Orla Tinsley: I have been in earth-shattering pain for three weeks. My consultants don’t know why

I have been in earth-shattering pain for three weeks and I have been in hospital for one. What I mean by earth-shattering is that my earth, the ground beneath my feet, breaks into a million little shards and spikes into my skin, causing sharp consistent pain when moving.

It’s in my calves when I’m walking and when being dialysed.

None of my consultants can say why it is happening. The pain relief being offered does not work. After dialysis, a life-saving treatment that I must have three times a week or by the end of that week I will go into a coma and die, I pay cold hard cash from my depleting bank account to travel to my local acupuncture place to get acupressure. It is not as available in Ireland as it was in Manhattan, but I am grateful that it is available at all. My doctor arrived from Mongolia less than a year ago and he can do with his hands what our medical system does not offer and what morphine cannot fix. After the massage, I have two to three hours of relative freedom before the pain starts and builds again, layers and layers cementing each foundation with a terrible weight.

I drag my body. No one knows why.

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Bad experiences

It began after a drug I was given in January and when I was a child I had very bad experiences with it but no one can remember exactly what these were. Since I was a child, neither do I. It should be enough, but it is not. My team want the drug to continue.

This is sometimes how post-transplant life is, in that you do the things you do not want to do for the greater good of longevity or quality of life. When you make the informed decision to go on a transplant journey – although there is little choice but death – these are understood bonds.

In my 35 years of experience, I have felt the ecstasy of miracle move through my bones and I have gloried in the glow of rebirth.

So, nothing is impossible.

It is hard to accept when there are no answers. After one week, I demand a change – better pain relief and something verifiable that qualifies what is happening. No one can give it and they are trying, hard. I wait two days for a bed and I cannot dialyse properly, which will kill me faster than anything else if we continue without it.

I push for care.

I cry in pain.

I have to tolerate the treatment for as long as possible to stay alive, but no one can relieve the pain that builds the longer I am on dialysis. Finally, after two days of morphine, the pain stops. The pain is a full-bodied contraction in the lower limbs. It is sharp and unrelenting.

I am living in a windowless room in the Mater trying to solve this.

After the last hot meal around 4.30pm, everything quietens down on the ward, but it makes no difference to me, in the room nothing from the outside can be heard

Short bursts

On the second weekend, we decide to break up the treatment. I am grateful. Three hours on two consecutive days of dialysis to flush out the system in short bursts. The thought is that this would be less painful – not four hours. On the first day, the nurse set me up for four hours. Surely, this is a mistake. After two days of morphine and a clear indication from the team what was arranged, it shouldn’t be for four hours. It drags on with no confirmation and, since we are adding an antibiotic into the mix, I have to stay on for an extra 30 minutes while they order the antibiotic and get it from the pharmacy. They tell me about the antibiotic that is not yet ready. These things happen. The extra time makes me nervous but maybe I am cured, I think, because the pain has stopped. Thank goodness for whatever has happened. We have done something right. Morphine or time, maybe.

Team work is the dream work! I say to myself.

[ My only hope is a living kidney donor and that is difficult to unpack ]

The next morning, I am told that the second three hours of dialysis treatment is two hours of iso (isolated ultrafiltration). This is not a dialysis treatment but a removal of fluid. Only excess fluid is extracted from the blood and a full dialysis does not happen. I am certain the prescription was: three hours of full dialysis on Friday and three hours of full dialysis on Saturday. That morning, the nurse said I am set for two hours of iso. I confirm this is not the prescription. It goes back and forth, I give up, shrug. They must be right.

Bad Reputation

I turn on Joan Jett. With 28 minutes left, I am halfway through Bad Reputation when a nurse walks in to tell me the doctor wants four hours of dialysis so we will need to add two to the two I am already on. But, I say, I am not on dialysis, I am on iso. No, you are on dialysis, she says. The machine reveals what is programmed: iso. The next day, the consultant confirms my understanding of the prescription to be the correct one.

So what went wrong?

It is something to do with communication, with translation, that I cannot work out. So often things go right, but often things go wrong.

As a patient, it is upsetting – my life is in their hands.

As an activist, it is frustrating – my voice is not just mine, it is those who came before me and who are gone and who will come after me.

And as a writer – sentences run at me daily and whether I have the energy enough to catch them or not is not guaranteed. Should I even speak this out loud? I do because, after six years living in the heart of it, I am still a New Yorker. And before all of that, I am me.

Days before my admission, I delivered the 30th Carmichael Lecture at the Royal College of Surgeons. It is one of the honours of my life to address the past, present and future of Irish medicine. I had been in this unexplainable pain for six days by the time the day arrived and I did not want to represent the miracle of transplant on such an important stage without being fully in control of my body. I go virtual.

The talk is about how to make things better. I think of it a lot while in a room with no view to the outside world for five weeks. It’s a negative pressure room for people with infectious diseases which I do not have. There are four of these on the transplant unit and I cannot imagine recovering from transplant in one. I don’t need to medically be in this room and there are other people on the ward who do. It feels like a punishment, like a cruelty, although these rooms are doled out arbitrarily, I am told. Of course, no one wants to be in them. The Bat Cave, I call it, because attitude helps. After the last hot meal around 4.30pm, everything quietens down on the ward, but it makes no difference to me, in the room nothing from the outside can be heard. I never know what time it is, day or night, unless I look at my clock or measure moments in relation to the last meal. There is a small window that looks on to the nurses station and, beyond that, the light from the outside shines through another patient’s room opposite mine.

I can see the outside, three windows deep.

[ Life is too short and unpredictable, so eat your curry chips now ]

A patient raised funds for light installations to make rooms more bearable – what a genius idea. This is the same remarkable person whose hard work bought the transplant unit new chairs and new TVs. This is a hero at work. My understanding is that the hospital chiefs saw a mock-up of these rooms with the installations late last year. So, I wonder, why has nothing changed? The challenges of darkness are many fold and, in some ways, these five weeks have been a learning experience. I have had to sit with myself, with the reality of the situation and the unreality of the inhumane room. It has solidified my gratitude but it has also made me angry and irrational. It has delayed my ability to heal because I could not see the sky.

But this was unlike the last time they put me in one of these rooms.

Back then, I was in sudden end-stage kidney failure and could not move. At least now, I can get up and walk around, but not much. As anyone with a chronic illness knows, hospital is not a holiday, it’s more of a gladiator match.

Renal: ready!

Transplant: ready!

Neuro: ready!

Who knows who will walk through the door next. You have to be in the room. The installations were needed yesterday. The money is there, the company is there and the specs have been delivered.

Let’s get it done. We can make it better.

You can read more of Orla Tinsley’s columns here.