A few months back I pushed to see my neurologist again as I was long overdue my follow up and things had got much worse as I wrote about earlier in the year. After several phone calls, I eventually got a date for a review two months later. How I miss the efficiency of US healthcare, even if I did need insurance!
I had an awful 3 hour wait in the waiting room while having to wear a face mask to protect me from the perfumes of others, and during a heatwave! The masks however, weren't enough as they kept getting saturated and needing a new one until I ran out of them.
My symptoms became more and more apparent to others, as well as the ones that I can hide to a point. By the time I saw the Dr I was barely able to walk or speak, and couldn't control my left arm that kept jumping. The pain in my head was becoming blinding. The Dr saw first hand what the start of an attack looks like, even though I'd done my best to protect myself with masks and moving as far from people as was possible. It took me over a week to recover from this attack.
We updated her on what was going on and described how the chemical intolerances were getting worse and had me living in a bubble at home. I told her that all my autoimmune symptoms were worse when I was exposed to one of my numerous triggers, meaning that ALL my 5 autoimmune conditions flared AT THE SAME TIME. She agreed that really I only have one condition, Autoimmune Disease, and that splitting them all up into different specialists depending on a sub-set of symptoms really wasn't working. I need a holistic approach.
Coupled to that, I now react to many, many drugs given by each separate consultant, I was running out of options. In fact, I thought that I had run out of options. I've come off all medication as a result, except my morphine patch that I can thankfully tolerate for now.
Then this lovely Dr, who takes the time to look at me holistically, pulls not one but two options out of the bag for me!
Option 1, Plasmaphoresis
The first option isn't a cure but can help to manage the condition. It's blood plasmaphoresis. It's similar to dialysis where it would pass my blood through a set of filters to filter out the toxins that my body can't cope with and filter out any antibodies (as well as platelets) circulating in my blood.Plasmaphoresis is carried out in a series of treatments, 2-3 times a week for 2 weeks. The hope is that I can manage symptoms for a while before environmental toxins and food triggers cause me to produce more auto-antibodies. At this point, I would need another round of treatment.
Plasmaphoresis is a management not a cure. It's like being on kidney dialysis (management) while waiting for a kidney transplant (potential cure).
The other concern for me with plasmaphoresis, is that I already have very low platelet numbers as my immune system destroys them within hours. I need to ask what extra risk this would pose as I don't have any platelets to spare and my blood doesn't clot very well as it is.
So what's the second option?
Option 2, Autologous Stem Cell Transplant
The second option is an autologous (my own) stem cell transplantation.
This is very much like the treatment for leukaemia. The main difference is that I don't need to find a stem cell donor as my own stem cells would be harvested and cleaned for transplantation later.
This option is, to me, the scarier one. I'm severely chemically intolerant and this treatment has not one but two chemotherapy stages from what I've read.
I will need to have chemo to stimulate the release of stem cells into my blood so that they can be harvested with a blood donation.
Once the stem cells are harvested, I would then need intensive chemo to destroy my immune system as it's my immune system that attacks me (instead of cancer attacking me).
After the immune system is destroyed my stem cells can be transplanted back into me in order to reboot my immune system and start over again. This is my chance at a cure.
So far I haven't discussed this in detail with a Dr as my neuro isn't able to prescribe this course of action. My rheumatologist however could. Sadly, I am between rheumys after mine had enough and quit the NHS a year ago. I'm looking for a new one but am stuck in a very long waiting list again.
My worries about the stem cell transplant are mainly around the chemotherapy. I can't even tolerate IV antibiotics or a local anaesthetic at the dentist. Understandably, I'm really worried about high dose chemo.
What I want to know is; 1) Can I have my stem cells harvested from my bone marrow instead? I've had a bone marrow biopsy and I know how painful that was so I can only assume this will be worse, but potentially worth it.
2) Can my immune system then be destroyed with radiotherapy instead of chemotherapy? I feel that I would better tolerate this.
The other worry I have is that I would have to be an in patient for 1-2 months according to the NHS website, as I would have no immune system and be at high risk of infection and complications. During this time I would be reliant on being looked after by staff who do not know me. I cannot have anyone with perfume or scents near me, I can't tolerate cleaning fluids used in hospitals and also I have so many food triggers that last time I was in hospital for a week (6 years ago when I wasn't as bad) I was fed gluten free apple crumble and custard twice a day every day as they didn't do anything else suitable. I'm seriously afraid that I will be forced to eat dangerous foods as I can't live on crumble and custard for 1-2 months. Then again, maybe without an immune system I will be able to eat more foods. Who knows?
Of course, so far I haven't actually found a consultant who can prescribe treatment for me. My neuro is looking for someone who can help but waiting lists are really long. I've already waited 10 years since my accident with blood products started all this.
My emotions are all over the place. I've been given a glimmer of hope but it's still a very long way off, if it's even possible at all. I'm afraid to get my hopes up as I've become used to disappointment but this is also the only real hope I've been given in a decade.
I'm so glad that we have been financially sensible for years and got out of debt and started saving. We are now looking at trying to find a consultant privately to try to get more information and hopefully move things along before I'm too sick to tolerate the treatment (assuming of course that I haven't already got to that stage).
Time is really not on my side any more and it scares me to think that I might not be well enough to go through this because it's taken so long to be suggested. The only control I have is to find the money to pay for as much of this privately as I can.
We are making up for past mistakes and circumstances so that we can actually retire but for now it seems that the money we can save will be going towards medical costs instead. Then again, hubby wants to be able to retire with a relatively healthy wife. If things don't change we might find instead that hubby is forced to retire to care for me with not enough put aside to live on. That's a really scary thought.
To anyone reading this, please know that your true wealth is actually your health. Don't take it for granted.
I've shown that I can recoup money losses but so far I haven't been able to do much about my health losses. I really hope that I can change that so I can enjoy my daughter more and look forward to a happy retirement with hubby. My little bit of hope stems more from having been frugal enough to be able to pay for some private healthcare. It feels a little bit more within my reach. I wouldn't have this comfort if I hadn't been frugal the last 9 years. For this, I'm grateful.
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