Monday, January 28, 2013

So we've just got home from the emergency room

Warning: this post contains graphic descriptions and you may wish to click away now.

We got back from A&E tonight at 10.45 after taking hubby in to be checked over as we suspected possible post-operative complications.

To re-cap: the surgery for sperm retrieval was on Friday morning. Hubby worked that night, and also Saturday night. So not resting as much as required, but it was a big job and kind of unavoidable.

There was swelling on Friday immediately from the procedure of course, but it gradually got worse until his right teste was 4 - 5 times normal size. It is now Sunday, 3 days after the op, and this morning when he woke there was additional bleeding/bruising under the skin.

Late this afternoon we were having afternoon tea and hubby said he felt ill. He was dizzy, had shooting pains in his thighs and lower torso. He felt woozy and felt uncoordinated.

I took him home and cooked him dinner while he rested and drank ice water (it's blazing hot in the middle of summer here. Seriously you can get a sunburn sitting in the shade almost!)

He was exhausted, and after dinner I read a bit online about what to check for post-op infection / complications / shock. When he mentioned how yuck he felt with what appeared to be a fever and that there was now pain in his calves as well, I decided it was best to get him checked by a doctor.

We bundled ourselves quickly into the car (forgetting even to close the back door) and headed off at 9pm to the emergency clinic. There are two of these clinics in town and both of them close at 8pm :( So off to the ER we went.

The triage nurse saw us at 9.30, and we were relieved when it turned out hubby didn't have a temperature after all. Maybe just the heat of the day or exhaustion or his body fighting to recover from the op, she suggested. She had a look and made sympathetic noises when she saw the swelling.

At 9.38 we were shown into a private room in A&E, with a nurse appearing to do basic observations and vitals at 9.42. Blood pressure was fine (much better than during the actual SSR that's for sure!) She also had a look, and described other cases of testicular swelling she witnessed, using her hands to indicate the size of a grapefruit (!)

About this time hubby did a count up on the number of people he'd had to "show his nuts to" in a single weekend, not including me. Answer: 6.

At 10.30 the nurse came and asked for a urine sample to test for the presence of blood. When it came back negative, and because hubby was feeling so much better and getting inpatient with having to wait around, we decided to leave at 11.45 and come home. We are literally within 5min walking distance of the hospital so it's not too much drama should we need to come back in a hurry.

The nurse registrar advised us to stay, saying that the burst blood vessel inside could potentially cause blocked nerves. But hubby and I were both satisfied that waiting for the doctor would just waste time as he didn't have a fever, had normal vitals, and would most likely be seeing his GP in the next day or so anyway. She signed us out ok.

What a night. I am absolutely exhausted and I feel simply horrible that hubby has had to go through this whole thing. He makes sure to tell me that the decision to go through with this procedure and the next one is his decision too, and that shit happens. He's looking lots brighter now and is happily resting up in the man cave out back. But we're both glad he got checked, just knowing the vitals are fine is a huge relief, and he did appear quite ill earlier in the evening.

Yeah, so cross fingers we see some actual recovery tomorrow!

Saturday, January 26, 2013

What a surgical sperm retrieval procedure is really like

It is over and it didn't work this time. No sperm were retrieved. :(

We will be rescheduled for another procedure later in the year.

:::::   I started writing this post from a green sand chair in the park, as my husband preps a sound system for a live band Friday night (post-op). There are cicadas and birds and people putting their picnic blankets down on the grass. I am finishing the writing and posting it Saturday afternoon (recovery). :::::

So, they story from the night before...

We travelled up to Hamilton Thursday afternoon before the procedure was scheduled and stayed in the same motel as last time we were at the fertility clinic.

That evening we went out for a large meal at Lone Star and then a bit of a walk around the lake. I met a new type of duck: the Australian Coot!

I felt like I didn't sleep very well. The pillow was too high and the air was hot and humid outside. Putting the aircon on dried the air out and was too noisy to sleep with it turned on.

Turns out I must have fallen asleep in the wee hours because hubby woke up before me at about 6am. He skipped breakfast and I just had quick tea and toast.

We drove over to the clinic for 7.30am (as advised by the nurse who phoned earlier in the week said to do) and when we got there the building was locked! I pushed the call button for Fertility Associates and I could hear it ringing. Right then our nurse turned up behind us and opened the door. Seems that the other nurse who advised us to arrive half an hour early was talking out a hole in her head.

We got in and then waited in the waiting room while the clinic livened up and people arrived. Our nurse took us through to the recovery room (where we were seated both pre and post-op).

First it was consent form time, and then questions about drug allergies. Then our RE came in to check the same things and explain the procedure and draw a diagram. We would do PESA/TESA. The first PESA with a fine needle aspiration, the second TESA if that didn't work with a thicker needle to try and get a bit of tissue, and the final option would be to make a 3cm cut and take a biopsy.

The embryologist also came and introduced himself and explained that he would be next door in the lab checking the samples as they became available. He was also helpful in explaining how any sperm recovered would be frozen into straws, and assuming things went well, he hoped to get 2 or more straws-worth. He told us that with the simpler procedure we would know results right away, but with the more complex biopsy options it could take a couple of days, because of the need for manual dissection. And then any frozen straws would need one straw test-unfrozen to measure how many sperm would survive the thaw. This made some of the timelines we'd been given earlier make more sense.

The nurse asked hubby to change into the white surgical gown, put our gear into the wooden locker, and she then came back to accompany us into the OR next door. It had a large full height wooden door that opened automatically. Very star trek!

Once inside it was very busy and a little chaotic. Hubby was asked to lay down on the bed and both the nurse and the RE fussed over the bed position to check he was comfortable, giving him more pillows and getting him to shimmy up the bed. End result: the tiny operating table was not designed for a full grown man! Feet off the end!

I was seated on a chair at hubby's shoulder. I had asked previously if it was appropriate/ok for me to be present and was told yes that's fine.

Once hubby was draped and the automatic hatch to the embryology lab was opened, things became more focused. The blood pressure cuff was attached and the pulse/ox monitor put on his finger. The lights were turned on. In the room was Hubby, me, the RE, our nurse, the other nurse (wasn't introduced to her), and the embryologist through the hatch in the lab.

The RE asked to be passed the local anaesthetic and prepped hubby for what it might feel like. He winced, and she injected heaps: more than the amount you'd get on a typical HbA1c blood draw. It was angled all around the right side and the wincing stopped pretty quickly.

The RE did a few tests to make sure the area was numb then started with the first small needle aspiration. This was literally just a syringe (larger body than a U-100 insulin syringe, but only just. The needle would be about 10mm long at most) that was injected then used to suction liquid from the epididymis, which the RE was pinching firmly to keep steady.

The first aspiration didn't get much, maybe a couple of bubbles. Our nurse organized a small petri dish of culture from the hatch and held it in the flat palm of her hand while the RE drew up and flushed any material out of the syringe back into the dish. She wasn't hopeful about that first one, but they passed it back to the embryologist to check while she did the second.

The other nurse was quite small and she mainly dealt with stuff that didn't catch my eye! I honestly can't remember her doing anything - but I think it was just because she was so quick and efficient :)

As expected, the first aspiration had nothing in it, but neither did the second or third which was a total bummer. I know hubby had really been hoping for that to be it. I know he didn't particularly relish the thought of moving onto more invasive procedures. I kind of felt a cold sinking in the pit of my stomach. Like all the nerves I'd been building were saying "Yup, no luck here." But I tried to stay strong and focused on hubby as he was clearly upset by this news. It's a tough thing to digest, being told they can't find sperm in a room full of people when your bits are all exposed. He was incredibly composed and so brave.

The RE quickly decided to move on to the larger needle into the teste itself. (this would hope to get small slivers of tissue with tubules. Tubules are where the immature sperm live).

She said that she would administer more anaesthetic (and do a little haircut!) and although hubby looked like he felt this one, it was nothing compared to the massive flinch/grimace he gave when the big needle went in. He would later describe the pain as similar to kidney stones pain. The RE got 3 attempts at this process before hubby was quite obviously in too much pain. He was incredibly brave about it and I admire him greatly for his strength. Each time they would flush the butterfly needle arrangement out into a petri dish, but if they were expecting a 1cm long piece of tissue then this was a failure, as they only got tiny pieces about the size of an ant. It looked like they hit a blood vessel as there was quite a lot of red (probably only a few drops in reality) and I did start feeling a bit faint.

Hubby was by this stage in a lot of pain and kept asking for the RE to stop squeezing. She did a couple of tests to see what hurt and when he couldn't tell that he wasn't being touched, but was still in pain, the procedure was called off.

He would later describe the pain as quite excruciating. This makes my heart hurt; that he has to go through this once and have it not work. But then the thought of him having to endure it again is just so awful. But he is wonderful and tells me to put it out of my mind; that he would do anything for me.

- - - [    break in typing so I can get a tissue, crying :-(      ] - - - -

It appeared that the anaesthetic was wearing off, perhaps due to the effects of the scar tissue from the vasectomy; as the anaesthetic was injected above the RE suspected that the scar tissue from the vasectomy may be blocking it from reaching the teste lower down. Or perhaps it was just not enough, or injected in the wrong nerve?? We'll never know.

The nurses began turning things off, lights, pulse-ox machine, putting things away, and re-draping hubby more modestly. He was given 30mg codeine, which made him loopy. The RE talked about the possible future biopsy, and how she wasn't going to do it today; an anaesthetist would be required as he would need some sedation. The efficient nurse asked whether we would like tea or coffee or milo?

All through this hubby's blood pressure was high. It got higher after the op. We were led (carefully! yes he was walking) out of the OR and back to the recovery room. They brought in tea and creme-biscuits, later an ice pack arrived.

We were told it would be a 15 min wait, but because my phone went flat I had no idea what time it was. I got hubby's phone out of the locker. It was cold in the room so I turned the aircon off. His feet were cold and I couldn't find any blankets in the room. Hubby was very sore and doo-lally from the codeine and shock. I got him to drink a sugary cup of black tea and eat a couple of biscuits.

I was considering when to call / hunt down our nurse when she arrived to check hubby's blood pressure. It had gone up again. They were worried about this. The RE and the embryologist also came in separately to debrief us. Because hubby had missed his dose of blood pressure medicine this morning, they wanted him to have a tablet as soon as we were back in the car.

At one point he was feeling a bit sick and claustrophobic, so the nurse agreed that we could go drive down to the lake, take the bp tablet, relax, but come back in half an hour once his blood pressure normalized and have another BP check. Good news.

We got a gauze-dressing for the blood, the obligatory tight undies, clothes, and we were off. Hubby seemed better once he stood up, taking the pressure of certain parts. We go down to the car and hunted for the bp tablet.

Where is that goddamn tablet?

Answer, at home. 3 hrs away.

So I went back up to the clinic to get a one-tablet script for the medicine. This involved going to the waiting room, discovering the "procedure" side had a locked door and no reception. Going back to the other side of the clinic and explaining myself to the receptionist. Going back to the waiting room. Feeling awkward as I interrupted another couples waiting time. Finding my nurse and explaining what we needed.

I knew the name of the medication. But what dosage? 120mg? I think? I could call his GP? The look of relief on her face when I said this was immense. Oh, and flowers arrived for her from her husband- on her birthday!

And then Internet Explorer crashed the party. I work online a lot, and I teach, so I had to gently point her in the right direction as she spelled things wrong, couldn't connect, couldn't login, used the wrong bookmark for google etc... We found the GP clinic phone number eventually and she got in touch with hubby's nurse. I took about 6 times longer than it should have if she had just let me do it (!) and all through it the RE's advice "not to leave him alone AT ALL for the rest of the day" was running through my head. And here I was, leaving him alone and in pain less than 2 mins after leaving the clinic!

It was a good thing we called the GP back home because the correct dosage was only 12.5mg. Our nurse got a prescription for one tablet printed then we went back to the other side of the clinic to find another doctor to sign it. That done, I got (terrible) directions to a pharmacy, and high-tailed it back down to the car.

Hubby seemed fine, better even. I drove to the pharmacy and he decided to come in, as standing felt better. The pharmacist had to check that we did indeed want just one tablet. Then we went in search of a cool bottle of water as we both felt dehydrated. And chocolate. As hubby deserved the biggest chocolate bar ever for facing that situation with such courage. And, it's chocolate. You don't need an excuse.

We found a supermarket. I was getting worried about being slightly lost (codeine-hubby was navigating, you see) but hubby wanted to find a service station instead. We drove on. I found a dairy and got water and 2 chocolate bars. I found the lake and we sat there for another 10 mins before returning to the clinic.

Once upstairs again we went to the other side and asked the receptionist to alert our presence to our nurse, then went across to meet her. She took us into the same office where I'd watched her battle with IE and we waited again.  You have to sit in a chair and wait for everything.

There was a door to a store cupboard open off to the side. Hubby looked in it from his chair and whispered that it contained an open, unlocked fridge full of drugs. With a handy sign above it stating how you had to phone a security company before opening the fridge. Thousands of dollars of Gonal-F etc just open and unsecured. Lol

Our nurse came back in and quickly shut that door. She re-checked hubby's bp and is was coming down thank goodness so we were given the all clear to go home. I drove most of the way, but dear hubby drove the final third, and now is out working tonight.

No heavy lifting, no bending, just sit and work the EQ and faders! I'm on gofor duty :) p.s he's walking a bit like a penguin!

UPDATE: Friday night while hubby was working, I was sitting beside him at the mixing desk in the middle of a very busy park. I was getting him water and neurofen and keeping an eye on him. But when the band was playing and it got dark, with pretty lights all around us, and hundreds of people enjoying themselves, I just felt so strange. Like I knew I was tired, and stressed, and that there was this emotional pressure building in me. I kind of wished I could cry as it felt like I might snap or burst or something. I was thinking about what the negative result meant, how we thought it was just the vasectomy being the problem but now it might be honest MFI. How we would need to do a more invasive procedure to continue. How I hated the thought of hubby being in pain. How much I love him. And just, how the stupid RE co.cked it up. How I want a second opinion. How I don't fully trust her. How I had started sneaking, letting my guard down, and looking at baby names the other night. How maybe that was a stupid waste of time and I should have done something productive. How much of my energy in these recent years has been focused on infertility and how I thought I had managed to control my thought processes so it didn't consume me. But it does. It's all flooded back. A million times bigger. Not as hard because it's not a completely new feeling, different. Because now there is another problem. A problem that no one can deny. I have always felt like a faker in the IF community (and have been trolled online for it) because a vasectomy is somehow not "real" IF. Well, it stops conception pretty darn well. But now there is this new thing which was one of my worst nightmares, and it has just woken up and lifted it's shaggy head in front of me, saying hey, you didn't expect it to go right, seriously did you? And no, a big part of me was terrified that it wouldn't work and we'd find nothing. That part has just been proven right. Although I can't keep from hoping. I can't call off the optimism just yet:

  • that was just one side, the other side may be fine
  • it seemed to be that the operation was a mechanical failure. They just couldn't get enough of ANYTHING out. This is what made me suspicious of the REs skills in this area. I never asked her how many times she'd done the procedure.
  • the biopsy (open surgery) option is still available to us, and hubby has said numerous times yesterday and today that he is willing to proceed.
If anything surprised me about the procedure itself, it was how in my mind it was super-high-tech. And I guess it was, but basically it was just needles and injections, suction and microscopes. Hell, nothing I personally couldn't manage myself if given training. Not that I would do it, just that it was such a simple and kind of unguided, low-tech procedure. The physical nature of flushing the syringes. The manipulation of real tissue. It was just kind of crude, poking a few needles in there expecting to find tiny tiny cells. Why should I be surprised that blood and other fluid is all that came out? I dunno, it just struck me in the OR how nothing about the process (expect the presence of the embryologist and the cryo gadgets) had to be done in a fancy fertility clinic. It was outpatients stuff, and did not appear complex. It did not appear worth the money that was spent on it. And that sux, that it was funded but still didn't work.

Our first actual real piece of fertility treatment failed. 2013 makes 9 years. But also only just 2 days. :(

Sunday, January 13, 2013

Only 2 weeks until sperm retrieval!

Hi everyone. Yes, I am still here. No, nothing much has been happening on the topic of infertility treatment around here for ages.

However, that is all about to change, as we officially start treatment on the 25th of January 2013!!!!

Hubby and I will travel to Hamilton so he can have the sperm retrieval procedure done. This involves a local anaesthetic and possibly (?) some light sedation. The RE will attempt to retrieve sperm directly from one teste via four increasing more invasive procedures: TESA, TESE, MESA, PESA. Needle aspiration into teste is first, then needle aspiration into epididymis, then a kind of biopsy where a piece of tissue is taken, then I think a larger chunk is taken. Sorry, it has been a while since our appointment with the RE.

The procedure will only be done on one side, so that if there is any damage caused (touch wood) it should only affect one side.

So, we have in essence, four shots to retrieve some swimmers. I don't know if a second sperm retrieval procedure is covered under publicly funded treatments or not.

Any sperm that are retrieved will need to be washed and frozen. Washed, because of the high likelihood of anti-sperm antibodies (it's over 12 years since Hubby had his vasectomy now), and frozen because we are not doing the IVF right away. No, of course not. There is more waiting, silly!

Because we won't technically have finished our 3 years of penalty wait-it-out time until August / September 2013. So the sperm needs to be stored until then, and then hopefully it will thaw ok. Freezing and thawing will damage the numbers, but we have no option. But I was worried that we wouldn't get to do the sperm retrieval procedure until August, so at least we get that over with sooner. (The cynical me thinks that this appointment got sent to us around about the same time that the HDC complaint went in... Hmmm.)

IVF will not start until we know whether or not we can get viable sperm, and I am happy about this as it means I won't be put through the drug regimen unless there is a really good shot.

So when August / September comes around, I am to start IVF drugs asap. I assume we will be back up to Hamilton before that to collect drugs and be trained on their use. (Yes, I have a few things in the timeline to iron out).

It's all becoming much more real. For so long (nearly 3 years "officially infertile" as the NZ medical system defines it, plus 6 years before that. That, friends, is nearly 9 years of infertility. And we are only just about to start treatment. This still blows my mind!) we have been waiting, and fighting, and crying, and hoping, and researching, and advocating, and trying to plan, and trying to live life anyway, that to have this ephemeral, ethereal, indistinct future suddenly right on our doorstep is, is... what?

Is it amazing? I'm not sure. I don't know how I feel now. Nothing dramatic, emotionally, is appearing just yet. I have booked the motel for the night before the procedure. That made it real. We have talked about how much it might hurt (physically) and dear Hubby has assured me that since he is not freaking out, I should not freak out. He says that since he already had a vasectomy he knows roughly what to expect. He's calmer than I am, so I guess you could call it nervous energy. The feeling that the waiting is finally coming to a climax. That action will start. That all the past years torment will be swept aside.

I know better than to think that. I will carry the experience of infertility with me forever. I have read enough in these years to understand that people don't just forget what has happened to them.

Which brings me to the HDC. Now, I spent a lot of energy writing to the Health and Disability Commissioner of New Zealand to advise him of what had happened to us, and to try and get some fair treatment. Of course, that process took so long that now we qualify for treatment on our own. So that whole thing seems moot. But I have received letters back from the HDC and I haven't had the heart to read them in depth and analyse them properly. Part of that is because they have so obviously missed the point and swept my complaint aside (the point: that I was not party to the decision to get a vasectomy, and that we had already waited 6 years, and that an additional 3 years of penalty time is cruel and unfair), but also because after a discussion with my husband I decided to look forward. To try not to waste time keening for the past. To make plans and move into the future. To plan for treatment, which is now coming up.

But I will share the results of the HDC complaint I submitted when I feel ready to read them and write my opinions on them. Personally, I won't get much out of this except for a great sense of indignation that they still don't understand, and are still acting unfairly. But another part of me hates the thought of some other couple being forced onto this journey unnecessarily.

So, there you go. I am nervous, worried, optimistic, elated, scared, pessimistic, optimistic, calm, and tense all at the same time. I feel guilty that was is essentially my request (to have a child) will mean that my husband has to have an operation. He seems unfazed by this, and I know he really wants a child too. He says he is excited, and that we would make great parents. I say, we already are great parents!

This blog should get a bit more active over the coming weeks, and I hope I can bring you all some good news about a successful sperm retrieval procedure.