Dialysis and surgery – the price of success is vigilance

Well, I’m back, and damn pleased to be here.  Two weeks ago I went to hospital to have my transplant kidney removed.  As anyone following this blog will know that it has been a point of contention for 6-9 months.  I have simply wanted it out. But there seems to be a school of thought that it should not be removed unless it “gives trouble”.

I my opinion, it gave lots of trouble, the result of which was that I felt unwell for the whole period: weak as water at the gym; hardly able to walk long distances, much less jog.  I was a little dizzy a while back and fell and broke my arm.  Then I got AF (an irregular heart beat) then, I had surgery on my fistula to make it more efficient.  But I still felt unwell.

Eventually, the kidney made its statement and swelled up, at last meeting the “giving trouble” criteria.

It was removed two weeks ago in copybook surgery.  As part of the preparation, I had a dialysis session the morning of the surgery, to give me some breathing space after if I needed it.  I must say that I felt better as soon as I emerged from the fog of the anaesthetic.  One small problem: I had acquired the hiccups, about 30 to the minute, day and night. Not pleasant, especially when you are trying to speak, or sleep.

Despite this, I was up and walking the same day, which surprised me as much as anyone.  Thinking I was invincible, I was sent home the next day.  Wrong.

First things first: I had my first BigD session post surgery (a two-day break), which was a relief.

However that night I got a common complication of surgery: pneumonia.  And the AF came back with increased heart rate, high temperatures and some agitation. I was re-admitted the next day for more treatment.

I went to a ward bed, and then as things got worse to Intensive Care, where I stayed for two days.  During this time, I had one four-hour dialysis session. Dialysis is a rare commodity in most ICUs, so they dole it out in meagre portions, and try to manage the fluid intake side of the equation.

However, dialysis fluid balance is not a core concept for ICU staff.  They were told that I should have no more than half a litre a day, so they gave it to me as water-soaked cotton wool wipes, about once an hour.  I was already dried up by the antibiotics, and now reduced to sucking a few drops from cotton wool per hour.  I was so dry I could barely croak: very uncomfortable.

I, like many BigD people know my body very well and understand when I am dry, wet or just right, and I was dry.  Perhaps I am indulging myself, but I don’t think I would have gone over done it if I had access to a small cup of water.  Eventually, I was trusted with a mug of ice, which I must say gave me great relief.

Still, this was a side-show to the main game.  And don’t get me wrong, I have nothing but praise for the hospital.  My family and I don’t think I would have made it without their skill and care. My comments here are primarily about helping you as a member of the BigD club prepare for the rigors of surgery.

Gradually, my temp came down and I returned to the ward.  Another couple of days went by.  I had one more dialysis session and a blood transfusion over this period.  The blood was not available when it would have been most convenient: during the BigD run, so I had it via a drip overnight after the BigD session.

One problem with this: blood that has been cooled has more potassium than blood in the body, so it was also lifting my potassium level.  That is why it is best to dialyse it as it goes in to us BigD types.  However, hospitals are not ideal worlds.  At least I got the blood.

Eventually, I was taken off intravenous antibiotics and allowed to go home.  That was two days ago.  Since then I have had one dialysis session and another booked for both today and tomorrow.  Hopefully things will get back into balance and I will begin to feel normal.

Only one thing still bugs me, the hiccups.  Fortunately, they are stopping for a few hours at a time and returning.  From what I can discover, this may be related to my break in regular BigD, or it could be the result of an internal wound yet to heal from the surgery.  Either way, things are improving.

So there are special difficulties for BigD patients undergoing surgery.  Other procedure and priorities can and will disrupt you BigD regimen and may have added side effects not experienced by people with healthy kidneys.  Be vigilant; understand your surgery and the potential problems, especially for you as a BigD patient; try to organise dialysis ASAP after your surgery.  Keep positive.

ps:  a very big Thank You to the Austin Hospital.  I live to write another day.

Another short break…

So, another break? Yes, this time I have gone to hospital to have my transplant kidney removed, so no post this week.  I’ll tell you about the good, the bad and the ugly next week.

Holiday Dialysis in China – maybe next time!

My wife, Julie and I have wanted to go to China for years.  There were two impediments: money and dialysis.

Eighteen months of saving took care of the first, but dialysis was much more complex.

Early in 2009 I met Rebecca, a PhD student in Melbourne (via the Chinese Meetup club).  For about nine months we spent each Saturday afternoon teaching: me teaching Rebecca English, Rebecca teaching me Mandarin.  This worked quite well, though I think I got the best end of the deal.  Rebecca speaks and writes pretty good English, my Mandarin is a bit Ma Ma Hu Hu (so so).

On her return to China, Rebecca promised to find a good dialysis unit in Beijing for me.  And she did.  It is at one of the most famous Chinese hospitals, the Peking Union Medical College Hospital.  You can arrange dialysis at their international medical care department for foreign visitors.  Their website is at:   http://ims.pumch.cn/lxfs.aspx.  It is best to call the dialysis centre first (direct to the unit: – +86 10 6529 5055) to find out the procedure and schedule the visit.

Since this was to be my first Chinese dialysis experience, and I was unsure of what it would be like I decided to arrange one session, flying in from Hong Kong for three days, then returning to Hong Kong.

In the interim, my health became a bit variable.  My fistula developed a stenosis, which was repaired the week prior to our leaving.  In addition, I developed AF – Atrial Fibrillation (an erratic heartbeat), which made me feel a little weak and unfit.  My heat doctor put me on some meds designed to get my heart back into rhythm, and Warfarin, a blood thinning med designed to stop clotting around the heart (ie a stroke) because of the reduced blood flow from the AF.

Two days before I was due to leave, my heart went back into rhythm and I could go off the Warfarin in two weeks.

So, feeling fairly fit, with a newly reworked fistula, a normal heartbeat and thin blood, we set off for Hong Kong.  I had arranged to dialyse at the Renal Dialysis Centre in the Sanatorium & Hospital at Happy Valley.  We booked in to the Cosmopolitan Hotel, also in Happy Valley, about a 10 minute walk from the Dialysis Centre.

All went well at the Sanatorium & Hospital.  They are very friendly and the dialysis is not too expensive.  We did the usual shopping, touring and eating after the BigD.  The trams and buses are great fun and a real bargain.

However on day 2, disaster!  The mornings were very humid, like being inside a warm, very wet cloud.  Nothing was dry; everything was coated with a film of wetness which makes walking on slippery surfaces even more difficult.  Our way to the Dialysis Centre, was via a subway with marble brick flooring.  It was very slippery, and I fell.  As I hit the ground I banged the flat of my fistula arm hard on the ground.  At first all seemed OK, then the area around my fistula ballooned before my eyes, a giant throbbing bruise.  I clamped my other hand around the expanding fistula and we started walking again to the hospital.

We were both really worried.  Had I burst open my new fistula?  Could I stop the internal bleeding?

We arrived at the hospital about 5 minutes later and went straight to the unit.  I showed them my fistula and they wrapped a strong bandage around the area.  They said I would need an operation.  Did I have hospital cover (I can’t buy overseas cover, so no), could I pay for my treatment (credit card OK?).  There are no first class beds available, would a second or a third class be ok (yes…).

We sat there stewing for what seemed an hour, then one of the renal doctors came to see me.  He looked at my fistula, felt it (it was buzzing merrily), prodded and poked.  I told him I was on Warfarin and steroids for my non-working transplant.  He said he thought the fistula was OK.  If it was damaged, it would have filled my arm with blood like a fire hose.  My arm was bloated, but not enough for a fistula blow out.  It was probably the Warfarin and the steroids weakening the blood vessel walls and hemorrhaging over the area that hit the ground.

Great relief!  No operation, no second or third class bed.  But I would need to dialyse without heparin (the filter must be flushed every 20 minutes or so, to make sure it does not clot).  With this added complexity and the uncertainties of Chinese BigD, perhaps I should rethink my trip to china, just to be on the safe side.  I agreed.  It seemed a small price to pay for peace of mind.  All I really wanted to do was go home.

So about an hour after I arrived, I began dialysis.  It went well, and I had some chance to recover, though I think I was in shock for a day or so. Julie spent the afternoon letting people know, cancelling and rearranging flights and accommodation (both Wotif.com and Hotels.com were very good).

I dialysed again the next day, and on the fourth day, at about 9am, we caught the plane home to Melbourne.

While I was relieved to get home, I am still very disappointed that we didn’t make it to China.  We were looking forward to seeing Rebecca again, and other friends we knew from Melbourne.  I was keen to try out dialysis at the Peking Union Medical College Hospital (they were good to talk to).  I had the feeling that my Mandarin was shaping up well (though the Cantonese-speaking Hong Kongers looked at me twice when a tried it out on them).  And we were looking forward to seeing the Forbidden City, Tiananmen Square, etc.  Big dip-out all around.

But all is not lost.  I have learned my lesson.  Things have a time and a pace of their own.  Don’t rush them.  Travel when you are healthy, not recovering.  I already have my eye on a new suitcase…

Holiday time

No post this week, I’m away on holidays.  New post next week!