The first in the tales of two pregnancies
These are both stories which should be added to the collection honoring those who have championed the men and women who have fought for reproductive rights. Those people, some whose names we know, and others who are unsung, have made my life richer and safer by paving the road for me. It certainly is right and good to honor the memory of Dr. George Tiller with speaking up for why abortion rights can be life-saving in so very many ways.
The story told here is of a pregnancy which was made possible because abortion was an option for me as a safety net should things go wrong. It was a very high-risk pregnancy, and my team of doctors agreed to support me in it because I understood that the likelihood was I would not come out of it with a baby. We weren't at all sure my body could withstand working 'for two,' but when I researched and queried, one of the points I asked about was if my body was not tolerating the added stress, would we be able to end the pregnancy safely. They felt we could.
I'm still here to tell it, but the story itself ends with my near death and a very wanted little being losing its grip on life and my womb as my own life force was fading fast.
H/T to annrose for this link to many difficult stories A Heartbreaking Choice
RH Reality Check has an important diary up: Late-term Abortions: Facts, Stories, and Ways to Help
I did not have a late-term abortion, but I know in my bones what goes on for women who have them: I had to force myself to imagine one before my doctors would agree to let me try my pregnancy.I've nearly always been a cardiac patient, although I wasn't aware of it until I was 11 and had a required physical to begin attending a private school. I had a very leaky valve. We don't know why - it could have been congenital or it could have been because I had rheumatic fever as a toddler when there was a small outbreak of it in New York City.
I can assure anyone who doubts, that there isn't one story of frivolous termination - it's too difficult physically and emotionally for someone to attempt such an act out of boredom... that anyone can say 'convenience' with a straight face is just cruel. Losing a baby late in a pregnancy is a hardship in and of itself, one can assume the decision to end a late term pregnancy is painful and likely made out of dire - and often life-threatening - circumstances.
Whatever the case, it was damaged enough that I needed it replaced when I was 26, although it was something of a surprise as the time time since they had predicted I wouldn't have trouble until my 60s or beyond. I have a mechanical heart valve now - actually, my first dK diary, It's a croc, is about how I chose my Username describing this piece of highly polished carbon which clicks inside me.
This is the story of my fourth valve surgery in five years, three of them within 15 months. This was the second time I nearly died. Some of you know I'm still recovering from the third time I nearly died a few years ago when I had extreme complications from an outpatient procedure and was taken over by a dread disease which was recently diagnosed.
For the sake of this story, I begin with a piece of the first valve surgery and about about my choice of valve at that time. While it is longer lasting, I knew that the kind of valve I have now requires living on bloodthinners. A lot of clotting goes on during pregnancy, and being on the kind of bloodthinners required for a mechanical valve has an extremely high risk of catastrophic birth defects in addition to dangers to the mother with bleeding and clotting as her hormones and chemistry change.
I was in grad school at the time of my first heart surgery and unmarried. I chose a kind of valve which had a shorter duration, but would allow me to need only a small amount of bloodthinning, just an asperin a day specifically because I had hoped to have children. My first was made from a pig's heart valve - I was told I should expect it would last 7-15 years.
I'll save that surgical experience for another day, but the piece which is relevant to this story is that I only ended up getting 3 1/2 years out of that valve. I was a newlywed when I learned that my valve had ripped from having calcium deposits and was no longer functioning adequately.
I had a really bad feeling going into the second surgery - it didn't make sense to me at the time because while the first surgery had been unpleasant, I didn't have any reason to think I wouldn't survive the next one. Yet I was waking in the middle of the night in sweats about it days before the procedure.
The short story is that something went very wrong with the second surgery, and after my cardiologist was summoned to assist with imaging the problem, he insisted that my surgeon not give up, that he open me back up and do another complete surgery.
So valve #2 was replaced after a few hours and I eventually went home with valve #3 from that same day. I left surgery with 30-odd units of other people's blood after hours of not being able to clot, a balloon pump, and enough electricity having been run through me that I physically jumped when I saw cardioversion depicted on TV for the next couple months (apparently, they stopped counting the number of tries to restart my heart at about 50, but the physician assistant told me she was confident it was more like 100 - I guess there is such a thing as cellular memory because that involuntary jumping while watching teevee was pretty darn odd).
Somehow, they were able to hold me together with spit and chewing gum to get me out of surgery. I gather they felt more confident once I made it through the night. I was conscious while things were touch and go after surgery, although I was medically frozen and my eyes were bugged open and still, so they didn't have any way to discern that I was aware. My father was crying while holding my hand, and I had no power to reassure him - every time I strained to try to move an eyelid or my pinky, the bells and sirens would go off and they'd clear my father out of the room to try to stabilize me.
Took awhile to get back to work, but everything started crumbling when I did. My immune system took a pretty big hit, and I developed little annoyance issues which constantly needed intervention. I faced facts that I wasn't healed and needed to go home and stay there until I was.
So, I was a bit over a year into my marriage and trying to heal from a horrific experience when I realized that if there was every going to be a 'right' time to try a pregnancy, then was likely it since I could attend to my healthcare fulltime.
Of course by this time I have a mechanical valve, which made pregnancy more complicated.
I spoke to my cardiologist (the one who was a hero for me), and he really wasn't crazy about the idea, but he let me look into it, and we discussed what signs he'd look for if things weren't going well. We discussed how I could go from oral anticoagulants to heparin which doesn't threaten a fetus in the same way, but is complicated because it has to be taken by injection or IV.
I spoke with my ob/gyn about a potential pregnancy, and he said, 'oh, that's easy.' I slept on that and fired him: I had no illusion it would be easy, and I wanted someone competent on my team who would be prepared to face challenges with me.
I started phoning around town and found the doctor I wanted. He was at a center affiliated with a medical school where he became chief of obstretrics while I was under his care. His promotion is an unrelated story having to do with a horrible reproductive scandal involving someone who was relieved of the chair while I was pregnant. It's possible things might have gone differently for me had that not come up exactly when it did, because my doctor had just inherited an enormous mess when I needed advocacy with my insurance company. I certainly don't fault him, but it was unfortunate timing for me. He was extremely compassionate and if I had had it to do over again I would have chosen his care again - he was a wonderful ally during a difficult time.
At any rate, this was the only guy in town who had worked with heparin for about 60 pregnancies, a small number of which (maybe a half dozen?) were for valves like me. He checked with one of those patients for me to see if I could talk with her, and I did. She was successful in that the pregnancy resulted in a healthy, lively son who was a toddler, but she had clotting problems and had had a stroke a little more than half way along.
I knew there was a good chance I'd end up on bedrest for the bulk of the pregnancy. I knew there was a chance I, too, would have strokes, and that I might not survive for a number of reasons.
So, I chose my guy to work with...and my HMO insurance company balked. They wanted me to work with some other dude they called on for high risk pregnancies. I phoned his office - my recollection is that and that he worked with a very limited pregnancies with heparin, and I don't think any valve patients - certainly not the broad experience the chief of obstetrics at the medschool had.
I then had a massive fight on my hands with my HMO because the cardiologist who saved my life and the OB who had handled my kind of case were affiliated with different hospitals and in different physician networks: My insurance did not generally tolerate mixing and matching. I eventually won my fight, but not before I was screamed at that they didn't even know if I would GET pregnant, so why should they make an exception for me?!
As a result, I didn't feel very well respected by Aetna (oh, and don't get me started on what I had to do to sort out the medical bills when all this was over...)
So, the deal was that I was to go off my oral anticoagulants a month before we would try to conceive so that we'd get all the stuff dangers to zygotes and fetuses out of my system to keep the baby safe. MY OB gave me a prescription for a company with which he had extensive experience which would implant a heparin pump to give me continuous infusion of anticoagulants (heparin leaves a body fairly quickly).
NO GO! My insurance wouldn't authorize the heparin pump.
I gotta back up - the day I had two heart surgeries the prior year? It turned out to be the same day my mother-in-law had lung cancer surgery. At the time, we understood her surgery to have been successful, but she'd withheld part of the story: A year later, we learned that the cancer had not been erased and now she was dying and was only expected to have a few months left.
This baby-to-be would be the child of her eldest, and a potential first grandchild. I felt that if she knew this baby was coming maybe it would help her hold on a bit longer or at least give her hope for the rest of us.
So, I now have my dream team of cardiologist and OB, but my insurance won't give me the form of drugs I need to get started - I feel significant time pressure to get busy.
I huddle with my cardiologist who suggests that I do Sub-Q heparin injections every 8 hours. We all agree that we should be able to get the pump authorized fairly quickly, but that this seemingly should keep me safe until we can cut through the red tape.
Only it didn't end up working that way.
Ok, fine, Aetna will let me do the injections, and they got me set up with some new home-delivery pharmacy they had just signed. Whatever, just let me get started.
Then the scandal I mentioned happened, which meant my OB had his hands full of brand new responsibilities and dealing with the media in a truly, ugly, ugly reproductive scandal of genetic confusion - I can't remember if this was the guy who donated his own sperm to all his patients who were doing in vitro fertilization, but it was something of that magnitude.
And the woman who was working with the authorization at my insurance company went on vacation, or disappeared somehow for weeks. At any rate, I wasn't getting any answers and time was chugging on.
Meantime, I was doing my injections every 8 hours like clockwork and having blood draws about every other day and beginning to run out of places to draw from since my inner elbows and veins on my hand were being tapped so often. The lab staff were ready to start drawing from my feet and talking about putting in some kind of port in my chest.
To keep the story shorter, let me just explain that things began to go wrong with the home health care company pretty quickly. Instead of getting instructions about dosage from my doctor, they called the lab directly for my results and began making deliveries based upon what they thought I needed rather than at my doctor's direction and my report of my inventory of supplies.
Because of a one-time delivery scheduling conflict, they were requested to make an exception and deliver my supplies at a hospital where I was volunteering (which was not really kosher, but tolerated for the one-time case). Perhaps because this hospital was close to their offices, they began making random deliveries there when I was not present. Wow, that was bad news with that hospital and not at all the understanding this pharmacy had proposed to me when the relationship started - I was getting more and more frustrated with them as they were making things much more difficult for me. I was explaining what wasn't working, but they kept doing it, which was really weird because it was a small shop and it should have been pretty easy to go back to the system they originally laid out.
Then, happy day, I threw up one morning!
We were in our first month of trying, was I really pregnant already?! I was. And I was in heaven. That moment of nausea was the only typical first trimester discomfort I had. When we counted back later, we realized I had been pregnant for less than a week when I got the positive test. That was early April.
I began aggitating more to get my heparin pump now that I was pregnant, but wasn't making progress. My insurance company had lots of contracts with the company my OB trusted, but not a contract for this pump and corresponding service.
First I was told they were working on it.
Then I learned that they had instead negotiated with the company making the botched deliveries and circumventing my doctor. This place had never used a heparin pump, but they had several patients on insulin pumps. Their grand idea was to 'modify' an insulin pump and see how that went for me - apparently Aetna thought this was just as good - realize that this required surgically implanting the pump, so if it turned out that the modified pump was no good, I was looking at two surgeries while pregnant.
I wasn't interested in their winging this for me, this was too dangerous a pregnancy and too wanted a baby to mess with their history of incompetence to that point. My OB wanted the company with which he had a strong working relationship which only worked with expectant moms, and so did I. I fought, but I didn't have as much assistance from him as I wanted given what else was on his plate.
Cancer took my mother-in-law on May 3rd. The days leading up to her death and the weeks following were a blur of trying to be there for my husband who was withdrawing from me in his grief. I kept up with my injections every 8 hours, my belly becoming many shades of purple from even the teeny, tiny needles.
Mother's day was May 12th, and late that night I was first hospitalized because of difficulty breathing. My cardiologist was out of town, and his replacement wasn't familiar with my story, and I don't think he understood my situation very well. I was put on diuretics and sent home the following day. I resigned myself to bedrest being likely. Not a good sign.
There was a memorial service for my mother-in-law on the 18th in the town where she had lived most of her married life. I didn't have the strength to join my husband on his trip out of town, and I asked to be admitted to the hospital while he was gone so they could attempt to work with the continued breathing problems. I stayed a night while my husband was away. I left the hospital with an increased amount of lasix and an appointment at the end of the month - the understanding was that if I wasn't feeling better by then, we would be discussing ending the pregnancy.
I wasn't assigned to bed at that point, but I mostly had my feet up after that. I did a lot of positive self-talk about my situation and I was doing my best to help my sister-in-law who decided to not postpone her wedding in mid-June despite recently having said farewell to her mother.
On the 27th, I started bleeding. People spot, I told myself. I was instructed to watch it. The 28th was my birthday and the bleeding increased. I was told it was a good idea to come to the ER so I could be watched there. My husband came to get me at his lunch hour and dropped me off at the hospital, returning to work as soon as I was taken to a room in the ER.
The bleeding increased. Within a couple of hours, with no attempt to force delivery, my little bundle-of-joy-to-be popped out, sack in tact. We had made it to about 9 1/2 weeks - so very, very tiny.
Well, so much for that... turning away from my pain, I focused on believing that at least the breathing distress should clear up now.
Because I was under the care of the obstetrics staff, I was admitted to their floor for observation that evening. There was a bassinette in my room as a stark reminder of what had just happened. I phoned my parents and grandparents. My husband worked quite late, and a shell of him showed up to see me for a bit, but he was still in shock from losing his mother, and the day must have been quite surreal for him. He didn't stay long.
In my sorrow and aloneness, wanted to fade into the sweetness of sleep, but if sleep came at all that night, it was minimal. My breathing got more and more labored as the night progressed. I stacked pillows behind my head to try to breathe better, then sat straight up, and later began clutching my feet in an effort to position myself to suck in air which came with great effort. Thank goodness delivery floors are essentially staffed like an ICU because my worsening situation needed fairly constant attention.
The nurses were trying like the dickens to get a bed for me in cardiac ICU, but there were two other patients crashing up there and the staff was over-taxed. When those patients both died about dawn, there was finally room for me upstairs. Lovely.
Talking was near impossible by the time I was transferred. The room to which I was moved faced east into the rising sun, must have been about 6:00, I guess, and the sun was glaring through the large wall of windows. Everyone was quite busy. This is a teaching hospital, and there likely 15 people in the room, 6 or 8 residents in addition to multiple physicians and nurses.
My heart was racing with tachycardia, my breath coming in gasps which did not satisfy, creating a sense of physical and emotional panic (I suspect it's a sensation not terribly different from how I've heard the physiological response to waterboarding - take my word for it, it's torture!). I kept my eye focused on the clock on the wall trying to will my breathing to slow down to the pace of the second hand - no dice.
By now, they understood that it wasn't my heart's strength which was at issue, but more likely a blood clot interfering with my artificial valve - the heparin injections had not given me sufficient protection. I was in congestive heart failure, the baby died first, but I was well on my way out.
They wanted to run a catheter from my neck into my heart to take a look at my valve. I nodded that I understood. They asked if I wanted it to be done, and I nodded again my agreement. They brought me a consent form, but I could not physically sign it - no strength. Did I understand what they wanted to do? Nod. Did I want it to be done. Nod. Did I want to sign the form...? I couldn't, so I shook my head. We went through that series of questions two or three times before they were sure what I wanted.
And then I blacked out.My husband got a call from the ICU, asking when he was planning to come see me, and suggesting that perhaps right now might be a better idea than lunch and that he drive safely please.
They took me to another floor to have the cath done, and then back to the ICU. I understand I spoke to the surgeon, in between, but I have no recollection of it.
For those who know what this means, I went into v-fib (for those who don't it's just pretty seriously not good), and the ICU staff did what they considered to be unthinkable (but was the only way they could keep me with them long enough to get into surgery) - they threw me on a bypass machine through my groin in the ICU (something only done in surgery under any other circumstance).
My valve was replaced a fourth time.
If you remember the cardiologist who assisted the previous year, the wonderful cardiologist at this hospital who was assigned to me in the ER phoned him. Once again, my cardiologist cancelled all of his patients for the day to come be with me in surgery and guide the surgeons through the challenges we'd had before.
I had a clot a centimeter long on either side of the valve. "She was pretty much dead going in" more than one of my family members recounted one of my surgeons as having reported post-surgically. Once they got the clotted valve replaced, everything was thankfully fairly straightforward.
When waking after heart surgery, hands are tethered to bed rails to prevent rippng out the tube down the throat which breathes until the lungs can handle the job on their own again. I was aware of the familiar deep, dull aching down my sternum and deduced what must have happened. My family and the nursing staff knew I was devastated and they assumed I was still pretty out of it, so no one described to me what happened. It was a day or two before they understood my gestures to let me write questions about what had transpired, my hands still tethered by my side, so I could not see what I was writing.
As I gather can happen even with early miscarriages, my milk came in while I was bound and gagged in bed (as it were), bringing additional psychic and physical discomfort. For the first couple days I could talk again, I kept repeating, 'I lost my baby on my birthday...'
* * * * *
My recovery was easier than the previous one, but my husband was wrapped in the grief of losing his mother and the baby and nearly me in such a short time. He withdrew to someplace I couldn't find him while I was
needing to be reminded that I would have a family one way or another, and that all was not lost.
My OB was very sweet with me, and although my heart function had been stronger than was first believed when things went wrong, it didn't seem like another try at pregnancy was a good idea. I made two appointments to prep for a tubal ligation, but after watching the 'big belly parade' in his waitng room both times, I was sobbing by the time he was ready me. He told me to wait, not make the decision now, that maybe things would look different in time.
I've heard it said that couples tend to either grow together or apart in such circumstances... I ventured back out into the world on my own just over a year later having spent the intervening time trying to reconnect with him. Happily for my ex-husband, he is in a strong marriage now with two beautiful daughters.
Still unmarried eight years later, birth control options were getting problematic. The pill was discarded having created problems with my bloodthinners, and a diaphragm was abandoned for causing constant urinary tract infections. After a failed try with an IUD (I'd been talked into it - it really seemed like a bad idea for me, and then I bled like a stuck pig with every period, presumably because of the bloodthinners, and cramped so my eyes would tear), I scheduled the dreaded finality of a tubal ligation hoping that the closure would allow me to find another way to build a family.
I've told the story elsewhere, but the tubal ended up being my third near death experience when I bled out internally the day following that procedure. I was taken to trauma surgery when I went into respiratory arrest and then had ischemic events from too little blood left in my circulatory system after losing half of it or so.
Many of you know that at some point in all this, Lyme disease interrupted my recovery from this trauma. It took five years to discover why I didn't regain my former strength, a diagnosis I only got a few months ago now.
* * * * *
There have been a great many many medical professionals who have intervened on my behalf to keep me here. Also deserving great thanks are the men and women who have battled for reproductive health and choice who paved the way for me to attempt to fulfill my dream of engendering a family. It hasn't worked out so far, but I've been ejoying my friends' children. My new dream is that I'll be married to someone whose grown children give him grandchildren in whom I can share delight.
It's been a confusing time being too weak to work, and yet too mysteriously (and to them, doubtfully) ill to keep my secondary disability insurance (although thankfully I established a relationship with Social Security Disability back with the heart surgery debacles which was reinstated in the aftermath of this event).
Now that we know what's been wrong with me and I've begun appropriate treatment, I can again imagine having a life without constant fatigue and disorienting dizzy spells. Like so many others trapped by physical circumstances, I've found a way to have the world come to me in this community, and to augment my limited interaction with the world in a way which keeps my mind active and my hand in... well, I don't really have my hand in much, but it keeps me off the streets, or something. ;-)
At the beginning of this diary, I promised another story. The above story is relatively easy to tell because it's rather sympathetic - sick girl has life-threatening event and is rescued. The next story took place before my first heart surgery, and it's possible that it hastened that event, but I did not have any idea what was in store at that time. There are photos of historic interest to be seen, and an ironic connection to reproductive health politics figures into that story.
Thank you to those who have taken the lead in telling their tales about experiences both with having babies and not, and with the vital importance of reproductive options. The right to make the most appropriate and healthful choices is sacred and belongs to each woman and her doctors.
God bless the doctors who help women fight for their dreams and their health.
I want to thank everyone for their kind words and generosity.
Took all night to get this on paper, as it were, and I'm tuckered and awash with visceral memories of hopes and expectations which did not turn out to be. I planned for the worst with this pregnancy, as they say, and I had no idea what a roller coaster to prepare for.
I sent a link of the story to all the doctors involved thanking them, once again, for massive efforts to bring me through all this.
Thanks to all those who have shared their stories - those with happy endings as well as without. My sense is that the tide is beginning to turn with the tragic murder this week. Perhaps the groundswell of stories will begin to settle the matter where it needs to be, as a private health issue.