Wednesday, May 10, 2006

Trying to deal

It has been forever and I really needed some time to work through things in my brain.  I have been busy with work but my life has been a disaster with regards to treatment. 

I stopped writing a while ago because I was so furious that I couldn't seem to write without a burst of rage in my head.  My face gets hot and I feel a little lightheaded whenever I get this angry.  It all started because of the CDC report.  We had decided on a clinic originally, primarily based on convenience and ease of getting an appointment.  The closest clinic could get us in in ~6 weeks while the 'better' hospitals couldn't let us in for 4 months.  Since that seemed like forever while we were still naive about treatment timelines we chose the easier site.

We still tried to ask the right questions, obviously the one about success rates came up.  We were told that they were 'about 40%' which is pretty average to good.  So we figured that if their success rate was pretty much where you would like it to be, then this clinic was fine.

Well, then the CDC report comes out.

Now, first of all, I am 33.  I was 32 when this all began.  I was told that since I am 'so young' to be doing ART that the eggs are no problem.  The embryologist told me that my eggs were very nice and young looking. 

The CDC report says that their success rate of live baby is 24.6%.  This number disgusts me.  For so many reasons.

This is SIGNIFICANTLY lower than what we were told verbally.  It is the worst number in the state in fact.  I was so revolted and angry.  I couldn't believe the betrayal.  These people will tell you anything to get you into the clinic because once you are in it is difficult to leave.  You need to find another doctor, get into another facility, and in our case, figure out how you are going to get in and out of the city 30 miles away while still holding down a full time job.

When I confronted the doctor about this I was told that at that time there was a different embryologist who was terrible and that they fired her and changed all the lab personnel.  Supposedly their numbers are now around 40%, but how am I to believe that?  I called the embryologist and the doctor told me to request their latest numbers and she never called me back.  I tried repeatedly to find out their real statistics and hit a roadblock on every front. 

Even our local paper did an article on the economics of fertility and mentioned that our clinic had the worst stats in the state.

Of course at this point, we have already done 3 IVF cycles, 1 IUI, we had gotten pregnant once for about 15 minutes and had to wait 4 months after the DNC to be able to start a new cycle.

During this time, I couldn't even think about a new clinic, and new doctor, another cycle.  My head was filled with grey clouds and nothing broke through. 

I finally called the "best" clinic in the area, at least the one with the highest success rate.  If I knew what questions to ask, we would have been here earlier, so now the 4 month wait at the beginning might have been nothing.  We might already have a child, or at least been pregnant instead of meeting all new doctors and figuring out an entirely new system.

While waiting for our appointment, I still had enough time to do another cycle, so we did.

What a disaster, there were signs everywhere telling us to stop, but we are stubborn.  Very very stubborn.  We don't allow a lot of roadblocks to slow us down any.  In fact, H believes that we can just plow through this 'fertility problem', but that is story for another day.

We began the cycle and were told that at this point we should think about using donor sperm to determine what the problem is.  H's morphology numbers are low, but we are doing ICSI so theoretically we should be able to pick the best and brightest of the lot for implant.  Normally in our cycles we find a high percentage of the eggs fertilize, so another reason to think that maybe the sperm numbers aren't as bad as they look. 

My eggs on the other hand, (just as an aside, I have always known that I would have trouble getting pregnant, I have known this since I was a child, now back to our story), I seem to produce a fair number, somewhere in the vicinity of 20 eggs/retrieval.  But unfortunately only ~50% of them are mature.  I have had a problem with this but was told that as long as we were at 50% it was considered a success.  We then get about 90% fertilize, so that is great.

But then they start dying.  By the 3rd day, most of the embryos have achieved a significant amount of fragmentation, and we have never frozen any embryos.  So we are day 2 transfer people, but even then the embryos start to fail.

We discuss this with the embryologist and she ran a DNA fragmentation test on H to see where his sample falls.  He definately has higher fragmentation than is considered normal, but not so far that it is impossible to get normal samples.  She swore to us that this was a sperm problem.  She told us that she had a 'feeling about this stuff'.  She knew that what we had to overcome was a sperm problem.

On to the cycle.  I did everything exactly as before, but this time only got 10 eggs, and only 6 were mature.  We got a donor sample to use as a comparison to H to see where the problem lies.  A few days before transfer we spoke to a different doctor and he flat out told us that if I were older they wouldn't even be looking at H as the problem.  He felt that these were all an egg issue, but all along our doctor and the embryogist told us that it was the sperm. 

We split the sample and did 3:3.  Of each only 2 fertilized and I had to call on the second day (they hoped to hold off until day 3) to find out their status.  I was told that they would look and call me back.  I was called ~45 minutes later and asked how quickly I could arrive.  All the embryos were failing rapidly.  Of each group, one had already stopped dividing and the other was fragmenting.  We almost didn't go in at all, but it seemed so wasteful to not even try.  When I was on the table for the implantation, our doctor said "Well I guess this means it is an egg issue"  Thanks for the newsflash!!  When I looked up egg quality there are 5 signs, I have 3 of them and the last one is that you are over 40.  So really I only miss 1 of the possibles.  How is it that I can find that is 2 minutes, but it takes the doctors 15 months to figure that out??

By this point we have met with the new clinic and they have given us new hope.  Though really, we need to define hope here.  H is now all gung-ho that the first cycle at the new facility will be the one and I am so deeply into depression that I can't even see the light.  There are a million things they want to retest, and discuss and they want to do a completely new cycle.  God knows if this will change anything, but at least I have seen 10 different doctors and nurses to feel like there are more minds at work on this problem.

Of course you know what happened next.  I went for my HCG test already spotting.  I knew what I should feel like, and I knew that I did not feel that way.  I knew the answer before the nurse called.  Speaking of nurses, the nurse who called me is very kind, but as I pointed out to her when I went in that morning, she was the only one left who worked there when we first started at the clinic.  I have lapped all the other nurses there.  I think if a patient is at the clinic longer than the nurses, maybe that is a sign of a real problem. 

Now I am in the new clinic.  They are running test, test, test on me and I hope they can tell me what the problems are, but I dont' know if I hold out a lot of hope. 

I will try to keep you updated. 


Nico said...

I am so sorry that you've had to deal with all this effing miserableness. I don't know how you could not be depressed with all the crap. I really really hope that you can get the testing done in short order, and move on to a new protocol that will work! Keeping you in my thoughts...

Rebecca said...

I am so sorry you've had to go through all of that with your first clinic. Hopefully you'll have a much better experience at your new clinic, and they'll be able to come up with a plan to address the egg quality issue.

Rebecca said...

I don't know if Arimidex is typically given to postmenopausal women, but it is one of the drugs often prescribed to women after they've had breast cancer if their cancer was hormone receptive.

For men with infertility, it's considered an "off label" use. My understanding is that some of the testosterone our bodies have is converted into estrogen over time. Arimidex blocks the testosterone from converting.

I would imagine that whether the drug would be beneficial or not would depend on the reason for your husband's low sperm count. When my husband was first diagnosed, his testosterone level was about 130, with the normal range for that lab being 260 to 1,000, so his level was pretty low. However, it still may be worth a try even if your husband's testosterone level is normal.

I think Arimidex is slowly becoming something that more infertility urologists prescribe, but I don't think it's commonplace among them yet, so you may have to look to find one who will prescribe it. I don't know where you live, but I think the infertility urologists at Cornell have prescribed it for some of their patients. If you want the name of my husband's urologist, e-mail me privately at I don't know if he does phone consults, but it's worth calling to find out, or maybe he can refer you to a urologist in your area who he knows has prescribed it.

A couple other things to know about Arimidex: It can raise your husband's liver enzymes to abnormally high levels, so he should have bloodwork done to check that every month for the first three months, then every three months after that. If they do get elevated, they usually go down when the Arimidex is stopped. (This happened to my husband a year after he started taking it the first time, and his enzyme levels returned to normal within a month of stopping it.) Also, it's common after a while for the effects of the Arimidex to wear off and their sperm counts return to pre-Arimidex levels. For some men, it happens in just a few months, and others go for a couple of years before the counts start to decline. So if your husband does go on it and it does improve his counts, have him cryropreserve several samples while the numbers still look good.

I hope that helps. Sorry to write such a novel! Let me know if you have any other questions.

- Rebecca

Thalia said...

How awful, Nicole, it's a nightmare that you have been through. I hope that the new clinic can help - I understand that different protocols can be used to help egg quality so hopefully that will have some effect.

J Fife said...

This is unbelievable! All of your emotions are justifiable. I'm so sorry you've had to go through all of this. I hope everything goes much smoother at the new clinic. Good vibes and hugs your way...