Going Up

oing up

For the chronically ill there are a lot of visits to the hospital. Not just admissions, there are also visits to specialists in hospital outpatient clinics. I am very familiar with the Level 6 clinic at Auckland Hospital.  I’ve been going there for years.  Gastroenterology, General Surgery and Immunology all run their clinics from the same place, the pathology rooms are just down the hall. The neurology clinic happens just upstairs. On a regular rota I have been seeing all of them. And today, I went for what I hope will be the last time. I know I can’t expect it will be forever, but why not hope?  So many of my wishes have come true lately, so many lucky things have been happening for me.

My immunologist is a quiet-spoken man. I’ve written about him before, he is a superhero, that kind of doctor who restores your faith in the medical system. After he invited me into his office he said in his measured voice “What’s been happening?”

“LIFE!” I enthused, “I’ve been busy living life!” His lips twisted in that lets-be-scientific way and he asked a different question, followed by some more. He looked at my file, shook his head and smiled. We discussed how strange (but welcome!) my remission is. He used a word not many doctors use: “miraculous”. And he used it without even a hint of tongue in cheek. He explained that they had searched high and low for an objective test that could unequivocally demonstrate the difference in my condition from before, to now. They just can’t explain it. I observed his wonder at my remission with mild surprise. I forget sometimes, what a different person I must seem to him, this new life fills me with joy, but I think the shock of the change is fading for me. Today, I’m wearing bright clothes, coordinating accessories and my face is fully made up. Even my nails are done, thanks to my new side job. The Rachel he met a bit more than a year ago sat slumped in the same chair, colourless, exhausted and nearly defeated.

“You were so symptomatic…” he reflected. “And look at you now!”

He agreed that I don’t need to attend clinic anymore. And that means no more Auckland City Hospital!!! I’ve never been so happy to farewell someone.

“Come back if you need us again, you may need to have another course every few years, but hopefully not,” he smiled.  Then he stood and said “…well then- give me a hug!”.  We hugged, patient and doctor. We hugged in that slightly awkward but full of feeling way, and I hoped that flowing through my arms he felt my gratitude. I stumbled over my words, something about wishing there was a way I could adequately…
“Just keep doing your good work” he said.

I grinned at him, waved, and walked out of that clinic.  Past all the chairs where people less lucky than me sat, round shouldered, weighed down by their health burdens. Past reception, where my file would be handled for the last time. Through the foyer, past the best barista in Auckland, who has served me more coffees while I’ve been in my hospital nightie than in my street clothes.

By the time I reached the carpark lifts, my heart was already soaring.
The elevator doors opened “…going up?” asked the man in the lift.

“I believe I am” I smiled, stepping inside.

Fingers Crossed

At last.  I have a new neuro.  Henceforth referred to as The Newro. 
 Of course, I don’t currently need one. An irony not lost on me this morning!

fingers crossed

I am still full of the new-doc-jitters that some of you know all too well from first hand experience. You’re not sure how much info to take with you. You’re not sure if they will like you enough to want to help you. You’re not sure if you will be the tenth in their clinic, or the culmination of a very bad week. You do know they will be time poor, that goes with the territory.  You know they will be very very smart.  And that makes you a little trepidatious, because so few of the very very smart ones have social expertise. You steel yourself to answer all the questions without being extraneous or verbose. You hope that you’ll just be able to converse. Like humans.  You decide your plan is to just turn up and talk about things, because that seems the most sensible thing to do.

In addition to these new-doc-nerves, I feel a strange sense of illegitimacy.  It feels profoundly odd to be heading into The Newro’s rooms when I am feeling so well. I doubt if he has any well patients at all.  But if I don’t take this outpatient appointment with him, introduce myself and explain why I am hoping he’ll take me on, I may find myself sick again and without a neurologist. In our public system,  that will mean a long delay before I am on the neurology outpatient books again. I guess I am insuring myself against possible relapse, getting my ducks a row. I was first recommended this neurologist over a year ago, when we paid to see a private Rheumatologist, so we could rule some things out. He felt I needed a Neurologist who had an interest. And he knew one he thought would be a good fit.  Then six months after that, my neuro-immunologist asked me if I had a neurologist I would like to be referred to. I remembered the name of The Newro and the referral went in. So it’s been a convoluted journey.

I’m secretly hopeful he might have a fresh perspective on things and might be able to shed some light on why I have responded so beautifully to high dose steroids when it doesn’t seem to do the same for all Dysautonomia sufferers.  My immunologist and neuro-immunologist are at a loss about that. And I wonder if he has some theories about cause, and some ideas of what we should do if it all comes crashing down again.

I’ll write some more after the appointment. Right now, I’m off to my girl’s school assembly.  She’s in line for a certificate and I want to wave at her and see that shining face grinning back.  I’ll be walking to school, up the hill. I won’t take half an hour to do it, like I used to, with sitting stops staged along the way. I won’t need time to gather myself before the other parents arrive. I’ll leave with five minutes to spare, plonk myself down beside one of the mums I know, smile and chat and be the ‘normal’ person I am becoming. After that, it will be straight out to do chores before picking up the hubster on the way to the hospital. Me at the wheel. (Did I tell you I have new wheels?  So exciting! Even more so because we didn’t have to buy something mobility compatible.  We just bought a used car straight off the lot. It was lovely). So many things in one day. I remember how doing one thing in one day was sometimes too much. I’ve come a long way.

I will try to be mindful, today especially, of how it was before. I want the Newro to understand how vastly different things are to how they were. I want him to offer to help me if I start to slide back there. I hope it will go okay. Fingers crossed.

 

What would you do?

I’ve been doing that thing patients do.

Waiting.

I’ve been doing it impatiently, because I’m like that. I goes like this. I’ll be going through my day and the thought occurs, as it regularly does:

How can I keep going like this?

Which always leads to the next thought…

Am I doing enough about it?

What would you do_(1)Well, I’ve been fighting for years to find someone who will investigate the cause of my Dysautonomia and consider treatment.  Last year, I found two great immunologists. Which brings me to the waiting part.  It’s like a circle of impotent wishing.  Drives me a bit bonkers, but that is the price you pay for not paying a price when it comes to medical care. We have this free medical system here and I am so grateful for it (because by the time I got around to organising Private Health Insurance, I was already deemed ‘uninsurable’).  If I’d been living somewhere else (like the US), my situation would be dire.

So I’ve been waiting (albeit impatiently!) for the immunologists to get back to me about the possibility of IVIG.  At the end of last year I had the tests they were hoping would offer a compelling base line. But the tests didn’t provide the strong results we hoped for.  It is one of the most incredibly frustrating features of Dysautonomia, that our tests don’t always catch our bodies behaving the way they do.

My tilt table test was ‘unremarkable’. Instead of my trademark drop in blood pressure and a heart rate that drops through the floor, my blood pressure was high.  The entire duration of the test was a painful torture for me, due to the pain in my pelvis and hip when I am weight bearing. I suspect the pain brought my blood pressure up, buoying my system into a false negative TTT.  But you don’t get a ‘do-over’, and even if I could, the pain issues I am having are still being explored, we know it isn’t structural; it is possibly neuropathic.  Another needle in the haystack.  Either way, it’s not going away overnight. By contrast, the gastric emptying study showed “an abnormal pattern of gastric emptying and small bowel transit compatible with (her) known Dysautonomia”.

And I am only guessing… but I think it is clear that more significant results would have made for a different outcome.  Fortunately, and sometimes unfortunately, the medical system functions on objective data. That’s just the nature of the science.

I had a phone call last night from one of the Immunology outpatient doctors at Auckland Hospital. He was a lovely person who was very thorough with all the details.  He outlined the plan for me. I will start a six month course of methylprednisolone pulse infusions in February.  If I respond well to the steroids, this will give us a better indication of whether or not I have an autoimmune aetiology.  That just means that we will try a ‘suck it and see’ approach.  If this treatment works for me, it points towards my problems having an autoimmune cause.  It has been tricky to establish this point because the tests I have had done have not shown auto-antibodies for the usual culprits.  The main one, the Acetylcholine Receptor antibody, is negative.  According to Dr Vernino, 50% of his patients with presentations similar to mine, are sero-negative.  That’s like one in two. The flip of a coin. That’s why I haven’t been able to just sit with a doctor response of ‘it’s not auto-immune’.  I guess I need proof that it is not, just as much as proof that it is, before I can put that theory to bed.

I am also desperately attached to the idea that my problems might be immune mediated.  I prefer this possibility to many, despite the fact that treatment is not without risks.  I prefer it because it actually has a treatment pathway.  That’s a hope-inducing fact. Apart from my pacemaker, I’ve been languishing in the progressive no-mans-land of Dysautonomia, without treatment, for five years.  My symptoms are ‘managed’ (ha!) with a range of medications.  But none of that is addressing the elusive cause.

If something was wrong with you, if it changed your life and had an impact on your family… would you be able to sit back and accept the line; ‘We don’t know the cause/it is too hard to find the cause/ just accept that you have this thing we don’t understand’?  Well, I can’t. I’d rather go through the frustrations and exhaustion of searching for answers than just accept the ‘We don’t know’ line.

And maybe that is a defect in my personality. Or maybe it is a strength.  Either way, it doesn’t feel like a choice to me. I welcome the opportunity to try methylprednisolone.  It is the first proactive thing that has happened for my condition in five years. And if it doesn’t work?  I really don’t know what is next. If anything.

Maybe that is when I have to look at accepting some things. And that makes me want to drop to the floor in a full tanty. So I’m not going to think about that unless I have to.  Is it wrong to search and search for a cause in the hope of arresting the nerve damage?  I’ve already seen the ways this has affected my body.  I don’t need an imagination, or the facts, to see where it is headed.  If I can find something that will halt the slide, I feel like I should throw everything into that search.  Isn’t it what most women would do?  It’s not just about fixing this for me, it is about finding the best way through the maze for me and for all the people in my world.  It’s not self-indulgent to think they need me.  They do.

What would you do?