Thursday, April 24, 2014

Guest Post: Lee's Story



***April 20-26, 2014 is National Infertility Awareness Week and I am taking part by sharing stories from women who have experienced infertility first hand. Did you know that 1 in 6 couples experience some form of infertility? Someone you know is probably struggling with infertility and you may or may not even know, since it is often a taboo subject. Help break the silence and raise awareness. For more information about NIAW, please click here. This post is the fourth in my 2014 Infertility series. To see more stories, scroll to the bottom of this page for links.*** 


 My dear friend Jennie has asked me to come write a guest blog post for her Infertility series, and it is my very great honor to do so. I am sorry that this article is long, however our particular journey has been quite complex. This does mean however, that if you persevere and make it to the end, you will benefit from a discussion of a wide range of aspects of both loss and infertility. I hope you will, at any rate.



 The Team Sport No One Wants To Play.

My name is Lee, I am the poster child for getting picked last, and I’m okay with that. This is because the team I was picked for is playing for the highest stakes and I would have rather played this game right now than at any other time in my past. The name of this game is Loss and Infertility, and the game is played with the goal of winning before you run out of options.

A bit of background, first. When I was very young, I was wed to a young man with well-hidden psychiatric issues. The marriage didn’t last but a few months before it all fell apart, and I went on with my life as young people do, in and out of relationships. I did some schooling, and then took a break to figure out what I really wanted to be in life. I ended up spending a decade at a vocation that I loved, skiing. But, eventually I realized that knees don’t last forever and being a professional ski bum doesn’t have the best retirement plan. I returned to school and finally earned my bachelors degree at 38. That fall I moved and began graduate school, where I was finally introduced to the love of my life. Two years later, we married and immediately began trying for a family.

I knew that at 40, I was pushing the envelope. However, in all my life I had never been with a man I trusted enough to have children with, until now. Not only did I feel comfortable bringing a child into the world with a strong partner, but my husband needed to be a father. He is so wonderful with kids, and I felt that he needed to be able to share this gift. So, six months before the wedding, I began reading to find out if there was anything we could do to increase our odds.

As a scientist, I became appalled at what turned out to be my total lack of basic understanding about how the human body becomes pregnant. I had always felt that I had a decent sexual education from the public schools I had attended. Never have I been so wrong. It is criminal the mis-information and fear mongering our children are force fed all in the name of preventing teen pregnancy.

So, armed with my new knowledge and a basal body temperature thermometer (BBT), I began tracking my daily waking temperature to become accustomed to my individual ovulation patterns. I was pleased that, even at 40, I had a rock solid and totally textbook cycle every month, and doubly pleased that I was due to ovulate 2 days after our wedding. A chance for a honeymoon baby! The honeymoon came and went and no baby. However, before we had a chance to start worrying, we became pregnant only four months after the wedding.

Ten weeks into my pregnancy, having been ravaged by intense morning sickness for weeks, I was finally due to see the OB for the first visit, just days before moving 3000 miles to our new home. The OB did an exam, pronounced me ‘very pregnant’, and proceeded to the ultrasound. He then told me that I had my dates wrong, because the fetus was measuring 6 weeks and 0 days and did not yet have a heartbeat. When I responded that those dates meant that I would have gotten pregnant a week after I started getting positive pregnancy tests, though he lied and said that everything would be fine, the look on his face told me the truth. I had suffered a missed miscarriage. This occurs when the fetus passes away, but the body holds onto it and continues with the pregnancy. This was my second. When I was much younger, my short-lived marriage had produced an ‘oops’ pregnancy which ended in a D&C, to remove abnormal tissue. A later medical record search showed that the ‘abnormal tissue’ was a missed miscarriage that happened at 6 weeks, as well. So, here I was at 40 having had two missed miscarriages for two pregnancies.

Left to my own devices by the OB in my old town, I was only given a prescription for medication to ‘help the miscarriage along’ to take with me and take when I got to my new home. All I feel needs to be said, is that this late in the 1st trimester, women should not have to endure it at home. I should have been given a D&C under the kindness of general anesthesia and decent pain control. Like many women, I still suffer from nightmares about the experience.

My new OB in my new home was very kind and aggressive given my age and history. After four more cycles relying on charting my BBT to pinpoint ovulation, he ordered preliminary tests to rule out common issues, such as my thyroid and hormone levels. The only thing that turned up was a woefully low progesterone level. So, he immediately started the first of three Clomid cycles (a medication to help ovulation), with appropriate ultrasound and blood monitoring, and progesterone support after ovulation. Unlike many doctors who hand it out like candy, he appreciated the medical risks with this medication and limited me to only three of the six doses a woman can have in her lifetime. As soon as the third cycle was called a failure, this aggressive OB had me in for a consultation with a Reproductive Endocrinologist (RE). I will always be thankful for how aggressive this OB was, because by this time, I had been on Team Repeat Loss long enough to know that most OBs drag their heels in referring a woman out to a specialist.

Fun fact: Industry standard is to wait until a woman has had three miscarriages in a row before even ordering the blood work known as a repeat loss panel. Why three? Insurance company picked up this argument of ‘wait three and see’, because it is the long-time standard in the cattle industry, so they figured it was a good way to reduce costs by allying it to human women. This despicable fact totally ignores the fact that repeat losses are very often caused by simple things like an imbalanced thyroid or a blood-clotting disorder that are very easily treated with medications. Given that 25% of all pregnancies end in miscarriage, and most women will go on to have a healthy pregnancy the next time, I can understand not jumping in with all guns firing after the first miscarriage, but given the devastating emotional toll on the mother, I believe it is criminal to ‘wait three and see’.

Seeing an RE is an expensive proposition, and remember what I said about rather being picked for Team Infertility last and at this point in my life? For the first time in my life, I had ‘premium’ health insurance. If we didn’t have this kind of insurance, our journey would have ended without ever even being able to consult with this specialist. She ran a battery of tests, from the extensive blood work to a Hysterosalpingogram, a test where contrast dye is flushed into the uterus and out the fallopian tubes into the abdominal cavity under pressure and during a real-time x-ray series. This test generally shows the shape of the uterus and if the fallopian tubes are clear. In my case, everything looked perfect. The blood work returned with everything looking great. I was perfectly healthy and ‘had the eggs of a 30 year old’.

But, even ‘premium’ health insurance has its limits. Ours covered the “testing and treatment of the causes of infertility”, but not the very procedures used to overcome it. So, we began paying out of pocket for our next step. We began the first of three intra-uterine inseminations (IUI), using injectable medications to stimulate ovarian production, trying to get 3-4 eggs to mature in a single cycle, to give me 3-4 months worth of ‘tries’ in a single month. On the third time, I became pregnant. Five weeks of nervous anticipation later, we had an ultrasound and got the devastating news. We were pregnant with twins, but they had failed at exactly 6 weeks again. Four babies in three pregnancies and all failed at 6 weeks, while the body kept trucking along believing itself to be pregnant.

This time, the RE managed the loss and I was taken the next day for surgery, and sent home to heal. Once my blood levels returned to normal, a far more extensive than before blood panel was ordered, the Repeat Loss Panel, looking for rarer issues. When the results came back, they identified a genetically inherited blood clotting disorder called Factor V Leiden. Suddenly, my personal medical history began to make much more sense. I had been having random ‘circulation’ problems for years, and had even been sent home after seeking help for two severely swollen legs earned on an 18-hour car ride, without any testing, told that “it looks like deep vein thrombosis, but you’re way too young to have blood clots so it’s probably just edema”. This disorder would certainly have lead to strokes in my future, if left untreated. The fact that I had previously spent 10 years taking birth control pills known to cause blood clots in women susceptible to them without a stroke was nothing short of a miracle.

So, we had identified one potential cause of my missed miscarriages. Fetal blood vessels are extremely small. Even just two or three red blood cells sticking together could cause a stroke in the fetus right as the heart began beating at 6 weeks. The RE also ordered a saline-infused sonogram (SIS). A high-resolution ultrasound done while the uterus is expanded with saline solution, in order to examine its shape while stretched out. Mine showed vertical lines of raised scar tissue from a previous fibroid surgery, and a slight heart shape, rather than totally triangular shape. So, the RE moved forward to do an operative hysteroscopy (surgery in the uterus) to remove the scar tissue, which might also cause a missed miscarriage at 6 weeks. If the embryo implanted into scar tissue, it couldn’t make a vascular connection to the uterine wall, and there would be no heart beat developed.

When she got in and looked into my uterus with her camera during the surgery, she discovered an unlooked for problem. Where the SIS showed a slight curve like the top of a heart shape, the actual inside of the entire top of my uterus was a shallow and wide septum. This is a common birth defect, which leaves a wall of non-vascular tissue running down the middle of a woman’s uterus, dividing it into two, and is a cause of miscarriage and even later term loss due to restricted space for the growing baby. Mine was very shallow, but was so wide that a third of the uterine wall would have been totally unable to support a vascular connection to a baby. The RE was able to successfully remove it and I had to wear a uterine balloon and undergo estrogen therapy to allow it to heal, and for a healthy endometrium to form over the newly exposed tissue.

The genetic results came back from our twins, and they were healthy baby girls. All signs pointed to healthy eggs, and causes of miscarriage fixed or under control with anti-coagulants. At 41, it was time to move ahead. My husband and I came to an unusual decision. We knew we could try again with another IUI or even IVF. However, we also knew that at 41, I had a 50% chance at another miscarriage based solely on the age of my eggs. In just under two years of marriage, we had lost three children and undergone many painful and expensive procedures together. The grief and pain of loss is impossibly hard on couples, because our society isolates these couples in their grief and tells them to forget the death of their children, because it makes others uncomfortable to talk about. Also hard on couples is the stress of infertility and sex-on-command because you are ovulating and not because you just feel romantic at that moment. For us, we were just feeling like we didn’t want to run a bigger risk of another loss than we had to, as we had already endured so many in such a short period of time. So, where most couples wait until they exhaust all other possibilities, we skipped over more IUIs and IVF using my eggs, and went straight to donor egg IVF using the individual frozen eggs in what is still a very rare but exciting method that uses less eggs/embryos per recipient couple to produce the children they wish for. This keeps costs lower for the recipient couple and prevents a couple being responsible for more embryos than they can use. This decision to move straight ahead to donor egg is not common.

Put bluntly, it was more important to us to have a living child than it was for us to know there was a genetic link between the child I would carry and give birth to.

I ask that you think about that statement for a moment. It is a glimpse inside the minds of two people who had been wracked by pain and loss, uncertainty and an overwhelming desire to have a child. With this decision, we made the decision to end my family line. My parents, both only children, will have no grandchild genetically related to them.

And…

It matters bugger all.

My parents were the first to support our radical decision. When the time came to travel out of state to the clinic that had taken my husbands sperm and combined it with the thawed eggs of our selected donor to create three perfect little embryos, it ended up being my mother who was with me, as my husband’s work had called him away. I have learned from the friends I have made in the Loss and Infertility world, just how special and rare this kind of unwavering familial support is, and how the lack of total support from family and friends takes its toll on people already in pain and struggling with doubts and fear.

I was blessed with a successful pregnancy, and at 42, gave birth to a healthy, beautiful, perfect little girl at 37 weeks. We still have two embryos waiting for us at the out-of-state clinic. And, as we would love to give our girl a sibling, we knew we would have to try right away given my age. However, the state of my uterus was in question. Our daughter had been delivered via c-section 3 weeks early to prevent me from going into labor. I had so many previous incisions in the uterine walls that the risk of uterine rupture during labor was extremely high. During the c-section, the OB also discovered I had developed a complication called placenta accreta, where the placenta infiltrates the structure of the uterine wall. This meant that the normal bikini-line incision for the c-section had to be expanded into something like an inverted T shape to give him room to work in digging out all the placental tissue. The OB and the RE concurred that we would need to wait a full year before trying another embryo transfer.

Wanting to have everything in line, I took the initiative and approached the RE after eight months to begin the process of making sure that the uterus had healed properly and was fit for a transfer right at the 12 month mark. She scheduled a SIS and the result was frustrating. She was unable to expand the uterus with the saline solution, even using quite a bit of force. The ultrasound seemed to show a tiny band of scar tissue that was fusing the c-section scar up front to the accreta scar on the opposite wall, and she scheduled another operative hysteroscopy to cut the band open. The result defied the odds of what one woman would end up having to cope with in her lifetime. I had developed severe Ashermans syndrome, a condition in which the uterus fills with scar tissue adhesions, usually as the result of a heavy-handed scraping during a D&C. In my case, it was the combination of the c-section and the accreta along with my decision to breastfeed, which had kept my estrogen levels very low and allowed the adhesions to form.

Severe Ashermans has historically had a very poor outcome in women’s fertility, usually resulting in uterine perforation during repair attempts due to total lack of visibility caused by the solid blocks of scar tissue, and often resulting in a hysterectomy as the uterus has trouble functioning properly and becomes very painful. However, my darling RE had been following the progress of a recently published study on a new way of treating severe cases and had used the new protocol twice before with some success. She put me on estrogen and scheduled a third operative hysteroscopy that would be performed under ultrasound guidance to reduce the risk of uterine perforation. This surgery was able to cut through very thick blocks of scar tissue filling the interior of the uterus allowing the cavity to open normally, and she installed another uterine balloon to hold the cavity open while it healed. At the end of a week, she removed the balloon and installed a copper IUD to continue preventing further adhesions, while continuing estrogen therapy for the next eight weeks to re-grow healthy endometrium over the uterine walls. In two months, we will remove the IUD and do another SIS to see if all of this effort worked and we can roll immediately into a sibling attempt, or if our journey ends here with one win in our results.

I am now 44 years old, and I was picked about last for Teams Loss and Infertility. The journey that my husband and I have taken has been painful and expensive, in both cases physically and financially. We have been blessed with the rare combination of doctors who ushered our way swiftly through the progressive steps of increasingly higher assisted reproductive technology with very little of the delays most women face, very good insurance that paid for more of the process than most people have access too, the financial means to pay our way for the remaining balance (which was more than many in our country make in a year) and not sink into debt to finance it (although it has left us far behind where we should be in terms of retirement and savings, and delayed the purchase of our home by several years), and the age and maturity to tackle the emotional toll on our relationship with a solid eye of it all being something that we do together for our future. If we had been younger, this would have been even harder. While the specter of age was and is looming over us, so many other couples that face this particular team sport do so without those benefits of age that we had. However, if I can be one thing to members of my team, it’s the proof that it is never too late to play the horrible game and even, if you are lucky, to win.

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2014 Infertility Series

Liz's Story
A's Story
Kate's Story
Lee's Story
Kati's Story

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