from our family and our pretty terrific neighbors. It is great to read about your positive outlook on your future and recovery. My husband is equally optimistic and appreciative of his new lease on life. I am so thankful that he made it through the entire ordeal, but I have moments where I wonder how our future will be. I always had visions of us growing old together...sitting in his and hers recliners in our 80's and lamenting the fact that our grandchildren don't visit us often enough, LOL! It pains me to imagine a future without him - for me or our girls. Hopefully, as his recovery progresses, my fears will diminish. Thanks for your post.

Shari

 

[Dan O'Brien]

Shari,

Don't sweat it! I know I plan on growing old, bad valve or not. I have a homograft, so I will be undergoing at least one more surgery in my lifetime. With the medical advances these days, this procedure will become even more routine for the surgeons and our options will expand. Thanks to my valve, I'm keeping myself in better shape now than ever before, and eating better too. So, I figure I'm adding years to my life rather than having years subtracted. Keep a positive attitude and relish your family time together now. It will be there in the future too!

 

[srwieland]

Welcome to our forum.

Wow! What a shocker! Thankfully, you guys are over the worst of this and it should get much better for your husband with each passing day.

I had a similar shock 25 years ago when I first developed valve problems and was told then that I needed surgery. Somehow, I managed to put it off until two months ago, but I still wasn't ready for it! But, I am doing so much better now and am so thankful that these doctors can do these things. It's a good thing your husband got such prompt attention to his problem.

The most important contribution to a good recovery and wonderful future is the support of family and friends. Your husband is very fortunate to have such a supportive wife as you and small children to live for. I have both a small child (a six year old sweet little girl) and also seven grandchildren, and they have all helped me so much to be positive and get through this thing.

I think you will be very grateful that you found this forum. No one else but those who've been through this themselves can help you with all the details of recovery, family support issues, etc. Especially since your husband now must be on Coumadin, you will not find a greater wealth of experience with these matters than our heart buddies here.

Again, welcome and God bless. We will be praying for your husband, yourself, and your family. Keep us posted.

 

[JBriau]

Hi Shari!!

Wishing you all the best for your family. Did your Husband have endocarditis? I know what your family is going thru. I had a similiar experience happen to me in Sept 1999. I had a toothed pulled and got an infection in my blood which headed straight for the heart. I had a clot on my mitral valve which required immediate surgery.



Thinking of you! Judy

 

[hensylee]

Welcome Shari, come on in and sit awhile with us. You will find so much help and information here. You have been through a very gruesome time and all of us know it and most of us had time to prepare for it, but an emergency surgery has to be very, very frightening. You and your husband can find comfort, education and much support here. God bless

 

[Kevin M]

Shari, it sounds like your family has had an unbelievably stressful month or so.

Obviously, I cannot compare my situation to that of your family, since mine was planned and not an emergency.

I am sure the pressure on your family over the past while has been enormous.

I can tell you that when there are no complications, most of us heart types live a very healthy, full and normal life. The fact hat your husband is young and isn't a drinker/smoker means a lot too.

Keep a positive attitude and your hopes up. Nothing can aid recovery more.

You must have felt the worst of fears over the past month or so.
Try to make yourself at home here in this group. Sometimes it's good just to know there is someone else out there who can identify with your situation. I think you will find this bunch to be extremely accepting and compassionate.

Please pass along the best of wishes to your husband and keep us in touch with your collective progress.

We're thinking of you.
Kev