Monday, June 30, 2008

So, let me clarify...

I swear, I am not trying to be negative here and the definite piece of information we got from the hematologist is good - the part about the kind of the anti-M antibody I have not being the one that is a problem in pregnancy!

But, we haven't really been cleared yet for IVF #6 in August just yet. First of all, the "theory" that the hematologist has about the mycoplasma infection and the cold agglutinin disease needs to be proven. Assuming the gallons of blood she took last week do prove that, then, yes, we will be cleared by her, but, we won't know that until later this week.

And, we need to know what, if anything is going on with my heart. I'll be having all of those tests next week. They would have been sooner except that dastardly institution known as insurance denied 2 of the tests the cardiologist ordered. Apparently, having low pressure in your legs AND chest pains (albeit, chest pains that now seem to be completely under control since starting the GERD medicine) does not mean you need important tests if you are a 39 year old woman who "shouldn't" have a heart issue. Well, the doctors office fought, the insurance company convened a panel, and has, as of this writing, approved one of the 2 previously denied tests, and we're expecting the other approval later today.

Assuming we get good results from both the hematologist and the cardiologist THEN we will be able to move forward in August. Still saying lots of prayers here.....

Thursday, June 26, 2008

Roundup of the doctor visits

Finally, we have some progress on the medical front.

I wrote about the cardiologist the other day. The good news is that, now that I "know" that the chest pains are GERD (gastroesophageal reflux disease), I can totally tell that it's reflux and not cardiac chest pains. The bad news is that, even on the medicine, it's not getting any better yet. You take the pill once a day and, I would say, it gives me some relief for about 12 hours, but, then it's pretty bad again. I'm giving it some time to see if a) it takes some time for the med to build up and b) if my stress eases, so will the bad reflux.

The other struggle on the cardiologist front is that insurance has not approved a couple of the tests he wants to do. It's not surprising, given that I'm a 39 year old woman, but, c'mon, chest pains and the other thing he found should be enough. Apparently it now has to go to a committee at the insurance company who will review everything and make a final decision.

The rheumatologist was OK. All of the major tests came back negative! The only wacky thing is that my sedimentation rate continues to rise and he doesn't know why. But, he kind of threw that ball into the court of the hematologist, who I saw today.

And, boy was he right in throwing that ball. Finally, finally I have some good news!! The hematologist DOES NOT think all of the weird blood things amount to a scary disease. She said that all of my weird blood results - Anti-M, sed rate, CRP -are all connected. Finally, we know that! There are two types of Anti-M antibody (which I originally wrote about a few weeks ago) and I have the type that IS NOT a problem in pregnancy! And she has a theory about why all of the results skyrocketed in the last two months and, are you ready for this, it's linked to my pneumonia in May!! Her theory is that it was caused by a rare infection and not the usual way you get pneumonia. In fact, she said that she is fascinated by my case because of all of the different components of it and how they all came together to give us the results we have now. She kept telling me how fascinating and rare it is to her!

Anyway, she took a lot of blood, and is running some really weird blood tests - said by both her and the woman who took my blood. They actually had to call the lab about one of the tests because they run it so infrequently. Cool, huh?

So, if these tests prove her theory, we should be in the clear! She said it should all clear out of my system in 3-4 months (I'll have to be monitored) and, most importantly, she sees no reason not to move forward with IVF #6!! I'll always have the anti-M, but, it won't be a problem. If her theory is not proven, she'll have to run some more tests, but, for right now, I feel positive and encouraged!!

The reflux and possible heart things are new, but, oh, it was so wonderful to sit with a doctor who could tie all of the weird blood results together that have been causing me such worry over the last couple of months! FINALLY!

Monday, June 23, 2008

Doctors, doctors, and more doctors

I have always been pretty healthy. Other than a weird thing with my liver a few years ago, I've never really had to go for more than regular checkups. Doctors scare me, so, going to the RE and beginning regular visits and treatments was a pretty big thing for me. Now, that feels like nothing.

A number of weird medical things have happened over the last couple of months that needed to be checked out. It's all way too much to write about in one post, so, I'll cut to the chase.

First of all, when I got my medical records from Clinic A to send to Clinic C, I noticed something strange. Something called Sedimentation Rate was elevated and rising. The bloodwork at Clinic C showed it still rising, so, I was referred to a rheumatologist who took a lot of blood last month. I go back to him for a follow-up tomorrow. I wonder what he's going to have to say. As long as he doesn't want to do anything invasive. That's scary.

As I've blogged about previously, pre-op bloodwork before my hysteroscopy showed that I have the Anti-M antibody. I have to see the maternal hematologist on Thursday of this week. I have no idea what to expect there, but, ugh, it's another doctor.

Glenn and I affectionately dubbed this week "the week of the -ologists" because I have appointments with both the rheumatologist and the hematologist, at the direction of the reproductive endocrinologist!

Ha ha ha, funny, right? Well, apparently that wasn't enough for me. For a couple of weeks, I've been having chest pains and arm pains. I saw my internist last week about it and we both agreed I should see a cardiologist, which I did tonight. The good news is that he doesn't think it's cardiac in nature. He thinks it's classic esophageal reflux. He prescribed something for it and, I have to say, I took it about 45 minutes ago and, while I don't want to say this too loud, I'm noticing now that the pain seems to be less (shhh, we don't want to tempt it to come back....). The iffy thing is that he noticed something that could be a problem and has ordered a bunch of tests, which I'm hoping to get done this week. But, I guess I have some peace of mind that he doesn't think there's impending danger.

I may be overly sensitive given Glenn's heart attack, my dad's recent heart stuff, the fact that my dad was originally diagnosed with heart issues at 39 (guess how old I am now), and, of course, the symptoms I've been having. Some might say stress is contributing to the symptoms. What, me, stress??? Um, yeah!

So, the week of the -ologists has officially begun - even more -ologist-laden than originally planned! By the way, have I mentioned that I hate doctors?

Thursday, June 19, 2008


I know, you're all expecting me to write something sad here about how hard it is to deal with the anniversary of a failed cycle or something worse.

Nope, not this time. Today is my 3rd wedding anniversary! As I write this, 3 years ago, at this time, we were dancing at our wedding, with all of our loved ones around us, wishing us well!

I don't think anyone could have predicted all that we've gone through in these 3 years, or the things that are still happening that we have to deal with as we enter our 4th year of marriage.

I've aged these 3 years - not just chronologically, but physically and emotionally. Do I wish that we hadn't gone through these things - yep. I know that people say that the experiences you have in life make you the person you are. Sure. I get that. But, if I could re-write the past 3 years, I would have gotten pregnant the old-fashioned way and wouldn't be posting this right now because I'd be out dropping the kids off at grandma and grandpa's so that we could celebrate our anniversary alone.

On the flip side, I truly believe that the things we've gone through have made me a stronger person and us a stronger couple. I wouldn't want to go through them with anyone else and I guess that sums up these three years pretty well.

I love you Glenn, and still look forward to what tomorrow, and each day after, has in store for us.

Sunday, June 15, 2008

The power of erasing

As you all know, June 14th was a date burned in my memory, one I hate remembering, but, in a way, don't ever want to forget.

As you also know, it was the most prominent date on the calendar, if only to my eyes.

I sort of fixed that today. We have a white board/wipe off calendar on our refrigerator. It's kind of cool - each week is a separate piece, so, at the end of that week, you erase everything and move it to the bottom, move the other pieces up, and you basically have a rolling calendar.

This morning, I was updating some events in the coming weeks and, of course, yesterday, June 14th kept pulling my eye back. Nothing was written there except for the date, but, I couldn't stop looking at it. So, in an act of internal defiance, I erased the 14! Yep, just completely erased it, leaving a dateless day! And, you know what, I laughed at my arrogance at thinking I could obliterate a whole day, even if it was only on my refrigerator, but, more importantly, it felt great! What power!!

Even now, sitting on my couch, looking towards the kitchen, I can see the calendar, but, there's no 14 glaring back at me!! It's been wiped away!

Makes you wonder what it would be like if our brains worked like white boards, hmmm...

Friday, June 13, 2008

I hate calendars

That sounds pretty dumb, doesn't it? Why would anyone hate a calendar?

As kids, calendars were great. You circled your birthday, the days off from school and, the best of all, the last day of school (and the first day, if you were a geek like me and couldn't wait to go back!). Birthday parties for your friends made it onto the calendar. Vacations were on the calendar. All good things!

Now, I look at my calendar and I just want to scream. First of all, I don't know when people in the business world decided that holding 7 and 8am conference calls was acceptable, but, look at my calendar and you'll see that they've become a regular occurrence. I have at least two a week. My days start with these hard-to-even-concentrate-this-early calls, followed by meeting after meeting after meeting.

Then, there are the upcoming doctor appointments on the calendar. Glenn and I have dubbed the last week in June "the week of the ologists" because I'm meeting with the rheumatologist and the hematologist and have to call the reproductive endocrinologist and report what happens at both.

But, it's the events that are not written on the calendar even though we know exactly what day they belong attached to that are the hardest.

Tomorrow, June 14th, was my due date. Of course, there is nothing on any of my calendars about it, but, when I look anywhere in the vicinity of a calendar, it's as if every other day fades away and tomorrow jumps right out. I can't even go into what I'm feeling right now about tomorrow. I don't think I have to.

Our anniversary is next week, June 19th. For a short time, we were going to have a baby before our 3rd anniversary. Before Glenn's 48th birthday on June 28th. Will I always look at a calendar and see only June 14th, while those other dates fade away? I don't know, I guess only time will tell.

Oh, to be a kid again, where looking at a calendar elicits a sense of excitement and anticipation at what's coming up.....

Thursday, June 12, 2008

My diagnosis, in numbers

Our new clinic does not accept insurance or submit anything for us, so, I was sitting here filling out the insurance forms for the $7000 we've already spent there (and, we haven't even cycled yet!!) and noticed all of the different diagnosis codes. Of course, I decided to look them all up (and, of course you all knew I would do that, didn't you?).

256.39 - Ovarian failure (VAGUE)
218.9 - Leiomyoma (fibroid) of uterus
628.8 - Infertility, female, age-related (VAGUE)
615.9 - Unspecified inflammatory disease of uterus (VAGUE)

and, my favorite:

629.81 - Habitual aborter without current pregnancy

Nothing we didn't know, but, interesting to see it spelled out.

Monday, June 9, 2008

The Renewal of Spirit

There is a prayer that is done in synagogue called a misheberach. This prayer is done whenever someone is called up to read the Torah, asking for G-d's blessing on the reader and his family, but, in most synagogues, at a certain point, the rabbi or cantor will ask the entire congregation if they have anyone they would like a misheberach made for. Depending on the tradition in that synagogue, the person will either walk to the front or stand at their seat and announce the name of someone they feel needs extra prayers, particularly someone who is ill, and the leader of the services will say the appropriate prayer.

In 1993, a musician by the name of Debbie Friedman released "Mi Sheberach", a short version of which is now sung in countless synagogues. With both hebrew and english lyrics, it gives the entire congregation an opportunity to offer up their own prayers for their friends and loved ones, in song.

One of the phrases in the song asks G-d to bless those in need of healing and offer them a renewal of body and a renewal of spirit. The latter phrase - the renewal of spirit - popped into my head last night and has taken up permanent residence there.

I, along with Glenn and my parents, volunteered at the 2008 New Jersey Special Olympics this weekend. Our assignment, which we've done for a number of years, is to work the Track & Field Awards area. The athletes compete in their events and come over to the awards tent, where they wait until the paperwork with their times comes over. When it does, volunteers put the awards (medals and ribbons - EVERYONE who participates receives something), the athletes are lined up, walk out to the podiums, and receive their awards from some wonderful New Jersey police officers, usually to the adulation of their friends, family, teammates, volunteers, fellow competitors, and, well, everyone in the general vicinity! The man who usually announces all of the athletes and awards was not there this year and I was asked to step in. This was right up my alley and I was so incredibly honored to be able to recognize each and every track and field athlete, for each of the events, over the two days, with the honor and respect that each deserved.

For those who don't know, it was pushing 100 degrees in New Jersey this weekend. The games were outdoors and, I have to say, it was brutal. I worked up a sweat walking a quarter mile to the bathroom (heck, I worked up a sweat sitting and working the microphone!) and, yet, the athletes, each and every one of them, still gave it their all and, in many cases, performed better than their qualifying times! You cannot watch them without being moved in ways you didn't think possible. Whether they were receiving a ribbon for finishing in 8th place or a gold medal for finishing first, they showed the true spirit of the games.

And, while I still have my worries about the medical things going on with me, I have to thank the athletes of the 2008 New Jersey Special Olympics, for, to say I experienced a renewal of spirit this weekend, would be a gross understatement. I now know what Debbie Friedman meant when she wrote that line. My spirit has been renewed.

Friday, June 6, 2008

The Good, the Bad, and the Ugly

Yep, I'm sort of re-using that title from a couple of weeks ago, but, it's appropriate for what I'm posting today and I just really don't have the energy to come up with something else.

The Good
That thing that they removed during my hysteroscopy/D&C on Friday was NOT cancerous or infected! It was simply an overgrowth of endometrial tissue. This was a huge, huge relief!!

The Bad
In my routine pre-op bloodwork, they found that I have the Anti-M antibody. My limited understanding at this time is that it is of no risk to me. The problem is that it can attack the blood of an unborn baby, through the placenta, and cause hemolytic disease to the baby, resulting in anywhere from the need for a blood transfusion to death. This is basically all that Dr. Expert told me about it. He thinks the risk is not too high, but, he has never seen this (in all of his vast years of experience - great, I have something that weird) and he wants me to see a hematologist. He recommended two in the city who specialize in maternal hematology so, I'm not going to play around and look for one in Jersey and I'm going to go see one of them. He said they need to assess the level of risk of me having a baby at all!

And, if the hematologist says that it's OK to go forward (with major caution - I will always be a high-risk pregnancy because of this), well, then, that still doesn't solve the whole infertility problem and I'm still putting all of my eggs (so to speak) in the basket of IVF #6 with the prayers that it works.

If anybody knows ANYTHING about the anti-M antibody, either in pregnancy (which you can find googling) or just in general, I would love to hear it, especially if you are TTC and had to meet with a hematologist yourself about it.

The Ugly
Me. I'm really trying not to sink into the depths of despair, to be cliche, but, I'm finding it difficult. I have another little blood issue that I haven't discussed here yet because I'm waiting for more information from a rheumatologist on it, but, between that and this and, oh yeah, still infertile, it's really hard not to be, I don't know sad and overwhelmed by it all. I have really felt that I've handled 3 years of infertility, 5 attempted IVF's, 2 cancelled IVF's, 2 IUI's, an ectopic, and a m/c pretty well. I guess finding out about these two blood things, particularly this last one, so late in the game, after having been through so much already, and wondering if my first clinic and Dr. Hope should have picked up on either or both of them, is really enough to make me want to yell UNCLE already and just go into hiding for a while.

I'm not going to. I'll push through this and see what the rheumatologist and the hematologist have to say and move on to IVF #6 if everyone agrees it's OK to do so. I'm just feeling really emotionally raw and ugly right now....

Tuesday, June 3, 2008


It's good to have diversions when you're worried about something - gives you something else to think about. I spent Friday afternoon, after surgery, thinking and sleeping. Too much thinking.

Saturday Glenn and I had dentist appointments. I went first, so, while Glenn was getting his teeth cleaned, I decided to treat myself to a manicure and spa pedicure. It was just glorious and I love looking at my little pink toes! We then went and had a nice lunch and to the supermarket for a few things and didn't get home until late in the day.

Sunday was the spring concert of the Jewish People's Philharmonic Chorus and it was simply a wonderful day! I have been a member of the chorus for 4 years and love, love, love singing with them. We sang at Symphony Space in NYC, to a crowd of 600+ and, I'll say it again, it was just a wonderful, albeit exhausting, day! They should add stand, and sing, and hold a binder full of music and emote for 3 hours to Wii-fit because it really is a great workout! I then had dinner with family after the concert and it really was a lovely day!

Yes, there were things that reminded me of my upcoming test results and my infertility, as there always are (I started to bleed again during the concert, someone's sister gave birth on Friday to donor egg twins, the ladies at the nail salon kept asking if I have kids, we sang about children being born and growing up, as well as a famous yiddish lullabye), but, it was just great to be busy and have some diversions from my thoughts.