I started a new blog. It is a group blog written by young women with valve issues who want to have children or who have had complicated pregnancies as a result of their wonky valves.
This is the blog that I wish I had found back when I had a leaky mitral valve that wouldn't support a pregnancy. And this is the blog that I wish I had found back when I was making my valve choice. And this is the valve that I wish I had found back when I was nervous that we wouldn't be allowed to adopt because of my mechanical valve.
I think we're up to 8 authors, but by next week there will be more. I'm so excited!! My goal is that this blog will one day have hundreds of Girl Valves sharing their stories.
I want to stress that this new blog is not just about f'd up valves, it is also about the desire to become a mother. Maybe I'm wrong, but I think that the infertile community can relate to a lot of these women's stories too. These are women who have had miscarriages, women who have had difficulty conceiving, women who have had incredibly complicated pregnancies, women who will never be allowed to experience pregnancy, women who are considering surrogacy, and women who are going to adopt.
I called in my monthly coumadin prescription. The prescription that is supposed to have 2 more refills on it. The pills I take to avoid blood clots forming on my valve. The pills that I let get down to one dose before I call in for a new batch.
What I thought was going to be a simple automated request for my damn pills turned a minor drama with the pill lady cheerily telling me that I don't have any more pills coming to me. That I'll have to wait until Tuesday for them to contact my doctor. Tuesday! What are you talking about, Pill Lady?
I freak out. I actually have to choke back tears, because I don't want a blood clot, you know? So I tell the pill lady, "But I need my pills. I need them for my artificial valve. Blood Clots! I can't wait until Tuesday! And I know I have more pills coming to me."
Pill Lady: "Yeah, okay. You don't. But, I can lend you some to get you through the weekend."
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?
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.
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.
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.
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.
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. Mollie, I too 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.