Introduction

Prior to my hospital admission for a ketamine infusion for chronic pain I struggled to find information that would help me understand what I was getting myself into. What would it be like, what would happen to me, what would I be doing for the nine days of the hospital stay? This blog follows my experience from deciding to have the ketamine infusion, my expectations and journey through it and out the other side many months later.

I am planning on videoing every day so I can chronicle and upload my experience. I have never done something like this before but I am motivated by how little information I could find and, importantly, how little Australian information.

I have found it difficult to decide whether I am writing in the past or the present as my writings have also been fluid. Please excuse me if I drift between the two depending on how I was/am feeling at the time.

I have no expectations on the end result of the infusion, as my pain specialist Raph said many years ago: Karen. Nothing will take your pain away. To imagine not taking any pain meds and for my pain to go away is like believing in fairy tales.

My inability to get a clear picture of what it was going to be like made me determined to document my own experience, so hopefully someone else who is looking for information will find my journey helpful.

My desire for this blog is for it to become a place where people can share their experiences with having ketamine infusions. I would like to see it develop into a useful resource for people looking for information before they make a choice whether they will have this treatment. If you would like to share your experience please send me an email to: ketmainekaren@gmail.com  You will find other people's perspectives at the very end of this blog.

Background

In 2003 I was involved in a car accident that left me with severe neck pain, degenerative changes in discs and restricted movement in my left arm. I can give a long, detailed history of my prescription drug history, different procedures and treatments that I have had since the car accident. However I don’t believe that it is relevant to this blog.

Prior to the ketamine infusion I was on 25mg of Durogesic (fentanyl) patches that I changed every 72 hours, along with 10mg of Endep (amitriptyline hydrochloride) every night and a top-up of usually two Panadeine Forte (paracetamol and codeine phosphate hemihydrates) about mid afternoon every day. There were also days when I needed two Panadeine Forte at 8am so I could get out of bed. Some days I would take four of them.

I am very careful not to abuse pain killers and if I feel I need to take more than two Panadeine Forte a day then I really think about whether I need it, or whether I just think I need it. My pain specialist says I am on the equivalent of 85mg of morphine, I don’t know why I’m not a zombie but I do struggle getting up in the mornings.

I do know that you have a choice about pain and how you choose to let it affect your life and I manage mine by pretending it doesn’t exist. When I am struggling I remind myself of one of my first visits to Raph, my pain specialist and he showed me the front of a book on pain. On the cover was a drawing of a cartoon character walking up and down along a graph with changing curves. He said to me: the line on the graph represents pain, it is always changing. His comments have stayed with me and on a bad day I know that there will be better days in the future.

I have adapted my life to manage my problem, I try to limit my driving, I can drive somewhere if it is an hour each way but I can only do this once a week. My car is modified so I drive with a spinner/knob - this means I don't have to use my left arm. I can’t carry a handbag or any shopping but walking is really good for me. 

The restricted movement and pain I have is part of me and after 14 years I don’t know any difference. It's how you deal with it that is important. I am lucky that the more I move, the more I walk the better I am.

However this blog is not about my history but my future and whether this procedure will help me. 

Two months before

I have been seeing Dr Raph, in inner Melbourne, Victoria, Australia, since 2003 and in September 2017 I was struggling with my pain so he suggested that I should see a colleague of his, Dr Malik, to discuss whether a ketamine infusion might be useful in helping me manage my pain better.

Malik was very friendly and pleasant and asked me various questions about my medical history. He said that everyone had different experiences and outcomes with a ketamine infusion - some people could be pain-free for a month, three months, six months, a year or maybe it wouldn’t make any difference at all. I decided it was worth the nine days out of my life to take the gamble that I could be pain-free for a while. 

Malik didn’t give me a lot of information on what to expect, apart from the fact that I would have to stay in the hospital for nine days and, even though it is possible for me to work remotely, he didn’t think I should continue working during this time.

My hunt for information

I wanted to find out more about what I was going to be going through so firstly I asked my neighbour Martina who is a nurse. She said that she is often involved with the administration of ketamine infusions so I decided she was a good place to start. Martina said: we start you off really high and then start decreasing the amount and we ask you how you are feeling a lot. You might experience hallucinations – you will be fine. I did not find that this really helped me understand, I needed more information.

I searched online but could find very little. I found a couple of people’s blogs or attempted blogs. They would start off writing but after a day or two into their hospital stay they would stop. I was later to have the answer on why this occurs.

From friends and family I received sideways looks and comments like, “you’ll be having a great time” or “special K, ah....... “ How could I possibly have a good time in a hospital room on my own or maybe, even worse, in a shared room!

My concerns

My concerns in agreeing to the infusion are mainly related to the long hospital stay, at this stage, more important to me than whether it will benefit me. I lead a busy business and social life and being restricted to hospital for nine days is very concerning.

I wasn’t happy to find that the hospital was a suburban private hospital 30 minutes' drive away when we live within easy walking distance of many private hospitals in inner city Melbourne.

Dr Malik told me that he did these procedures in the first week of each month and it would depend on when/if my TAC (Traffic Accident Commission) approval came through when I could be booked in. 

As it was now September 2017 there are only a few months left to fit it in before the end of the year and summer holidays. After waiting a few weeks I phoned TAC and to my surprise the person I spoke to said she could approve it over the phone. It was approved straight away, which made me wish I had phoned earlier. I then contacted Malik’s office and was booked in for 6 weeks time.

I was told I would be admitted on a Thursday afternoon and that on Friday afternoon a PICC line (peripherally inserted central catheter) would be inserted and on Saturday the treatment would start. I found this quite frustrating, that I will be admitted on a Thursday and nothing really starts until Saturday. I hate the idea of being in hospital, stuck in hospital, restricted freedom and restricted privacy – what if I don’t get a private room?

Malik’s receptionist said they used to admit people on a Friday but they sat around all day and weren’t given a bed until quite late in the day so it was decided a Thursday admission was better.

Preparation

Once I had made the decision to go ahead with the infusion my current drugs seemed to be working better in managing my pain. So much of pain is psychological and just by making a decision to try something different seemed to help my perception of my pain. Maybe I don’t need this? I seem to be going ok, I can keep on this going like this, I am not that miserable.

Then I start to read and watch YouTube on people’s experiences with ketamine infusions. This could be a really great thing for me, it would be pretty amazing if I could stop using the drugs I take or take less of them. Then I start (for what I believe is the first time) feeling the psychological pull of my fentanyl patches. How would I live without the patches, that have become part of my existence?

I fill out the paperwork and sign a consent form acknowledging the potential side effects from ketamine. These include dizziness, nausea, vomiting, headaches, bad dreams, perceptual disturbances, confusion, fluctuation in blood pressure, chest pains, falls, euphoria, increased libido, liver function impairment and seizures. None of these worry me, everything has side effects, what will happen will happen.

I have two huge fears: what will I do for nine days and what if I don’t get a private room?

I go online and look at reviews for the hospital and I am not impressed with what I find. There are people complaining that they were in a mixed ward, other patients having to share rooms with people with dementia screaming through the night.

I start plotting how to get a private room. I have private health insurance, but this is TAC so my private insurance won’t cover it. Malik’s receptionist says she will request a private room and also suggests that I phone the hospital a few days before my admission and put another request in.

I discuss with friends how I am going to get a private room, I suggest I can get references from my husband and daughter stating that I am difficult to live with! My GP, Puneet, and I decide that this would work against me - why help the difficult person?

I then think anxiety is a big mental health issue now, so I will pretend I have that as surely they have to cater to mental anxiousness. However, the closer it gets to my admission date the more there is no pretending about my anxiety; I can’t do this in a shared room. I am an adult and I need space and privacy. I am the person who only allows my closest friends to stay in my house for a maximum of two nights, I can’t live with a stranger.

How important is a private room to me,? Maybe I can pay more? My husband Nick says would you pay $1000 a night? No way – but I would pay $1000 for the nine days. I discuss this with Puneet and she thinks this might be an option but I should wait and see whether I get a private room first.

As I am becoming more concerned about whether this is worth continuing with I do more research online. I come across a lady on the internet who couldn’t continue because she was suffering liver damage – now I really want it to work. Imagine going to all that effort to give up nine days of your life to be told part of the way through that they are going to stop the treatment?

I speak to Puneet about having to be admitted on Thursday when nothing happens until Friday and she agrees that I can go out for dinner on the first two nights. I am wondering whether I could stay in a local hotel or go home for those nights – think I will.

I start tackling the ”what will I do keep myself busy part of it”. I make documents of things I need to do, like tidying my inbox, catching up on business paperwork and planning our next holiday. I download lots of books, movies and TV shows – I would have to be in hospital for months to get through the work load I have organised!

I contact a handful of friends telling them that I am going to be really bored and they have to come to visit me. I am blessed with lots of wonderful friends but they are interesting, busy people but hopefully someone will come to visit.

Next thing to sort is the spoilt dog Pippa who rarely spends more than two hours on her own. She will have to spend the nine days with loved Auntie Jenny – hopefully she will be smuggled in to hospital to say hello.

Friends say that I am going to be difficult to deal with and Nick will stop visiting after the first few nights! Although the former might be true I know he will keep persevering.

8 days out 17/11/17

The concern about what will I do for nine days has now changed to: will I be able to achieve all I want in nine days? My lists are growing, I have business paperwork to do but I am concerned I might not be able to concentrate enough to work or study. A friend also suggests that I download audio books in case reading is difficult. Now I am worried that I am too prepared, my fear of having nothing to do seems to have made me very busy. For someone who doesn’t believe she is a worrier I am doing a lot of worrying! I’m also not getting much sympathy from people close to me who say they would love to have nine days with nothing to do, lucky me.

I discuss the drug changes with my wonderful osteopath, Jacques, who says you are going to be so much sharper when you come off the fentanyl. I ask him whether we want me any sharper and he agrees that we don’t!

To cover for the fact that I am disappearing for nine days I try telling people that I am having “a procedure” but I find this prompts more questions so I am now saying I’m having “a medication adjustment” and that seems to be working better, plus it’s the truth.

My business partner Kay and I run an online business so we can work anywhere. She asks me to step away from our business for the nine days but I refuse to, saying I will be bored, I’ll need to work. She looks very worried so I say: ok I promise that if you tell me that I am out of line I will agree to stop working. She looks even more concerned and says and what if you don’t listen to me? I reply with: how about if both you and Nick tell me I have to stop working I promise to do so? She still doesn’t look happy but agrees to this compromise.

Packing

I am starting to pack my case, plus I will have other bags ready for Nick to bring up if I need them – have I mentioned I like to be organised?

Clothing - what will I wear and why can’t I find information on this?  There are apps for packing a suitcase for a holiday but no information on packing for a ketamine stay. I don’t know much about hospital stays nowadays but I think the days of getting into your P.Js the day before your operation are over and now you’re encouraged to wear normal, casual clothes during the day if you aren’t really unwell.

I am inspired by my friend Penny. When she was going though chemotherapy, she got up every day and dressed, put on her make up as if going to work and then lay on the couch for the day. My plan is to get up every morning and get dressed as normal, but I am expecting hospital to be hot. I also know I will have a drip in my arm so I am choosing T–shirts that expose my elbow and casual pants. I do not want to be in P.Js throughout the day, I am not sick. Every morning I will have a shower and put on basic make-up, that’s how I present to the world normally so I intend to continue.

I need to plan my medication, giving this over to someone else to control is not easy for me. I am always responsible for my medication and I follow all prescribed guidelines, however in hospital this will be taken away from me so this is a bit tricky. I understand why I will no longer be responsible but the lack of personal control is an issue for me. When the ketamine infusion is happening under no circumstances would I self-administer any form of medication as this is well outside my normal treatment. However, I am being admitted at 3pm on Thursday and the ketamine infusion doesn’t start until Saturday – I will not be relying on busy nurses who don’t understand my pain needs to give me my pain medication during this time.

As well as the pain from the car accident I also suffer with migraines and use Imigran nasal spray when needed, which is usually between 4am to 7am once or twice a month. In the days before the ketamine infusion I will not ask/beg for my Imigran or Pandeine Forte, I will take them as required. When you have managed your own pain relief for a long time it is unrealistic to hand it over completely to someone else who has little understanding of your situation.

The lack of a private room is still worrying me, thinking of having to share, and maybe with someone of the opposite sex is stressing me. I fill out the hospital admission forms and write on them that I am anxious about this.

Two days before admission

I contact the hospital two days before my admission to request a private room and I am finally told the truth; TAC patients are only given shared rooms. I ask if I can pay extra and am told it is $50 a night – a bargain!!! Yes please!! It comes with the disclaimer “if there is one available”. The hospital says if I phone back at lunchtime on my admission day I will be told if I have a private room.