Tuesday, January 26, 2010

Consultation Rescheduled

Well, Jay & I were suppose to go for my surgery consultation tomorrow, January 27, 2010.  The automated system even called me last night to confirm and remind me of my upcoming appointment and also explained if I needed to reschedule to phone the office during office hours. 

No. I don't need to reschedule.  I want to get this done and over with so I have a healthier reproductive system/monthly cycle, get rid of those nasty bad (could turn into cancerous) cells.  Then hopefully make some progress on conceiving another child.  We're good.  Jay was suppose to be at a three day retreat returning in time for my consultation, got permission from the bishop to leave early - as if he really needs permission.  Then because of the winter storm, turn into blizzard, the retreat was postponed till next week, Mon., Feb. 1st - Wed., Feb. 3rd.  Which could present a conundrum because I was originally told the surgery would be Feb. 1st or 8th. 

I was also trying to figure out if I could postpone the surgery till the 15th because I was suppose to be delivering papers till the 12th.  Well, I got excellent news yesterday that they have found a replacement carrier that wants to start Feb. 1st.  Great.  If need be I can have my surgery on Feb. 1st if the doctor has an opening. 

Then the phone rang this morning.  It was my doctor's secretary/receptionist.  Apparently, my doctor needs to reschedule my consultation.  To be honest, I was a little upset, but she was originally on vacation this week and had to get some appointments in.  Well, apparently her surgery schedule is light on Feb. 1st so she is moving some of her appointments to, yes you guessed it Mon., Feb. 1st.  You know when my husband is suppose to be at a retreat 3 1/2 hours away.  They moved my appointment to Feb. 1st at 2:00 p.m. I asked if she had any other times, but of course not for a few weeks, and she would like to see me sooner than later. 

So, either Jay is not meant to go to this retreat and leave his family for three days or he's not meant to go to the consultation.  It's a sign, a sign of what I'm not sure.  And now I have to wait to discuss what options will be available and what the doctor recommends until Mon., Feb. 1st.  I'm hoping she will be supportive and understand why I am not ready to give up on having another child.  I miss my OB/GYN back home.

Wednesday, January 20, 2010

Why share now??

One might ask, "Why now? Why share your struggle?"  You see we have been stuck between these two worlds ever since 1996, but it has really been evident since 2001, and there is always a trigger, a reminder, of our struggle.  When those triggers arise, there is a waterfall of emotions.  Sadness. Anger. Frustration. Heartache. Loneliness. Such triggers include the arrival of the monthly visitor, an announcement of an expectant parent, annual doctor's visits, our kids talking about wanting another sibling, and most recently a medical diagnosis.

You see, prior to our first miscarriage, in October of 2001, my monthly visitor arrived like clock work every 28 days, but after our loss there was no rhyme or reason to her arrival.  Which made (makes) trying to conceive more complicated. Of course, not one doctor can pinpoint the cause.  They can rule out reasons, but can't explain the difficulty of getting pregnant nor the cause of the seven miscarriages.  At one point, I was told, "Well, you can get pregnant, but you can't stay pregnant."  Keep in mind, getting pregnant didn't come easy or quickly though.  What might typically work for one couple actually seems to make our infertility worse.  Clomid & progesterone treatments actually had adverse effects on my ovulation rather than helping.  Doing nothing gets us no where, but trying something seems to work against us, too.

With our recent move to North Dakota and with my medical history I thought it be best to establish care and at least have an annual done since it had been almost two years.  You see, the females on my mother's side of the family seem to have issues to with their female health and with that family history I want to stay on top of things.  In 2003, my mother was diagnosed with Complex Hyperplasia with Atypia of the endometrial lining and had to have a hysterectomy.  I never even thought about it.  All of my doctors know my medical history and I thought I had shared my mother's because typically we inherit our mother's ailments. 

At my annual visit, in November '09, the physician's assistant asked the typical questions and did the exam.  Well, after the exam she recommended an ultrasound to evaluate my endometrial lining because of my sporadic cycles and heavy bleeding.  She explained to me that my symptoms could be an indication of a condition known as hyperplasia. Oh yeah, my mom had that. : (  Well, based on my age, being over 35, this condition is common especially with my given symptoms. 

Sure enough, the ultrasound indicated that my endometrial lining was at least three times as thick as it needs or should be.  So, in early December I had to go in for an endometrial biopsy.  Of course, the week I waited for the results all I could think about was my mom and how she had to have a hysterectomy.  What if I had it too?  What if I have to have a hysterectomy at the young age of 37?  We still want to have another baby, if I have what my mom had then that will never happen and it won't be my choice. 

Well, I went in for the results and found out I have Simple Hyperplasia without Atypia of the endometrial lining.  What does that mean?  Hyperplasia occurs when the cells of the endometrial lining grow abnormally and thicken the lining, and some kinds can lead to uterine cancer.  There are four stages and I have the earliest stage, where as my mother, by the time she was diagnosed, was at the final stage before the cancer.  As with any disease, early detection and treatment is the best defense. 

Well, the first approach of treatment, especially since we want to preserve my fertility (LOL) is a few months of hormone treatment, progesterone specifically, to try and thin the endometrial lining, naturally - if you will.  The PA explained the progesterone would/should thin the lining and while on the meds, I would not have a menstrual cycle.  Now keep in mind none of this made any sense. Number one, if the lining is suppose to thin, where's it going to go if I'm not menstruated. Number two, over the years I had been put on progesterone the last half of my cycle to help sustain a viable pregnancy - yeah, it never worked either.

Of course, I'm not the typical patient.  Six days after starting the meds, I started spotting then bleeding and after two weeks of bleeding I phoned the doctor's office.  The doctor on call reviewed my file and said it was find my body was just adjusting to the meds.  Well, another week went by, so now I had been bleeding for three weeks, so I phoned the office again to inquire because it wasn't letting up, it was getting heavier.  The next day I had to go in for an ultrasound to see what was going on and see if the meds were doing what they were suppose to be doing. 

Remember, I'm not typical.  The meds were not working like they should have been.  So, now the doctor has recommended a D & C (Dilationa and Curettage) to clean out the abnormally thick lining and cells.  Jay & I go Wed., January 27, 2010, for the surgery consultation, pre-op, and registration.  Of course, the PA said the doctor's recommendation is to go on a low-dose birth control after the procedure to prevent the lining from developing the hyperplasia again.  I reminded her we are still hopeful of conceiving another child. So she said she would leave that for us to discuss with the doctor at our consult. 

Tuesday, January 19, 2010

The assistance of an Infertility Specialist

As we have one foot in the world of parenthood and one foot in the world of infertility, we have tried, and are still trying, to find a balance.  I keep thinking the time will come when my heart will be lightened and I will be content and no longer longing to be pregnant, to feel life within, and to call a baby mine.  But until that time comes, we still try to find a way to make it happen. 

As I mentioned earlier, from Aug. 2006 to March of 2007 I focused on my health and losing some weight in hopes that would be enough to jump start my reproductive system.  Unfortunately, it wasn't enough.  So, from March 2007 - May 2007 my OB/GYN had me do three cycles of Clomid with Metformin to see if we could achieve a viable pregnancy.  No. Nothing. So it was time to be aggressive and she referred us back to the infertility specialist.

Well, we actually had insurance that covered parts of treatments - office visits and some medications, but not all meds and not other parts of treatment.  So Jay & I discussed it in great detail and we weren't sure how we could afford the parts that weren't covered.  We decided to meet with the doctor in June so we could discuss with the him our options.  The visit went well, but the statistics for an unassisted pregnancy based on my age (approaching 35) and history, especially the multiple miscarriages, were grim.  He stressed the importance of being aggressive if we wanted to achieve a viable pregnancy. 

We were aggravated because of all the losses we had and here we were being told that it was still going to be extremely difficult for us.  It didn't make sense, and to make it worse someone close to us was pregnant with twins - someone that wasn't even trying, was on birth control, and was content with her family size of two children when she found out she was pregnant.  It happens all the time around us, in the world, someone doesn't plan a pregnancy, doesn't want anymore kids, yet they are given this gift.  Then you have all those so-called parents that hurt their children -- WHY?? WHY have they been given such a gift that they don't want, don't long for with an aching heart, haven't prayed for, and don't take care of and rear in a loving home with discipline and guidance?? 

As we had explained to the doctor, we were only willing to go so far with his assistance because we felt blessed for the three children we have and we felt that certain procedures were reserved for those who still had empty arms.  He helped explain the financial aspect of our choices and wrote the orders for the first cycle.  We applied for a fertility loan to help cover the expenses that the insurance wouldn't cover and from June 2007 through October 2007 we were under his care.  We went through three cycles of oral meds, mid-cycle ultrasounds, a monthly injection, and IUIs to find out we finally achieved a pregnancy in October (the September cycle was a success) to only have it end in a miscarriage. 

The doctor's recommendation was with three failed cycles it was time to step up the next level of meds (daily injections); however, I wasn't ready.  So, we took three months off and then in February 2008 I requested that all unused funds be returned to our lender because I still wasn't ready to subject myself to fourteen days of shots and continue all the other invasive procedures.  I just wanted to get pregnant on my own. 

So, here we are in January of 2010 and we are still hopeful that it will happen.  However, now I am dealing with the latest diagnosis, one that has provoked an emotional roller coaster. 

Saturday, January 9, 2010

Stuck between two worlds . . .


So, have you ever been stuck between two ideas or two places and didn't know which way to go or just felt like you didn't belong in either place?

On the outside, I look like a mother of three beautiful healthy children, which I am. So, I have three children which means I can't be suffering from infertility. WRONG!! When people see us out and about we look like the typical American family – husband, wife, and three kids. You know you don't know a family or a couple's story because they don't wear it. A friend best said it, when she stated, "I just assumed, maybe as many do, that you happily had three and decided that was your "number."  Our kids are older now, so when looking one might think we have completed our family. I don't wear a badge that says, "Mother of three here in this place, seven angels above, and still longing for one more here in this place."

So one foot is in the world of parenthood and the other is in the world of infertility. We didn't decide three was our number, we had a family plan and four was the number we wanted, still want. Even though we are stuck between two worlds, society doesn't or isn't sympathetic and dictates we are not part of the infertility world. We have had family and friends tell us we should be thankful for the three we have and leave it at that. What they don't realize is those words cut like a knife because we are thankful for our three children but we agonize over the loss - our loss.

Not just the loss of each pregnancy, but the loss of being pregnant and having another baby/child to raise as our own. I have come to the conclusion, unless you have experienced this loss, it is too hard to understand what a couple is going through. Please understand, I would never wish this loss, pain & suffering even on my worst enemy. I know I can't understand the pain and suffering a couple or a woman is going through that still has empty arms, but they can't understand the pain and suffering Jay and I have and are going through either. Every couple's journey to parenthood is their own and every couple's pain and suffering to get to parenthood, whether it be to the first child or the fourth child or the tenth child, is their own and doesn't lesson or isn't limited because they have entered the world of parenthood.

Every time we visited a fertility specialist we treaded lightly because we weren't sure if we belonged there, in the world of infertility. When I would sit in the waiting room, I remember feeling sadness for the other couples who sat there, too. Not knowing their individual story made my heart ache. I do have three beautiful children, but what if they still had empty arms, should I be there taking up the doctor's time???? We discussed these emotional feelings with the doctor on our initial consultation, and he reminded us infertility was infertility – primary was no different than secondary because they were caused by the same thing. We were all there for the same reason. We all desperately wanted to have a baby.

So, here we are with one foot in the world of parenthood and one foot in the world of infertility.

Tuesday, December 29, 2009

Fast Forward through 2 years 2 doctors & 2 miscarriages


Believe it or not in February 2005 we found out I was pregnant, again. The doctor was optimistic because my HCG counts were good and a lot higher and better than those of the pregnancy in December of 2004. Matter of fact, it would seem that we got pregnant the first cycle after the Methotrexate injection, which was not planned. Yes we were having unprotected sex, but conception wasn't something that happened very easily for us. The doctor shared her genuine excitement and stated she thought this could be the one!

We were cautiously optimistic because we had had so many disappointments in the past. Unfortunately, as we approached the six week mark, I miscarried again. The doctor said it more than likely happened too soon after the injection and it was nature's way of discarding an undeveloped baby. She expressed true compassion and explained she understood that it didn't make my loss any easier.

Well, I got very comfortable with this OB/GYN, but unfortunately her practice was no longer in my insurance's network. So, for my 2005 annual, I had to find a new doc. Of course, when you go in for your annual they ask all the same questions. So, this new doctor thought it was in our best interest if we sought an infertility specialist. Been there done that. Yes, we wanted (still want) another baby, but first, we didn't have the resources/funds to go to an infertility specialist and second, we thought that should be reserved for those couples who had empty arms. Luckily, before my 2006 annual was due my old OB/GYN's practice was back in the network. Unfortunately, the month before my annual we had a positive home pregnancy test, which we waited out and after a week of finding out I was pregnant we loss that pregnancy too.

When I went in for my annual in August of 2006, my doctor and I talked about options. Since I was currently at my heaviest weight, she had suggested losing 10% of my body weight because sometimes that is just enough to jump start the reproductive system in females. So, in September, Cassie started a nutritional class at our co-op and I was the teacher's helper. We learned a lot about reading labels, the importance of the food pyramid, calorie intake, and portion control. So I started applying things I learned and was focusing on losing some weight hoping it would help. By October I had lost five pounds. I was motivated and optimistic that this lifestyle change could be beneficial.

By March of 2007 I had lost 14% of my body weight, I had lost 35 pounds. BUT nothing had changed. I was still having problems with my menstrual cycle and we still hadn't achieved a viable pregnancy. It was frustrating and I was very angry. WHY?? Why was the best gift being taken away from me, from us?? What did I do wrong to deserve this much pain?

Sunday, December 27, 2009

Why??


After our miscarriage in Dec. of 2004, I was very upset. I couldn't understand (still struggling with) why this was happening. Why had four pregnancies ended with such sadness? We had three successful pregnancies and three beautiful healthy children. For the most part our children were healthy; Mackenzie was the only one that had some minor health challenges.

The obvious minor complications during the pregnancy as discussed earlier, and then from birth we just assumed we had a colicky baby. However, by 5 weeks of age she was diagnosed with gastric reflux and was put on a daily med to be given with each feeding.

Then when she was three months old she was fighting a low grade fever for weeks and the doctor's office, actually the receptionist, kept insisting it was viral every time we phoned. Unfortunately, I was naive, even though she was the third baby – we never had anything with the other two, and listened to her. After three weeks of an on and off fever, she ended up having a febrile seizure, shortly stopped breathing and turned blue. Luckily my neighbor's sister was a nurse and she was over so I, well I can't remember if I phoned or ran next door, but she came over and got her breathing and pinking up while we waited for the emergency squad.

We spent several hours overnight at Columbus Children's Hospital while they ran every gamut of tests on her; from x-rays, urine catheter, blood draws, to a spinal tap. We left there with no answers other than "it must be viral." I guess when doctors can't explain something their response is "it's viral." Well, 24 hours after culturing her urine, it was determined she had a severe urinary tract infection which meant there probably was an underlining cause.

So another round of tests which included an abdominal ultrasound, okay harmless for a three month old infant, but then she had to have a Fluoroscopic Voiding Cystourethrogram (VCUG) which consists of a catheter and filling her bladder while watching the flow. They used tests to diagnose her condition and determine treatment. She was diagnosed with Vesicoureteral Reflux grade three on both sides – layman's terms, she had kidney reflux and the urine flowed in reverse from her bladder to her kidneys. She was put on daily antibiotics and had to have testing done every six months for the first 18 months and then every year until it spontaneously corrected itself or it was determined she would need surgery.

We always joked and said "had she been the first she would have been an only" because she challenged us after having it easy with the first two. With her diagnosis, anytime she ran a fever, even a low grade one, she had to go to the doctor's office and provide a urine sample to make sure she didn't have an infection. As she got older and potty trained she could pee in a cup, but those first couple of years entailed the nurses putting a catheter in to take a urine sample. That was rough, okay maybe rougher on me than it actually was on her, but she cried everytime.  Luckily, when she was 5 1/2 years old her condition had spontaneously corrected itself, even after getting better in the beginnig but then getting worse the year before she was cleared and released from the doctor. 

To go back to what I initially said in this post . . . I couldn't understand why we were having such a difficult time conceiving and carrying to term another child. I use to question was it something I said or did? When I made that comment about being the first she would have been an only, did I speak the future and, if you will, jinx having another child. Matter of fact, after I lost the first baby in October of 2001 I wondered if it was something I said in conversation with my mom. After 9/11, I remember how fearful I was and I told my mother I didn't know if it was right to bring another child into this world of uncertainty. One month later, I lost that baby. So, was I being punished for my statements?

Monday, December 21, 2009

2004 - A Blurr till the end of the year

Well, much of 2004 is a blurr. All I remember is having to find yet, another new doctor because our insurance changed, my husband still worked for the same company, but they found a need to change carriers. 

The new doctor I found was awesome.  She was compassionate and encouraging.  Of course, though, she wanted to run her own gamut of tests and see if something had been overlooked or had changed. It had been a while since I had any cycles with Glucophage and Clomid so she wanted to see if we had a different result this time.  We went through the recommended number of cycles before she wanted, well she did, to refer us to the reproductive specialist.  Again, we explained our insurance coverage was miniscule so we wouldn't be able to afford any services from the reproductive specialist.  However, she recommended going to see what his recommendations were.  So, we went for our consultation and the doctor labeled my condition as a "habitual aborter." 

Keep in mind by 2003, they had ruled out a male factor, my husband was definitely not the problem.  So here the burden laid upon me.  I was the problem.  I could get pregnant, but couldn't stay pregnant. It was my fault.  What was I doing wrong?  Okay, I'm not a skinny mama, but at the time I wasn't much bigger than I had been when we conceived Mackenzie.  I didn't (still don't) smoke or drink excessively (yeah, I have an ocassional drink, but nothing to put me out).  I was taking dietary supplements, but I lacked (still do) excercise.  So, why?  What is so different now from our first, to our second, to out third pregnancy which were sucessfully carried to full term?

We explained to the reprocutive/fertility specialist that we wanted to increase or enhance our chances of a viable pregnancy.  We really didn't want to incur a lot in medical expenses, let alone we didn't have much to go towards any of the services offered. He graciously explained what his services were and if we were not able to commit he understood.  He prescribed a few cycles with the clomid and told us to use the ovulation predicting kits, which we had become quite familiar with over the years.  There was no success.

Well, after going in for my annual with my OB/GYN she agreed to put me on and keep me on Glucophage to help maintain lower insulin levels because that seemed to keep me on regular cycles. 

On December 14, 2004 I had to phone my OB/GYN because I was in so much excruciating pain.  Nothing, non of the over the counter meds I had tried were relieving the pain.  I was doubled over and trying to rest.  My last menstrual cycle was Dec. 2 so I was only on day 13.  The doctor thought maybe it was a cyst that had ruptured so they brought me in for an ultrasound.  They couldn't find or see anything that would be causing so much pain.  The doctor ordered a blood panel and within 24 hours she had called to inform me I was pregnant and she wanted to know how the pain was.  I was still in pain, but the meds she had prescribed were taking the edge off.

Here we go again . . . every other day into the office to have blood drawn.  Each call brought unwelcoming results.  My HCG counts were going up, BUT they weren't doubling, almost, but not quite like they should be.  With that and the pain I was in, the doctor said these were indications of an ectopic pregnancy.  After seven days of blood draws, the doctor thought it best to terminate the pregnancy before there was any damage to my fallopian tube.  What does that mean??

You mean I have to willingly and knowingly make a concious decision to terminate another pregnancy.  The doctor explained that there was not going to be a good outcome to this pregnancy, especially if I continued on and ended up with a ruptured tube.  So, to preserve my fertility, if you can call it that, she ordered a Methotrexate injection.  I had to go to St. Ann's chemotherapy department for the injection.

When they took me back to the treatment area the nurse explained the side effects and then said we should wait a year before trying to conceive.  WAIT!!  I wasn't told that.  Do you know how long we've been trying to conceive without success.  So, she phoned my OB/GYN and I talked, sobbed, and listened to her.  She assured me we wouldn't have to wait a year, at least 3 - 6 months.  She explained there needs to be enough time to make sure there are no remnants of the pregnancy left and that the medication has had time to leave my system.  After the injection, I had to go in once a week to make sure the pregnancy hormone levels dropped and continued to drop indicating the termination of the pregnancy.  I was cleared of the pregnancy in mid January of 2005.  We lost another baby.