There is a heart deep inside of your body. It beats. You likely take this for granted.
There is a heart deep inside of your body. It beats. You likely take this for granted.
I know that we did. Jeff and I. We took his heart and its beating for granted. And this past Christmas morning we learned not to.
I feel too tired to go into complete detail. But I do want to share a few things. Jeff is 34. He has never smoked or drank or used any drugs, ever. He has always been thin, weighing about 150 pounds when the girls were born. But in the past 3 years, he had gained about 30 pounds, still a good weight for a tall man. But lately, he had started to look a little puffy. We talked about it, but didn't really make anything of it. Then around Halloween he developed a cough. It came and went and came and went. He grew more and more tired. But he pressed on and didn't do anything about it until a few days before Xmas when he learned that he had asthma. But by Xmas eve, we knew this wasn't right. This wasn't asthma. This was something else. He couldn't breathe at all and couldn't sleep and felt like he was drowning.
So on Xmas morning his mom took him to the ER and we didn't see him again for nearly a week. Two hospitals and a million tests later and now we know that he suffered from congestive heart failure. Heart failure is when your heart fails to pump properly, not when it fails completely. So, his heart was barely pumping and couldn't move the fluids around his body, so his lungs were filling with fluid.
He was actually drowning.
And that puffy look he was sporting was actually the extra fluids in his body. Some people get heart failure from a virus, but so far, Jeff's doctor's haven't found a virus and his family history points to this problem being genetic. Besides the heart failure, Jeff's left ventrical is severely enlarged and only pumping at 20%. If Jeff's weak heart is genetic, he likely didn't help himself with the past 3 years of little sleep, high sodium food and extreme periods of stress. Before we had the girls, we lived a fairly stress-free life, doing whatever we wanted, but surviving twins has literally turned into "surviving".
So now we wait. Jeff is on a pile of meds to regulate his heart and his fluids and he is on a low-sodium diet. It is recommended that Americans eat less than 3,000 mg of sodium a day, but most Americans, including Jeff and I eat about 7,000 to 8,000mg of sodium a day. A meal at California Tortilla that he used to eat all the time had nearly 5,000mg. We must all be poisioning ourselves with these sodium levels, I keep thinking. Jeff can only eat around 1,000mg of sodium a day now. This means that he mostly has to eat all fresh food and cut out things like cheese and anything prepackaged. I am nearly done eating all of the prepackaged foods in the house and then I will be joining him full time on the new food journey. This has been hard for us because I absolutely hate cooking. I always think that the food that you get at the end isn't worth the time it took to make. And now the idea that I will actually be making bread, salsa, whatever, from scratch is just stressful. I feel like I will never ever be interested in cooking, but it is now going to have to be part of my day. But I want him to live, so here we go.
We hope that Jeff sees some improvement in this heart, but if he doesn't, the next step is to get a defibulator installed and if that doesn't work, the final step is a transplant. I can't even let myself think about that possibility. So, I won't.
People keep asking me what they can do to help us. And our friends have been so wonderful. Beth coming to hang out with the girls, Felisa sending Peapod with groceries, Sara bringing grape juice late into the night, Kelly and Lisa cooking for us, Chris visiting in the hospital, Mary Ellen offering her driving services and being a good listener. Too many to name, really.
But what you really can do for me is this. Study the faces of the people that you love. Memorize them. Listen to them when they tell you they are tired. Take a nap yourself. Think about what you are eating. Accept that no one is invincible and take care.
Comments
Thank you for sharing this. It's so easy to forget to take care of yourself in certain ways. I hope this year to do more of that.
My thoughts go out to you and your family. Much love!
Posted by: daniellexo | January 11, 2009 9:24 AM
and you know if I were nearby, I would be right there, too. Cooking you food and coming over and cooking with you! You guys are going to be okay. This is all going to work. And you can make paneer (indian cheese) at home just from milk and vinegar. It's not stretchy, but it's cheese, and lowlowlow sodium.
wishing you guys well, and glad you have good healthcare, and hope you don't need to make much more use of it.
and check out this blog (which you've probably already found). http://dontsalt.blogspot.com/
much love,
eileen
Posted by: eileen | January 11, 2009 9:29 AM
I just want to say I think you are very brave being so honest. It probably doesn't feel like it, but you are, and posting this help others re assess how they live. I know I will be. I hope Jeff gets better and this journey helps you all live well and long. Much love to you all.
Posted by: MrsGibson | January 11, 2009 9:46 AM
Hey, I am really sorry to hear about all this.
I know how confusing doctors can be with all of the medical stuff, so if you don't have someone to explain medical stuff, I could probably help (not a MD, but a PhD in the biomedical field).
Posted by: monica | January 11, 2009 10:35 AM
Oh my goodness, Tina! I had no idea you guys were going through so much. Chris and I will be in DC from the 18-21, if there is anything you need me to do for you while we're in town let me know. Anything you'd especially like that I can make and bring you I will.
Posted by: Audrey | January 11, 2009 11:06 AM
Tina! My thoughts and candles are lit for you....take care and always remember to breathe.
Posted by: Colleen | January 11, 2009 12:41 PM
Thank you for using this experience to help others. I just want to let you know that I'm keeping you and your family in my thoughts.
Posted by: robyn | January 11, 2009 1:54 PM
My thoughts are with you guys. And I know we've never met and we really don't know each other apart from the few emails we've exchanged. But I would absolutely cook for you guys if we lived closer.
Sorry if that sounds stalkerish. :) It's just I always miscalculate when I cook and I consistently have too much food and wish I could share with someone. I'd happily share with you.
Posted by: Kuky | January 11, 2009 7:48 PM
I'm so sorry you all are going through this. I am sending good vibes to you both. A few things have happened recently that have definitely brought home the fragility of life to me. It is so easy to take things for granted and get bogged down in everyday stress and I am trying to make appreciating the people around me a more daily thing.
For bread, maybe you can find a bread machine on Craigslist or something. It makes bread super easy (and you can leave out the salt). I have a friend who makes her own bread every day using a stand mixer (kitchenaid)and also makes her own paneer and she says that is also easy. There are salt substitutes out there that could help make it taste better.
Ever since reading Barbara Kingsolver's book Animal Vegetable Miracle I have been meaning to try making my own cheese. There is a book called "Cheesemaking Made Easy" and kits & such for home cheesemaking. Supposedly it is SUPER easy to make fresh mozzarella and other soft cheeses. I am supposed to try it soon with a friend.
I hope that you will learn to like cooking, or at least not hate it.
Posted by: allison | January 12, 2009 2:14 AM
So sorry to hear your news Tina. Lots of love to you all and best wishes as you embark on this new period in your lives. x
Posted by: sallytrombone | January 12, 2009 4:50 AM
Oh, Tina, you are so the grown up. You are constantly amazing me. I'm sorry that your little family has to go through this. Watch out for all the good energy coming to you!
Posted by: Amy | January 12, 2009 8:43 PM
Sarah and I are keeping the four of you in our thoughts. Let me know how he's doing. How are you doing adjusting your diets?
Posted by: Brian Feldman | January 13, 2009 8:34 AM
I'm so so sorry you guys are going through this, I wish there was anything I could do to help. But also, thank you for sharing this. After reading it, I have decided that am quitting smoking for good.
Posted by: yelena | January 25, 2009 5:17 PM
Hi Tina,
I've followed your blog here and there as I also have 3 year old b/g twins and find your stories of simple everyday life comforting in a way that only twin moms could understand. I can't imagine doing what you (we) do and adding the stress of Jeff's illness. There are amazing Dr.'s in this area and having been through 8 surgeries with my husband (pre-twins), I'll share a tidbit I learned along the way...never take no for an answer, don't feel bad about asking a million questions and understanding all your options...this is his body and your lives and sometimes you have to get aggressive with them to get the attention he needs. You can do this. I am sure your auto-pilot has already been engaged, but hang in there. My prayers are with you.
Posted by: cynthia | January 31, 2009 8:51 AM
Thinking of you. I hope things are looking up.
Posted by: Lara | February 1, 2009 6:34 AM
I am so sorry for you and your family. My mom had her second heart attack on Christmas morning and developed congestive heart failure because of it. A real eye opener!!! I feel exactly as you do after learning about sodium levels in food. We are just poising ourselves and don't even know it. Like you I hate cooking, but have been forced into that. No fast food nothing that is easy, but Trader Joes has been a big help. So try to stay positive it does get better. -EJP
Posted by: EJPcreations | February 13, 2009 12:44 PM
You and your family are in my prayers.
Posted by: Joe | February 22, 2009 4:23 PM
Tina this sure is an eye opener, thank you for mustering the strength it took to share. I'm so sorry to hear you are going through all of this, and can't even begin to imagine the stress.
My only advice is to try and see cooking as crafting. It really can be fun, and eating healthily is empowering in a lot of ways. We should ALL give up packaged & processed foods and start eating like you and Jeff.
Posted by: Rachel | February 24, 2009 11:48 AM
Hey Tina. Hope Jeff is ok and that you and the girls are doing well. Thinking about you all.
x
Posted by: sallytrombone | March 5, 2009 4:11 PM
Oh, Tina, you were amazing this weekend and put together such a fantastic event! I would never have guessed that you were dealing with illness at home. I agree with Rachel that you ought to try thinking of cooking as a creative outlet, like crafting. A blog like lunch in a box can give you some fun ideas—you'll have to figure out the salt intake. I wish you peace and healing.
Posted by: nylonthread | May 5, 2009 8:56 PM