March 11, 2012

A Sick Heart

I am sitting here to blog when I should be going to bed. We "spring forward" in a few hours, losing an hour of sleep, which is really the last thing I need right now.

But this is the first quiet, alone time I've had in days. I need to write about what's happening. It helps me process. I honestly don't think I can go to bed without doing it.

The basic update is this: Mark was moved out of the ICU to the regular cardiac care floor on Saturday around 6:00 PM. Since having his second breathing tube removed late on Wednesday he has made improvements. His heart rate and blood pressure have remained stable. With lots of medication. He is on an antiarrhythmic called Amiodarone to help control Atrial Fibrillation. He has also been put on a very strong blood thinner, Warfarin (Coumadin), to help control blood clots that can result from A-Fib. Mark's heart is enlarged (Cardiomyopathy). Further, he is in congestive heart failure.

All those complicated terms and meds boil down to one simply fact: Mark's heart is super sick.

If I list EVERYTHING wrong with my husband, it's overwhelming:

Type 1 Diabetes (insulin dependent)
End Stage Renal Disease (kidney failure)
Peripheral Vascular Disease (veins)
Neuropathy (loss of feeling in his lower extremities)
Coronary Artery Disease (has had 2 heart attacks & double bypass)
Arrhythmia
Cardiomyopathy
Congestive Heart Failure
and prone to staph infection

Everything stems from Diabetes. He has been dealing with it since age 9. Obviously what is most troubling at this juncture are all his heart problems. I have talked at length about the night of Mark's bypass surgery and that his heart stopped 3 times. In this past week, Mark's heart has stopped twice more.

Before last Thursday, We didn't know that things were so serious. I, at least, naively thought Mark's heart would be good to go for many years after having bypass. It's been only a year and a half.

In this past week I have had to come to terms with the fact that my husband's life may come to an end at any moment.

I have also talked before about how I have known for a long time that I would outlive Mark. But until now, it was all "what if" and theory and probability. Now it's reality.

When Mark was extubated on Wednesday, I had to inform him that there's nothing more than medication that can be done for him. There are no surgeries. No cures. His diseases have taken their toll.

His first question was, "How long?" I couldn't give him an answer, and neither can the doctors.

I had to tell him I wasn't even sure he'd be leaving the hospital.

He said, "I have to go home."

Mark and I had to host a family meeting on Thursday morning to go over what our options are with hospital staff. We discussed end of life issues such as when to stop trying and hospice.

Everyone has their opinions on these issues. I had to look my husband in the face and ask him what HE wants.

He doesn't want to die. He wants to keep fighting for us, his loved ones, for his children. He's sad.

We filled out a Living Will and Durable Power of Attorney papers. We spent some time talking about songs that have had meaning in his life, about how he'd like a service for him to be.

These are not conversations any wife wants to have with her husband.

Right now, Mark is rallying, and it's wonderful. I have spent as much time with him as I could physically handle since he got off the breathing tube. I am so grateful for it. Everyone who loves him is. Nearly everyone who loves him has come to see him, from both near and far. And there are still more.

It is overwhelming, dizzying, amazing, sad and inspiring all at the same time. I am so proud of my husband. So proud of his shear determination to squeeze every drop out of life that he can. He understands what is happening, but he's not going without a fight. And none of us would expect anything less from Mark.

For myself....oh God. I have sobbed til it hurt and I have laughed til it hurt. I am bouyed by all the mass amounts of love, care, concern, well-wishes, help, prayers, hope, laughter and togetherness. I know I am not alone and that is awesome.

My kids are doing OK so far, although they are missing me. Especially AJ. He doesn't understand why I'm spending so much time at the hospital. I've told him that he and Cami need me, but so does Daddy, and I'm trying to divide my time. I have basically been home some every other day. ALL of there grandparents are here right now, their aunt too, and their cousins just flew in tonight. I think they shouldn't be thinking about me at all, right? Well, it's kind of nice to know that even with all that attention and fun, they might still miss their mom.

Mark and I are being bombarded with lots of information and opinions. But I think we are doing a damn good job of filtering it all and remaining focused on each other and our kids. We're gonna love each other through this, see where it takes us and have no regrets.

It's late and I should go to bed. I just have so much more I could say! But there is time for that. I know I will say all I need to say as I need to say it. For now, I am taking each day as it comes, loving and being loved.

55 comments:

  1. Oh Jen. I'm so sorry it's been such a tough, difficult and emotionally insane time for you and your family. I can see your strength and Mark's courage in this post, and I know that will take you through what's to come, whatever that may be. I'm glad you have so much love and support around you, in real life and virtually. Hang on in there, and thinking of you, Mark and the kids.

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  2. No person wants to be having the conversations you have had with Mark, with one of their loved ones. At the same time perhaps some wish they had the opportunity and never got the chance. I can't begin to imagine what you are going through but I feel the pain in your words.

    May faith and love keep you strong and together for as long as possible

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  3. I'm just overwhelmed with strength the two of you are showing right now. Those conversations are impossible, yet you handled them with grace and helped give him the strength to keep fighting. Thinking of you.

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    1. Thank you so much, Katie. For this, and for your perspectives on children.

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  4. I am so, so sorry to hear about everything you're going through. So sorry. I wish there was something I could do for you other than pray, and to let you know that there are so many people out here sending you strength and courage.

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  5. I'm so sorry, Jen. But, once again, I'm amazed at your strength. And that of your husband. You've been in my thoughts every day and I'm still praying for you!

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    1. I'm amazed too. Wondering how long it will last.

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  6. Jen you are so strong and brave! I think of you daily and get excited to read your updates knowing there has to be some good in all of this. You can do this!

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    1. The good in this is that I know we have had a great life together.

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  7. Jen, Your husband's heart is clearly so full of love for you and your kids. Having those difficult conversations must have been so difficult, but you handled them with strength and love. Sending you lots of good energy for the days ahead.

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  8. So much to learn in such a short period of time. I hope he surprises everyone and hangs on for years to come. Your strength is admirable - an example to us all.

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  9. Prayers are shot up to Heaven all day for you and your family. I've been checking your timeline to see what the progress has been. I admire your grace and strength very much.
    XO, Karyn

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  10. Prayers are shot up to Heaven all day for you and your family. I've been checking your timeline to see what the progress has been. I admire your grace and strength very much.
    XO, Karyn

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  11. Jen, I love you, Mark, Camryn and AJ so much. As heartbreaking and painful this is to watch (and be a part of), the love that you and Mark have for eachother and your kids is so beautiful to witness. The gracefulness and strength that you two are walking through this with is amazing. I know you know that I love you, and I hope you know I would trade my friendship with you guys for anything. I am blessed to love and be loved by you!

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  12. Would NOT, would NOT trade my friendship! That what I get for being all mushy! I love you.

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  13. I am in awe your strength, both of you - nobody wants to have that conversation with any family member. Knowing that you are okay with whichever way this path takes you is incredible, proof all the uncertainties don't matter when there is love.

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  14. I have a 9 year old daughter that was diagnosed type 1 diabetic just 3 months ago. I have these fears for her and am always concerned that we aren't doing enough for her health. I cried as I read this partly in sorrow for the struggle your family faces, and for joy because of the love and devotion you have for your husband, children and family. Praying for your strength and wisdom during this time. You have such a great friend in Carin - she is woman of character, strength and stability. Lean on those people that will hold you up and hold your decisions in the highest respect. Blessings to you.

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    1. Please know that you will do the best you can at the moment and that's all you can do.

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  15. I am so very sorry you're family is going through this right now. Your strength and courage are apparent through this post. I know that will help to carry you through this journey. We are all here for you. Thinking of you, Mark, and your family.

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  16. You, Mark and all of your family & loved ones are in my prayers. I have no words... just know you're in my thoughts.

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  17. oh Jennifer...I knew it wasn't fantastic, but I didn't realize it was all this bad...prayers being said for your husband and for you and your children...
    I just don't know what to say...hugs my friends...

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    1. Yeah, I was hesitating a lot before spilling this all out there. But there was no way I could hold it in forever.

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  18. Sweetie, I'm so very very sorry. I've been thinking of you all weekend long. We're still praying for Mark and you and the kids.

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  19. Your strength truly is amazing. I admire you and Mark--I know you are putting each other and your children first in all these difficult conversations. You will always have that, how much you loved and respected each other. Wishing the happiest outcome for both of you.

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  20. Wow. I'm in awe of you and Mark. Your strength, courage, love, and will to keep fighting. Please know that I'm praying for your famiy right now. I'm humbled by your acceptance of whatever the inevitable may bring, and inspired by your fighting spirit.

    Also, and this will sound TOTALLY stupid, I gave you an award. Before I knew about this, because you rock.

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  21. I am so sorry that your family is going through this and admire your strength and courage. Taking one day at a time is all you can do. My heart goes out to you. Keep strong, x thoughts are with you

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  22. So sorry to hear of this, Jen. Prayers and hugs for your family.
    xo

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  23. I am so very sorry to hear this. Your entire family has been and will continue to be in my thoughts and prayers. May there be peace that surrounds each of you as you face these difficult times of your lives. I cannot imagine being in your shoes, may you always find the strength that you need. Please remember to also care for yourself during this time.

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  24. Jennifer, I will pray for your husband, you, and your family. You are remarkably strong and courageous, which I realize doesn't make any of this easier. Blessings to you.

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  25. You and your family are in my thoughts. You are both amazing, and this is the most difficult situation. I am thinking of you and your family

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  26. I'm keeping you and your family in my heart. I hope you all find peace.

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  27. Everything has been said but know I'm thinking of you and your family... hang in there girl.

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  28. Keeping you, Mark and your family in our prayers, Jennifer.

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  29. just popping in to let you know you are very much in my thoughts and prayers. I hope there will be very real moments of peace for you during this time. such courage and strength dear friend.

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  30. Just checking in... thinking of you and your family. <3

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