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Wednesday, May 16, 2012

Missed, But Wanted Opportunities, Part Two

So...I told you that I found a woman with pulmonary hypertension who had children and didn't die .

But there were several differences, such as she had two babies, one before and one after diagnosis. She was younger than me at the time of the birth of both of her girls; I'm already what they consider advanced maternal age; and she is not as sick as me, she's about half as sick . (There's a classification rating from 1-4, she's about a 2, and yours truly bounces between a 3 and a 4.) And, oh yeah, she was married. Guess I should figure out which bridge comes first. I know, I know, women have babies by themselves all the time. Women raise babies by themselves all the time . But I am not that girl. I am not the girl who can look at a catalog of genetic traits and accomplishments and go for it, risking my life to be pregnant, and bring a high risk baby into the world, and then have all the resources to raise said child to adulthood . No offense to those women who are able to do that, but I have to consider the welfare of the child should I succumb. I've had several spectacular women volunteer to be my surrogate, tell me 'hurry up and find the guy' so they can give me my baby...but, my last name is still the one I was born with .

Its an interesting topic to bring up when dating, at least since I was diagnosed. I've dated a couple of really great guys, but hated that I couldn't bear them children. Its a devastating thing. Its one thing to choose not to have children because you don't want to, but when the option is taken from you its different.

Its like that woman in the bible, the aged Sarah, who 'laughed within herself' when she was told she was going to have a son in her old age. I can relate to her. I'm sure she was crying inside too. Maybe I lack in faith, maybe I believe the odds are against me . Actually, I KNOW the odds are against me. Its like what I told my cute sister-in-law: I'm sitting at a poker table, and everyone's hand is dealt, and I've got UNO cards.

Anyone who's known me for any amount of time knows the only thing I've ever wanted to be was to be a mama . Career-wise, I was all over the board . When I was around the ripe age of 3, for some reason, I wanted to be a sumo wrestler. In elementary school, my love of french fries had me thinking about working for McDonald's. Or maybe a pilot. During middle school, I thought it would be cool to know a bunch of languages and be some kind of professor, but secretly, I wanted to learn more about martial arts because our Japanese instructor was a Kendo master. In high school, I was determined to be a nurse . Or an American Gladiator. It didn't matter, I would only be doing said career until I had kids.

 I always wanted my own kids. I used to read parenting books and magazines when I was in elementary school. I started babysitting young, I became an aunt when I was almost twelve. I practiced being a mommy as often as I could, and was that girl who always asked to hold the baby. And I got pretty good at it; nannying was almost always a side job if not my main job. But its always been my favorite job, even though at the end of the day, I leave the babies where I found them, and can go home to sleep mostly uninterrupted, and never had to be back if it were my choice. But I did go back . As much as I could, I went back .

I dreaded this past Sunday at church. Even though I wanted to go, its the one day of the year that the 12-year old boys will hand all the moms some kind of flower or candy, and a 12-year old boy saw childless me and there was that hesitation of, "Am I supposed to give her one too?" Its not that I actually want the flowers or candy, (well maybe I did want the chocolate, who am I kidding?), I want the baby grabbing the candy from me . Or at least the man who would've wanted to have one with me .  Even though the hesitation was slight, I would have rather avoided both of us feeling even the tiniest bit uncomfortable .  Too late . 

But the flowers were beautiful, and the chocolate hit the spot.

I guess I'll just keep getting my baby fix borrowing other people's children. I like the smaller ones, mostly because they don't try as hard to get away. Because I'm like one of the kids I take care of -- he used to yell, "I NEED MY SNUGGLE TIME!"  Same here, kid .

Moms, remember this when it gets hard, I would gladly switch with you .

I like to think I would have been a good mama .

Sunday, May 13, 2012

Missed, But Wanted Opportunities

Its Nurse's Week, and this week ends with Mother's Day. Two of my top loves/hates.

I love the profession of nursing. I love the nurses I work with. I love the nurses that help keep me alive .

And I love that there's a day of tribute to moms.

I love my mother who is a nurse. Sorry, to all of the other nurses, as many that I adore, she wins the title of Favorite .

And I hate that I've had to make some nurses run. I hate that I keep giving them job security.

I love Mother's Day because I have the best mom, but I hate that I am no one's mother. And the odds are pretty much against me becoming a mother.

I remember when I was diagnosed and was kind of bummed that I might not live . But when I discovered that my condition makes it nearly impossible to carry my own baby, much less babies, I died inside .

THAT was when I felt the most devastated about having pulmonary hypertension. At the first conference I attended about PH, I had a ton of questions, but I wanted to know numbers. What were the success rates of women with PH who successfully got pregnant? What percentage of them carried their babies full term? Were there any babies born to mamas who had taken the medications required for us to breathe that didn't harm the child, since they're almost all proven to cause damage? The competitor in me was somewhat encouraged when I heard there were a few women who carried babies to term. What was discouraging was that nearly all of the numbers and stories afterwards included what I didn't want to hear: all of the women died within weeks of delivery.

Even so, the optimist in me wanted numbers proving that those stories were absolutes. I wanted to hear that there was no way, just so I could take it as the ultimate triple-dog-dare, and then eventually prove them all wrong. I just needed to find one woman who beat these nearly impossible odds.

And then I found one.

Monday, May 7, 2012

Other People's Parts

So...I'm not sure if I should get a new pair of lungs.

I got a phone call last week, and I've been going back and forth between stewed and relieved. It was from the surgery scheduler from the hospital I would be checking into, calling about scheduling a consultation for a double lung transplant.

My insurance doesn't want to pay for the initial consultation or follow-ups. Should I even pretend to be surprised that insurance doesn't want to pay for something? Don't get me wrong, I have really great health insurance, better than most plans out there. But there aren't too many surgeons who want to perform surgery on me, since I'm not exactly the perfect candidate for anything harder than ear piercings. I'm classified as an ASA 4E, which in non-medical terms means that I should only undergo surgery in a dire emergency. An ASA 6 patient, for comparison, is someone who is brain dead, and they're only performing surgery to retrieve organs for donation. What this all means is that there are lung transplant surgeons who wouldn't want to operate on me. There's a new doctor in Phoenix who moved from California who specializes in exactly what I would need, but he's out of my network. And there really isn't a surgeon in my network who is as good a match.

It's probably going to be a fight to get approved, and I'm not sure I want to fight. I agreed to visit with a different doctor because my pulmonologist said he's the best I could get. This new doctor is pretty much awesome according to my pulmonologist, and he wants me to understand all of my options. I just don't think I have this kind of drive anymore. Recovering from surgery is so hard. I had bone spurs removed from my feet last summer, and what was supposed to be a two week recovery turned into four months of foot braces, a follow up surgery to clean out the wound again, and a wound vacuum for a month. It's frightening to think what kind of recovery process would be for me, Miss Worst Case Scenario. This isn't even starting to think about the cost, and who would take care of me once I was checked out of the hospital, and then there's always the chance of organ rejection. But there would be the bonus of not having to have my remodulin pump.

And there would be an awesome scar.

For now, I am relieved to not have that appointment that was supposed to be next week. I don't like those reminders of me being sick. I was glad to take a long weekend in Rocky Point and play not sick.  Even though I got sunburned and already miss Alejandro, the mango man.   

But I guess I'll call my doctor and let him know so he can fight the insurance company. Just in case some lungs become available.

By the way, there really wasn't any more story to Alejandro, other than the fact that he is a mango salesman who walks to you on the beach, puts a mango on a stick, peels it, slices it so that it turns into somewhat of a flower so its easy to eat, and puts lime, salt, and some spices on the mango.  No strange connotation to go with.  But really, when you're just hanging on the beach, its a great thing that people come to you and give you delicious fruit.  My favorite fruit.  EVER.  And food as well all know is much better when served on a stick.  Pretty much every time!  Like corndogs, corn on the cob is easier to eat, kabobs, you know, stuff like that.

Mangos on a stick, well, that's just genius.  Adding lime and chile and tajin, and its a reason to stay alive.  =)