Dilaysis blow outs: what, how, why and what to do

Belinda emailed me last week asking about her blown fistula. It thought the response could be valuable information to anyone who has just started the BigD.

Belinda:

I just started Dialysis one week ago, this being my second week. Today something went wrong and blood was everywhere and my arm was so swollen they had to cut me out of my sweater. The nurse tech said maybe I had a clot my arm is black and blue and hurts, hopefully it will heal before I go back Monday. My question is how do you know if it’s your arm or if it was the fault of the tech? And what do you do, because I don’t want to make someone angry at a place i have to go to three times a week.

Here’s my response:

Hi Belinda, I’m very sorry to hear about your arm. I and pretty well every other BigD member know exactly how you feel. At least you are not alone. What’s happened is called “blowing” your fistula. It happens when the needle (which is very sharp) pushes right through the fistula wall so that the blood from the machine pumps directly into the flesh and muscle around your fistula. Blow outs are painful, they are dramatically ugly and the extensive bruising lasts a few weeks until your body dissipates the blood (and mental anguish and irritation).

Unfortunately, blow outs can be common in the early days in the life of a fistula, because the fistula walls are very soft and new. Even a small arm movement or inserting the needle a little too vigorously during cannulation will do it.

As for who is at fault, no one does it deliberately. If it happened before you went on the machine, it may have occurred during cannulation, though as I said, it is especially tough to get the needles right during the first few weeks of dialysis. If it happened during the run, it may be that you moved your arm just a bit too much, and inadvertently pushed the needle through the fistula wall. As you say, you will be there three time a week for quite a while, so put it down to experience (unless it happens regularly, then it’s time for another unit).

The good news is that as your fistula gets older, the walls get tougher, you get more savvy, and it is less likely to happen. Have a look at my posts on getting the needles in, so that you know what’s happening inside the fistula and how to avoid blows in the future.

Also, from what you say, it was a few minutes before anyone noticed that it had blown. From your part, that is simple lack of experience (who knows what is normal during the first few weeks?). Unfortunately, if the dialysis staff are not nearby at the time, the blowout can be quite severe before they take action (which is why you need to be able to recognise one early and let them know ASAP).

How to recognise that your fistula has blown and what to do

Either needle can have a blow out, but the effect is dramatically different depending on which one blows.

If the arterial needle (the one closest to your wrist, supplying the blood to the machine) blows, the machine will alarm quite quickly: this is because the needle is no longer in the fistula, the blood supply slows dramatically, the machine sucks harder and this extra negative pressure sets off sensors in the machine. Some blood will seep from the fistula hole into your arm, but not much. Applying pressure to the blow area for about 5 minutes limits the damage, which will be barely noticeable a day or two later. This is the least common blow out.

If the venous needle (the one further up your arm, delivering the cleaned blood from the machine back into you) blows, things can be a little more dramatic. The machine takes a few minutes to alarm because it is happily pumping blood into all that empty space next to the fistula. It takes a while to “fill up” that area until the back pressure sets off sensors that stop the machine pumping. The resulting overflow of blood into your arm can be painful, distressing and the resulting bruise takes weeks to gradually disappear.

What can you do to minimise the blow out?

Firstly, be aware of how your arm feels during normal dialysis. If something changes in how it feels, it may have blown: a short stabbing pain (where the needle has gone through the fistula wall) is a good indicator. Unfortunately, you often can’t feel the blood going into your arm until there is a lot there.

Secondly, keep an eye on how your arm looks during dialysis: if it starts to swell, it has probably blown.

If you think it has blown, act quickly: clamp off the venous supply line, either with the in-line clamp or an arterial clamp; failing that, just clamp or knot the line with your free hand like you would a garden hose. The machine will sense the increased pressure and stop pumping. Then call out for help, press the nurse call button, etc.

Your nurse will remove the needle and re-cannulate in a different location, to resume the dialysis, or to return the blood in the lines to you and end your run early, depending on how long you have been dialysing.

I’m sorry to say that there’s not much you can do to reduce the impact of a blow out. You will get an almighty bruise which will be sore for a while. Many people recommend Hirudoid or a similar bruise reduction cream, but I haven’t found it to be particularly effective. As I said, the chance of blow outs reduce as you become more experienced, but they still happen (I had one about 3 months ago).

The only plus is they look amazing: flash your arm or photos of it to impress relatives, induce shock and awe in strangers or scare small children. Better still, keep vigilant and keep your good looks.

Get off Dialysis: buy a kidney

In their book SuperFreakonomics, Stephen J Dubner and Steven D Levitt discuss the terrible state of kidney donations worldwide – or almost worldwide. Wherever the culture is one of altruistic donations, people are dying waiting for transplants. But in one country, Iran, things are a little different. They have a system of paid and regulated living-unrelated kidney donation.

In 1988, Iran adopted a compensated and regulated living-unrelated donor renal transplant program. As a result, the number of renal transplants performed substantially increased such that in 1999, the renal transplant waiting list was completely eliminated. By the end of 2005, a total of 19,609 renal transplants were performed (3421 from living related, 15,356 from living-unrelated and 823 from deceased donors). In this program, many ethical problems that are associated with paid kidney donation also were prevented. Currently, Iran has no renal transplant waiting lists, and >50% of patients with ESRD in the country are living with a functioning graft.

In developed countries, the severe shortage of transplantable kidneys has forced the transplant community to adopt new strategies to expand the kidney donor pool.

For example, while it is illegal to sell kidneys, it is not illegal to trade them. I wrote about Paired Kidney Exchange recently, where incompatible donors can trade kidneys with compatible recipients. This approach has expanded into chain donations, where an altruistic donor, who isn’t asking for a kidney in return, kicks off a chain of paired exchanges. Economist Al Roth’s blog post describes how one altruistic kidney donor saved 10 lives.

Other ideas include commemorative medals and pins to honour donors, shorter prison terms, reduced funeral costs for the deceased donor and having health insurance organisations make payments to live donors.  A really bizarre idea is a Dutch reality TV program, The Big Donor Show, in which three contestants compete to receive a kidney from a terminally ill donor (gross).

However, compared with the Iranian model, none of these approaches has the potential to eliminate or even alleviate steadily worsening kidney transplant waiting lists. So the SuperFreakonomics argument: set up a market in human organs that would save thousands of lives (and millions of dollars in dialysis costs) a year. Drop the altruism for economic common sense: governments pay donors $30k to $50k for their kidneys and watch the waiting lists fall.

This has triggered discussion and argument around the world, and there seems to be an evolving consensus amongst ethics committees, transplant surgeons, bioethics councils, dialysis associations and others that the organ donation process needs reform, with a focus on incentives. What kind of incentives? While probably not cold cash like the Iran model, they would still be financial, like tax breaks, guaranteed health insurance, college/university scholarships for the donor’s children, deposits in their retirement/ superannuation accounts, and so on.

So what’s the hold up? The wave is building, let’s catch it. Contact your local kidney or transplant association and offer your help to make a case for reforming the donor process. Who has a better incentive?

Dialysis when you feel 5 out of 10

Over the last few months I’ve caught any bug that happens to be in the same street, much less the same room. I’ve gone from 5 k runs and gym three times a week to slow morning walks around the bed. Then within a week, back to half speed runs. All very tedious and a not little frustrating.

This morning, I feel around 6 out of 10. Just enough spark to write this week’s blog (only a day or so late).

This is not a normal dialysis problem. It is accentuated by me continuing to take anti-rejection drugs that suppress my immune system. My non-functioning kidney transplant is still inside me. I am pushing for it to go, and hopefully it will be removed this side of Christmas.

So in the interim, how to deal with feeling only 5 out of 10.

Firstly, accept that you are not up to your usual day’s activities. Sometimes this is difficult. Knowing you usually get up at 6am to run the block or pump iron doesn’t mean you should. Listen to your body. Shout yourself a sleep in, then go straight to your shower, etc, dress for the day, enjoy a leisurely breakfast and when you are good and ready, start your day.

Second, keep an eye on your fluid intake. On easy days, since you don’t spend 30-60 minutes sweating before the day begins, you can’t gulp down fluids to replace the sweat. Try to stick to drinking about a litre through the day, so you don’t arrive at the BigD bloated and even less well. If I’m still thirsty after I’ve had my quota, I really like sucking ice blocks (though I can give them up any time!).

Thirdly, while you should watch your diet, don’t make your life an even greater misery. If you feel like it, give yourself a small treat through the day: have a cup of real expresso coffee and maybe even a small cream cake. Life below 5 out of 10 is miserable enough without living like a monk as well.

Fourthly, take extra care on the BigD. Unfortunately, you can’t call in sick. You may feel like crap, but you have to dialyse no matter what. Make sure you do everything right, it’s easy to let something slip if you are not concentrating: wash first, use plenty of antiseptic, measure your weight correctly, make sure the needles are placed just right, and that you get the full benefit of your run.

Fifth, remember that nothing lasts forever. Storms and miseries pass. Put your head down and keep going. Before you know it, you’ll be back to normal – 8 or 9 out 10 – not only healthy but fit enough to babysit your grandson!

Musings from a BigD Christmas party (or why I’m glad I don’t dialyse at home)

Julie and I went to the BigD Christmas party last Sunday. It’s on at the same time every year, 5pm on the last Sunday in November. At the same place, a park with a big sheltered area surrounded by trees, swings and slides. We all try to bring at least one significant other.

Chris, the Unit Manager and several of her wonderful staff and friends organise it every year. They do the hard stuff: buying the chickens and salads, cooking the snags, buttering the bread, making the punch. For the rest of us, it’s just there, ready to eat and enjoy. All for $10 a head.

It was raining a little this year, so rather than the typical 80 people, we had just over 40. It’s a tribute to our Unit that those who have spent the year putting us on and taking us off, advising and supporting, fetching and carrying for us, also come along, often with other family members to spend time with us socially.

It’s good to catch up with our fellow club members when they are out of the saddle: a chance to introduce or catch up with them and their others; kids and grandkids. Once a year we all see each other in a different light. We get a glimpse of the lives and families that make each of use what we are.  Very enjoyable and very Christmassy.  And another reason not to dialyse at home.

This was my second BigD Christmas party after a break of a few years. What struck me this year was that since the last Christmas party 6 or 7 of those that were here last year now had transplants. Of these, 5 were mostly hale, hearty and here again this year, each with their story. The absent ones were unwell to quite unwell, reinforcing the bumpy nature of the transplant journey. How many of us members will receive kidneys this year?

Of course, others here last year were also absent. They left the club permanently during the year: Jeanette I mentioned in a previous post (her excellent husband Ken was here); others left when their time came or at a time they selected. Our notice board always has a range of funeral service sheets pinned up as an ongoing reminder.

Chris made a good speech welcoming all, remembering all. Last year we were waiting to hear where the Unit was to relocate, and when. It is a tribute to the bureaucracy that just last Sunday, one year to the day later, she was able to tell us. The new Unit will be in a large multi-story building across the road from the old one. Still a little hazy on the when, but the where is definite.

I wasn’t the only one in a contemplative mood. Chris told us one other thing. I joined the Unit in 1974 when it was a hospital satellite, the sixth member of that august group, with all of 3 machines operating. A few years later it was expanded to 8 chairs and later still sold to a Gambro and then Diaverum, to become its current glory. Chris announced that after a recent death I was the last of that initial group.

I’m sure that can’t be bad, but the pressure is now on.

Regardless, I plan to be here next year for more musings and possibly to make another record: Like Woody Allen says: “80 percent of success is just turning up.”