Getting off the Rollercoaster - Going for Adoption

Monday, February 20, 2006

Hooray, hooray! Hurrah, hurrah!

Blood test results today – FSH/LH at 7.2 and 5.9 respectively.
Even if FSH as little as twice the LH is diagnostic, this is now effectively ruled out.

So now to Thalia’s question.
Why am I so sure that my problem is NK cells?
I guess if I am really really honest,
there is some superstition involved, but then, having had no believeable diagnosis (other than my age, and I don't believe that) so you are actually left either having no reason for why these miscarriages continue to happen or you believe something.

For background, and colouring my judgement you may think, is that I simply do not believe that I am too old to have children, or that fundamentally the eggs I am producing are not good enough. For my age I have already managed to get pregnant far more frequently than would be predicted statistically. At the IVF clinic I was told that each cycle I only have a one in twenty chance of even becoming pregnant at my age. I have been pregnant 5 times since November 2003. My own mother had 6 children, and she was 44 when my younger sister was born. My mother, now 85 is still fit and healthy. All the tests I have had would back up my feeling that I am not 'hormonally old'. My progesterone levels are good, my FSH and LH levels (now retested) are very positive, and not showing signs of my age. I realise I haven't got years and years to hang about, and all this delay is worrying the hell out of me, but I am not too old at the moment.

On the day I was originally discharged from my local hospital by Dr Nice, the consultant, I happened to be listening to Radio 4 and there was a brief news item about new work on recurrent miscarriage. It was the first time I had heard about NK cells, but started looking into it. It was a lightbulb moment.

When I started to realise that the immune system was suspected of rejecting the embryo as a 'foreign' body, - it just made sense to me. I know I have an strong, (even over-active immune system) - I work in an air-conditioned office with up to 15 other people who all get colds which go around and in over 3 years I have NEVER been ill. I don't know if it is because I keep so fit, I know if you get over-fit it can actually have the opposite effect, but even R is very rarely sick though he did have a slight cold a few weeks ago.

Anyway, the fact remains, something in my blood certainly fights off infections. This seemed to me an indication that NK cells could be the issue, and I wanted to get tested. When I got the test done (which I believe is not available on the NHS, so had to be done privately, but anyway I had just been discharged from the NHS hospital and referred to Dr ScaryHair) it was the FIRST TIME I had had any test back which was not described as completely normal. It seemed it was the first time she had seen a result out of the 'normal' range. It seemed to unsettle her.

And now?

Now I am not sure of anything.

I do not believe I have an 85% chance of having a baby under this new treatment. I don't know if that is because I reason that a doctor who charges for his private patients would say that, or whether it is simply to protect myself from a dangerous hope. I think I do believe that in tests prednisolone and / or treatment with blood thinning medication does or has helped many women to overcome the problem of recurrent miscarriage.

Maybe it has nothing to do with NK cells, but that is basically irrelevant. One woman had NINETEEN MISCARRIAGES before undergoing prednisolone treatment. Women on recent trials have had an AVERAGE of 6. This is not just snake oil.

I am not advocating this for use alongside IVF or anything, but really, what have I got to lose? I have lost 5 pregnancies. 5 babies I thought I would have, and I didn't. And it may be that prednisolone will suppress my Natural Killer cells in my over-active immune system and my sixth baby will live. Or maybe not. I am slightly offended that I am described as a vulnerable (and by implication, a bit weak and a little stupid) by some. I think that although I hope that this treatment will work (of course) I am prepared for failure. Sometimes I get a glimpse of that. The realisation that it's not just no baby again this time, it could be no baby, no child, not ever. Of course I am not prepared for that.

One thing Dr X did say, which was so blindingly obvious that I wish he would write it in letters across the sky. The statistics of recurrent miscarriage don't add up. One miscarriage is incredibly common, but two in a row is already unusual enough to point to a problem, so it is already more likely you will have the third. Intervention is required, or the RPL will continue. Time and again I have been told my chances of everything being all right next time is just as good as anyone else. I have known this was not right, that it didn't make sense. Don't believe them when they tell you just to keep on trying. I have to do something and this is what I am doing.

Unless you have any better ideas?

Friday, February 17, 2006

Do we believe in miracles?

Dr X obviously believes in miracles. He seems to have seen a few. He stops miscarriages. They are even making a TV programme about him.
He was kind and listened to the story.
(A big fat clown, he must be 20 stone. Can you take medical advice from a 20 stone man?)
I was calm and didn’t cry.
I gave him my excel chart which shows every miscarriage and the length of every cycle. I like to think of it as useful information.
I gave him the letters from my consultant with test results from all the tests.
I gave him the letter from the last fertility expert, who tried but couldn’t save my 5th pregnancy.
He looked at these, though not all that carefully.
He said my NK result was meaningless, as it had not been carried out by a lab which gave meaningful results.
He said all they got right was the price. £350.
He told me he could offer me treatment – steroids and a blood thinner.
Because of my age and the number of miscarriages, he will not insist that I go through another NK cell test – he doesn’t need it if I don’t feel the need.
I told him, honestly, that I do believe that NK cells are my problem. And even if not, I do believe that blood thinners are effective, for whatever reason.
(see Babyfruit for evidence, if nothing else).
So I agreed to go ahead, and he agreed to treat me.

The cynics will say, desperate woman, money-grabbing doctor. Match made in heaven. The fool is easily parted from her money.

Dr X said I had an 85% chance of a successful pregnancy.
Who knows.

But then, for some reason that I can’t remember, and just before our half hour was up, he suddenly decided I might have PCOS, and insisted I needed a blood retest.
What? PCOS? I don’t have a weight problem (well, nothing significant); I don’t have acne or thinning hair, nor facial hair nor dark patches on my skin.
(See – I have checked PCOS out already). I do have quite long and slightly irregular cycles – they can vary by up to 7 days. But he looked at my FSH/LH test at 4.2/8.2 and said it was diagnostic. Why had this not been picked up? We went back to the letter from my consultant that said we could pretty much rule out PCOS. But Dr X is not convinced.
I can’t believe I so nearly walked out of there with real hope – I felt so cheated by a last minute problem. I only had about 2 minutes during which I BELIEVED I might be able to have a baby, and it was so lovely.
I SO WANT NOT to have PCOS. I have tried 2 tests on the web, and scored very low – really unlikely, but that doesn’t count anyway if the blood test is diagnostic, I suppose. Of course, Dr X has the solution even if the test show PCOS. Metformin, or something – insulin sensitising drug. Has the rather tempting side effect of making you lose weight. But Dr Nice, back at the NHS says it works for some, not for everyone. He was surprised about Dr X’s suspicion of PCOS. Then we looked at my last blood test, which was taken, it transpired, on day 10 of my cycle. Not ideal, apparently. So he scheduled me for a re-test.
Today I get my blood retested. Day three of my cycle. My bleed is heavy and crampy and I am cranky and edgy.
If they tell me it is PCOS, I think I will go and find a stone to hide under.

You have to laugh, really.
Please can I have my miracle, I promise to be good.

Friday, February 03, 2006

Thoughtless and self-centred me!

I have been very remiss, because I have not mentioned how incredibly kind and uplifting your comments have been, and while I have been really pretty low I have SO appreciated the solidarity from 'out there'.

I have been 'surfing' the blogs a little less, which is REALLY NOT because I am not interested - on the contrary, I get really drawn in and involved, and I get really upset and angry for you all when the news is frustrating or disappointing, which it seems to be quite a lot.

And this is really a very short post, just to say that I am visiting Dr Expert on Monday, (I think I will call him Dr X for short) and all my hopes are pinned on him! Well - let me put it this way - if he can't 'fix' me, I think I will probably have to do the puppy thing after all.

But I haven't given up yet. And neither has R, though how he stays so patient, positive and supportive I shall never know.

So the chicken-keeper leaves Herefordshire (with R on hand-holding duty) for the bright lights of London on Monday (Harley Street, no less) so wish me luck!

Shall let you know how it goes. I hope it is going well for you, I really do. Enjoy the weekend.

Thursday, February 02, 2006

In battle with my body - the route to self destruction

One of the effects of this syndrome, (and I’m sure it’s not just me), that there is no-one to blame but your own body. I am effectively in battle with my own body – the resentment, the frustration that something goes wrong every time I get pregnant and in spite of the fact that it is MY BODY, I have NO CONTROL.

This is why I spend so long examining every thing that goes into my body – no additives, but lots of supplements. Aspirin, folic acid, royal jelly, omega oils. Plenty of snake oil.

‘I will control what my body does, I will control what goes in it, and control how it behaves’.

But it doesn’t work. Nothing works.

And nobody is to blame. But this does not compute. I am modern women, programmed to take control of my life. I ‘snap out’ of depression, Ihave a life that is what I make of it. I am not a passive victim. I am strong, I am powerful, I am in control of my life. (Hear me roar?)

So what happens? In battle with my own body I lose confidence. I cannot win this battle and I cannot bear the miserable consequences of NOT winning. Another lost pregnancy. Another nearly-baby we thought of names for, pinned our dreams on, but finished up flushing down the loo. An pitiful, pathetic, enraging end.

Just more anger and frustration directed where? At myself for being incapable of doing what millions of women do, apparently effortlessly. But not me. Not in my body. (Hear me cry).