V is for the viney way
A good doctor doesn’t rely on test results alone, they listen to their patients.
Sadly, most who have a chronic health condition will have had a doctor dismiss their reality at some time during their journey through the health system. Many have been told that their pain is all in their heads, or, like me, that if they, ‘just calm down’ then they’ll be able to wee. Fortunately for me, I have now found a consultant that I can have a great working, professional relationship with. A doctor that I can discuss my health with as two equals.
His name is Dr Richard Viney.
I wish I didn’t have to rely on others to help me manage my health condition, but the reality is, medical input in particular, is essential for me. It’s hard enough carrying around a strong sense of guilt that you are burdening those around you by asking for help, but it is even harder having to rely on the national health service with them (especially in this current climate) spread as thinly as they are. I wish I didn’t need the input of hard-to-contact specialists, but I do. And what’s more, you often don’t get a choice in who your medical specialists are. Granted, sometimes this is because there is a limited team that cater to your needs, but how is it that most of the time we as patients don’t get a say in who we are treated by and what treatments we receive?
Done the right way, the patient has a say in his/her treatment plan, their mental health is cared for alongside their physical health (as like it or not, your mental health takes a hit with anything that happens to you physically) and your doctor makes decisions about your health that are catered to YOU, by looking at you as an individual, not just a textbook case.
I am lucky enough to now be under a fantastic consultant urologist and clinical service lead at the Queen Elizabeth Hospital, Birmingham. It’s nature of the beast that with a supra-pubic catheter, routine procedures are needed at least every 6-8 weeks to change it. Previously, I had these changed under a general anaesthetic. This meant my procedure was a booked in surgery each time. It required a day off work for the operation and a couple of days for recovery. As my catheter was being changed whilst asleep, I would be left with a lot of post-surgery pelvic pain due to medics assuming that being heavy-handed wasn’t a problem as surely, if asleep, I wouldn’t feel it. However, upon waking up, post-surgery trauma and pain was real!
Using ultrasound to find my veins is a common occurrence. At times, children’s sized cannulas have had to be used in my feet/neck.
Top left; a cocktail of oral medication is used pre-change to relax muscles, combat pain/spasms and help with anxiety. Top right; an ample amount of instillagel plus a local anaesthetic is used on the site. Bottom left; we use a 60:40 ratio of Lidocaine to saline solution in my bladder pre-procedure and leave this in during and after. Bottom right; I’m all smiles as recently, we’ve managed to get a cannula in my arm without ultrasound form IV antibiotics.
I had tried catheter changes awake before but had frequently ran into problems which would then require me to have a GA so eventually routine GAs were the norm. This suited me to some extent, I was asleep for it and wouldn’t know about it until I had woken up. However, a couple of years ago, I was faced with a stark reality. I changed consultants to Dr Viney. He was alarmed at how poor my vein access had become because of IV meds and regular GAs. After conducting a map of my veins via ultrasound, we discovered that the majority of my peripheral veins had collapsed. I was left with the options of a permanent line insertion into a main vein or the constant use of my right jugular (a vein on the right side of your neck). This alarmed both myself and my new consultant. Changing my catheter via a GA was no longer an option.
Choices
After lengthy chats in clinic, I was left with two choices to save my veins – A) catheter changes awake or B) bladder removal with a permeant stoma. If they removed my bladder, they were going to have to remove my womb too, due to its likely hood of prolapsing. I was 25 at the time of this conversation. For me, option B was not even worth exploring until we had tried option A.
Trepidation
I was crippled with anxiety at the thought of having my catheter changed awake after being put to sleep for this procedure for so long. The catheter changes I’d had done awake had not been successful and had resulted in emergency theatre admissions, so I felt as though my mind had a lot to overcome.
I discussed this with Dr Viney. He listened. He saw the fear in me at the thought of having changes awake, so we discussed sedation options and a string of counselling sessions. At this moment it dawned on me that not once, by any other medic, had I every been offered counselling to help me deal with any part of my Fowlers journey. The body change, the constant hospital admissions, the scary experiences, the build-up of PTSD I had now acquired - no one had ever offered me counselling for any of the above.
Dr Viney worked on my mind first in order to make me feel comfortable, his bedside manner was second to none and soon my anxieties surrounding catheter changes were lifting.
A new approach
D-Day soon came around. My aunty Sharon, who’s a qualified nurse, was allowed to come with me for some moral support - she has since become my own personal health care assistant who is learning to change my catheter too, so we can hopefully do it from home at some point in the future. Dr Viney had made sure there were many sedation options available for me including a slot in theatre in case we ran into problems. Oral meds on board, gas and air, plus a local anaesthetic in place and aunty Sharon at the ready (with Mama Mia on the laptop for distraction), we braved it.
A success story
It worked! My first one was done, only forever to go! That statement in itself didn’t scare me like it had in the past knowing my medical team were behind making this new way work for me.
The biggest changes
Disclaimer – copious medical jargon to follow…
A new consultant who listens to their patients’ experiences
Finding someone who understands why previous changes in the past have been so problematic was paramount.
A new cocktail of oral Meds
Using oral sedation plus other forms of anaesthetic as oppose to a general has been life changing. I also take meds for pain, antispasmodics and antiemetics.
Lidocaine
This is crucial! I now use it when doing bladder wash outs at home if I get bad spasms. It numbs the bladder wall locally aiding with pain and creating a smooth transition between tube changes. Pre-catheter change, Dr Viney mixes roughly a 60:40 ratio of Lidocaine with standard saline solution. He uses a 50ml syringe to inject this through my catheter and leaves this in my bladder as he’s changing tubes. You see, the solution being left in my bladder really is key – it widens my bladder, allowing room for my old catheter to be removed and the new one re-inserted. This prevents trauma to my bladder wall and reduces post-procedure bladder spasm. We leave this solution in post-change too - it does no harm to leave the bladder numb and at a wider capacity to cope with the new catheter insertion. GENIUS!
5ml balloon
No more no less! Previous consultants have also told me, “Your balloon MUST be filled to a 10ml capacity – it’s the rules!” Whereas Dr Viney was convinced that the balloon being so full was another reason why I was in so much discomfort for weeks after each catheter change. I can honestly say a 5ml balloon, for me, is unnoticeable!
A one third only insertion
We now only insert my catheter one third of the way. We use copious amounts of instillagell – a numbing agent and lubricant – around the catheter site as we drain the balloon and twirl it around a little. Once we have removed the old catheter, we insert the new one no more than a third of the way so it doesn’t knock off my bladder wall or sit in the tip of my urethra. Again, this is crucial as this would cause intense bladder spasms and catheter rejection. Dr Viney asks me then to re-position the catheter myself if it doesn’t feel comfortable. This makes me feel like I am taking ownership of the situation rather than the catheter ruling me.
I have since had almost 10 catheter changes done this way and at risk of sounding too cliché, it really has changed my life.
Catheter changes used to leave me in agony, infectious, and at times, would wipe out weeks of my life laid up in bed on a hospital ward. I feel so fortunate to now have a team who have devised a bespoke way of doing things to suit me and my body, helping me to overcome trauma from past changes.
Experience has taught me to fight for what I know to be true and to keep pushing to be heard.
It can be a massive struggle to find a doctor who truly listens and sees your condition for what it is, taking your levels of pain seriously.
My advice would be to not give up hope of being heard, just shout a little louder.
Written 8th November 2020