Yet another !*?*?*! adventure?

This time the adventure began when I went to the toilet. When I looked at the result I saw a black mass surrounded by red wine that I don’t remember drinking. My heart fell: not good.  I thought, will I tell Julie and have to go back to that damned ED? Or will I just stay quiet and hope it is a one-off?

I flushed and began to walk away when I needed to go again.

Same result, with more red wine. Actually, all red wine.  Er Julie, have a look at this. She looked at me with just a touch of anxiety, looked into the bowl and said: Pack your hospital stuff, we’re going to Emergency, no arguments.

Blood transfusion Number 1

Blood transfusion Number 1

I hate it when I’m, right.

The interesting thing was that unlike the two previous adventures, we had a dream run. It was 8am – Rush Hour, but against the traffic. And when we arrived, ED was empty! An amazing and unexpected sight. Presumably, most people have no time for emergencies when they are rushing to work.

Whatever.  I told my story and was ushered into a cubicle within minutes. I needed to go to the loo again.  This time samples were taken, along with bloods and body measurements. Within half an hour, I was admitted to a ward: my first non-kidney-drama admission!

It was quickly explained that losing lots of blood was life threatening and that as my haemoglobin (Hb) falls, so will I. It was currently 6, so they needed to replace the blood I had already lost. And they needed to find out where the blood was coming from to stop the flow.

In fairly quick order I had a CT scan (that found nothing), a digital examination (not the 010101 kind) and a brand-new cannula in my arm had (as usual, after multiple tries). Quick smart I was connected to the first transfusion (one of many).  I soon had a little more energy and Julie and I started to feel a little calmer.

By this time, it was midnight. Julie went home and I settled down for a night’s sleep. However, a few hours later, another big bleed and I lost most of the transfusion and then some. In the toilet, I felt dizzy and began to lose my footing. I called the night nurse and said I needed help and maybe some more blood?  She took me back to bed and said first she needed to measure my blood pressure and Hb. She measured the BP and disappeared.

After a few minutes, I could feel more blood coming. I was getting dizzy and faint just lying there. No sign of the night nurse.

Once or twice before (during the bad times of failing transplants) I’ve looked into this chasm and thought: Ok Superman, this is serious, time to do something or you’re a goner.  So I’d call Julie, and slowly but surely, I’d crawl away from the edge. So, here I was at the chasm again. What to do? Just like those last times, I called Julie. I told her I was fading fast and could see no help around. Of course, she came (at 4am) and my world changed for the better.

Doctors appeared, Hb was measured and we were much relieved when three bags of blood were ordered ASAP, with one to start immediately.

Not for the first time, I thanked my lucky stars for Julie and marveled how much it pays to have the right person in your corner.

I thought, why hold back? Give me all three bags! Starting now! But half way through the first bag, Kristine, the very smart Renal Resident, rushed in and asked me what number bag I was transfusing. She relaxed when I said number 1. Why? Because there are extra precautions needed when transfusing people with kidney failure (of course).

As a long-term dialysis patient, I have always known that there is an additional level of complexity whenever we BigD-ers go to hospital: it’s the main reason I hate to go there. Nothing is straightforward. You have to assess even the simplest treatments through the lens of our kidney failure: diet or fluid restrictions limit treatment Prep options; failed kidneys mean we can’t process or eliminate dyes and contrasts during various scans; outside a renal ward, the nurses really don’t know much about our care or medications, and there is the omnipresent need for dialysis no matter how sick we feel.

For transfusions, the trouble is that as the blood in the blood bag ages, it generates potassium, which we can’t handle and could cause serious heart problems. One bag is Ok, but any more must be given via dialysis, where the bag blood flows through the dialyzer to remove the excess potassium before it goes into us.

For BigD-ers, the price of a healthy stay in hospital is eternal vigilance.

Over the next week, the bleeding and transfusions continued, sometimes together: at one point I was on dialysis receiving a couple of bags of blood, and at the same time propped on a pan, passing a cupfuls of blood. I am deeply grateful to the caring and professional dialysis nurses in the Austin’s Central Dialysis Unit, who made me feel like this was the most natural thing in the world and not the least yucky or disgusting. Bless you all.

The leak became intermittent, but the hunt for its source went on. First a gastroscopy, looking down my throat into my stomach and part of the small bowel: nothing.  Then a second CT scan (more contrast), which found a leak in my small bowel. So I lined up for an angiogram, a probe into the small bowel via my groin, guided to the leak using X-ray contrast dye, where it can be used to stop the bleeding.  However, the bleeding had already stopped, so nothing was done.  Then I needed dialysis to remove the contrast.

The next day the bleeding started again, so I had another angiogram to catch and plug the leak: but it stopped again, long enough to make that one a waste of time too. More dialysis to get rid of the contrast.

Still more tests: an extended colonoscopy (just like it sounds, goes a little further up): inconclusive – they found some old blood near some diverticulitis but not sure if that was the culprit.

As veterans of this kind of thing will attest, the difficult thing about all these tests is not so much the pain or intrusion, it’s the Prep. For much of my time there, I was either fasting or on clear liquids only, day after day, with maybe one good meal or a few bags of blood now and then. So I quickly lost weight (about 4kg – 9lb) and condition and became weaker and weaker.

Gradually, the bleeding slowed to a trickle, but I still needed replacement blood. All in all, I had 17 bags of blood over ten days. (One of the side effects of all this blood was that my face, hands and feet swelled up, just like I was on large doses of prednisolone. It seems that your body takes a while to absorb the fluid the accompanies the blood (about five days for me), even though it comes via dialysis, and stores it in flesh under the skin.  All a bit spooky and unpleasant.)

Finally, mercifully, the bleeding stopped of its own accord (they say it often does). Since all seemed Ok, I was discharged home, but not before one final search via a Pill Cam, which I completed as an outpatient. That was a couple of days ago and I haven’t heard the result yet.

Thus ends my latest adventure, as exciting and scary as any kidney drama of the recent past. This time it came with a couple of additional educational messages:

  • Stay vigilant: non-kidney hospital admissions can be even more complex and dangerous that the kidney ones for BigDers, and
  • Keep fit: several staff said to me that I made it through this adventure relatively intact mainly because I was reasonably fit and healthy to begin with – a tribute to my almost regular twice a week gym trips and our long(ish) Sunday walks.

The sting in the tail is that the reason for this adventure was never found, and it stopped by itself. Of course, that means it could start again anytime: next week or in 20 years. But next time, at least we’ll know where to look.

So Julie and I now relate closely to Bilbo Baggins after his adventures with Smaug.  There may be other adventures coming, but not yet please. We here in the peace and tranquillity of our own home, and loving it.

ps: My heartfelt thanks to the wonderful blood donors of Victoria for their life-giving gift.  You are no longer strangers, you are a part of me.

pps: Thanks and much love to our family and friends, who in thought and deed, kept us going.

Lisbon adventure #1

1-pickp-001Lisbon: we were having a ball.  Different, amazing buildings; windy, cobbled lanes; tiny yellow trams squeezing through cramped mediaeval streets, shops with never-seen-before stuff that’s hard to resist.  History at every turn.  And here comes one of those delightful No 28 trams.  Will we catch it?  Absolutely.  Where’s it going?  Who cares! (more…)

Christmas snippet

1-uncleHi all you BigD-ers and supporters.  Have a great Christmas!  I hope the day brings you joy and something nice to eat.  This post is just for Christmas.

This post is just for Christmas.

A Christmas Story

As part of my Christmas, earlier this week I had an interesting experience.  I went for my usual Christmas haircut at my usual barber.  The guy settling into the chair before me was an elderly gentleman who has owned one of the local coffee shops (more…)

I’m a HemoDialysis Ghost

Now for something completely different, from googleMWgalaxy42.com, dated 29 June 2019.

I’m a Hemo Dialysis Ghost and I’m OK

A couple of weeks ago the bosses at the HDGhosts.com asked us to write a review of our job for their recruitment website (for money!).  Here’s my review.

I’m getting ready for my fifth session as a HD Ghost.  So far it’s been an OK  job.  Not exactly hard work, though it does take a day or two until you feel well again after each session.  But the pay is pretty good, and since it’s the first real job I’ve ever had, and I’m 28, and my dad has never had a job, I’ll stick at it for a while yet. (more…)

Crowdsourcing Dialysis Poetry

Now for something completely different.

Just for fun, if you haven’t already seen it, have a look at this:

Dumb Ways to Die is a multi-award-winning public service announcement campaign by Metro Trains in Melbourne, Victoria, Australia to promote rail safety. (more…)

Struck by Lightning on Dialysis

We had a joyful occasion about a month ago:  our only daughter Kathy had a baby girl.  Since Julie was a midwife, she was there with Kathy’s husband, throughout the birth.  Kathy had her baby at the Mercy Hospital Family Birth Centre, which was just wonderful.

I wasn’t invited to that particular party (and that was fine with me), so I waited most of the time in the Centre’s appropriately named Waiting Room.  Kathy started proceedings at home and went to the Family Birth Centre after about 16 hours.  She was admitted at about 9pm and had the baby at around 3pm the next day: a long labor (and lots of waiting). (more…)

Dialysis Downtime up in the “air”

1-IMG_1068

Approaching a difficult landing…

Life away from the BigD machine can be pretty good sometimes.  Julie gave me a birthday present in August which was booked out three months ahead – a Boeing 737 Airliner flight simulator.  My trip was for an hour, flying into and from our local airports and then into and from an airport of my choice.

I have flown a plane (non-simulated) before.  I learned to fly a Cessna 150 in Albury, about 35 short years ago.  (It is only since I reached my 50s that I have been able to say 30 years of this, (more…)

Stopping Dialysis: how long before The End?

sunsetGetting bogged on a muddy road is not normally a life-threatening situation.  Unless you are driving 475km (300 miles) for dialysis on a muddy dirt road after floods.  A guy in the Queensland outback was doing exactly that three days ago, travelling from Mt Isa to Doomadgee Hospital, a nine-hour trip.  He and three companions, including his son, were travelling along the muddy Thorntonia Rd, a 56km (35 mile) stretch about half way there, when they were hopelessly bogged.

They spent the night in the car (more…)