Date nearing and scaried to death

[notneb1970]

Hi all,

My husband was born with congential heart defects, TOF to be specific. He has had 2 previous open heart surgeries, his first at 3 weeks of age, which was a VSD closer, pulmonary valvoplasty and then he developed sternal infections which required 3 debridment surgeries from the age of 5 weeks to 9 months of age. At the age of 8 he had his 2nd OHS which consisted of a PFO closer and a infuniblmentary muscle resection and dacron patchs thru his pulmonary trac. In 2001 he had EPS with radiocath ablations. On July 23rd he is having a PVR, sinus venous ASD closer and a Maze procedure. Needless to say we are scaried. I am a ICU RN and see the worst of the worst when it comes to complications from surgery whether it is CV or regular surgery. He is only 38.....and has a 10 year old. I am trying to stay the rock in the family but I am having a difficult time. Any advice from those who have been down this road especially those with younger children?!?!
Hugs,
Dawn

 

[perrypiratesdad]

Dawn, well, you and your husband are normal to be scared. My wife and I were terrified when I had to have my surgery when I was 27 and I had three small children.

Advice? Well, I wish I had a magic pill for you that you could take and then wake up after it is all over, but then you wouldn't be there for your husband. And I am sure you are asking yourself, "who will be there for me?" Well, you need a support network. Everyone in my family was scared. My wife, kids, parents, myself, etc., but we all leaned on each other and somehow were strong enough to get through it. We also leaned on our friends AND more importantly our faith.

You will get through this. It may be tough, but you will get through this. Be as strong as you can be, but it is okay to be scared to death. You wouldn't be human if you were not. We are there for you and my prayers go out to you and your family for strength in these times.

 

[Ross]

Wow. I can certainly see why your scared. I would hope that he has a high risk surgeon working on him. For all he's been through I know it's tough. Others will be along to post also, but wanted to welcome you more so then anything.

 

[notneb1970]

His surgeon is Dr. Jospeh Dearani at Mayo clinic. We have been thru 2 other cardiologist to finally get this 3rd opinion at Mayo clinic. We went to Barnes adult congential heart center and was told that OHS wasn't necessary at this time because the cardiologist couldn't find the ASD that a regular cardiologist could find and that the PV didn't need to be replaced at this time(maybe in 5 years).
It has been an extremely flusterating last 3 months for us.....with tons of dr visits and about every imaginable test ran 3 different times. Add on top of that they put my husband oh short term disability (which last for 6 months). Then at the end of may my husband's employer when bankrupt and laid off all 1900 employees with no notice and terminated their healthcare insurance that same day. Luckily, my co. insurance has picked us all up and covers preexisiting conditions....but at a higher rate of copays and another deductible.
We are both emotionally and physically drained......
Dawn

 

[Phyllis]

Welcome, Dawn. I put your husband on the calendar and we will be here to lend support and prayers for you both. He is having his surgery at a fine hospital and I am sure he will be fine and back with you all before you know it. Hang in there, it's often harder on the family than it is on the patient.

 

[rhino19]

Dawn you are not alone. We are all here with you. My husband is having surgery the 28th so I can feel your anticipation. Its hard but this sight gives you a chance to voice your concerns, find a friend and know you are not alone, then when the computer goes off put that smile on you face and be there for him. It is kinda like having 2 coats shall I say, It is Ok to be scared I am, but read all the positive things, and focus on those articles and tid bits that will make you feel better, and most importantly remember you are NOT ALONE and if you need help don't be afraid to ask.

Good luck and hang in there, wishing you the best and please keep us posted.

 

[Cooker]

Wishing him a successful surgery and a smooth recovery??Godspeed.



​

 

[geebee]

Scared is normal - welcome to the family.

I wish you both all the best for a smooth trip. Let us know how we can help.

 

[Marguerite53]

Dawn. I'm sorry for your situation. I'm so very glad that you found us. We can be your rock for awhile!!! How's that? Come here and unload, question, whine, release....you name it. We've heard it all and we're all very good listeners and supporters.

Sounds like you have chosen excellent and competent professionals to handle your husbands unique set of circumstances. It is time to try to let go of the fear and move through the next few weeks with confidence and gratitude that there is a great chance that all can be mended and life can return to normal. I know it is tough to muster up that confidence, but optimism is an important ingredient to success. You've done all the work you can possibly do to make this go right. Now you have to have faith and love carry you onward.

Best wishes.

Keep talking with us. We want to help.

Marguerite

 

[Lynlw]

Hi, Dawn, my 20 year old son didn't have TOF, but like TOF repairs he has the pulmonary conduit and had a few conduit revisions w/ dacron patches and all kinds of complications. I can't really offer any advice, but if it helps, I always felt a little better thinking about how replacing pulm conduits, is one of the more "routine' redos for Adult CHD surgeons.
Also it has been a while since your husbands last surgery,(what a Blessing his replacement lasted so long) Just in the 20 years since Justin's first, I'm blown away at the improvements and how much better everything is. I was shocked when Justin has his surgery at 10 how quickly he was home and each surgery since, I see most of the patients doing so much better so much faster post op, if that makes sense. The surgeons have learned alot not only in the OR but they seems to have a much better handle on complications and post op care and know what to do to avoid or minimize alot potentional problems that come from multiple redos.
I will keep you in my prayers, Lyn

 

[Freddie]

Welcome to the family Dawn.

We'll offer the best support we can.

I can't give you any answers about the surgery, but may I suggest to talk to you 10 year old. Children need to understand what mom and dad are feeling during a time like this. This just my opinion and you know your child best and know how to explain this matter so they can understand.
Best Wishes

 

[njean]

Dear Dawn,

Just wanted to say welcome to the forum & wishing your husband all the best w/his upcoming surgery.

The fear that you & he are experiencing is something that all of us here have experienced before our surgeries. So hang in there my friend & keep thinking positive thoughts.

Our thoughts & prayers are w/you!

 

[Nancy]

Hi Dawn-

What you are feeling is very normal. And your husband has some daunting medical problems to be sure. Being in the medical field is sometimes not an asset especially if you are working in the ICU, you see it all.

On the other hand, it sounds as if your husband's surgeon is one in whom you can have confidence.

I have taken care of my husband through many thoracic surgeries, valves and lungs. It is nerve-wracking to say the least.

Please remember that the will to live is a very powerful influence on a person's ability to get to and through surgery and then through the recovery stages.

I had to be an actress big time! I always told Joe, "of course you will get through this, and of course you will recover". He always knew that I "had his back" and would be there for him no matter what happened.

Meanwhile I was quaking in my boots so to speak. But I never let on. I just kept smiling, told him I needed him around and that I would do whatever it took to get through recovery.

He survived many, many surgeries and procedures throughout his lifetime.

So I believe this strategy works.

This is a terrific site to come to. We will all do our best to help you through these difficult times.

Best wishes.

 

[ALCapshaw2]

Welcome Dawn,

I'm glad you / husband are going to Mayo Clinic. That is the #2 rated Heart Hospital (behind Cleveland Clinic). They should know how to deal with the 'worst of the worst' should that need arise. I've heard of Dr. Dearani but don't know anything about him. Did you / husband ask him about the Risks / Benefits?

We have / had several members with multiple surgeries.
Nancy is our Roll Model Supporting Spouse. You couldn't find a better support person to watch over the Doctors and Nurses and get in their face if/when needed.

Doctors told Joe (Nancy's husband) they didn't think he would survive beyond age 50. He died at 75 of multiple organ failure. His Heart and Valves were still working just fine right to the end. Most of us attribute Joe's longevity to his will to live and Nancy's vigilence and wisdom in knowing when his Doctors were at the end of their ability. She always managed to find the right Doctors to put together a plan to handle his co-morbidities.

GeeBee is another multiple OHS survivor. She could probably tell you the screennames of several others.

Bottom Line (from Nancy's signature line):
"Never Give In and Never Give Up"

These people 'did it'. So can You (and your Husband)!

Keep the Faith.

'AL Capshaw'

 

[Karlynn]

Hi Dawn and welcome. I think being a spouse and being an ICU RN must be a mixed blessing. Sometimes ignorance is bliss, but I'm sure that your husband has benefited by your experience in the medical field. He will be in good hands at Mayo and I will keep you both in my prayers.

 

[WayneGM]

Welcome, Dawn. Scared is normal, but you're not alone. Best wishes for a successful surgery. Life is good on this side of the mountain.

 

[PairoDocs]

From Pairodocs-Laura

From Pairodocs-Laura

Dawn,
My husband did not have to have multiple surgeries, but the OHS was a scary experience to say the least. I'll echo (ha, ha) the others and reiterate that your husband is in the best of hands. I have referred to the Mayo Clinic many times. I, too, am a medical professional (M.D.) with ICU experience. I was VERY impressed with the care my husband received at St. Luke's Boise. I did play "the doctor card" when necessary; that is your right as a trained professional, but I always let the nurses and the doctors do their jobs. The atmosphere was healing and reassuring, and I have always been convinced that family involvement is usually integral to best recovery. If you feel that your husband would do better on a certain type of therapy, by all means, chime in, but in a tactful manner.

We had the involvement of family, friends, and church. Chris was on some 108 prayer chains! You also have this wonderful forum! As a medical professional, you daily see the miracles as well as the disasters. Have faith in your profession!

Blessings from Idaho (but I am from Chicago and trained in S. IL).
-Laura

 

[R&N Brown]

Welcome to the family Dawn.

We'll offer the best support we can.

I can't give you any answers about the surgery, but may I suggest to talk to you 10 year old. Children need to understand what mom and dad are feeling during a time like this. This just my opinion and you know your child best and know how to explain this matter so they can understand.
Best Wishes

Hi there,
I guess in my situation, having two 16 year olds and two 11 year olds, I would say, be very very careful about chatting with your kids. I thought being honest with my kids was the best thing, but since, I have seen much anxiety in them...one of them scared to death any time his dad does something, and sure doesn't want our friends looking at him like a poor boy...another one all of a sudden wetting the bed again...another one just crying at the drop of a hat and yet the last one trying to make everything ok by doing everything to please us and just folding inside. I know that all kids are different, and we have had an extremely close relationship with our kids always, but if I could do it over again, I may not be quite so honest. They see their dad and how sick he is most of the time these days...OHS on July 16th...so I think that is probably the biggest fear for them. I wish you luck with this one because I still don't know if I am doing the right thing by my beautiful children. They say they wanted to know, but I can clearly see the results of them knowing.
Nancy~

 

[cday]

Prayers and pickles

Prayers and pickles

Dawn,

I have five children (12 to 21). I didn't want to sugar-coat the surgery, but I also wanted to be positive about it. I stressed the wonderful medical advances. I also thought that if they were completely shielded they would not realize what a blessing from God it was their dad's surgery was a success. They needed to feel the thankfulness that I feel very minute that God was so gracious and merciful to allow this wonderful surgery with a successful result. And it is very serious and I think they would be ill served to be left completely in the dark.

My 12 year old is a huge worrier. I did NOT say to my 12yo - Dad may die in surgery AND I did NOT say Dad will be OK. She asked me point blank and my answer was: We pray that everything will go smoothly, and you should be able to talk to Dad in a day or two. Everything did not go so smoothly (They had to go back in 1 hour later to stop some surgical but non-heart related bleeding). I didn't tell her about that. I tried to relay how serious it was without all the details. Then I would call her at her cousin's house and give an update and try to tell her something funny that had happened.

She and my husband came up with a plan -- I was supposed to say "Pickles" when he came out of surgery to help him wake up. So, as we were trying to wake him up I would say: Remember you are supposed to wake up when I say "Pickles" -- she enjoyed the reports about his responses to that.

As far as the spouse's nerves - I am still jumpy after 8 weeks post-op.

Cindy

 

[Mb]

My husband has has two OHS. The first in 2001, when he had his aortic and mitral valves replaced with St. Jude mechanical valves. In 2007, he has a tricuspid annuplasty installed. Certainly, I would say I was much more scared for the first surgery...then the second, although even to me this doens't make much sense. From reading your post, I can see that you actually were not with him for the first open hearts he had performed, so this is a "first" for you! Let no one tell you that you don't have reasons to be scared....of course you do. But, first and foremost, there is no choice, for without the surgery he most certainly won't be with you for long. Secondly you have assuredly chosen a great doctor and fabulous facility to have this surgery performed in. You have done your research, and you have chosen well. Have confidence in your decisions. You have done your best.

When my husband has his first surgery, about a week or so before he was scheduled, I had a sudden calm come over me.....sort of a sense of confident purpose. He was SO sick, and I just knew that God was with us, in our quest to get him well. This calmness lasted for quite some time.....both the days and weeks leading up to, and after the surgery.

As far as your child is concerned......my husband and I did not tell our 20 something year olds until we knew what needed to be done, who was going to do it, and when. I think you no doubt know your own child the best. Rely on your own good judgement about how to tell him....if at all. Your child....your choice.

I wish you both the best in the weeks and months to come.

Marybeth