Tuesday, 26 February 2013

Now We're Getting Somewhere

If you've been following along in the incipient stage of this blog and reading my rants and raves, you'll already know that I attribute all of my misfortunes to the NHS rather than my own dysfunctional lady parts. Well ok, not really. But truth be told, I haven't often felt very cared for, or my medical or emotional concerns very attended to in my recent dealings with them. But today, I am here somewhat sheepishly but delighted to (semi)retract my statements of discontent.

This morning we had to make a visit to our GP office to sign paperwork for the referral to a specialist (other than the one I'll finally see in a few weeks to discuss my polyp). We also had to schedule updated CD3 and CD 21 bloodwork, so that's happening.

The appointment didn't start so well. I have been peeved with this process, with the accumulation of too many months of inaction and too many disinterested medical practitioners, and so I think my default mode has recently been one of snarkiness in these situations. So when we sat down with the nurse practitioner to complete the intake questions, and her first one was 'Do you have any children?', my response in the negative - 'That's why we're here'. (Duh.) - might have been a little too far on the brittle crackly side of dry. H silently implored me from over the unsuspecting nurse's head to behave myself if we want to move forward with what we want to move forward with. (He has this whole crazy philosophy of not pissing people off if you want something from them...I know, right?).

OK, so we went through all the questions, reviewed my paltry history - 3 pregnancies, 0 live births - we scheduled the bloodwork. The nurse practitioner was a bit brusque in her manner, but I'm ok with that as long as we get something done. And then while she was sitting there appraising the situation, things started to shift, almost imperceptibly. She said she wondered why we were actually being referred for infertility rather than recurrent loss, because although there are clearly subfertility issues that are preventing us from moving forward, most of these seem to relate to the viability of our pregnancies and not, well, complete lack of conception. Good god, someone who not only actually took the time to read and think through our entire medical history, but who saw fit to analyse it and prescribe accordingly!*  Bells started going off in my brain. We told her that those were in fact our sentiments exactly, but that in our previous location no specialist support had been offered for RPL, and thus we'd been referred for fertility.

(A little background is probably in order here. On our last and only visit with a fertility specialist last autumn, we were told that our problem was not really one of fertility; that in fact we both looked fine in that department and clearly could conceive, and that our real issue was sustaining a healthy embryo/pregnancy. Then this advice was given: the doctor told us that we should keep trying naturally for 6-8 months and if we conceive in that time we should call right away so that we could be provided extra monitoring and support and that they might be able to get to the bottom of why I keep losing babies. Oh no wait that's my best-case-scenario brain talking! What they actually said was if, after a conception, I end up miscarrying again (reassurance and optimism incarnate, they were), we should 'save the tissue in a pot in the freezer so you can bring it in for testing at your next appointment'. Eight months later. Yep. Also, they said that after those 6-8 months - and remember they had just said conceiving isn't the issue for us - we should consider moving straight on to IVF. Whaa? Huh? Anyway, the overall impression was one of a conveyor belt, one-size-fits-all treatment regime. Not reassuring. And clearly not very compassionate.)  

In contrast, the nurse today said that she wanted to make sure we got the appropriate care, and not send us on a wild goose chase. She said to leave it with her and she'd make the right enquiries about where to start. This is, in a word, huge. At that point, as we were getting up to leave, I could already have hugged her. But as we were tripping over ourselves thanking her - you become so grateful of the simplest human gestures in these moments - she said, almost as an afterthought: 'I've been through IVF myself, so I know how important these things are'. She understands! I love this nurse, brusque manner and all. For this one appointment, the first time anyone has paid us and our concerns and our medical issues enough attention to really get things done, I love her. I would book all my future appointments according to her work schedule if I could.

So now we're awaiting a referral that might actually bring us towards some of the answers we need, and more important, a game plan for the future. I don't kid myself; this is still the NHS and that means a big waiting game for now, but to at least be heading in the right direction feels like a watershed. I'll nag about what's happening with the referral when I go for my CD21 bloodwork on Thursday and then, hope that we're on the road. After all this waiting! After so many months of feeling like we're stuck in a pinball machine, being randomly zinged from pillar to post! This could mean more coordinated care with, for example, the specialist I'll see for my polyp removal/investigation, as they're all located in the same women's hospital and often work together. If we do ultimately need to go down the IVF route - realistically, we may still be looking at this later in the year, considering how ancient we are - again, all the care would be coordinated. And the best thing is, with this arrangement, if we were lucky enough to get pregnant on our own, according to my new favourite person, there would be early and extra monitoring available. (First trimester care generally suuucks here, in my experience). Seriously, this is crucial for my emotional health, if not my physical.

After so long kinda spinning our wheels, I'm a little bit hopeful and so heartened by such a simple exchange. This feels like progress. This feels like a beginning...of something.


Fingers crossed. Source.


* Is it just me, or is it often the less acknowledged, more poorly paid professional who steps up on these occassions?

18 comments:

  1. Oh I so feel you. I am incredibly grateful for social medicine, really, I am. But, I think more personal care could be given (as in, can you read my medical story 2 min. before I go in?).
    In any case I am glad you are going somewhere and I hope a specialist will be able to assess your possible issues and hopefully solve them. I really hope you will soon have a healthy pregnancy come to term and that your baby will be in your arms soon.

    We just had a difficult time at the doctors’ office. Long story short we are in the middle of a IUI cycle and my eggs were supposed to be “ready” to stimulate ovulation today. It turns out I started ovulating by myself and now we are going to get the insemination done tomorrow “blindly” (because we don’t know if we will catch the eggs (2) within the 24 hr period in which they live.) It should have been done today but the lab did not want / could not squeeze us in today, which makes me crazy because I’ve been at a lab, done exactly what they do and I know that 1 extra sample does not change your day at all. I had a good cry and a fight with the nurses/receptionists/doctor (the latter who finally listened to me) because this all happened pretty much because of negligence (yesterday I *felt* I was about to ovulate, my ovaries felt swollen, not painful, but big. I had just had a higher dose of follitotropin for 2 days in a row for the first time and I always ovulate on the same day of the month, my cycle is extremely regular, so I expected / knew this would happen.) When we explained all of that to the doctors/nurses and requested an appointment for yesterday, they did not consider necessary that I come and kept my appointment for today. Now we might just be late (or maybe not because this is just shooting at random).

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    1. I'm raging here with you Amanda. So sorry that negligence keeps you on hold, how frustrating and disappointing. I sent you an email, but am sending lots of hugs now as well.

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  2. Yes!!! This is such a good lead for you guys. I'm so pleased that you found this brusque nurse and her invested interest in your specific situation. What a relief!

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    1. It IS a good lead, and we're certainly hoping it's the start of a better care phase. Thanks for your support!

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  3. (putting aside my critical thoughts on whatever jerk told you to put your tissue in the freezer for 8 months, because ahem, the expletives would be prohibitive). So, so glad to hear you've found someone who gets it - who sees you as an individual case and not one of many on the conveyor belt of infertility. Fingers crossed for continued forward progress!

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    1. Yeah, I woulda had a few choice words for that doctor too, but at the time, I was like a deer in the headlights in the face of that kind of 'care'. Thanks for keeping your fingers crossed!

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  4. I'm so glad you found someone who actually thinks about YOU as an individual instead of one of the many. I live in the US, and still find most doctors try to follow one protocol whenever someone can't conceive or is having repeated miscarriages. At least when you get to a specialist, if you're assertive (and nice), I've found they pay a little more attention.

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    1. I guess they kind of DO start to work by rote, as we are all at risk of doing...But what I can never understand is how people in that line of work can become so devoid of common decency. I wish I could concur with your assessment of specialists, but I often find they are worse than anyone - Prima Donna Complex, I think. Let's see what's in store.

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  5. What great news! I hope the nurse is able to get you headed in the right direction. It's really so great when someone finally wants to help you and not just move you through the system.

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    1. It's the personal engagement that eventually makes the difference, isn't it?

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  6. I have found, generally, in my dealings with the NHS that there are some gems of nurses and doctors out there, they are just battling constantly with the lumbering, paper pushing, bean counting beast.I am glad you were heard and understood, it means a great deal doesn't it.

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    1. Like in any other aspect of life I suppose, it is these gems of individuals that make it all so much better. It really DOES mean so much.

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  7. I am so happy for you that you are finally moving forward. I know how frustrating it can be to just spin your wheels. I am looking forward to reading about your new developments!

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    1. Thank you so much, we're quite pleased too. I hope to have lots of developments in the future to update you on! And I'm excited to hear that things are gearing up for you as well!

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  8. So thrilled that you've connected with a nurse that gets it. Fingers crossed that she'll be able to work some magic to get you seen by the doctors you should be seeing.

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    1. Thank you Brianna, I certainly hope this will be the beginning of a new start for us.

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  9. So glad to read this, that someone picked up on what you actually need.
    And it's appalling that you were supposed to keep the tissue from a possible next miscarriage, what a horrible thing to ask you to do!

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    1. You know, I heard my son, who I held in my hands before he died, referred to as 'products of conception' by the hospital staff where I delivered, so as appalling as the above is, I guess there is less that shocks me now. What I think I'd like to do next time I hear such horrible comments is tell the speaker that I have an angry posse of fellow infertiles I'm bringing to visit their wrath on the establishment!

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