Dialysis, transplants and recovery, taking the long view

I thought I’d write a little about the time it takes to recover from surgery when you hit some speed humps; about expectations vs reality.

It’s now about 15 weeks (12 March) since I had my transplant kidney unceremoniously removed.  About a month before that (17 Feb) I had fistula surgery.  While the fistula rework was reasonably straightforward, the transplant removal was a bit of a nightmare.

Once I finally got home, being the Adonis we all know I am, I planned for a reasonably quick, exercise-assisted return to normality.  I started back at the gym early May, aiming to get as fit as I was in just a few short months previously.  As readers of this blog will know, it was a shock to see just how deconditioned I had become.  I had lost a lot of muscle and body fat and my stamina store was closed for the holidays.

In my mind, my plan was simple: I would resume exercising and after about four months, I would see some change, a slightly less miniscule bicep or quads that could hold my weight all the way through a half squat.  In fact, While there has been some improvement (I can lift weights for more repetitions) I have been quite disappointed at my progress.

So much so, that I filled in a termination notice for the gym and decided I would take up jogging.

That decision coincided with a visit to my cardiologist this afternoon.  I told him my sorry tale and he basically said I had made one primary mistake: the timing of my expected return to form was much too short.

It takes about a year to recover from the sort of muscle wastage that comes when you spend weeks immobilized in hospital.  Muscle growth is normally fairly slow, but with BigD members it can be glacial.  Dialysis screws up your body chemistry, and especially your body-building chemistry, and muscle growth is inhibited.  That doesn’t mean there is no muscle growth or increased stamina, it is just slower than normal.

This made me feel a lot better.  Especially when he hardly mentioned the natural collapse of muscle-building capacity that comes with the years (not yet relevant to me).

So I have changed my mind. I will continue going to the gym, I will take it steady (rather than pushing things too hard) and I expect to start enjoying it again.

I’ll let you know what happens (but not for a while!)

Dialysis vs Transplant: which treatment for you?

My friend Max joined the BigD club about five years ago.  I went along with him to his first session.  I had a working transplant at that stage, and I must admit I was unreasonably grateful it wasn’t me.  Like for all of us, Max’s first day was an emotional one, not just because it all became real, but because it was the start of a new, restricted life, that stretched out long past the foreseeable future.

We all feel pretty sorry for ourselves on dialysis Day 1.  But that changes after a few weeks, when the benefits begin to show: you start to feel better, then quite well, and then ready to go back to your life and your work before the kidney failed.  You can too, just not full-time.  As my first Nephrologist, Dr John Dawborn used to say: “Think of dialysis as a second job.”  Coming to terms with our “second job” as the price we pay for our good health is a big mental hurdle that we end up jumping more than once.

So in the early years, we hang out for a transplant:  “A new kidney will give me my life back.”  Well, maybe. I know the anticipation of a transplant “next year” kept me going during the odd sorry stretch.  But it also made it harder to accept dialysis as an integral part of my life.

Which is why I mentioned Max.  Prior to his kidney failure, he also had a cancer scare, which responded to treatment, but meant that he couldn’t have a transplant for at least five years.  Why? Because the anti rejection drugs used to keep his transplant healthy would also crush his immunity to the smallest bug.  So any remnant of the cancer, currently held at bay by Max’s immune system would break through, with devastating results.

So from Day 1 Max was resigned to staying on the BigD for at least 5 years and maybe longer.  He had no expectation of a transplant to soothe the way.  And within a few months, he had developed an amazing attitude to the BigD, which he still has today.  He enjoys coming: it’s a social occasion, a health boost and a guaranteed respite from the busyness of the rest of his life.  The BigD has become an integral, positive part of his life.

I don’t know which came first, knowing that he couldn’t have a transplant helped him to accept the BigD lifestyle, or accepting the BigD lifestyle minimised the distress of not being eligible for a transplant.  Either way he is happier and more settled than many people I know who are hanging out for transplants.

And of course transplants are not risk free.  I have experienced firsthand the two most common transplant demons: rejection and infection.  Both can take you out of circulation for weeks, months or if bad enough, for good.  There are still unknowns: the kidney is coming from someone else who may have (or have had) their own health problems.  While they are part of the learning process for nephrologists, infections passed from donors to you or me are often terminal.  The latest was only last week:  NY man’s kidney transplant gave him woman’s cancer.

In addition, anti-rejection drugs are pretty hard on your body. One specialist I spoke to recently said he thought their constant use takes about 10 years off your life.

So, while a healthy transplant is a wonderful treatment that can give us more time and more freedom, it may not be for everyone.  Dialysis can be a pretty good alternative.  Both treatments are life changing.  It’s up to us how we live our new life.

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.

My muscles have faded away, and it will take a month or two to kick-start them again.

The reason is well-known to me: I had chronic, unrecognised transplant kidney rejection for about a year.  It stopped working about 18 months ago.  My nephrologist said there was no reason to take it out.  It’s a big operation that may be unnecessary.  Many failed transplant kidneys just quietly die off and give no trouble to their host. Right.  Over the next year I gradually became slower and weaker and vaguely unwell.   I stopped running, then stopped going to the gym.  I couldn’t raise the energy to perform. I felt lousy.

Readers of this blog know that I wanted it out, Out, OUT!  But there weren’t enough symptoms to convince my nephrologist.  At one stage he said, “Well you are getting older… ” I was deeply affronted.  Me, old?  Though my malaise had been going on for so long, there was a sliver of suspicion that maybe he could be right.  But common sense prevailed. No one gets this old and slow in a year without help. In my case from a toxic kidney.

Eventually, the kidney did me a favour: it swelled up and became tender to touch.  Symptoms!  Time to remove it.  I had the surgery the following week. I recovered remarkably well, but then got pneumonia and some heart problems.  By the end of last month, I finally came home about 7 kilos lighter (most of it muscle if you ask me).

When the surgeon first saw the kidney, he thought it was diseased, but after tests, my nephrologist told me it was only “raging” rejection, nothing nasty.  He said it “was interesting how a kidney in that condition over such a long period got past us.”  Yes, interesting is one word, I thought.

One of the annoying things that came with being deconditioned is restless legs.  I haven’t had that problem for years, but now that I’m unfit, jiggly legs attack every night.  In my experience, the only real antidote is exercise: working my leg muscles until they are too tired to hassle me.

So I’ve been slowly getting back into shape.  Initially that involved short walks around the bed.  But gradually I advanced to around the block with Julie. One Sunday we walked around three blocks. I did well, but needed a little sleep that afternoon.  About two weeks ago I hired an exercise bike and I ride it until I am tired, or bored, or the TV show is over.  Initially I could only last about 10 minutes, but now, only two weeks later, I can last 30 to 45 minutes, no sweat.  And my legs are already no so restless.

This week the gym: I have started gradually, with light weights and only two sets of each exercise.  As I said at the outset, I’m nowhere near where I was, but I know I will improve quickly (coming from such a low starting point). I am sure I will be the Adonis I have previously known and loved within a few short months.

And the great thing is I am already starting to feel well again.  Ready for anything (mostly).

So, if you are starting to feel better after your first few weeks on the BigD, or if you are recovering from some kind of setback, or if you just want to feel better, start exercising, no matter how gradually.  It pays off, big time.

Get Off Dialysis: Buy Your Third-World Kidney Here

Here we are, only a couple of weeks after my “Get off Dialysis: buy a kidney” post, and this comment arrived:

hey everyone… my name is jay d. macacua of philippines…..! i am 23 yrs old and i would like to sell my kidney….! i am serious my blood tyoe is A and i am willing to sell my one healthy kidney just drop a call on me here is my phone number *********** thanks and i am looking more forward to help.. just call me

All new posts must be approved before they go onto the blog, and when I saw this one I didn’t really know how to respond. It is illegal to pay for body parts in Australia and most of the world (except Iran). However, I believe that we need a better, ethically oriented incentive system to promote organ donation and publishing this offer could add some light to the debate…

So rather than simply publish, I decided to make it the subject of this week’s post.

While it is unethical (and some say immoral) to buy a replacement organ, there is clearly a market. There are many economic donors like Jay, who simply need the money. However, most research done about these donors shows that they usually receive no lasting benefit. The money arrives, and because it makes no real change to their lives (it is used to pay off debt or to make a splash), it is quickly spent and they are back where they began, only with one less kidney. This outcome simply reinforces the unethical nature of the transaction.

But what if part of the deal included a legal responsibility to help economic donors improve their life, at least as much as the donation would improve the recipient’s life? What if the recipient got to know all about the donor and his life: what he needs, why he is donating, how the money could be used to help him and his family? He could then help the donor use the money as a catalyst for change: to buy an education for a job, or a better job, to start a business, to migrate to a safer country, etc. He could also offer his resources, his knowledge and his network, to provide the donor with ongoing advice and support.

Would the transaction still be unethical?

This approach need not be restricted to third-world countries. As has been noted elsewhere, western governments could establish similar arrangements to even out the transaction, and thus promote organ donations in their countries. Arrangements like tax breaks, guaranteed health insurance, college/university scholarships for the donor’s children, deposits in their retirement/ superannuation accounts, and so on.

Not to mention establishing the same social arrangement, where the recipient has a social obligation to the donor. After all if someone gives you the gift of life, surely it’s not too much to ask to keep in touch and help out where you can.

There are two big arguments for better organ donation incentives: the financial – million dollar reductions in the cost to the health services, and the human – the opportunity for thousands of recipients to resume productive, fruitful lives.

All we need is the right model, based on a healthy mix of the ethical and the practical.

Should a failed transplant kidney be removed?

I came back to the BigD about 18 months ago, after my second transplant (from a deceased donor) stopped working. I’d had the transplant for about 3 years, which is quite a short time. A typical transplant should last 18-plus years. Mine failed early because I had a series of rejection episodes in the first weeks and months that damaged the kidney. Still, even a couple of years was great, since in addition to my new-found freedom, my new kidney immediately began to clean out the toxins that dialysis can’t, and rebuilds bones which tend to weaken over the BigD years. Having the kidney in place for even a year is a little like a reset, where your body starts again from (almost) scratch.

So what happens when the kidney begins to fail? It’s the same as when your own kidneys fail, only quicker. First I started snoring, loudly, as extra fluid gathered around my throat and nasal passages. Then at the end of each day my legs started to swell. I bought some support stockings, but it only moved the problem to the top of my knees. I was at a family Christmas in a small country town in central Queensland when the kidney stopped working completely. I filled up with fluid, became short of breath and felt miserable. All within 4 -6 weeks.

I was back on dialysis within a week, and never felt so relieved.

The only thing is that this time, my nephrologist has decided to leave the kidney in. My previous transplant was whipped out after three months because it became toxic. This time it sits quietly on my left side about 5 inches to the left and 2 down of my belly button. (All transplants are located at the front, either left or right, because it is easier to access all the required veins, arteries, ureter and such.) The operation to remove the kidney is quite a big one, and it generates antibodies that make it harder to match a new kidney. So, unless it starts to reject, it stays.

There’s a drawback: I must keep taking anti rejection drugs to stop what’s left of it from rejecting. And the side effect is that my immune system continues to be suppressed. It’s a reasonable trade off when you have a functioning kidney, but not such a good deal otherwise.

The difference in my fitness level between this time and the last is quite marked. After the first transplant was removed, I recovered and enjoyed 10 years of fit, healthy life on the BigD. After the second transplant failed, but remains in residence, I’m catching everything that floats past. One week I’m fit and healthy, jogging and pumping iron, the next week, some bug strikes me low and I can hardly get out of bed. Altogether very boring and unhealthy.

Sometimes it takes a while for the penny to drop. But when it does, it rings like a church bell. Either I stop taking the anti-rejection drugs and the kidney behaves, or out it comes!

What does dialysis and a kidney transplant cost?

I had an email through the week from a thirty-something mum looking down the barrel of kidney failure and dialysis over the next couple of years. In addition to coming to terms with the illness that is causing her problems, she needed some practical information about the finances of treatment.

“What is the cost !! of both Dialysis and a transplant (should I be lucky enough)?”

Like everything else that happens as we move down this path, we tend to learn about it when we need to know, but with the BigD, it’s not easy to find answers.

The Costs of Dialysis

In the private system, each health fund tends to negotiate a payment per haemodialysis treatment with each dialysis centre or company. For example, health fund A may have agreed to pay Diaverum centres $220 per session, while health fund B may pay Baxter $190 per session. As long as you have the cover, you get the treatment. However, many health insurers limit the number of treatments to three per week. Others will allow more, but only on your doctor’s recommendation/request.

The best thing to do is to contact the centre(s) you may be attending and ask them. Then confirm your cover, etc with your health fund. In each case, you are not usually out of pocket. It is also worthwhile asking about the extras that the centre provides (food, TV, internet, etc).

Obviously, if you go to a satellite centre associated with a public hospital, treatment is free. Or if you choose to dialyse at home (or you live far away from dialysis centres) the government covers the costs, including the machine, its installation, plumbing, etc and your training.

The Cost of a Kidney Transplant

With kidney transplants, costs vary per country, and are in the tens of thousands of dollars (or pounds or rand, etc.) But in most cases they are done at public hospitals and the cost is covered by the national government. In the US, kidney transplants are covered by Medicare; in the UK by the National Health Service, in Australia by Medicare, etc. The cost is roughly equivalent to the cost of dialysis for a year, so a successful transplant is a good deal for health authorities.

You can also have a transplant via the private system is you have the coverage (or the money).

I had mine at a public hospital, The Austin Hospital in Heidelberg, Melbourne. I much prefer the public system, and not just because of the price. In the public system, the support network is wide. You and your transplant team can tap into the latest skills and experience from transplant teams around the country and the world. Medical staff are available onsite most of the time and the higher volume of transplants means they have seen most problems before. My transplant teams stopped at nothing in getting my transplants working, and the care was excellent.

Also, many public hospitals are happy for you to elect to be a private patient within the public system, in which case you get your choice of doctor with the added benefits listed above and costs are usually rebate only.

(So, in most countries, it’s not the cost that’s the problem, rather the availability of donor kidneys – but that’s another post.)

Next week: some of the stats of the BigD: how many, what demographics, life expectancy, etc.

Getting a kidney transplant from a loved one

I’ve had kidney problems since 1972, when I was 20.  Through some luck and good management (by Dr John Dawborn, my renal specialist), I hung on to my free and easy life style until June 1995, when I finally joined the BigD club.  Julie and I had been married for 21 years and we had three children.  Neither of us was happy about the BigD and me, and after much thought, Julie conceived a cunning plan to get me out: she would give me one of her kidneys if she was compatible. 

She was!  So began the long workup process: blood tests, counselling, psychological interviews, physicals, transplant workshops, the lot.  At this time, living donor transplants were rare (donor kidneys were mostly from cadavers), and we were the Austin Hospital’s first husband – wife transplant. 

Then, in November 95, after only six months on dialysis, we found ourselves in adjacent trolleys, being wheeled to theatre, first Julie, then an hour or so later, me.  We went in to the operation with high hopes and no thought of failure.  It was to be a real life fairy story, with me off dialysis after receiving a unique, life-changing gift from Julie.  It was an exciting time.

Apart from the family trauma (our children were then aged 15, 17 and 19 had the worry of both parents in hospital for serious operations), the operations went well.  Julie recovered quickly, as did I.  

However, within two days my body rejected the kidney.  In spite of massive doses of drugs (and the harsh side effects), the toxic kidney was removed after a very unpleasant roller coaster ride, three months later.  As part of the closure process, we asked to see it.  It arrived a few hours later in an otherwise empty Styrofoam six pack cooler.  It was small, black, sad and quite dead.  We said our goodbyes.  It was a difficult time for both of us.  

I went back on dialysis.  

But take heart, this is not typical.  Failure rates at that time were around five percent, are less now and continue to fall.  And I have since had a successful transplant. 

So, what are the lessons from my experience? 

Firstly, while no two people are alike, expect rejection.   Some of us reject right from the outset, others breeze through the first few weeks/months.  But either way, don’t think you are in the clear once you leave the hospital.  On average, heart transplant patients have 2.5 rejection episodes in the first year.  Kidney transplants are no different.  

Secondly, expect infection.  Your immune system will be heavily suppressed.  While you take as much care as possible, you should also expect some kind of infection during that early period, typically one that your body would normally brush off.  

Chances are you will experience both rejection and infection in the first year.  Their severity will vary depending on your personal make up and any random factor you care to mention.  But, if you are mentally prepared, and something happens, you are ready.  If nothing happens, well that’s one of life’s little bonuses. 

Thirdly, persevere.  There may be days when you wonder what the hell you have done.  You find you are in limbo for hours, sitting and waiting; sometimes in pain, sometime not.  I called these days donkey days, where you keep going, even when you are unsure why.  But take heart!  Things improve eventually, either with the kidney, or without it (but mostly with it).  

So, if you take home one thing from my experience, it’s this:  a kidney transplant is another form of treatment, effective, but with side effects; it is not a cure. 

If you can think of it like that, you are ready to start your transplant journey.

Next post: Dialysis and holiday travel