The valve choice was without a doubt the most difficult decision I've ever had to make. It sucks because there is not a right or wrong answer to the valve choice. For me, the valve choice revolved around children. Did I want to do pregnancy?
To make a long story short, I chose the mechanical valve. My plan was to adopt first, and to do pregnancy later on. However, I woke up from my surgery and the first thing I thought was, "Nope, pregnancy is not for me." Valve replacement is a tough surgery, and all I knew was that I never wanted to risk having to do it again. Plus, I'm a baby and knowing that I would have to give myself shots twice a day during the pregnancy scares the hell out of me. Pitiful, I know.
Anyway, the best way for me to explain what how I came to my valve choice is to share my journal entries from the time that I was agonizing over what to do. It is long, so I won't blame you if you skip it. The entry titled "The Bionic Choice" is where I finally made up my mind, if you want to skip to the end.
Also, I apologize that the entries are not easier to read. I gave up on trying to make the titles and dates of the entries show up in bold, so it looks like it all runs together. When I'm feeling more patient, I'll try to fix this.
January 06, 2004 I don't have a clue.
The adoption agency we have been leaning towards called me back today. Because of all this heart surgery stuff, I have been concerned about my chance to adopt, but she assured me that it would not be a problem. I had to check, just to be sure. Carrie is right, as long as my social worker agrees, we will be fine. And as long as my cardiologist and surgeon verify that I am okay after, then there is no reason why China would reject us.
I still don't know what to do. But I did find an online support group for people who are preparing to go through or have gone through valve replacement surgery. It is so nice to talk to people who have gone through this surgery already, people that have had to make same valve choice I have, and women who have dealt with what I'm what I'm dealing with. I've learned a lot. But I still don't know.
Mechanical or tissue? Tissue or Mechanical? Dude, I have a hard time choosing what to eat at a restaurant. How am I going to figure this shit out?
January 07, 2004 When You Wish Upon A Star...
I have made a decision. I'm going mechancial. You might ask, gee, Michele, why the mechanical valve? Two words, Lindsay Wagner. I can finally acheive my childhood dream of being cool like the Bionic Woman. Kids, dreams really do come true!
As far as the issue that some of y'all know I have been struggling with... before I was given this choice, I had to come to terms with a lot of stuff. I don't know if I can deal with dealing with all of that all over again. I feel that I was already on a certain path, a path that I am okay with. And now I've come to this fork in the road, where I've been given a choice. Had this choice been given to me back in May of 2002, I would have gone Bovine. Moo. But, I'm a different person now. Becoming a parent is much more important to me than I how I get there. Though I do admit to enjoying the possibility I was presented with. I once again have to say goodbye to that possiblility.
I want to avoid a second heart surgery. They say the risks are greater the second time around. And I'm afraid that I would come out of surgery with the bovine valve and know how hard heart surgery/recovery is and live in fear of having to go through it again. I am a wuss.
So, there it is. I still have to talk to my surgeon about all of this, but I don't plan on changing my mind.
Take it easy, Michele.
I've been warned against making a hasty decision. So, officially, I've agreed to put off my decision until after I talk to my surgeon next week. Do I want a life time of coumadin? Do I?
See, I'm not so strong. The Superhuman committee has put me on probation. Lord, I always wanted to be bionic.
January 08, 2004 Shelby and Shelba
I paid a visit to my gynecologist today. I went in to talk to her about all of this bionic or bovine business. The good news is that I got to keep my pants on and I did learn more about coumadin and what taking it means for girl parts. Not only did she talk about the pros and cons of coumadin, she talked about the horrors of pregnancy, enough to scare Satan's healthy sister, Prudence, into getting her tubes tied. Yeah, Satan has a sister named Prudence, didn't you know?
She said my situation brings to mind Shelby, the character Julia Roberts played in Steel Magnolias. How pleasant. Anyway, she urged me to look into adoption and gave me the number of a OBGYN who might have more experience with high-risk homegirls like me. While she has dealt with women that have heart problems, she has never had a pregnant patient with a bovine valve. She helped, but she didn't. However, she did give me some good advice, so in the end it was worth the $20 copay.
I should let you know, in case someone thinks I'm feeling sorry for myself, that I don't see my situation as anywhere near as dire as the Shelby character. I don't need an organ translplant, just a new valve. January 15, 2004 Knowledge is Power, Sister! I saw a high risk OBGYN today. He was positive about pregnancy after valve replacement. He has handled numerous pregnancies of women who have undergone valve replacement. I can't tell you how happy I am that I made an appointment to talk with him, because I almost didn't. After I talked to my gynecologist last week, she scared me so much that I was afraid to even say "pregnancy." Which sucked because I wouldn't mind contributing at least one person to the overpopulation problem. Talking to someone who has hands on experience with the pregnancies of women who have undergone valve replacement was wonderful. He gave me a lot to think about. He told me that if I went with a mechanical valve and had an unexpected pregnancy, that it didn't mean I would have to abort the pregnancy. I would have to go off of coumadin (coumadin penetrates the placenta barrier) and give myself several daily shots of heparin. He also likes his tissue valve patients to take on a couple shots of heparin a day four weeks before attempting conception. The good news is the needle is short and tiny. Not every doctor prescribes the heparin shots, but he feels that it is best to be safe. Do I know what I'm going to do? Nope. I don't. But I no longer feel crazed about making a decision. A week ago, I was frantic trying to figure out what to do. I feel calm about all of this now. I still have my appointment with my surgeon and cardiologist to go over everything, so I'm saving my decision for after those appointments. January 21, 2004 Nothing New I haven't posted in a couple of days, mainly because I don't have much to blog about other than heart valves. I walk around muttering about cow valves and asking myself, "What should I do?" You're probably saying, "Holy Hogwarts, Michele, choose a valve and be done with it. Move on. We're ready to read about the wires that will hold your rib cage together and the scar....show us the scar!" Okay, okay, I promise, I will take pictures of my scar. And damn it to hell, I really want to make my freakin' mind up, but I just don't know what to do. I'm still counting on my surgeon offering up something that will make me see the light. I keep thinking if I just get one more opinion, read one more study, talk to one more person who has gone through the surgery that it will help me make up my mind. I've been on a quest for that one right, magical piece of information. I want to know what the right answer is. But I don't think there is one. In the end, it will have to be a leap of faith. I will go with the choice that I feel best about, close my eyes, and hurl myself into the consequences. Anyone have the name of a reliable pyschic? :) January 27, 2004 Can't Sleep I can't sleep again. If I recline....I can't breathe. I can't sleep sitting up. So, I'm forced to wait it out until my shortness of breath leaves. Ray is sleeping. The dogs are sleeping. I am not sleeping. I am tired. I heard an interesting rumor about heart surgery today. Someone told me that they position your arms behind your back during your surgery. God, I hope this is not true. I'll have to ask my surgeon about this. This next one is not a rumor. When you wake up from heart surgery, your hands will be tied to the bed. This might be true for a lot of surgeries, I'm not sure. They don't want you pulling any tubes out while you sleep. My Grandmother called today and told me that my Uncle Larry told her something weird about mechanical heart valves, but she didn't know if she should mention it to me or not. I told her to go ahead. She said that he said that someone told him that when you get a mechanical valve you (and people around you) can hear it clicking inside of you. This is true. I don't think everyone in the room can hear you clicking, but people say that if it is quiet, the clicking can be heard. What I dread most about surgery? The catheter. This really freaks me out. I've already made sure that I will be knocked out when they put it in me. God, I'd rather wear a diaper. I also dread waking up and being hooked up to the ventilator. Someone said you just have to breathe along with the machine. Jesus, please make sure they take the damn tube out of my throat as soon as I wake up. I have surgery on my mind. Can you tell? January 29, 2004 Can't Sleep Volume II Can't sleep again. I slept last night, so I'm not going to complain. Once again, husband and dogs are out cold. Lucky bastards. I'll do some chores and try it again in a bit. In case I go for the mechanical valve, I'm taking care of any dental work I might need. Coumadin complicates any procedure where blood might flow, so I'm leaving the majority of February open for my dentist. After that, I will turn my body over to my surgeon. February 02, 2004 Open Heart Surgery, Here I come! It's on, y'all. My surgery is scheduled for March 3, 2004. Have I decided on a valve? Hell no! I have up until they knock me out to make my mind up. I'm not going to wait that long to decide, but it is comforting to know that I can change my mind at the last minute. I can also push the date of the surgery back if something comes up or if I have a major freak-out before then. I feel relieved to have a date. Something to aim for, you know? If given the opportunity, I would mull over this decision for the rest of my life. Having a deadline will help. And I really want to get this over with. I want to move on. I met with my surgeon today, and I will meet with my cardiologist tomorrow. I'll talk more about what they said later. February 04, 2004 Dude, Where's My Valve Choice? I really hoped that after my heart apointments I would know which valve I want, but I don't. I just don't. My surgeon said that either valve choice is fine. When asked which one is riskier, he said that he sees equal risk with both. One means 10 years free of coumadin, but a guaranteed second surgery. The other means a lifetime on coumadin, and a lower risk of additional surgeries. He said that it comes down to whether or not I want go give pregnancy a go. My cardiologist said that he thinks I should go for the best valve out there, which is the mechanical valve. He said that as long as I am meticulous with coumadin, I will be fine. He thinks it is best to avoid additional surgeries, since the risks increase each time they cut you open. He said it comes down to whether or not becoming a mother via pregnancy is worth the risk of the tissue valve. I started to cry in my cardiologist's office. This is the first time I have cried in front of this man. Two years ago, when he told me pregnancy would send me into cardiac arrest, and that biological children were not in my future, I waited until I was out of his office to let loose with the tears, so why I couldn't hold back yesterday is a mystery. My tears were those of frustration. Frustration over how difficult this valve choice is. He mistook my tears for fear that I am going to die. He went on to tell me that my condition is fixable, that this is not a tragedy, that there are people out there who are dying of cancer and that that is what tragedy is. I know this. I know I'm not doomed, that I am lucky that I can be "fixed," that things could be much worse. But, it is my body and I'll cry if I want to. If I get the tissue valve, there is a small chance that I could go into atrial fibrillation, which means I will be on coumadin forever. The surgeon says the chance of that happening is slight. The cardiologist says that I will eventually go into to atrial fib. It might be eight years down the line, but it will happen. They both agree that the tissue valve will last 8 to 10 years. People choose the tissue valve every day, and millions of people live full lives with the mechanical valve. What do I do? What would you do? February 05, 2004 Adoption and Elective Infertility From the beginning, I have felt that this valve decision is very much like choosing between children, adopted or biological. I hate it, I hate having to choose. It drives me batty. As hard as it has been deciding whether I want to give the whole conception/pregnancy thing a try, it has been equally as difficult thinking that we might have to let adoption go. After two years of researching, and preparing ourselves for adoption, it is hard to think about saying goodbye to all of that. Does this make sense to anyone? We've decided that we are going to adopt, regardless of which valve I choose. I don't want this to be about adopted vs. biological for me. We were already headed down the adoption trail, and we don't want to stop. Finally, a decision that feels right. We came to this decision sometime last week, and I think that this is the reason why I'm sleeping better these days. I've dug all of my adoption applications back out, and even signed us up for an adoption seminar this weekend. You want to hear something funny? We were rejected by an adoption agency that said they wouldn't work with us, because I am electively infertile. (The agency said that even though my medical condition prohibits pregnancy, that I am choosing to not have kids. They said it was my choice and that pregnancy might kill me was irrelevant.) At the time I was hurt by the accustion that I had a choice on whether or not I could pop a kid out of my baby box. Back then, I didn't have a choice. Now I have the choice. It is a laugh riot that I might choose to become electively infertile. Oh, God, the chuckles that erupt from me whenever I think about this. Or when I read that post. I said something like, "If I had the choice to pop a kid out, I would." I want to say to the Michele that wrote that post, "Oh really, you think so? You wait and see, sucker, it won't be so easy." February 16, 2004 My Scary Scar Lately, the only time I get emotional about my upcoming surgery is when I think about the souvenir I will bring away with me, the scar. Knowing that in a little more than two weeks time, the skin that is now smooth and pretty is going to be the home of an ugly scar. This makes me cry. I know, it is a silly thing to mourn in the scheme of things. Some people say that they love their scar, that it is a badge. A reminder that they are alive. But I'm not sure that I'll feel loving towards my scar. My surgeon showed me where it will start and end, and lets just say that it will be between my girls....and will start above them and go just below them. He also warned me that the top of the scar will be puffy for a while. Yuck. What am I going to do when I need to wear something like this"? (It was a picture of Jennifer Aniston in a low-cut dress.) The beauty of the scar is the discomfort that it will bring others. For example, I saw a news story about a woman with an OHS scar, whose employers had the nerve to ask her to hide it. She wore the same clothes after the surgery as she did before, so it wasn't like she went out and bought sweaters to purposefully draw attention to her scar. She was told that it angered and scared people. Idiots. I'm always looking for an opportunity to scare and anger people, so maybe the scar won't be so bad after all. Hopefully, I won't take it to the extreme of flashing people and screaming, "Boo!" February 22, 2004 The Countdown Begins Less than two weeks to go until the big "O." Less than two weeks! I thought I would be nervous at this point, but I'm not. However, my surgeon's nurse, B, assures me that this will change, that I will be scared shitless. Which will be a good thing, because severe constipation is guaranteed after heart surgery. No, I'm not scared now, but I know that Nurse B is right, any day now I'll be emailing Mollie to ask if there is room for me in the moving van. Just one box, that is all I need, Mollie, I swear. Please!
I firmly believe that everything will work out for me. I'm going to come out better than when I went in. Yeah, I will require a bit more maintanance than your average girl, but that is just the way it goes. Besides, I will be heavily medicated afterwards. I'll be floating down the mellow river of intoxication. Or at least that is what I'm banking on. By the way, I have made a valve choice. *Insert Drumroll* And the winner is......the mechanical valve! Applause, cheers, more applause. Here is where the bionic valve takes a bow, and confetti falls from the sky. This has been without a freakin' doubt the most difficult decision of my life. It was tough. Soooo tough. I worried that March 3 would arrive and I still would not know what to do, that it would come down to a coin toss. But, I found enough pieces of the puzzle to help make my mind up. I actually made my decision a couple of weeks ago, but I chose not to blog about it then because the last time time I made up mind, I changed my mind the very next day.
I'll save the story for another day about how I came to decide on the mechanical valve. There is a surprise twist involved. I'll tell you about it later. I'm going to try to keep this short and sweet. Just when I had decided on the tissue valve, I got one more opinion from a different heart surgeon. He said that the best valve for me is the mechanical valve, and that I should not even consider tissue. Here is the twist, he said that there is no reason why I cannot go through a pregnancy with my bionic valve. I had been told this before, but I had never seriously considered it. The high-risk OB I saw told me the same thing, but I wasn't convinced. Even after this surgeon told me that it was possible, it still wasn't enough to make me feel comfortable about it. I thought if only I could talk to someone who has actually been through a mechanical valve pregnancy. After yet another internet search, I found the name of a woman with a mechanical valve who has given birth twice. I had to email a couple of people to get in touch with her, but next thing I knew, my phone was ringing and it was her! Her youngest child was born in December 2002. She is an amazingly kind, and generous person. She gave me what no doctor could, a first hand account. And she gave me the name of a high-risk OB that co-managed her pregnacy from another state. This doctor specializes in mechanical valve pregnancies, anticoagulation issues, etc. I felt pretty good after this phone conversation, but I had to talk to this doctor she mentiond. I called his secretary and 30 minutes later, he called me back. He gave me some info, then said he wanted me to talk to his partner, a hematologist. Less than thirty minutes later, I was on the phone with another doctor and he explained everything about mechanical valve pregnancies, he addressed all of my concerns. I was given the name of a high-risk OB in my area that they know, and was told that they would help manage my pregnancy, I ever do become pregnant. I don't know if I'm ever going to get conceive or even if I'll want to, but I am happy that I don't have to sign away the option to try pregnancy. It is an amazing feeling to know that I still have that option while going with the best valve available. I will not even think about trying to conceive until I am sure that my heart is okay. I want to make sure that my body is in the best condition it can be. And that means at least a year, mabye more after my surgery. I want to get my body back. I want to play soccer again, and do everything that I was doing before I became too tired to exercise. And we're going to adopt first, we're starting the paperwork. So, that is it. That is a brief summary of how I came to choose the mechanical valve. March 01, 2004 Anticipation Wednesday is a couple of short days away. Damn, time flies. I'm not nervous yet. Why am I not nervous yet? Why?! I am supposed to be nervous. I'm in denial. I am. If you're in denial, can you know that you are in denial? Now that I realize I am in denial, am I no longer in denial? Today is my pre-op. X-rays, bloodwork, paperwork, meetings with doctors, etc. Tonight, Ray and I are going out to eat at the restaurant of my choice. My parents and brother will get here on Tuesday afternoon. I will arrive at the hospital at 5:30 on Wednesday morning. At 5:35 am, I will change my mind. I don't want surgery. I'm fine. Really. No, really, please get that effing hospital gown away from me. At 7:30 am I will rediscover religion as they wheel me into the operating room. Maybe I shouldn't have asked the Mormons to remove my f'n name from their membership list. Perhaps I should have waited until AFTER the surgery. But that was seven years ago, and how was I to know I would need heart surgery? Okay, remember how I said I'm not nervous? As of right now, I'm nervous. Pass the Imodium, please. The Calm Before the Storm Okay, I'm not nervous anymore. After talking to the anesthesiologist I feel calm again. They gave me a spirometer and some special soap to wash with. I had several vials of blood drawn, and that was it. Easy. March 3, 2004 By this time tomorrow night, my surgery will be history. I will have a new valve, and my new life will be born. I have zero worries about my surgery, because I'm in good hands. I hope to feel like the little Shelba that I used to be. Tireless! Thank you! Thank you! Thank you! I will see you soon! Bye!! Love, February 24, 2004 The Bionic Choice
When I walk the red carpet they won't see my beautiful dress, they will see my scar. Sigh.
I dread the scar. While I have yet to meet the scar, I already hate it. I don't want the scar! I'll Be Back
Michele
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