Thursday, February 23, 2017

Dialysis shunt shut-down

When I first got my dialysis shunt in mid-2011, I received clear instructions on paper to check every day, several times a day, with a stethoscope, that the shunt is still working. When a shunt is working, it has this unmistakable whoosh-whoosh-whoosh sound. The instruction was to go to emergency if I don't hear that sound.

In the beginning, I was rigorous about checking shunt function. After a few years of largely uneventful dialysis, I became complacent. I eventually paid the price for this complacency. Last week on Wednesday night, I went for my regular overnight dialysis, and the nurse came around and got ready to puncture the shunt. Lately I haven't been doing the puncturing myself because I just got operated on for an aneursym and it's now much more difficult to insert the needle myself: due to the operation the shunt has been embedded deeper inside the arm and it takes a lot of force to pierce the needle into the artery and I don't feel confident doing that (yet).

So the nurse simply stuck the needle in... and nothing happened. Normally, when a needle enters the shunt, a gush of fresh red blood appears in the tubing attached to the needle. It pulsates strongly because of the pressure in the shunt. That's how you know you are in. But nothing. Thinking that she had missed the shunt, the nurse moves the needle around under the skin (this is very painful because she has to change the direction of piercing under the skin--the sharp needle must be ripping through the muscle and tissue) and a bit of blood appears, but it's nearly black and not pusating at all. That's when the nurse realized that the shunt was not working.

It seems that my shunt had shut down sometime between Tuesday morning, when I finished my last dialysis and Wednesday evening, and I had no idea when. I had felt some pain and distension in the shunt, but it was consistent with the usual pains associated with the shunt, so I didn't bother to look more closely.  I had gone about my usual work on Tuesday and Wednesday, when I should have been in emergency getting the shunt reopened.

So this is now 10PM and my shunt is down. I have three liters of fluid that have to be removed from my body so dialysis is urgently needed. The nurses then sent me to emergency one floor below (the night dialysis is in a hospital). The nurses there were quick to do an EKG, and blood tests to establish potassium levels. They decided the potassium was too high and gave me a battery of medicines to reduce potassium levels, and stuck me in a hospital room for the night. I've never had a shunt shutdown so this was a terrifying experience for me; I had kind of expected that they'd operate on the shunt immediately that very night, but no. It was some 12 hours later that I was scheduled for an operation.  All this time the shunt is just not working. What's happening to the blood that's stuck in the shunt? It must be festering, because stagnant blood is just like flesh. I have no idea how bad the situation is, so I'm just lying there in the hospital bed the whole night, anxious.

The operation happened around 10:25AM and lasted an hour. I opted for local anaesthetic as always; these operations are really painful but getting general anaesthesia means you pay a price later. I generally throw up a lot and recovery takes longer. It's just too expensive time-wise to get general anaesthesia and I always opt for the more painful but faster option. However, this operation was way more painful than any shunt OP I have had in a while, and I think this was my sixth shunt operation. The thing with pain is that it flows through you and takes over all your ability to feel anything else; you only feel the pain and nothing else impinges on consciousness. In that sense, it's possible to tolerate even high levels of pain, if you treat yourself as an observer. But it was harder this time and eventually I was crying, silently.  Not sobbing or anything, I just had tears streaming down my face. This seemed to upset a nurse passing by much more than it upset me---if crying gives my body an outlet and gives relief, why not? It's a natural reaction. But the nurse felt horrified that I was crying, and came and stood by me and hold my free hand. Strangely, that led to an increased stream of tears. I suppose that any human contact magnifies one's emotional response. Is crying such a rare response on the operating table, I wonder? What do other patients do? Maybe they are all opting for general anaesthesia.  The surgeon asked me if I feeling any pain and I said yes, but I told him to keep going because I could tolerate it. But the other nurse standing by him found that outrageous and said it would be inhuman to make me endure pain and they injected more local anaesthetic into the arm. I don't really understand that. If I can tolerate the pain, in the sense that it doesn't make me cry out loud, it should be OK, no? There's no need for more anaesthetic. But apparently the doctrine in medicine is, no pain whatsoever.

The surgeon was the same one as for the aneurysm; a very competent guy. Within an hour, after much painful cutting and pulling and shearing, he had the shunt working again. I learnt later that my shunt had shut down due to calcium deposits blocking it. They literally used a sucking device to pull out the calcium from the shunt (I could hear it, it sounded like a vacuum cleaner).

So, the shunt is working at 11:30AM on Thursday, and, amazingly, I was dialysed through the shunt at 2PM, right there in the hospital. I thought this was nothing short of miraculous.

The hospital stay lasted four days while I recovered from the operation.  I was put in a room with two other patients. Unfortunately for me, one of the patients had a cough and running nose that eventually proved to be the influenza. This came back to bite me later.

Saturday they sent me home, and told me to get re-admitted to hospital on Tuesday morning to get a follow-up shunt angiography. This involves sticking a large catheter into the shunt and injecting iodine and then watching the flow of the iodine through some kind of x-ray type of machine. They wanted to establish whether the shunt had some dangerous narrow spots. When it does, they can use a balloon catheter to widen it. The angio is not a big operation, but one has to stay overnight in hospital. So I ended up spending Tuesday night in the hospital. By this time, I have a cough and the sniffles as well. The doctor takes one look at me and quickly decides I must have the flu as well because I had been in the same room with the guy with the flu, and puts me into strict isolation in the same room with the guy who has the proven case of the flu! I had a strong feeling that she was wrong about the flu, so I took matters into my own hands. I was stuck in a room with a guy who has the flu, I probably just have a common cold. If I breathe the same air as him (he was coughing non-stop) I would probably get the flu as well. I was inoculated against the flu but it seems the injection failed this year. So my solution was to ask the nurse to give me one of their heavy duty masks that they wear when dealing with infectious patients. She gave me one, it was a massive mask that covers the whole mouth and it's not so easy to breathe through it, but it's not impossible. I spent the whole night lying there with the mask on while my neighbor alternated between snorting, snoring, and coughing right through the night.  I could block out the astonishingly loud sound mostly, through my trusted Bose noise cancelling headphones, but I didn't get much sleep because it was so hard to suck in air. But I wasn't willing to risk getting the flu on top of my cold so I was disciplined enough to hold on. At one point I must have dozed off and in my sleep removed the mask; so I was exposed for I don't know how long.

Anyway, I'm home now and recovering from this harrowing experience. Could I learn something from this?  I think that I could have reduced the shock of having to go to emergency in the middle of the night, and a lot of the attendant unpleasantness if I had continued to be rigorous about checking my shunt's operation two or three times a day as instructed. At least I would have gotten to emergency earlier and would be in control of the situation rather than being buffeted about by the surprise of a shunt shutdown. It seems to help me a lot psychologically if I am being proactive about the problem rather than being pushed ahead by factors out of your control.

The second lesson I learnt is to always have a supply of heavy duty sterile face masks at hand. I am going to order them from the pharmacy later today. The next time I'm in hospital I am going to keep the mask on all the time. I may even use it when traveling on the train to work when the infection season is on (like right now).

PS The ironic end (?) of this story is that I do have the flu. The initial diagnosis was right.  I only learnt this when I called my doctors to tell them that the hospital had given me the wrong dose of Tamiflu to take home. They said: "you have the flu, the hospital just informed us; the hospital should have never let you leave for home".  The strange thing here is nobody thought to call me and tell me this. I have now exposed my son and wife as well to possible infection. I just don't understand how the medical world functions.  My doctors also told me to get a face mask to protect others from getting my infection. So I send my wife to the pharmacy to get the same mask they gave me in hospital, the 3M Aura 1862+. It seems this mask is not for sale to ordinary citizens. Even if one were to order it from the wholesaler, bypassing the usual routes, it would take 10 days! On it is available right now however, it costs a whopping 90 Euros for 20 masks. We have asked the pharmacy to get whatever is appropriate for the current situation.