Monday, April 22, 2013

Preparation for second surgical sperm retrieval

Since the first surgical sperm retrieval procedure (TESA/PESA) failed to produce any sperm, we have been rebooked for another one.

This time, instead of just a needle, it will be a testicular biopsy. A 3cm incision. Last time the needle biopsy wasn't supposed to be super painful, and it was. I can only imagine what this one will be like, but my money would be on "worse". I sincerely hope to be proved wrong: for this procedure to go smoothly and be much, much less painful for dear hubby. Please please please.

There is not a great deal of information about surgical sperm retrieval online, and without trawling numerous forums there is little detail about preparing for the experience either. So I have decided to write down here what we are doing to prepare for this next procedure... which is in 4 days time!

How to prepare for a surgical sperm retrieval procedure (from the woman's perspective):

First, I recommend asking your doctor as many questions as you need. I have a habit of emailing a big huge list of questions to our RE and getting some shitty, unsatisfying responses back. Sometimes it is better to talk to the nurse. Or phone the clinic to get a human to talk to. For this our second SSR procedure, we were basically told everything about it directly after hubby was recovering from the first one. That is no time to discuss future procedures. In fact the RE was even talking about it DURING the first procedure. We have not had any follow up appointments, and I had to badger them a lot for this second appointment. They are really slack in their communication. So don't you put up with it like we have. I only stopped with the avalanche of questions (which, as they were basically going unanswered, was making me frustrated) because hubby suggested that we just chill a bit, let them do their thing and get the next appointment sorted. Points for looking towards the future!

Second, do your research. There are videos of the procedures on YouTube if you're not too squeamish. Familiarise yourself with the various types of procedure, as then you can ask intelligent questions and understand the doctor-lingo so much easier.

Third, don't trust your doctors completely. I don't. I always rely on my instincts and the level of care I prefer for my family and myself is not always the same as what the RE's office is offering. To them this is their work. It is everyday, routine and possibly even slightly boring to them. To you, it is a major event and it can be traumatic. To give you an example: after the last procedure we had to wait around for a while before they would release us, but hubby was still quite stunned from the op. A simple thing like a blanket in the car to wrap him up and keep him warm afterwards would have been intelligent. And it's things like that which you can do, but your doctors can't. So prepare for having a husband who is in a bit of shock and pain, and think about what you can do to make his life easier.

To help with that I have made a list of items we are packing for Friday:

  • Ice packs (these should be small enough to go inside the undies, near the op site)
  • Non-fluffy gauze pads
  • Tight "supportive" undies
  • Tramadol (painkiller - no driving for hubby on this one!)
  • Panadol (3 x before the op, plus maybe some afterwards too)
  • Neurofen (as a backup only or instead of the Tramadol)
  • Blanket / duvet (for in the car to make hubby comfy)
  • Pillows
  • Other meds (it's so easy to forget, and such a hassle when you have to get access to meds outside of your home town)
  • Valium (we would like to have 1 tab available for hubby before the op, to calm nerves, but won't necessarily be using it)
  • Bottled water (hubby won't have been allowed to eat or drink for 6hr before the op, and water is all he wanted directly after the last procedure.)
  • Snacks (choc bars, biscuits, etc)
  • Towels (no specific reason, but they can be handy. Think propping up knees or feet to help get into a more comfortable position in the car on the drive home.)
  • First aid kit (since we have a 3.5hr drive home after the procedure, I want antiseptic liquid and bandages available if things go bad on the way home. Hope like all hell I don't have to use any of it though.)
  • Purchase extra data plan for the phone (so we can access email, web, maps, on the go. This makes me feel quite a lot more "able" when having to navigate a strange city on my own. And I will be pretty much on my own afterwards since the pain meds make hubby loo-oo-oopy!)
  • Printed maps (mark the following places: motel - we go up the night before the procedure, fertility clinic, a park or lake where you can park up to rest or eat lunch or just think and regroup, a cafe (for before the op), a restaurant (for dinner the night prior), a good bakery or place to buy lunch (for after procedure when hubby will be in no fit state to eat in a cafe amongst the general public), a service station, a supermarket, a pharmacy, plus any other sites that you may need to access in a hurry. I am not the best navigator on my own, so having the backup of pre-planned and mapped destinations will make me a much calmer driver)
  • RE appointment letter (because I always like to have a physical record of my appointment in my hand. You would be surprised how easy it is to forget exactly what time you are supposed to be at your procedure! Have the letter to hand lets you check and get it right.)
  • Entertainment (there will be waiting. Like, fertility clinics seem to specialise in making you wait. Plus as well as things to do in the waiting room itself, you want something to keep your brain from going crazy when you're stuck in the motel room, or waiting for hubby to reappear from the operating room. A book, a magazine, or if you're like me, you are totally addicted to solitaire on your iPhone...)
  • Clothes and toiletries as per normal for a night away.
  • Phone charger
  • Money / credit card for unexpected purchases while on the road. One time we had to buy ear plugs because the car windscreen came partially unstuck and made this horrendous trumpeting/howling noise. It was safe and we got it checked by a mechanic as soon as it occurred  but that sort of purchase is strange and unexpected and you need a couple of dollars handy for the unexpected.
* Note about valium, tramadol etc... Hubby is going along to see the GP tomorrow to discuss which of his current meds are ok with the anaesthesia he will be having, and to ask for prescriptions for pain relief and calm-down stuff. Much better to have it before the op and not need it, than to be prancing around a strange out of town pharmacy with a man-in-pain in tow.

Fourth, if you're not sure about anything, call for help. Have those numbers handy! Go back to your RE's office. Here in NZ they can prescribe other things too... we had left hubby's blood pressure meds at home, so the nurse was able to call our GP and get a one tab prescription organised and signed off by the RE. Yes it was a hassle, but at least hubby was cared for properly.

In what might turn out to be good news, our RE (you remember, the one who couldn't manage to find any spermies) is not going to be doing this op. To give you an idea of the level of communication we've had from this clinic, we do not actually know who will be performing the op, but my gut tells my it's simply got to be better than our current RE. Maybe she got spooked after I asked her to send all our case notes to our GP? hehe

So wish us luck and keep everything crossed that they find what they're looking for on Friday.

Now, some diabetes stuff. Pharmac in their wiseness decided to reduce the number of different blood sugar meters available in NZ down to just 3. That's right folks, you can only choose from 3 different meters, but if you consider that they are all made by the same company, and two of them take exactly the same test strip, then it just looks even grimmer.

I was not happy to change meters. My meter is fine, and it would cost me money and time to change. I think it sucks massively that the NZ government is failing to really listen to what Type 1 Diabetics need. Don't treat T1Ds like Type 2s!!!

Anyway, Pharmac let everyone know that you had a set number of months to change over. Fine. I still had a bit if time. Last month I went to get my repeat of old test strips and the pharmacist says, sorry, no, can't give them to you. Even though you have already paid for 3 repeats and only been dispensed 1 repeat. Even though you are a T1D and need this stuff to live. Even though you have a valid prescription. Even though the changeover hasn't happened yet. You will need to get a new meter. Pronto.

Gah! Turned out that the pharmacy had been running it's stocks low to the point of running out early and couldn't even order any more test strips in for me. They just weren't available anymore.

I wish I wish I wish that healthcare professionals would recognise what a living hell this can plunge a T1D into. The stress and panic. Plus I very easily slip into panic mode and I get really mad that there was nothing I could do to prevent this from happening. It is the only time when I resent diabetes - and event then I don't really resent diabetes as it's a part of me and without it I wouldn't be the same. But I seriously resent other faceless organisations and people getting in my business about my diabetes. You don't know what it's like. One flick of the beuracratic wrist on a keyboard and my life is all unsettled for more than a month. I mean, it's not like some other medicines where if you don't have it for a day or two you'll be fine. This is the sort of thing where if you don't have it, it's a complete f*cking disaster.

So instead of working at my job, I spent the afternoon driving between doctors office to get prescriptions, a new meter (piece of crap that I don't trust, it's not accurate enough!), back to the pharmacy. And to make it even worse, the nurse at the docs office screwed up the script and gave me less than a third of what I need. She didn't even read my prescription history, just wrote me a "Type 2" script. She caused me to waste money on an incorrect script (I didn't spot it, the pharmacist who knows me did thankfully). Then because meds are dispensed in thirds (repeats) I had to go back each week for three weeks to get... another 2 measly boxes of strips. Sigh.

Today I went to the docs to get a new script written. I checked it while standing at the counter, and it was wrong again. Still not enough strips listed. "This now says ten times a day - but I test 14 - 16 times a day. Can I get more?" I ask. Nurse responds: "No. You'll see I wrote ten a day, but they will only ever give you 2 boxes at a time." "Really??" Her: "Yup."

Well, I thought that can't make sense. If the script says I need 10 a day (it's wrong, but it's more right than it was at 4 a day) then why does mitte: 2 packs override it? How the hell is the doc supposed to set dosage of anything? I asked my pharmacist whose a good guy to help me out. He called the nurse and turns out she was working under the assumption that there was a limit of 2 packs per repeat for diabetics. There's not. Insulin dependent diabetics in NZ get access to as many strips as they need according to the pharmac website (one small blessing). So he got the script changed and faxed over, and gave me a bunch more strips.

(Note: I hadn't run out of strips completely. No, you can tell that I am not like that. I have a certain "level" of supplies I like to keep at home. So I normally have close to 10 boxes in my cupboard. That should keep me going for several weeks. And when this changeover happened I very quickly ran my stash of strips down. I only have 3 boxes left now. And this means I am cutting things close, considering it is HARD to get a reasonable amount of strips out of my nurse at the GPs. I will keep working on her. In the meantime I am trying to build up a decent stash of new strips before making the actual switch to my new meter.)

I know it's ridiculous to complain about strips when so many people around the world can't get what they need due to insurance restrictions etc, but here there are no restrictions. And that's my point. It was just sheer incompetence that was the problem, mixed with a lack of trust on the nurse's part. And she's the one whose been to all these extra diabetes training workshops.... doesn't know jack about T1D that's for sure. This meter changeover has cost me upwards of 16 boxes of strips that I will never see since the scripts for old strips can't be filled, and the first new script has been superceded. Gah, what a waste.

Solution: if T1Ds are allowed to have as many test strips as they want (and lets face it, you can't really "overdose" on them, it's a medical consumable tool, not medicine per se) why not put your money where your mouth is, eh Pharmac? Why not let any T1D just rock up to their pharmacy and say, "I test 16 times a day" and have the pharmacist calculate the number of boxes to dispense, then give it all at once. None of this splitting it up into thirds shit. I know you do that because a lot of patients never collect their repeats so it saves wastage. But, hey, diabetes is not really like that. This stuff is going to be used. So why do I need a prescription each and every time? Why not just get one prescription to kick things off, then let the pharmacist and diabetic work it out between themselves... that would be, oh, wait! Convenient to the patient! Nooooo we can't have that now. Better make it so complex and time consuming that it will drive folks mad with rage.

In other news, the cat went to the vet today. He's done something random to his eye, such as running into a rosebush or similar. Has small white spots on his eye just exactly like small puncture wounds The vets words were "thanks for coming in with something interesting to show me!" lol poor kitty. He will be fine, I must go put ointment in his eye now...

In other other news, we got 3 new chicks in spring and now that it's autumn, one of them is the most glorious and beautiful rooster... sigh. At least I have two places lined up to take him should the neighbours start complaining. I think he's lovely. Illegal, but lovely.

That is all. I'm sure you'll hear more from me at the end of this week. Wish us luck!

No comments:

Post a Comment