Some not very good news.

Hello All,

I’m writing this, here, to hopefully explain it once to anyone who may ask what is going on here.

This will be very difficult to write and I hope I can get through it in one sitting. This is also for my kids so they know who grandma was, aside from someone they loved very much and was dad’s mum. Just in case I can’t tell them myself.

Not quite 2 weeks ago I got a phone call I have been dreading for nearly 15 years since I came to Japan, but semi-expecting for the past 2-3 years. It was my father telling me to get back to Australia ‘now’ as my mother wasn’t expected to hold on for very much longer.

This was a Thursday morning, and by Saturday evening all of us were on a flight to Australia to say goodbye to my mother. We arrived when she was still coherent but in a very poor way, and then over the following few days her condition deteriorated and she passed away on a Wednesday evening.

It was a bit of a shock still, all things considered. I’m still in shock somewhat, even though I tell myself I’ll be fine it’s still incredibly difficult to focus on anything for too long or too well. It is mourning, melancholy and while I wouldn’t wish it on anyone, it’s something we all have to deal with at some point in our lives if we have someone we love and treasure in them. There are always regrets to tag along for the ride but hopefully a lot of good memories to smooth out those bumps.

My mother was 3 days short of turning 66 years old. A grandmother (which she was waiting on for years I know) and possibly the ‘best’ mother in many aspects as any out there who has ever lived. I know most of us are sure our mothers are the best there are around, very few of them have managed to get through such adversity as my own mother whom I shall never be able to compare to myself.

That she managed to get to such an age was due in a large part to her toughness of spirit, some good genes didn’t hurt and because of the efforts of uncountable doctors, surgeons, nurses and other health care professionals who give their efforts to helping others. To all of them, I cannot in words tell you how much I appreciate your efforts nor can I possibly find all of you to tell you in person. I only hope that the thanks I have for all of you gets to you all in one form or another somehow.

The story here starts when she was younger and was unwell and given some medicine for it, but 10 times the recommended dosage. So much of this particular medicine (I don’t know what it was exactly) was something that harmed her kidneys, but did not stop them functioning completely. That would come later.

Fast forward several years, and my mum decides that she’s going to be a nurse, a psychiatric nurse. Her mother never had much praise for her as a student, so she wasn’t expected to do too well, but she studied hard, did do well and decided that one of her teaching staff was ‘quite nice’ in a romantic kind of way. A miscommunication between them meant they parted ways at that point, but he comes back in later.

So my mum, still studying meets someone else, falls pregnant (me!) all while still studying/training to be a nurse. These were not the times like today where a single parent is not really much of a ‘thing’ to be concerned with. These were times when babies were taken from their single mothers by force, coercion or peer pressure. Not my mum, she resisted all of this to make sure she kept me and I have stories about how hard they pushed and who I was likely to end up with if she let me go.

While we’re here, there were complications for her when I was born, and she actually ‘died’ in the process. She always told me the question she had was “who’s going to look after Stu?” which bought her back. Make up your own mind about that if you wish, her story never changed once. Additional complications would come later.

To add to her problems, her parents (my grandparents) effectively ‘disowned’ her for having a baby without being married. To me, they were always good but to my mum, not at all. That meant she had no support aside from whatever she could raise by herself, being a student and with a new baby, that wasn’t much. My first memory is of where we were living, student accommodation, which were supposed to be for her and her alone. Definitely no visitors and absolutely no co-habitation. We managed to stay there until she graduated and became a freshly minted nurse.

Normally all of this would make most stand up and take notice of her determination and drive, but this isn’t the end of her troubles. Recall the previous mention of the medicine overdose? The added stress on her body of having me was the final straw and over the space of a couple years her kidneys failed.

So new baby, studying and starting to be a nurse, no real familial support and a health condition that required three 8 hours sessions on a dialysis machine every week.

She never complained, she simply got on with things.

After working for a time she managed to scrape up enough money to put a deposit on a house and bought the house next to my grandparents. At this point they would not support her at all, but they would take care of me whenever it was needed, which was often as mum was either working, on dialysis or so tired from it all that there wasn’t that much time for me left over. I never really seemed to mind that though, maybe I didn’t appreciate it at the time (being very small) but I do appreciate it now.

If you’re not familiar with dialysis here it is in a nutshell, from my brain, so it may not be 100% accurate.

The machine takes blood out and cleans it by I think* an osmotic process and filtering, then puts it back in again. It’s not a perfect process even today and there are definite limits to how much waste it can remove, but it’s better than doing nothing, which for a healthy human ‘doing nothing’ means death within 21 days.

In those times a piece of cow’s artery was used to have something for the very large needles to go into to draw out the blood for cleaning, used as they would seal up again, were of sufficient size for the very large needles and wouldn’t collapse under the low pressure across them as the machine drew out the blood. The operation to place one of these ‘shunts’ into the circulatory system was not always successful and was not repairable or reversible when she had her first, second and third ones placed in over the space of 2 years or so. Both arms, right leg for her. Normally they were expected to last about 2-5 years by which time a transplant is performed or the patient succumbs to their condition.

Nowadays they use Gore-tex, and superior surgical techniques means a failed shunt can be repaired or replaced. Maybe.

One of the problems of dialysis during these times was that you needed to go into the hospital to use their machines. A much easier situation would be to have said machine at home but that would require an assistant for the involved connection and disconnection to the machine and to ‘hand crank’ it in case of power failure. So she did what she needed to do and got a machine at home. Grandpa put up his hand as the assistant, but was only called upon once when the power failed.

Anyway, things are going along nicely enough. We have a house, just the two of us. She has a machine at home, a stable well paying occupation and all the rest of it. We never had that much money to spare but enough to get by and that was enough.

After 6 or so years of things just going along she developed an additional complication to being on dialysis where her parathyroid gland stopped working like it was supposed to. Google the parathyroid gland and take a read of the results to see what they are, what they do (calcium regulation, keep that in mind for later) and what happens when they stop working properly. Basically she went crazy. Really, really crazy. I remember seeing her in bed, her not knowing who I was and completely dumbfounding the half dozen doctors standing about trying to work out what was wrong with her.

One doctor worked it out, and had her sent off to have those parathyroid glands removed.

After the operation grandpa and I went in to see her, and she would keep the sheets drawn up to her chin, but I still managed to see the very large and very ugly clips (like hair clips) used to close the wound in her neck. As she said “I had my throat cut”, and that was no exaggeration, a scar about 15cm long with teeth marks along it’s edge took years to fade, and never fully disappeared.

Before one of these visits, someone arrived at grandpa’s house looking to say hello to mum. Remember that member of the teaching staff she was fond of long ago? He also happened to be a regular medical nurse and a psychiatric nurse, back in the days when men being nurses was very, very strange. It was him, and the three of us went in to see mum.

They talked like no time had ever passed, and when he came home with grandpa and me I somehow decided that I’d like to sit on his knee while we all talked. See grandpa liked this fellow and grandma adored him. I thought he was pretty ok too.

He’s now my dad. They got married a few months after mum got out of hospital, and while it wasn’t all smooth sailing it was probably something mum should have done long before me, but would also mean I wouldn’t have existed at all. I’d be ok with that, if it would have made life easier for my mum.

So we go from just the two of us to now 4 of us as in the bargain I managed to collect a younger brother.

Fast forward another 2 years and the shunt in her leg for dialysis starts failing. Next one is the left leg, and once that one stops working they have to connect the machine into her neck, which isn’t good at all. The shunt in her right leg lasted for 7 years, far longer than expected. At this point we’re on borrowed time. She’s running out of connection points, and still no kidney transplant on the horizon.

Another year, and she got a phone call telling her to come into the hospital for a kidney. Also happened to be my first day at a new school. I wake up, nobody’s home so go off to school anyway. I get a visit from the principal of the school (on my first day) and him telling me mum is in hospital (I panic), nothing is wrong (still panicked!) and dad will explain when I get home. He also told me I’d be happy with the news, which to a panicked kid doesn’t quite work. I got home, we head into the hospital and mum has a new kidney.

(While I’m trying to keep this as light-heared as I can, the reality is that for mum to get that kidney and for several others getting the other organs, the donor had died. Apparently the donor was a young lady, no more than 20 years old, and donated both kidneys, heart, lungs and liver. In her passing she extended the lives of several other complete strangers. I cannot thank her enough for that gift to my mother, and to all those who have given the same gift of life on their passing, you know how I feel towards you. To their families, thank you for letting your loss of a loved one delay further heart ache for others you will never know.)

After some relatively normal issues that come with a new kidney like rejection, the horrific plastic melting anti-rejection medication (cyclosporin) and learning how to take a pee again with a bladder the size of a pea, all was well.

For 23 years.

23 years is a very, very long time for a transplanted kidney to keep working. Especially after 9 years of dialysis. Mum told me about being in the waiting room of the clinic, and 4 guys discussing how long they’d had their kidneys for, which ranged from 4-11 years, the 11 year old getting plaudits from the other 3. They then asked mum how long hers was going, and she told them 22 years, which was longer than all of them combined, and longer than any of them knew personally.

(During this time she worked and enjoyed her work, travelled extensively including coming here to visit us twice, and generally did all the things that a normal, relatively healthy person would do. The medication was hard on her, but better than the dialysis machine. She also had and beat breast cancer and managed to narrowly avoid a massive heart attack by having a relatively small one which prompted attention and correction before it became worse.)

With her kidney failing, new shunts had to be placed for dialysis to begin again. Clearing up the previous attempts was required (not cosmetically, she always had massive scars down both arms), and some limited success was found with new techniques and materials, but ultimately they never really worked out that well. Mostly she did have to have dialysis through her neck which wasn’t great, but again she simply did what she needed to do.

However all was not as well as it was previously. I don’t know if the previous parathyroid problem had something to do with it but she developed a condition that’s rare to contract, but more likely in people with non-functioning kidneys known as calciphylaxis. Google that one, nasty stuff. It’s ‘incurable’ (you know where this is going) and always results in death within 2 years. Basically calcium ends up where it shouldn’t and instead of staying in your bones it starts popping up in other places. Like muscles and organs. It shows up as a crystal, and when it’s somewhere it shouldn’t be it causes tissue damage which will not easily heal, if it can be healed at all as the crystals tend to continue causing damage where they are, and they can grow (as crystals are wont to do) into actual ‘bones’. Hers showed up in her abdomen and caused nasty ulcers.

For these ulcers she went through all manner of treatments, which kind of worked but it was like rowing up stream in a strong river. You can row very hard, but you’ll still go backwards eventually. What was needed was a way to take the calcium out of those tissues, and due to an experimental treatment (and very, very expensive) she became the only known person ‘cured’ of calciphylaxis at this point in time. At least for a little while, she had it and then she didn’t. It did later come back, but for a time she managed to beat that too. Did I mention she was tough?

Unfortunately the years of dialysis, immunosuppressant medication and all the rest of it meant that while her spirit was strong, her body was simply worn out well before it’s time. After an additional 4 1/2 years on dialysis her body simply couldn’t take it any more and I got ‘that’ phone call. The one I’d been dreading for years and years, and wishing that it would be a local call but it actually being long distance to me here.

I love you mum. I’ll miss you for the rest of my life and only hope that I can continue to make you proud of me, even if only a fraction of the pride I have to be able to say “she’s my mum, and I got one of the very best ever made”.

To say that I’ve been working under some stress for the past few weeks would be an understatement. Other matters have not reduced that in any way, shape or form so if you’re asking anything from me at the moment, please expect that I may not be able to do much. Writing this has been a good trip down memory lane, but also painful in that I didn’t spend more time with her, and her more time with her grand kids and her daughter in law. It’s a regret I can’t dwell on, but a regret all the same caused in no small part by my being here and doing what I do here.

If you’ve not taken steps to donate your organs when you die, please consider doing so. It’s because someone nearly 30 years ago decided to do just that I was able to have my mum around for that much longer and not a day goes by when I don’t quietly thank that unknown angel for their gift.

Thank you for reading, and if you haven’t told your mum (or whoever) that you love them recently, do it now.

Stu.

4 comments to Some not very good news.

  • Fabien

    It’s a very beautiful way to tell her story. She can be proud of you, and I’m sure she was. I hope you’ll soon learn to live with it.

  • Matthew Lau

    I feel for you, Stu.

    My mom’s only a few years younger, and I would be devastated if she died. Having helped at the hospital, I can say that the whole organ transplant wait, surgery, and adaptation is not a walk in the park.

  • Angelo

    It’s hard, but unfortunately it’s life. Next March it will be for me 30 years from “that” phone call. Time heals the pain a little bit…

  • Fabian

    I am speechless Stu. I am not ashamed to say I tried hard to hold back the tears as I was reading your heartfelt story. I could relate to some parts it. Hang on to all the good memories. That is what she wants you to do. As someone said before me time will certainly heal the pain. All I can say is that you have been very lucky to have a mother like that. You should have no regrets. She’s the reason you are here and you were the reason she was so tough. There was love and that’s all that matters. With the deepest sympathy and best wishes buddy!

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