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.

Getting fit and staying fit on dialysis – bit by bit

1-fitbitIt is pretty well accepted all over the planet that being fit helps you to enjoy life more and is a major driving force for a longer life.  Not just BigD-ers; everyone.  And the two biggest challenges to our fitness are getting fit and staying fit.  We all face the same problems getting fit.  But staying fit can be a little trickier for people on dialysis.

This is because those of us who have made the effort to get fit between dialysis runs can get our legs cut out from under us by a spectrum of medical dramas that pounce on us from nowhere.  Dramas that people with full kidney function would either barely notice, or not need. (more…)

A little older in the shoulder

For the last few weeks I’ve had a sore right shoulder.  I think it started at the gym.

I have been going to a gym of some kind for years.  I did a little boxing in my youth (light welterweight) and played rugby for a while (no 8) in the navy and have always liked to keep fit.

But then my kidneys morphed into Mr Potatoheads, and the gym became a bridge too far. (more…)

Guest post: The Big Red Kidney Walk

Hi everyone.  Thanks for your messages and good wishes.  I am certainly on the mend, but it is an aggressive little bug(ger), and I think I have another week or so before I’m back to normal.

So, in the interim, a guest post!

The Big Red Kidney Walk is on again on 14 September, around Australia.  Kidney Health Australia put on the Walk every year.  It is designed to help raise awareness and funds for kidney disease across Australia. (more…)

Dialysis steal your moxy? Exercise and variety gets it back

(Sorry about the delay in writing.  I have been working on a post about the appropriate treatment for fistula haemorrhage, signs and symptoms, actions to take so that people can compare what should be done to what was done.  It is taking longer than expected, but it’s coming soon.)

For a range of reasons, I stopped going to the gym about six months or so ago.  I had aches and pains and a little arthritis, and it seemed to me that the gym wasn’t helping.  Also, my knees became wonky to the point where I couldn’t run for 30 minutes without ending up needing a Zimmer frame for the rest of the day (almost).  I had lost my Moxy – my style, my coolness, my confidence.  So I got the sulks and decided that would I drop my gym sessions and runs, and replace them with extra walks and more rides on my exercise bike at the BigD.  What difference could it make? (more…)

Feeling good on dialysis after a setback

Getting fit on the BigD can be a challenge, especially in the early days or after surgery or some kind of other medical or physical setback.  But there’s only one way: slow and steady exercise, letting your body gradually build up condition.

It’s been about four months since I’ve been to the gym, and I started again yesterday.  What a shock.  Talk about the guy who gets sand kicked into his face.  What a wimp.  I strain with tiny, girlie-sized weights and pretend not to notice when tiny girls pick up the man-sized ones. (more…)

Riding an Exercise Bike on Dialysis – Part 2

A while ago I wrote about riding an exercise bike attached to the BigD chair, and mentioned that there may be a more portable, more affordable option. Well there is, and it is.

After about six weeks struck low with some virus and a fractured wrist, I am now getting back into exercise. I have really missed it, for all the reasons I have written about before: handling the BigD less well, feeling tired and weak, fidgety, and most of all not sleeping well.

So as daddy’s little helper, I have purchased a mini exercise bike to use while I’m on the BigD.

The Magneciser exercise bike

It’s a Magneciser exercise bike (USA import) from Sportstek, 6 Park Road Oakleigh. Actually, Max and I paid for half each, so we can share it, but I picked it up! We paid just over $100 each, wholesale, which is OK.

It’s a funny little unit. Quite light (just over 7kg) and easy to move around, and simple to use once you get the hang of it. One design flaw is that because it sits in front of you, it tends to slide away from you if you are not positioned just right. However, this was easily remedied by buying a non-slip mat from a rubber ware shop (like Clarke Rubber, not the adult kind).

Exercising the exerciser

Exercising the exerciser

I ride it for the first half hour I’m on the machine. This has the proven benefit of improved phosphate removal due to increased muscle blood flow. Half an hour is enough. I have other things I usually want to do, and if I use it longer, I run out of time. While I pedal, I eat ice (for pleasure) and listen to podcasts on my MP3 player for entertainment.

One thing I have noticed: for me, it’s not such a good thing to work too much above my fitness level. Firstly, I get hot and sweaty, which is not great for my neighbours (or my street clothes, though maybe I should change into gym gear?). Secondly, for some reason, I find it hard to relax after I get off the machine. Maybe I’m just too wound up. It may be just me, everyone is different, but for now I will settle for a gentle, lightly sweaty half hour.

Other than that, I am getting fitter, my phosphate is going down and I’m feeling well. All-in-all a half hour well spent.

Verdict: these little peddlers are available everywhere, they’re reasonably priced and they offer real benefit. Give one a try!