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.

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13 thoughts on “Yet another !*?*?*! adventure?

  1. A good story and you really made the point, one needs a person that will do the legwork to keep things running in a hospital, especially if one is on dialysis. Nevertheless you may well be the cat with 9 lives. Regards Dennis

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  2. I’m so glad you made it through. I had a similar experience, brought on by taking over the counter antiinflammatory drugs while on a blood thinner. I had a couple of bags of blood, but no where near 17!

    I agree we must be vigilant in the hospital, but it’s hard when you don’t feel well. I take a smallish notebook and pen and keep notes of who is caring for me, medications, and what they tell me.

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    • Good idea Rene. The trickiest bit is medication. They give you all of them together in a little plastic cup, and the temptation is to gulp down the lot at once. But, through harsh experience, I take each one out and check it off, mentally or on paper, with my list. That way I don’t take something I shouldn’t, or at least I can say, “Hey, what’s this?” Cheers! Greg

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  3. Greg that is a terrifying adventure. I’m very glad for you that you’re here to tell it. Was there ever any discussion of it being potentially related to long term renal failure? Or of the impact of transfusions on the prospect of a future transplant? I realise there was no alternative/choice at the time, but just wonder if it came up, as I’ve often wondered if a transfusion would create antibody issues. Best wishes, Peter

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  4. Wow Greg that all sounds so scary. I have a daughter who is doing home dialysis. She has been fighting this disease since she was 10 and is now neatly fifty. Her husband has been working hard to get her off dialysis and he has some interesting ideas. If you are interested I can send you His web site. He is now helping people online deal with things more naturally . I hope you don’t have another session like this again. It is really scary when you don’t get a diagnosis. We live in Canada in a little town called Stratford and are famous for our Shakespearean Festival. God Bless and hugs Sandra

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    • Thanks Sandra. Yes, please send me the address. “Self-love, my liege, is not so vile a sin, as self-neglecting.”
      —Dauphin in Henry V. Cheers to all in Stratford! Greg

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  5. You are right Peter. I’ve already had two transplants that gave me lots of antibodies. In my last anti-bodies test, I had a 2% chance of a transplant match. I had little choice with the blood transfusions, but then, I think my transplant options just shrank from small to tiny – hardly worth worrying about. Greg

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  6. You post has given me some insight I’m going to share with my doctor. After surgery for a broken hip two months ago I was given two transfusions. I am in stage IV renal failure but have been there for nearly six years . I am not on dialysis. Now suddenly I have high potassium and higher blood pressure. Wonder if there s a connection. It was emergency surgery out of my usual network.
    Am so glad you are better. I read your posts religiously!

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