Watching My Hair Grow

My first [almost] "Mommy"

2008-04-09T22:59:00.000-07:00

Tonight Jack and I were racing around with Josh and giggling. Then Jack crawled right to me and said the closest thing to "Mommy" he's ever said. It made my heart melt. He says "da-da-da- and a lot of sounds, but mama is less. Today hearing "mommy' was huge. I loved it! And that was after we went to the park and enjoyed the swings. Things are turning up.

For Myself and My Family

2008-03-30T21:33:00.000-07:00

I love taking care of myself and my family, and I've had to accept being taken care of this past year. I've always loved creating a beautiful environment around me and being innovative. I like to build stuff in the garage. Not just flower arrangements, but working with wood, pipe, and cords to build and fix things. I think it's funny to build something using PVC pipe when PVCs are the bad heart episodes that can happen if I go without my heart meds or lift too much.

There really is a lot of irony in this house. Like my blood pressure machine, the baby monitors, and batteries charging all make the same beep, beep, beep, beeeeeeeeeeep-beep, beep, -----------------. Now that would have scared the crap out of (the flatlining sound) a couple months ago, but now I figure it's humor. Or biofeedback. Whatever it is, it's living, not dying.

I've been using dollies and wheelbarrows to cart stuff around the yard and garage. It keeps my body healthier and makes me productive at the same time. This weekend was a good team effort of getting stuff done around the house while my parents helped with Jack. Josh and I think we want to give Jack a swing for his birthday, so we talked about how to build one for our yard. Josh and I can't believe we've been in this house under 3 years. So much happening in so little time, but we're very lucky and grateful to be where we are. Lots of work ourselves and lots of help from our families.

Great friends giving me perspective

2008-03-29T21:17:00.000-07:00

Last night my best friend from high school asked me if Josh gets my "Lucille Ball" antics. I didn't know, so I asked him today. He and I hadn't thought of me that way exactly, but it's true. I'm more of a storyteller and comedian usually than a serious writer. I like to be fun, and laugh my way through anything I go through. I take what I have to seriously, then try to joke about it. It's the only way for me to be.

Kelly, my friend, is someone I admire for her strength and attitude and sheer guts. It turns out she admires me for the same. We met when we were 15 and with any luck, we'll be laughing together when we're in our sixties and later.

What each of us has always needed is perspective from someone who isn't so close to the other's situation. Last night's talk started out serious, but turned into lots of laughter. We decided we need to see each other and just be goofy. I've been married for almost 6 1/2 years and she hasn't met my husband yet. I'm looking forward to her meeting Josh and Jack. That will be fun.

My Mom's Birthday

2008-03-27T21:52:00.000-07:00

Today's my mom's birthday and nothing went as planned. She and my husband, dad, and son have been sick with the flu going around. I'm home and enjoyed the day of taking care of Josh and Jack along with Kamala. Had to do some fast thinking and walking to get to store and appointment today and not contaminate anyone else.

Jack enjoyed the walk to and from the doctor, all bundled up in his jacket, hat and squeaky gloves. And tonight he and I listened to music and played. I loved every moment of it. The most mindful I've ever been in my life is with him, and it's been that way since I could feel him move. I still feel SO connected to him. There's nothing better than his hugs, kisses, and giggles. He's independent, waves to everyone in a "royal wave" and says consonants. He also had his first chance on the swings the other day and LOVED it. He wanted to go higher and higher and giggled like when his daddy does "flying boy." I loved being with him for that. I'm looking forward to many more trips to the same local park.

Today was my also my 4th appointment appointment regarding the IUD that will go in April 9. The tests involved are necessary, but some have been frustrating medical do-overs: one lab doesn't talk to the other, one lab was out of the test I needed once I got through waiting and yada yada at the doctor appointment itself. Also got more medical bills today, but all-in-all, have to say that things are really turning up. My OB said I now seem like "the same old Jenn." I told him what a joy Jack is, and he said that Jack is like winning the lottery. My family and I agree.

Ordinary people under pressure

2008-03-20T18:24:00.000-07:00

Line from movie "The Insider"

[FROM MIKE WALLACE CHARACTER PLAYED BY CHRISTOPHER PLUMMER] "Who are these people?"

[RESPONSE FROM REPORTER] "Ordinary people under extraordinary pressure, Mike. What the Hell do you expect, grace and consistency?"

This line resonates with me a lot. That's how I feel and the type of pressure my family is under.

Getting back to the original Jenn

2008-03-19T13:09:00.000-07:00

My parents, husband and I have been on a wild ride for the last few months. Who knew things could have gotten WORSE with me medically after the good news about my heart improving, but they did.

It's all so complex, but it turns out the birth control pill that the cardiologist and the OB cleared me to take for my endometriosis and to not get pregnant (getting pregnant would kill me literally) was causing weird side effects. Now I'm happy to announce that I'm much more myself than I've been lately. Still not cleared by the cardiologist to drive, but hoping that day will come soon. Meanwhile, I have the blue placard pass if any of my friends want to go anywhere fun. I bring the pass to good parking, you provide the ride.

Jack, my son, is doing great. He's such a happy, well-adjusted kid who's very connected with his family. What a blessing.

It's so surreal to think that it's only been 8 months since my diagnosis. My son will be a year old May 10, so that's a happy thing. It's just a lot of trauma and happiness mixed in under one year. And NO ONE could have predicted any of it. It's rare and horrific what happened to me. My focus is on getting well and being there for my family, but also keeping balance in my life. We've all had so much of each other due to our circumstances that a little time with friends would be good. Looking forward to doing that.

Lightening up

2008-03-02T20:39:00.000-08:00

I'm writing this with an Erma Bombeck approach. She was an Idol to me, and now I want the world to remember her. The amazing woman, the writer, and all her cherry pitts. Since her passing, more technology has become and I'm not taking any of it for granted.

Here's to you Erma! I'm in a circle of writers now who would appreciate all you had to give. I'm writing this listening to great music of many eras and just finished dancing with my son. He's everything to us. Family is success, and although we know we'll get pushed throughout life, I think my family has survived the worst of the pitts. My mom's the only one in the world who can even fathom what this life has done to me and for me. She embraced your attitude, and me. That's all I need sometimes.

I'm playing around with the colors of my blog. It's fun. Been being creative in tons of formats today (photography, framing, building with old-fashioned tools). The color of my layout now is light stretch denim. I'm adding pink and blue. Always liked those colors.

Cured my pity party today with a little crying, a little prayer, and some quiet time. Something I don't get much of. If people think I'm lonely, that's not it.

"This is how a heart breaks" by Rob Thomas is on my playlist from before. How's that for irony? It's still a fun upbeat song.

I survived. I really did, so everyone can feel okay about it now.

Now I'm listening to "Watching the wheels go around" by John Lennon. This song speaks to me in a big way. I love original artists. Plus the lyrics to this song can't be more on target with my life. "I just had to let it goooooooo...."

For Lol

2008-02-16T22:26:00.000-08:00

I'm just finally mastering my own Lollyisms for my own writing. About Grief, About a lot of things. I'm just still having the cardiology problems, no cardiologist available today, and I can feel everything. Really. I've conquered fear. I feel the original banging, thumping in my heart. It's not over. It's really not. Working on it. Working on it every day.

I can solve some problems myself, others not. I'll post stuff to the same old blog, okay? I'm finding humor in a truly grief-stricken situation. Someday I'll post the kind of to do list that would truly make you laugh. It makes me laugh. It does. And it's written. Just still same old crap right now, same old crap. We're whittling away at it, whittling not even the right word. It definitely been running. Like marathon running. BIG TIME.

For our miracle son and our family

2008-02-09T15:33:00.000-08:00

Mom, Dad, Josh

I love you all so much! Thank you for loving me through this!

love celebrate and honor life

2008-02-07T23:24:00.000-08:00

finally accepting and ready to celebrate

Seeking Understanding

2007-11-18T18:05:00.001-08:00

[Email to Another PPCM Jennifer]
Hi bushgirl jenn,

So glad to have found you. My husband saw your posting and forwarded it to me. I was diagnosed July 26, 2007, shortly after my son was born (May 10). I've never had a heart problem and had similar experience to yours. I'm a new mom and thought my tiredness was normal mommy post-c-section stuff. I was incredibly fit, so this came as such a shock. I had had ovarian cysts, endometriosis, and other female-oriented health problems, but nothing life threatening. My experience sounds so much like yours, because I assumed my problem was bronchitis and something going on with a new birth control pill that was supposed to keep my endometriosis from coming back while safely breast feeding. Being up all night with a newborn and breast feeding, and being post-surgery, I thought what I was experiencing was normal.

My C-section was planned and I had a great OBGYN. Thank God, because I later found out that had I gone into labor at all, I most likely would be dead now. I was initially diagnosed at transplant level (EF 20%), but my 3-month echo showed minor improvement. I'm totally optimistic that I'll get through this without a transplant, but could it would be so great to connect with others going through it on a similar level. Looks like I can reply to you directly, which is great. I've scanned these support groups for a while, but had not yet found any postings that really spoke to me. Yours really does.

Due to the meds and not knowing enough about their effects, I've been overhydrated to near coma (which also caused severe memory loss that later came back) and dehydrated to the point of collapse and total loss of cognition. My career has been as a writer and high-tech consultant in Silicon Valley, so I've documented tons about my symptoms and cause and effect. I've figured out a lot on my own, but it would have been so much easier had I started with some base knowledge. For instance, I experienced paralysis in my arms and legs for over 2 weeks. The doctors (including a highly-respected Stanford-associated cardiologist) considered this a side effect of the dehydration, but it continued happening at the same time of day for weeks. I tried changing the time of day of the meds, but still no change. This made my family and doctors assume it was panic attacks, so they sent me to a psychologist.

I now know from my documentation and my husband's research that I was experiencing an effect from too much potassium by the end of the day. It's such a delicate balance of knowing when I need sodium (I stay at 1000 mg per day or less), when I need potassium, and when I need more water (I now number them, and don't drink from any other source). The sodium and potassium have to be evenly spread out throughout the day, and low potassium causes me crippling nausea. The doctors around here are saying that they're learning from me, and hope to use me as a resource when they come across this diagnosis again. I'm really motivated to help others with this and need the support of those who are also going through it.

My name is Jennifer. Please let me know if you're interested in chatting more directly. I will join the group because the newer postings are more similar to my experience. For instance, there's a posing from someone who has recovered, but is pregnant again. I really feel for her fear because I've been told that a second pregnancy could kill me. My husband and I always wanted 2 kids, but are now focused on getting through this, then possibly adopting in the future.

I hope this email makes you feel less alone, because you gave me that gift.

Best of wishes,
Jennifer

Night Before 3-month Echo

2007-10-21T14:08:00.001-07:00

Seem to have lost posts from last several days. Won't worry about that now. Now I'm feeling like I should be writing before I get my echocardiogram result tomorrow. Don't have energy to write, but know that my perspective will change. From not knowing to knowing. Once I have heard the result, I won't be able to pretend I didn't. I don't want to be emotionally affected, but I will be. I'm human.

I realize that the result doesn't mean anything. If the EF percent goes up, that's good, but not an accurate reading of long term result. If it goes down, they will get me on a list at Stanford, but not proceed with any type of surgery. January is the date that will count.

In the meantime I need guidance on how to manage my fluids. The PA (physician's assistant) says that how my weight fluctuates during the day doesn't matter, the doctor is looking from morning weight to morning weight. I'm living in my body and listening to it carefully. I know that when my weight goes up during the day with no explanation other than fluids, my mind gets foggy. When I hit 136 lbs., I can feel the fog coming as my belly bloats into what looks like a pregnancy state.

Josh and I agree that tomorrow is the time to ask what more can be done to help me manage the day-to-day symptoms. What can they do about fluids? Are they up to date on research? Josh found research that shows a drug that can be given to PPCM survivors to avoid heart failure during a second pregnancy. I know I can't think about that now. I have to get through this. Jack is enough--I'm happy with one great child. I don't want to compromise his childhood with a healthy mother by being to eager to go through this all over again. Josh knows this and is not pressuring me. He just wants to see if cardiologist is up to date on the latest treatments. I'm okay with using that as a line of questioning. Depending on what is said tomorrow, we may want a second opinion.

Trying to Deal

2007-10-21T13:31:00.000-07:00

JENN'S RANDOM THOUGHTS - OCTOBER 15, 2007

1) I'm winding down and turned on the TV again. Literally, the show was "Endlessly Beating--the Mysterious Human Heart," a journey into the human heart. The clip showed a woman saying, "I want to survive this, whether it's my own heart or a transplant." This is how I feel, so I'm recording it. The ads supporting the show are "Mars, makers of chocolate worldwide." Weird, huh? Help your heart, eat chocolate. It goes on to show how a transplant works.

The narrative says, "The heart is a pump, but it's the most important pump there is. But what if the muscle is damaged?' I'm not going to watch it now, but I know I won't find it disturbing. It helps me be more educated about my condition. I've also always been a donor, so I'm okay with the concept of a transplant if necessary. Many people have transplants and go on to live a productive, normal life. I'm only mentally preparing because I don't want to go into shock like I did when this first happened. I know my heart is "as bad as heart failure gets." I also know that my doctor has not been able to find a single person with my situation who is alive. The only one he could think of died of cardiac arrest in Hawaii. We canceled and missed our Kauai trip recently, but rescheduled it for next September.

2) I'm used to really taking care of myself. I have always had so much wrong with my body, that I really appreciate the healthy parts and am disciplined in taking care of them. For example, my teeth. I've been lucky enough to not have problems with my teeth in adulthood. So I used to floss daily and do 2 full cycles of my Sonicare toothbrush, then rinse with Lysterine. But during pregnancy, I couldn't have my teeth ex-rayed. I wanted to take care of that after Jack was born and get my regular cleaning and checkup. The dentist, believe it or not, says flossing and getting a cleaning would be bad for my heart. The bacteria that may get inflamed isn't worth the risk. Another example is that I've been on the Pill for years to control the endometriosis and polycistic ovaries, and other gyno-related crap. But my heart is the priority, so I have to just deal with it if those things are getting worse (the Pill could risk bloodclots with my heart failure). I'm due for an eye exam, but frankly that's the least of my worries.

3) I realized today that I'm old enough to be my caretaker/mother's helper's mother, but I'm young enough to be a new mom myself. Tons of emotions go with that on a day-to-day basis. When I'm secure, I'm not threatened by her looks, young fit body, her energy, nor how all the husbands in my neighborhood consider her the "hot nanny." Instead, I see someone I like being around who's helping my family tremendously, and I welcome both learning from her and her points of view, but also teaching her things I know through age and experience. I'm comfortable with being 38, but sometimes feel 85 based on my heart and energy.

4) Things are going well between Josh and me, but the pressure to be perfect in my every step is huge. I know he and my parents are tired, so I act as "up" as I can, take care of Jack when I can, and monitor every symptom to keep myself going. Writing or talking is my only outlet to reality. Everyone's used to me being strong. I don't feel strong. I feel like I'm juggling things in a controlled way. Can't make mistakes. If I'm not on top of how I'm physically feeling, no one can tell me what to do. I'm learning, though, so that's progress. And my family is giving me some space however they can to take care of myself.

Listening to my Gut
The inner monologue deep down leads me to clarity if I listen to it. When I really listen, I know what to do. Sometimes it comes out when I take a long shower. Sometimes when I force myself to ride through extraordinary physical symptoms. Last night I realized that I have an incredible fear of weakness, both physically and emotionally. The truth is that I have a great sense of humor about it all, find joy in most things, and am reaching out to others who can help me with the tough stuff. My small group of writer friends is part of that and I really appreciate it. Their
encouraging words help a lot. Would love to see any of them when they have time, but just knowing them is a bigger gift than I can express.

I'm incredibly motivated to do the necessary hard work ahead with writing. I'm not depressed. Not bored. Very optimistic and appreciative of the countless gifts and joy in my life. I find joy in most things, so don't need to specifically list them out in this email. Following "Right speech, right thought, and right intent" of Eastern/Buddist philosophy is useful now. I love life and the people in my life. My issue now is navigating the fine line of valid physical distress and unnecessary panic.

Through years of chronic illness, I am used to being under physical duress. I learned through mindfulness to acknowledge, and co-exist with physical ailments. Now I'm learning a new level of dealing with physical elements. I'm mindful most of the time lately. I see it as my primary tool to stay alive and keep my family together.

My counselor asked me last week: How can I be okay with what's happening to my body and brain. How can I get so overhydrated and/or dehydrated and not know it? Here's the answer:
Last night I came to an important discovery with the balance of mind and body: THE PHYSICAL SYMPTOM COMES FIRST. WHEN I'M AT MY LOWEST PHYSICALLY, I REACT WITH PANIC. FEAR OF WEAKNESS COMES OUT AS BITCHINESS. When I feel it, and it's not something I've experienced before, I'm capable of relaxing through it. In the process of heart failure, I've relaxed to the point of not recognizing VERY IMPORTANT PHYSICAL SYMPTOMS. Now if I feel something similar to what has preceded life-threatening or mind-threatening symptoms, I get fearful. Sometimes to the point of panic. My panic shows itself as pouting, crying "wolf." I understand this. This last week I've stayed very even-keeled except for one moment that got me panicked. I figured out what was happening and addressed it with a heart med. Sometimes when I need a heart med is when I get foggy in my mind and forget to take it.

I know any damage done to my heart is already done. I'm confident I'll live. However, keeping such a tight reign on my actions/reactions is stressful. If I get into a certain level of disagreement, I get scared and my husband reacts with his own anger or fear.

Josh & I are very familiar with mindfulness and are open to it as a tool. Here is some background on my experience with it. over the last 2 years:

We took the John Kabitz-Zin Mindfulness Stress Reduction program at O'Connor hospital with Bob Stahl a few years ago. We completed the program, and both found the skills we learned useful. One of the tools/concepts I took away from the class was how to co-exist with pain or chronic illness. It made sense to embrace pain/illness as an enemy in marshal arts. You lean into it, accept it, feel it, but don't have to like it. With my extensive acupuncture and mindful physical therapy and massage, I understand these lessons. I know the body has memory. If you fear a certain pain, simply feeling it again can trigger panic. I learned to not panic over my usual pain. This includes IC, endometriosis, PCO, trigger point pain if my muscles, etc.

When I got pregnant the first time, I embraced it with complete joy. Some fear, but nothing compared to the joy. I later miscarried ( April 2006) and was devastated. The loss reinforced my fear of pregnancy and fear of letting go of fear. Following my miscarriage, I caught a severe bronchial infection in the hospital that lasted for several months. I took that time to heal, recover from depression (it was strong), and get in shape for trying again. To do this I practiced mindfulness, yoga, walking outdoors, and eating very healthy. I also continued to trust wonderful OB, but didn't completely let go of the fear until after I got positive results from the amnio.

Before the amnio is when my cousin miscarried pretty far along which was very upsetting. Her baby and mine we due 2 days apart. Without the "high risk" stamped on my pregnancy, I wouldn't have been asked to go through such intensive testing leading up to the 5-month mark. My cousin wasn't "high risk" so she found out about her loss late, after the baby had probably died much earlier. Knowing my baby was most likely fine, I grieved her loss and conquered the fear of my son (we now knew it was a boy) having severe health problems.

During my pregnancy I truly did love things I had feared so much before. The feeling of another being growing inside me (this seemed so alien-like before). I got to know my son's patterns and played with his kicks, recognized when he had hiccups (very frequent), and looked forward to the day I could hold him in my arms and look into his eyes. I even regularly sang to him in the shower with my own tweaked lyrics to certain songs, like Elton John's "Your Song" (I changed "yours are the most beautiful eyes I've ever SEEN" to "most beautiful eyes I'll EVER SEE." My other favorite was John Lenon 's "Beautiful Boy." All I changed on that one was the the boy's name in the last line.

When I was far enough along to judge the baby's birth weight and size, My OB brought up the idea of scheduling a C-Section one week before I was due. He said his wife had had 5 of these surgeries and been fine. He couldn't legally advise me one way or the other, but he told me why a C-Section could be safer for the baby, safer for me. I trusted him and scheduled the surgical delivery. I never went into labor, and I didn't know it then, but this probably saved my life. The heart failure I'm experiencing now would have most likely killed me during labor. I also believe that if I didn't already practice some mindfulness and have a strong mind/body connection, I would not have conceived a second time, nor would I have avoided early labor from some major stress in my last 2 weeks of pregnancy.

Email to Writers

2007-10-18T16:17:00.000-07:00

Hi Fellow Writers,

This is a rambling email that's a composition of various attempts to write in the last few weeks. Since I've been in workshops with you, worked with you, and I consider you friends, I'm sending it without editing. It drops off mid-sentence, but it's the best I can do in my current physical state. Please consider this a very disjointed blog. Only read and respond if/when you have the time and energy. As you could probably guess, simply writing to you is in itself helping me. I've started emails to each of you and not hit "send" because I can't finish. I'm trusting that hitting send now is okay. Because tomorrow my son will be up, I'll have a doctor's appointment, and I won't have the mindset to write. But I LOVE hearing from you anytime. I always get the message or emails, and respond when I can.

I've seen and spoken with several of you, and heard from others through email or cards or messages and prayers to my parents. Each of them has helped me, and seeing Barbara, Christine, and Shelly has convinced me that talking, laughing, and writing is how I can get through this. Much like in "Stranger Than Fiction," the material is too good. They've also assured me that what I write doesn't have to make sense. Please just know that if I were talking with you in person, I'd be laughing at the dark humor. It really is funny if you hear me talk about it.

Thank you for everything,
Jenn

Ellen, my teacher & friend, I think in scenes. You would like how I think. My memory has completely disappeared during this process, and flashed back in fast forward. The Bourne Ultimatum triggered the memory to recover. I don't know if it was that I could identify with the need to know what I'd been forgetting, the need to communicate or what, but my memory fast forwarded from your book release party (when the heart failure had already begun taking its toll, I just didn't know it yet) to a few weeks ago. I followed the plot, plus thought in dozens of points of view. Some of the below refers to that. Also, the date you proposed to have lunch works great. I have to make it through an echocardiogram first, but am confident I'll be okay, so I'm saying yes to plans. But to see me, there's no need to bring food or make it formal. I have a mother's helper here during the week until 2:00, and Josh and my parents take the other shifts. I am assured that I can take time out to see/talk to friends.

I also have tons of inner monologue that is funny when I get it out, but destructive if I don't. I haven't put it in writing because it's the details, the compulsions, the insecurities that most people (including me) don't want to admit to publicly. But I know that's what makes the best writing. Lolly, some of my thoughts remind me of your writing (we refer to your style of creating humor in difficult situations Lollyisms in class). I'm thinking and feeling so much chatter, but when I can express it to other writers, they get the joke. I can avoid an argument with my family if I turn it into a joke with a writer. :-)

Thanks to amazing support from my family, neighborhood, and friends, I'm getting the right food and help with Jack and it's working. What I need now is moral support and laughter. October 22 is a date-worthy hurdle, so if you're the type to pray, any religion, my family could use it between now and then. January is the next big date for my heart (literally) to face.

I'm not sure who has heard what about my situation, but I can say it's definitely good material for a memoir or comedy. I've tried to compose emails to various people who have asked what's happening, but I usually run out of steam long before I can email or call one person in a way that makes sense. I've decided I don't have to make sense. I just have to stay alive and laugh and keep connected to my friends. When I'm up to talking, I love to talk to other writers or overachievers who understand my way of thinking. In fact, if there was an "overachievers anonymous" or "overcommunicators anonymous," I'd be writing to them. I also love hearing from my friends any time. If I can't talk at that moment, I still get the message and it helps more than you can imagine.

I'm looking for a way to get through what's happening to my brain (and body, but brain is where writers can help) due to a combo of hydration imbalance and heart failure itself. I have a card that says, "I can be changed by what happens to me. I will not be reduced by it," taped to my mirror. That is my goal. I'm confident I'll make it through this alive, I just have to navigate the process. I don't want to die of something stupid like too much water or being dehydrated (have done both without seeing it coming).

Some of the below was referring to scuba diving, meant for my Navy Seal friend to help me with. Some of it was for a friend who's experienced similar symptoms. I didn't end up sending the email to either, but thinking through the questions helped me find the answers.

In the last 2 weeks I've been told I was near coma due to being drunk on water, then got balanced, then collapsed from dehydration, then back to too much fluid again. It seems like managing the hydration would be easy, but it's not. I was already in good shape and followed the "heart healthy" instructions before all this. In diver's terms, I was more like a scuba instructor than a tourist. No Navy Seal, but definitely advanced. I knew my body, my mind, and what felt right, but I've always been the type to push myself. Knowing what's pushing myself and what feels right is a difficult juggling act.

I didn't realize it, at the time, but I pushed myself last Saturday. I was like a dog needing to be walked, so I asked Josh to take my on some of my favorite nature walks. To my normal standards, calling it hiking was a stretch. More like a lot of walking on some uneven ground that included a few hills. it felt great.... the best I've felt in months. Greg, in diver's language it was like being at 130 feet and thinking you could stay down longer. I felt fine that night. The next day, I was very slow physically and mentally. I tried to read the morning paper but then found I couldn't speak about what I had read. My vocabulary dropped rapidly. I was able to tell Josh that I was losing words. Knowing I was losing comprehension quickly, I cut clippings from the paper and taped them to my records I keep for tracking meds, food, water.

One of the clippings was a title of an Alan Alda book titled, "Things I overheard while talking to myself." I liked the title because that's how I felt. I also clipped an article about a memoir of a man who had a labotomy. I crossed out what didn't apply, and drew arrows to the pieces that did. I tried to relax through the whole episode, as we're all (my family and I) getting used to the bizarre mind games that come with my condition. Needing to be outside, I laid in the sun on my "no gravity chair" like George's.

Later that day collapsed from dehydration. My mind felt sane, but I couldn't communicate. I could remember everything, but couldn't speak. All I could say was to call the cardiologist and to look in my notebook. I felt like I needed to be in the hospital, but they said I was dehydrated and asked Josh to pump me full of water and Gatorade.

Earlier I had felt like I couldn't think or remember things. Now I'm on bedrest because I'm over-hydrated again. We've followed precise instructions and counted water bottles, sodium, etc. I have to find a way to read my body's signals better just to get through the symptoms. My question for Greg is with all your training, how do you master nitrogen narcosis? If you have no chart and no recompression chamber, how do you read your own body's signals to know if your judgement is altered?

Over-hydration feels insane and so does dehydration. The over-hydration cause severe memory loss (the entire summer) plus daily short-term memory loss (I needed post its everywhere). I wrote things, then saw my own notes and had no memory of writing them. As I started to get the balance right, my memory flooded back in images and flashes. If I saw a note or a scene in a movie or an object...anything that could bring out memory it would start the flood of memory and I started filling in the gaps. Memory loss and being disoriented are "normal" signs of heart failure, so Josh and I have to watch the symptoms carefully to monitor if something else is going on.

George, I'm, pretty sure you told me of something similar with your heart surgery. Is that correct? How did you and Pat get through it?

FYI...any damage done to my heart happened already. Here's how I can explain what's happening:

My son is the most healing person in my life, yet medical eyes see the pregnancy itself as the cause of my now literally broken heart. How's that for irony?
The only solution is to survive this process. Any damage done to my heart has already happened, and there's nothing I can do about it. Only time will tell what's next. Much like Will Farrell in "Stranger Than Fiction," I don't have the narrative, and it's all much far too bizarre to make up. I have to be my own guide in finding a narrative that's already been written. The cardiologist says that the process will be like "watching your hair grow." He can't know if I will get better until the 6-month mark after starting treatment. He can't even check for physical signs until 3 months after diagnosis. This will happen October 22. He says it can be emotionally tricky because if he sees progress (measured by my heart's EF percentage), it doesn't mean that it will continue to improve. It will tell him how to adjust the treatment and/or whether to put me on Stanford's heart donor list). He told my family and me that my level of heart failure is as bad as it gets. However, considering my already non-smoker, low-sodium, high water diet, and that I live in Cardiology Research Wonderland, my odds of survival without surgery are much higher than the worldwide stats of "70 percent dead within 5 years." I personally think I will come out of this fine, but I have get through day-to-day extreme physical symptoms and the mind games that come with the delicate balance of hydration.

Journal-type entries
Weight: 136
I'm on bottle #7. Now back to overly hydrated. Will take HTCZ tomorrow plus my 3 lasix. My eyes are red. I'm so tired. I look in the mirror at my red squinting eyes and bloated abdomen and know I need to go to bed. Can't handle this balancing act. Drunk on too much water. Now sick from too much fluid again. After Sunday's collapse, I have been getting the same symptoms. Driving me mad. I feel trapped. Like a scuba diver with nitrogen narcosis at 130 feet not knowing if she's going to need a re-compression chamber to bounce back. Hearing from friends and having them as a sounding board is so important to me now. I'll communicate with writing when I can.

For the 3rd night in a row I've had same symptoms at same time of day. First my dehydration collapse Sunday. Want to write about Sunday but don't have the energy. I wrote the below instead and knew I needed to stop. Now it seems I'm holding onto too much fluid now. 3 pounds of fluid can come off with the right balance of food water and meds. But I'm on bedrest for dehydration. I feel like a scuba diver at 100 feet deep. Judgement is off, but I'm okay. Diving to 130 would give me nitrogen narcosis which makes you lose

Almost midnight. Need to stop and rest.

Weight 132, I'm on bottle #5 and ate salmon and veggies. Made it through the 4 - 6PM crash. Spacing my diuretics throughout day instead of AM and noon. Cardiologist says it takes healthy people weeks to recover from dehydration. It's only been days and I'm handling it better. Have to stay focused on what works.

MEMOIR OF HEART FAILURE

I was fit and ate/drank very healthy before heart failure--I would have passed Dr Oz's heart healthy diet and I exercised frequently (no athlete, but in good shape). When the pregnancy nazis (the over 35-genetic test takers) finished probing me, my blood showed age 35 although I was coming up on my 38th birthday. I took that as a great sign that I could finally stop worrying about my pregnancy. I had the Good HouseKeeping Seal of Approval. Now I'm in the middle of heart failure caused by my pregnancy. My son is the most healing person in my life, yet medical eyes see the pregnancy itself as the cause of my now literally broken heart. How's that for irony?

The only solution is to survive this process. Any damage done to my heart has already happened, and there's nothing I can do about it. Only time will tell what's next. Much like Will Farrell in "Stranger Than Fiction," I don't have the narrative, and it's all much far too bizarre to make up. I have to be my own guide in finding a narrative that's already been written. The cardiologist says that the process will be like "watching your hair grow." He can't know if I will get better until the 6-month mark after starting treatment. He can't even check for physical signs until 3 months after diagnosis. This will happen October 22.

He says it can be emotionally tricky because if he sees progress (measured by my heart's EF percentage), it doesn't mean that it will continue to improve. It will tell him how to adjust the treatment and/or whether to put me on Stanford's heart donor list). He told my family and me that my level of heart failure is as bad as it gets. However, considering my already non-smoker, low-sodium, high water diet, and that I live in Cardiology Research Heaven, my odds of survival without surgery are much higher than the worldwide stats of "70 percent dead within 5 years." I personally think I will come out of this fine, but I have get through day-to-day extreme physical symptoms and the mind games that come with the delicate balance of hydration.

When I was first diagnosed, I was carrying an extra 25 pounds of fluid that came on suddenly after the birth of my son. I had attributed the weight and lethargy to breast feeding every 2 hours, not getting sleep, having a C-section, etc. It's when it suddenly jumped to the extreme that my OB sent me in for an ultrasound. We thought there may be something wrong with my incision or I might have a cyst. No big deal for me with my lifelong tolerance to difficult but non-life-threatening medical issues. When the results came back, I was told to get the ER immediately and tell them that I had "significant excess fluid in my abdomen."

INSERT ER SCENE

It's now been almost 3 months of living with this day in and day out. It's hard on me, hard on my family. The worst parts are the mindgames that come with excess fluid or dehydration. In the last few weeks I have been both drunk on water and collapsed from too little. Both scenarios cause insanity and potential coma. A few weeks ago my memory started to disappear. I would forget conversations I had 10 minutes prior. I found notes I had written, documents I signed, yet had no recollection of doing it. This is considered a "normal" symptom of heart failure. It took the extreme to alert the cardiologist that something else was happening. He measured my sodium levels and found that I had diluted the necessary sodium to near coma. My OB agreed that I had gone into dangerous territory with too much water and was lucky not to be in a coma. Yet leading up to that test, everyone in the cardiologist's office said to increase my water intake. No one thought to ask me how much I had already been drinking.

After that drama, we learned to number my water bottles, eat and drink to precise measurements (still very low sodium diet necessary, but limit the fluids). We factored in anything that could melt as fluid (fruit smoothies, ice cream, water levels of various fruit). During this process, I lost memory of most of the summer within days. I painted the house with post-it to myself to eat, drink, take timed meds, etc. I was told to weigh myself every 2 hours and notify the cardiologist if my weight jumped more than 5 pounds in a one week or 4 lbs in 4 hours. My family and I took this very seriously and I got the support I needed eat and drink properly. But I had (and still do) have to communicate my symptoms and be my mind's own translator to get me through the insanity of memory loss.

I had a breakthrough 2 weeks ago when I was finally able to leave the house and see a movie. I chose the Bourne Ultimatum. I had gotten used to needing someone at my side if I left the house, so my 6'6" husband walked me safely into the theater. My eyes paused on the prime seats marked with 2 handicapped symbols, but my pride pointed me to decent seats near the isle should I need a quick exit. I was not ready to admit handicap. During and following that movie, the entire summer started to flash in front of me on fast forward. I not only absorbed the movie plot, but I became acutely aware of how fast my mind was going in multiple points of view. The writer in me was entertained but still analytical scene by scene. Images would flash and I'd have questions and opinions on each one. From the mother in me, "How could that woman bring 3 young children to this movie?" as the kids would run in the isles counting and doing ABCs during the action sequences and cry, "Mommy" during the few quiet but disturbingly vivid quiet scenes. The mom in me also empathized with needing to get out. I'd heard of mommy matinees at Oakridge Mall where kids could run free. Knowing my baby was safe with his grandparents, I silently judged her movie choice.

I didn't think about the effect of the imagery on the children before the movie started. In fact, I enabled a closer view for those kids. The mommy had started to sit behind u while my husband was getting himself popcorn (something I wasn't allowed. But Raisinettes were low sodium so I was happy). I noted height of the 4 year old and moved my Always considerate, I moved Josh's seat so he wouldn't block the boy's view.

I had been making progress in handling the symptoms and had become a dog desperately needing to be walked. I asked my husband to take me out beyond the six streets away I had been able to go up to last weekend. I thought I had factored in everything, but I didn't account for the sun.

My husband surprised me with nature walk locations he knew I loved. Savannah Channel Redwood Grove where we considered getting married, but switched to Tahoe at the last minute. Saratoga Springs park. The memories flooded in and I expressed them. We had normal conversations. I had a wonderful time and felt better than I have in months. I was confident that