Have you seen this before? Can you help?

I have a friend, George (not his real name), who, apart from being on dialysis, has an unusual bursa problem. Talking about it with him, it occurred to us that other people may have the same thing and have some advice about how they manage it.

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George’s swollen bursa

scapulothoracic-bursitis-shoulderThe problem is with his infraserratus scapula bursa. A bursa is a thin cushion of lubricating fluid located at a point of friction between a bone and the surrounding tissue/bone. George’s problem is the bursa just below his right scapula (that is just below the wingy part of his shoulder). Its job is to lubricate where the shoulder rubs against his rib cage.

 

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Time for draining! – About 150mls of bursa fluid and blood

In his case, his bursa decided to fill itself with fluid, to the point where it has become a 150ml-plus bag of fluid extending down the right side of his back. At first (when it was small and manageable), his local doctor worried that it was cancer, so he was referred to a specialist surgeon, who ordered an MRI of the area. It identified the bursa as the problem, so his cancer worries disappeared.

But how to deal with the bursa? It was not painful, just annoying and embarrassing. After some detailed research (using Dr Google and his army of medical partners, here and here), he discovered that it probably began as an overuse problem, following 20 years and hundreds of hours extending his right (fistula) arm for dialysis. This is not a common problem, but it is (yet another) known outcome of long-term dialysis.

1-infraserratus-bursaAs an interim measure, the surgeon drained much of the fluid and sent him home. Over the next three years, he had several Cortisone injections aimed at stopping the fluid flow and the bursa drained about once a month. Nothing worked: it just kept coming back, each time a little larger. It is now interfering with his sleep (and dressing – T-Shirts especially!). He finally decided to see if there was a better way to deal with it. He saw several specialist surgeons, most of whom recommended removing it surgically.

The trouble is that as a long-term dialysis patient, George has all the co-morbidities associated with that: AF and other heart problems, compromised immunity, bleeding and general fragility that makes an operation quite dangerous. After long discussions with his Cardiologist, he has decided to wait about six months. He has been told that the bursa may reach a certain size, then stop growing (when the fluid pressure on the bursa bag holds back the production of more fluid). This is not certain, but he’s giving it a try.

If it does not stop expanding, then his Plan B is to risk surgery.

crowdsourcing

Crowdsourcing! Tapping into the wisdom of the crowd.

But even though it is rare, surely someone has or had something similar. And perhaps they have found a better way to manage it. That’s why he decided to put his story on BigDandMe, to reach as many dialysis patients as possible, and maybe find another way to deal with it.

So if you can help, or know someone who may be able to help, please add what you know to the comments, or email me directly (see About).

Who knows what can be achieved with the power of crowdsourcing!

 

Update

img_8252George’s bursa was aspirated (drained) a week ago and the doctor collected 220mls of fluid and blood.

img_8254It seems that there is no limit to how big the bursa can get. George has now decided to talk to a surgeon about having it removed. But he is still keen to hear from others who have experience with this kind of problem and would appreciate any further feedback or advice.

How to Manage Fatigue

Am I fatigued, or just exhausted?

Fatigue1All of us BigD-ers feel weary at times. I’m often most tired just before I dialyse. Some days I arrive at the unit, dragging one foot after the other, dead tired. Putting my needles in can be as marathon effort. And once I’m on, I sit back, suck a couple of ice cubes, close my eyes and I’m in dozy land.

But half an hour later, I wake, bright and rested.

Thinking about it, most times I’m physically tired from my physical activity throughout the morning – my early morning walk, house stuff, running around, computer work. By the time I get to dialysis, I’m exhausted and ready for a long sit-down. And the sit-down solves the problem.

Exhausted manOn the other hand, fatigue is a lingering tiredness that is constant and limiting. With fatigue, you have unexplained, persistent, and relapsing tiredness, that is not relieved by naps or long periods of rest. So how can we manage fatigue?

Guest post: How to Manage Fatigue

This pithy and practical guest post is from Constance Peng, Provisional Psychologist / PhD student at the University of NSW in Sydney, Australia. It has some great advice and ideas to help us BigD-ers put a little more energy into our day.

At least 60% of dialysis patients say they often feel fatigued

Fatigue makes it difficult to participate in enjoyable and meaningful activities, can lead to depressed moods and overall poorer quality of life. If you are one of the 60 per cent, and your doctor has not identified any medical reasons for your fatigue (e.g. anaemia, hyperparathyroidism), then it is worth thinking about making some lifestyle changes.

Studies have shown that dialysis patients who have poor sleep and are physically inactive tend to experience more fatigue.

Some tips to help you improve the quality of your sleep and increase your physical activity

Go to bed and wake up at the same time every day (even on weekends). This will train your body to know when it should be asleep.

Limit your daytime naps to 30 minutes and have them before 3pm, unless your doctor advises you to nap more often. Try not to nap during your dialysis treatment. However, if you do, remember that napping excessively during the day makes you more awake at night.

Sleep only when you are sleepy. If you cannot fall asleep within 20 minutes, get up out of bed and do something boring until you feel sleepy.

ActiveSchedule in daily exercise you can easily fit in between your dialysis treatments and other commitments. It can be as simple as 15 minutes of slow walking, stretching or gardening. Stick to this no matter how tired you feel.

Pump it higher!Practice pacing. If you try to do too much on days you feel good, then you will feel too tired the next day to do much. This is a called a “boom and bust cycle” and you will end up doing less over time. Instead, aim to gradually increase your physical activity over time. For example, you can increase the length of your daily walk by five minutes every fortnight. Stick to this plan no matter how tired or energetic you feel.

If you would like further information on how you can tackle fatigue by changing your behaviours and patterns of thinking, it may be worth speaking to a Clinical Psychologist, who can explore the underlying causes of your fatigue and use effective techniques to help you get more out of life!

The BeanThis article first appeared in The Bean, the newsletter of the Concord Hospital Renal Unit, Concord, NSW.  Thanks, Constance for sharing it with us!

If you would like read more of The Bean, or sign up, click here.

My itch has a name – and it’s not Scratchie

BackscratcherThe dreaded itch is well known to most BigD-ers. Most people I know have a trusty back scratcher. Mine is made of bamboo and looks a little like a monkey’s claw. I’ve had it for at least 15 years – maybe 20. The scratching claws are smooth from much work, but they still do the job.

We all know the pleasure of a good scratch.

Most people will tell me it is a phosphate itch. They say my phosphate levels are too high either because I have strayed from my low phosphate diet, or I’m not using my phosphate binders right (ie, just before I eat). And most would be right – especially in the early years of dialysis.

So, after constant efforts on diet and binders, I managed to get my phosphate levels from a little high to excellent. And mostly the itch receded.

Life went on.

But now, after 23 years of dialysis, it seems that the rules have changed. Over the last few years, my itch has come back, despite my phosphate level being pretty good. And along with the itch, tiny bumps of skin started to appear, mainly on my back. “Little warty dots” my doctor called them (the technical term is lesions). They get very itchy and give off much pleasure when I scratch them. And with the excitement of being scratched, they expand (temporarily) until the memory of the scratch wears off.

Over the last couple of weeks, the tiny dots have also started to appear on my neck and chest. While this expanded the opportunities for pleasure scratching, I really didn’t like how things were progressing, so I asked my doctor for a referral to a skin specialist.

I already go to a skin specialist, but he’s into speed consulting. I go into a room, strip off and put on a gown. A few minutes later he steams in, and it’s out with the LED magnifying glass, looking all over me for skin cancers and brushing other things (including my queries) aside. A quick click at the computer and he’s gone. Wam, bam, thank you Maam.

So I decided it was time for a new consultant.

The new guy (and his wife) have just set up practice. He asked me questions, took the time to listen to my answers, then gave my skin a slow once-over. And then he gave me an answer.

For an unknown reason, sometimes people on long-term dialysis can extrude collagen, in the form of tiny, dry fibres out through their skin, usually on the back and chest. The lesions usually begin about pin-sized and with stimulation (scratching) can get up to 6mm (¼ in) in diameter.

Reactive Perforating Collagenosis

Reactive Perforating Collagenosis

It has a name, and it’s a mouthful: Reactive Perforating Collagenosis. Reactive to dialysis, perforating as in pushing up through the skin, collagenosis as in collagen in fibre form.

The DoveMed link has a good, no nonsense article about it: The majority of the cases resolve on their own without any treatment. In severe case, the treatment may include the use of topical creams and moisturizers, phototherapy, and antihistamines for itching.

Cause

Beyond having chronic kidney failure and long-term dialysis, the exact cause is unknown. But the appearance of skin lesions is triggered by trauma, especially scratching(!). And more scratching and cold weather makes the condition worse.

I think, in my heart of hearts, I knew I shouldn’t scratch my itchy back too hard. And sometimes I wondered which came first, the lesions or the scratching.

Now I know.

Treatment

The big one is to completely avoid scratching the affected areas.

But when it gets crazy itchy, the question is how?

Creams

Anti-itch creams like Antroquoril (a moderately strong rub-on corticosteroid) helps stop the itch. It doesn’t treat the cause (what does?), but less scratching helps the spots calm down and maybe fade into the background (maybe).

My skin specialist prescribed it for me, and it’s working.

Phototherapy

If the Antroquoril cream doesn’t make the grade in the longer term, he suggested I line up for the Phototherapy. There are two types:

  1. UVB phototherapy is irradiation with shortwave ultraviolet radiation. To treat the whole body, the patient, undressed, stands in a specially designed cabinet containing fluorescent light tubes.
  2. Psoralen Ultraviolet Light A is a combination treatment, where Psoralen (a light-sensitive drug) in cream form is rubbed on the skin to make it temporarily sensitive to UVA (long wave ultraviolet radiation). The skin is then exposed to UVA. The lamps stay on for increasing lengths of time, starting with about one minute and extending for up to half an hour.

It’s been a couple of weeks since I started the cream and I use it twice a day. There is much less itch (though I need a quick scratch every now and then).

Maybe, if things continue to improve, I’ll be able to retire my trusty back scratcher- or at least hang it out of site.

Dialysis: a Heartfelt Journey

Without dialysis, I would have been carried off long ago. With dialysis, I’ve been able to draw out the carrying off bit for 23 years and still counting. It’s a constantly changing situation;  one that keeps me on my toes.

That’s not to say there aren’t challenges.

As I’ve said many times here, it’s rarely the dialysis or kidney failure that kills you. It’s usually your heart, gradually weakened and damaged by the constant (and sometimes very large) changes in fluid volume it has to deal with between dialysis sessions.

Now, true to form, after my last prolonged stay in hospital in December, my heart is giving me a bit of stick. However, it’s not so much weakness as blockages in my arteries. And not by any old cholesterol plaque; oh no, my blockages are calcium, slowly deposited in my veins and arteries. This happens after years of the ongoing battle between calcium and phosphate, caused by my missing kidneys. The last doctor I saw put it succinctly; he said I have crunchy veins and arteries. Nice mental picture.

Anyway, the blockages are slowly growing, and for a range of reasons, I’m not a good candidate for either a bypass or a stent. So my heart is being managed medically, with a range of drugs designed to slow or minimise further blockages.

One of the side effects of this new, weakened heart is that I get puffed quickly, and when stressed, my heart feels a little strange. So I have my trusty Glyceryl Trinitrate (GTN) spray. A quick spray under my tongue relaxes and widens the crunchy veins and arteries in my heart and the rest of my body, making it easier for it to pump, and I’m ready for more action. I don’t use it all the time, just if I’m exerting myself, walking up hills or in the gym or trying to keep up with the grandkids when we walk to school.  

But just recently I’ve noticed a couple of new twists, that need new thinking and acting on my part.

Breathing vs Sleeping

For the last 6 months, if I’m more than about a litre overweight (say at the end of a morning dialysis day, or a full non-dialysis day), when I go to bed, I wake up around 2am gasping for air. It seems that when once my heart would brush off the effects of a litre or more, now it can’t handle it so well. During the day, instead of being distributed around my body, the extra fluid goes to my legs and at night after I’ve been horizontal for a while, to my lungs.

I mentioned it to my Cardiologist and he put me on GTN patches, to wear at night. Mostly they work a treat and I sleep like a baby.

Mostly. There are still a couple of nights, after my two days off, that I put on more than a litre, and the GTN doesn’t cope. I wake up at 2 am or 3 am out of breath. On these nights I go to the living room or the office and sit up for an hour or so until my legs fill up again. Then I go back to bed. It works pretty well, but it’s a drag.

There are a couple of things I’m trying to get back to a full night’s sleep. Firstly moving most of my dialysis times the evening, so I’ll be dry most nights and sleep well. Also, if I limit my fluid intake on my days off, to less than a litre, I should make it through those nights too. This seems to be working.

A stronger patch may be another option. I’ll talk to my cardiologist at my next appointment. It could be a simpler answer, hopefully with no extra side effects. With my current patch, when I first wake up, I feel a little weak and lightheaded and it takes me a couple of hours to get my energy back.  If I go to a stronger patch, these side effects may get worse.

Base Weight and AF

Again over the last 6 months, in what is obviously a related problem, my heart began slipping into AF (atrial fibrillation) when I was on dialysis. Like after last Wednesday’s run, I felt a little strange when I came off, but thought little of it.

When I got home and sat down, my heart jumped into AF so violently that it felt like a heart attack, and Jule and I went to the Emergency Department. After blood tests, they reassured me that it was only AF. They contacted my Cardiologist, who changed my medication to make it harder for my heart to go into AF. I spent the night in the Short Stay Unit and went home around lunchtime the next day.

Still, this was pretty scary. Rather than keeping me healthy, dialysis was giving me AF, (which can take hours or sometimes days to revert). I quickly realised that if I didn’t want to have to choose between dialysis and AF, I needed to take some action.

After experimenting, I think I have worked out why and how to stop it. It’s all about making sure I don’t strain my heart, by going too far or too fast below my base weight during the run.

It seems to happen only when I have a small amount of fluid (less than a litre) to take off. (I have been deliberately low on fluid so I could sleep at night.) When the nurse adds my drinks and washback allowance, the UF rate means that sometime during the second hour I have taken off more fluid than my base weight. This continues until the end of the session when I get my washback.

My heart doesn’t like any of this and reacts by going into AF.

So now if I’m taking off less than 1 litre, I either run in (where both lines are connected at once and I get about 300mls of extra saline before the actual dialysis/UF begins) or I add 300-plus mls of saline after the first hour and add the same amount to the UF remove, so they cancel out.

Either way, adding more fluid helps keep my weight above or near my base weight, which ensures a gentler UF and my heart is happy and unaffected.  

So now, mostly, I come off healthy, relaxed and ready to rock.

(Of course, since these problems are related. I could simply arrive with a litre or more fluid on to take off, and eliminate the AF problem, but that may make it harder to sleep at night. It’s trial and error. If I can sort out the sleeping/gasping problem – with patches or whatever – I can also solve the AF.)

It just goes to show that healthy dialysis and a trouble-free heart are the result of constant vigilance.

Home at last?

I’ve been missing in action for most of January. Following the blood thinner hassles around Boxing Day, I caught some bug that attacked my left hip on 7 Jan. So before I could blink, I was back in hospital.

The usual ED blood tests indicated my old friend staph epidermidis, also present last October in my right hip. The usual treatment is 6 weeks of Vancomycin, which began immediately.

Over the next two weeks, I was discharged twice, followed by two re-admissions due to more infection and for low HB.

(One excellent thing that happened during one of those snap home visits was that Julie disappeared and returned with one of those electric easy chairs. With the help of relatives and friends, she unboxed it, plugged it in and I’ve been nestled it almost every waking moment since. Now I’ve just go to work out how to stop the grandkids fiddling with the control – especially while I’m in it.)

Back in hospital, ultrasounds, scans, and eventually an MRI found several pockets of some kind of fluid in my hip (maybe pus?). However, no-one could decide whether to drain or cut open my hip to get rid of it. Eventually, I had a needle inserted to draw out the fluid (aspiration). Not much fluid. Next, I had a drain tube inserted to try a slow drip release. Again no joy, and it fell out after the second day.

Around now, at last, a senior Infectious Diseases Consultant decided to look hard at my history. She found that this was the same bug going back to 2012. It seems that while Vancomycin kills it in test tubes, it doesn’t in my body. So she changed to a new antibiotic (Linezolid) which should polish it off after 6 weeks. Once that’s done, I’m to take another antibiotic for the rest of my life as a prophylactic, designed to stop any further infection before it begins.

Once all this was decided, four weeks after I arrived, I was released home on Feb 3.

I can’t say I’m better yet. Still limping and collapsing after the smallest effort. But there is progress. Yesterday Julie and I went out for coffee (bliss). Who knows what madness could follow over the next few weeks?

Which is important, because the infection is just a sideshow. The main game is my heart and the 90% blockage in my right coronary artery. And for the last few weeks, my AF.

So far, I’ve had three plans for going forward: all involved two specialists grinding down the blockage and putting in a stent.  Each time this has been cancelled due to my infection: I must first be infection-free. This could take another 3-4 weeks. All the time taking blood thinners to get me ready for the stent.

However, just today, my Cardiologist called to say the plan has changed. I must still become infection free, but now I need to have my AF reverted first, and then perhaps my blockage can be dealt with “medically”.

First, fixing the AF, probably by zapping. Just before the zap, I’ll have a TransOesophaegal Echo (TOE) – an ultrasound taken of the heart from the oesophagus, via the back of the throat. They are worried about the possibility of a stroke if the zapping releases clots into my bloodstream. So, if there are no clots around, my AF will be zapped. If there are clots, they will block them off from the bloodstream first. In preparation, I’m to stop the blood thinner a week before, then 3 days before onto Warfarin.

So what about the stent? Medically, long-term Warfarin may be enough to keep my blood thin enough to get past the blockage in the medium term. So maybe it can be put off for longer, unless I get angina, or fail a stress test, etc.

Next stop the TOE and hopefully the AF reversion.

My Boxing Day Test

The good news is that, as expected, I was discharged from the cardiac ward on Christmas Eve afternoon, just in time to watch Carols by Candlelight and wrap presents (Christmas tradition). And I was mightily relieved.

The following day dawned bright and sunny, and fairly quiet (at least in our household), so Julie and I had a leisurely Christmas breakfast, exchanged gifts and enjoyed a wonderfully relaxed Christmas morning.

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Diabolical jigsaw

We spent the afternoon with the rest of the family, ate too much, played complex board games with kids young and old, dozed on chairs and generally had a great day. We arrived home pooped, spent some time on our latest jigsaw (the Mona Lisa, a Christmas gift -– diabolical – too many black bits) and hit the hay. It was a great Christmas Day.

Home ambulance 2

Off to the Austin on Boxing Day

Which was good, because on Boxing Day I got up and went to the toilet and lo and behold, blood. Lots of it.  Groan. After a very short discussion, Julie called an ambulance. Within 30 minutes I was on the way back to the dear old Austin ED.

When I left the Austin on Christmas Eve, I was put on two new meds to thin my blood (Aspirin and a new drug called Ticagrelor [Tie-Kag-gr-law]), in preparation for the stent procedure. They also changed my anti-AF (Atrial Fibrillation) meds from Flecainide to Amiodarone, which is also more amenable to stent procedures.

The blood thinners were a good move from a cardiac viewpoint, not so good for someone with a history of diverticulitis (where small sacs in the bowel become infected and burst, sometimes causing bleeding), like me about a year ago.

About two months ago I had a small diverticulitis episode, without bleeding, and forgot about it. But my body clearly remembered. What seems to have happened is the blood thinners did their job well, also dissolving a clot that was holding back a bleed, and away it went.

They stopped the Ticagrelor immediately. Over the next two days, I had two more bleeds, the effect of which were tracked by ever falling haemoglobin levels. To compensate, I had a couple of units of blood during dialysis.

Austin CDU 4

The Christmas entrance to dialysis

Austin CDU 1

Christmas Dialysis elves

(It doesn’t matter how sick you are, there is always dialysis. Sometimes it is a comfort (especially if it is giving me blood) sometimes it is the last thing you feel like. Either way, when it’s BigD time, it’s BigD time, so grin and bear it.  As usual, no matter how I feel, the staff at the CDU are uniformly wonderful.)

On the third day, it seemed to have stopped. Things were less bloody. Then diarrhoea all night. It’s like my bum was cleaning house, like a lawnmower engine that hasn’t been used for a while sputters and spurts when you first try to start it.  Once it starts, all is well. So was I.

Then some interesting news. The cardiac doctors wanted me to re-start Ticagrelor within a week of discharge, so my blood is thin and ready for the procedure. What’s more, I should stay on it for 12 months after the stent procedure.

The blood drained from my face (I don’t know where it went but it stayed inside me). Julie and I are very nervous about this.

I made a rush appointment with my cardiac specialist to talk it through. I went to see him yesterday.

Unfortunately, the night before the appointment, my heart went into AF. The switch from Flecainide had left me a little short of protection and AF arrived like a runaway blender. Combining AF with a 90% blocked coronary artery can be challenging. I felt so weak I could hardly walk to the lounge from the kitchen without my heart beating hugely and me feeling highly collapsible. I wasn’t sure whether it was the AF going faster or the blockage causing a mini heart attack. I’m still not, but I’m still here, so it was probably the AF.

Fortunately, I had this ideal cardiac appointment booked, and AF was the first topic we discussed. He doubled the Amiodarone dose so my stores will be at full protection all the time between meds. (I took two tablets last night and it’s not over, but I’m a lot better today.)

Then he gave me a stay of execution on the blood thinner for 12 days. A scare delayed 12 days is 12 days enjoyed. Maybe any bleeding that was holding off will heal properly between now and the procedure day (19 January – two weeks today) so the bleeding won’t restart.

Maybe not.

Anyway, that’s the state of play. I’m mostly looking forward to the procedure, so I can get fit again, put on some muscle, go walking and generally reclaim my freedom. But I’m mostly dreading the blood thinners. What if I bleed again? Will they still do the procedure? If so, will I need the thinners for 12 months?

I’ll have all the answers soon enough. So tune in two weeks from now for the next exciting instalment.

Back to ED – but not for kidneys

Just lately I’ve taken to slowing down. Not by choice.

It’s three weeks after my carpel tunnel #2 procedure, and two weeks after I had two units of blood at dialysis, to recover from the blood loss. So my HB should be pretty good and I should be jumping out of my skin.

But I can’t make it around the block. I walked 100 metres from the car to meet Max for coffee and I was a puffing, exhausted wreck. And my heart was beating like a base drum, echoing throughout my chest. It took about 10 minutes (and at least half my coffee) to recover. Maybe this is not just a haemoglobin problem.

Like any red-blooded man, I ignored it as soon as it went away.  Trouble is it kept coming back, from less and less exertion on my part.

I really hate going to hospital. I fight like a trout to stay away. But last night, sitting on the bed with my heart pounding from the mammoth effort of walking from the lounge room, Julie and I decided it would be best to go under my own insipid steam, before I was carried there by a van with flashing lights.

So around midnight, five days before Christmas, we walked into Austin Hospital ED, registered, and lined up for the Triage nurse. I think I’m having a problem with my heart are magic words that get you close to the front of the queue. Into a cubicle: blood tests (what else?), an ECG and, later a chest X-Ray.

By 5am I was admitted to the cardiac ward. My new nurse promptly connected me my new wireless companion for the duration, a five lead ECG monitor, as I sat on my bed.

It was isolation room. Not because my heart problems were infectious, but because I have VRE (Vancomycin-resistant Enterococci). It’s a bug that lives in my bowel that, like the name says isn’t at all fussed by our most potent antibiotic. It’s harmless in the bowel, but if it leaves home and takes up residence in other parts (of the body), it gets all nasty and very hard to kill.

Not that I’m alone. VRE is one of the less attractive and most common side effects of hanging around hospitals. It’s pretty common amongst us BigD-ers, since we have low immunity, are always gathering together, either in hospitals or units and sharing facilities. I caught it a few years ago on one of my previous visits.

But it’s not so common in cardiac wards and they work hard to isolate it. So here I am in this fairly bare isolation room, facing days of tests sprinkled with dialysis…

It’s now Christmas Eve. I’m an old hand on the ward. Three days ago I had an angiogram and found that I have a serious calcium blockage in my right coronary artery, where it joins the aorta. It needs to be drilled out and a stent inserted. The Christmas period is not a good time, so I will have the procedure in a couple of weeks. I am now pretty stable, with new meds and all should be well if I don’t exert myself (which I won’t).

I’m having dialysis today in my room (third time) and if my bloods are ok, I’ll be discharged today, in time for Christmas.

I have written many times that dialysis patients rarely die from their kidney problems. It is almost always from heart attacks, as the constant fluid overloads and general flood of loose calcium and other chemicals into the arteries eventually exhaust the heart and it stops working. And here I am now, living proof.

Luckily, despite dragging my feet, they have found my problem early, and once the stent is in place, things should get back to relative normality. I know now to take these warnings seriously and to stay vigilant for the next calcium problem.  One thing about BigD; it’s never boring.

I’ll let you know how it goes after Christmas.

Meanwhile, enjoy the time with your family and friends. I know I will.

Hospital holiday

Hi everyone. Just a quick post to let you know I’m still alive and kicking. My silence is due to spending what seems to be my annual few weeks’ stay in hospital due to unknown causes.

I went in with a sore hip, which, together with a fever implied BUG.  After many blood and bug-in-a-bottle tests, together with heroic doses of vancomycin, I seem to have recovered.  The bug defeated, though at some cost: daily blood and bottle tests helped drop my HB from 110 to 74.

I’m home now, but with so little energy, my Nephrologist ordered four units of blood. I had the final 2 units last night on dialysis. So this morning I’m waiting for a burst of energy that will enable me to walk further than twice around the bed.

But things seem to be on the up, except the hip, which is taking its time. Hopefully, I’ll be back to the blog with inspiration and enthusiasm in the next couple of weeks.

Cheers.  Greg

Sensipar’s® rocky side effects

Ozzie waddled towards me with a look of mild concern on his face, looked up and said “Poo”. The cat smiles smugly and leaves the room. Julie is wrangling the other four grandkids in the kitchen, helping them cook dinner. Nothing for it. Find a new nappy, wet a face washer (it wishes it was a face washer), a bag to dispose of the evidence and get down to it.

The little joys of being a grandparent.

Like most people associated with little kids, I’m fairly unmoved by poo. Ozzie’s comes from a healthy body, so it’s sometimes messy, but mostly harmless, and water washable. Anyway, anyone who’s been through a transplant or any other major drama that involves ingesting strong drugs knows how thin the veneer is between continence and incontinence (of any variety).

Take this week. After six months of gradually deteriorating Calcium, Phosphate and Parathyroid levels, I re-started Sensipar®. I’ve been to this movie several times before, but such are the delights of the human body, that reactions can vary each time.

What’s different from previous times is that over the years my Parathyroid gland (which was mostly removed seven years ago) has grown back and completely screwed my Calcium/Phosphate balance, to the point where I’ve lost a lot of calcium from my bones.

Sensipar shuts down my parathyroid and my body starts to move calcium from my body back to my bones. To make sure I don’t suffer from calcium withdrawal, I have to take LOTS of calcium tablets. The resulting side effect is industrial strength constipation.

Most people on dialysis are familiar with the constipation spectrum. The sweet spot (so to speak) is at the centre, where a movement is like toothpastesadly, a place rarely visited by BigD-ers. Because we are dialysed fairly dry, most of us live in the zone between pebbles and rocks.

IMG_6132Many mornings after dialysis, when I’m as dry as a chip, things can be a little tough. Passing something the size of my BB-8 robot’s head is challenging but doable. But with the calcium – Sensipar combo, it takes just one sleep to hit the concrete end, where things get harder and bigger, more like BB-8’s body.

After several hours of desperation, pain and trauma, BB-8’s ghostlike, calcium-tinged brother appeared on the scene: relief and exhaustion in equal amounts. More importantly, I realised that I had to avoid a replay of this drama tomorrow at all costs. I. needed chemical assistance in the form of a laxative, and I needed it right now.

IMG_5913After asking around and a couple of false starts, I settled on Benefiber (US) (Aus) – around $9 at Chemist Warehouse). It’s made from wheat dextrin, is gentle on the stomach and it works. I take two teaspoons with breakfast (I mix it with my milk before I pour it on my cereal), and two with dinner (in a small drink of water). It also comes in small sachets (like sugar) so I can use it when I’m eating out without looking like some kind of coke addict.

I won’t need it forever: only until I stop taking heroic amounts of calcium.

But it will stay in the cupboard. There is any number of things we take that cause constipation, from just about everything made codeine and paracetamol, opiate-based drugs, including Oxycodone (also called OxyContin), many anaesthetics and weight-gain supplements like Fortisip and Resource. There are ways around using (or not using) all of these, but Benefiber is a great all-around liberator when we get caught at the wrong end of the spectrum.

Of course, Ozzie is a different matter. Constipated he is not. Maybe I should make sure the Benefiber is out of his reach.

My Fistula, My Friend

Artery - vein fistulaI’ve had my fistula since 1995. It started out as a 5cm (2in) red scar, where the surgeon had opened my right forearm just above my wrist and joined my proximal radial artery (that runs down most of my arm to feed fresh blood to my hand) to my cephalic vein (which runs from my hand up the topside of my arm carrying used blood back to my heart).

At first, there was not that much else to see. The high-pressure blood from the artery made the vein stand out slightly above the flesh of my forearm, but no one would notice it and it was sort of normal.

BruitnpicExcept for the thrill, and the bruit: the feel and the sound of the turbulence created as blood from the artery gushes into the vein at the join (the anastomosis). The gush happens each time my heart beats, say, 55 times a minute. The thrill is the heightened tickly pulse I feel when I put my finger onto that join; the bruit is the slow-march drumbeat that pounds relentlessly when I press my fistula to my ear. Both were very primal, raw reminders that my life had changed forever.

Part of me naturally designed for lifting and carrying, cuddling and elbow-bending became the most unnatural of things: a dialysis needle gateway.

My poemAnd it has served me well so far, enduring the business end of over ten thousand 15 gauge needles, firstly stabbing a new hole each time, and later, using the same (button)holes. Buttonholing has helped reduce the tear and wear, but it has still grown and evolved into the sinewy forearm snake it is today.

And despite the occasional, blatant, What the … is THAT? look I get from strangers, it is my friend. If it had a name, it would probably be Ralph. Ralph was my best mate when we were young. He was a poet: smart, conflicted, loyal, explosive and high maintenance. I think of my fistula as a poem written in blood, with many of the same features. It tells my story – who I am and how I got here. So I cherish it, guard it closely, exercise it and service it regularly with vitamin E and TLC.

But a fistula, no matter how poetic, is not natural and will not be taken for granted.

In the early days, accidental or incompetent needling painted my arm with the Fistula Bruisers team colours – black, blue and yellow. An occasional fall where I thought I’d burst my fistula scared the hell out of me and Julie; but thankfully, a healthy fistula is a robust body part. The odd wandering buttonhole tunnel needed a new entry point; sometimes roadblocks needed various clean-outs and rebores to change the flow path.

And each episode inscribes a new verse on the poem.

carpal-tunnel1In 2010 my right (fistula) hand started to misbehave: it was weak and clumsy, my fingers and thumb were numb, with pins and needles and pain at night. I asked around and the universal answer was carpal tunnel syndrome. The carpal tunnel is an actual small tunnel, at the base of my wrist, that carries the nerve that gives sensation to my thumb and most fingers, and tendons from my forearm. Any swelling around the tunnel puts pressure on this nerve and stops it working. Carpal tunnel syndrome is very common in people with long-term fistulas, where the fistula grows bigger and generally causes swelling and compression on the nerve.

The solution is to cut into the tendons that form the tunnel and release the pressure. I had it done that year, and it worked a treat: I was once again able to do up my left cuff button in a flash. And I had a new 2cm scar at the base of my hand, mini-matching the fistula scar on my forearm to boot.

That was seven years ago. Just recently, the symptoms have returned. I went back to the carpal tunnel surgeon, who was sceptical. Carpal tunnel syndrome rarely comes back, so he arranged an MRI. Result: a new syndrome. The symptoms were caused by ischemia (not enough blood flow) in the hand; most likely from Dialysis-Associated Steal Syndrome.

Numbness and painSteal syndrome is where the blood normally destined for my hand is ‘stolen’ by my enlarged fistula. This happens in about 1% of fistulas (old and new). It can be fairly mild, like mine, all the way to complete loss of fingertip circulation and gangrene.

There are several treatments available, including reducing the flow by wrapping a band around the fistula vein, removing a portion of the vein, or moving the join between the artery and the vein further up the arm. All involve fairly complex vascular surgery.

That’s the state of play today. My 22-year old fistula is strong, healthy and just a bit of a drama queen.

I’m not sure how things will work out. I’ll start with visits to my nephrologist and the vascular surgeon who did the last service. Then decision time: perhaps once more around the surgery dance floor, perhaps I’ll just live with a clumsy hand.

Either way, I expect some new lines in my poem anytime soon.

Situation normal.