I have PoTS – Cardiology Update

The big cardiology appointment.

I was expecting to write one of two posts. One would be me celebrating a diagnosis, we finally had a name for the symptoms and the months of feeling so poorly. The second would be me yelling PLOT TWIST as something completely new and random popped up.

What I am going to write is neither.

I have a diagnosis, in fact apparently I have more than one.

I now have a diagnosis of Postural Orthostatic Tachycardia Syndrome also know as PoTS as well as two other conditions that effect my ability to control my blood pressure.

What are these conditions? I have no idea because my consultant wouldn’t allow me a minute to write them down and now I can’t remember.

I don’t think I can explain my appointment any better than traumatic and a personal attack on who I am, the way I am and the things I do.

I left my appointment questioning everything I do, think and am. Wondering why I can’t do better, why I can’t do things that others with my illnesses can, was I not trying hard enough?

I have spent many years learning to accept, work with and be proud of who I am and my disability. I spent years being told how terrible wheelchairs are but mine saved my life by giving me one. Without my wheelchair I was house bound unable to do anything.

My life is difficult I won’t deny that but I have a wonderful life. I love my home, the city I live in, I have an amazing partner, wonderful friends and family. I have the opportunities to speak up for what I believe in, to raise awareness for disability and I am proud of that.

I have days where it’s harder to see all the good or I question what the hell I am doing with my life. However, I always circle back to the fact I am doing what I can do, what my body needs and I have a wonderful life.

However, whilst sitting in the consultant’s room on a gloomy Tuesday afternoon I did not expect someone else to repeat some of my worst thoughts back to me. “What are you doing with your life?! You don’t work, you’re 21 and in a wheelchair!”

What bothers me the most isn’t the fact that he believes my wheelchair to be a disposable item that I use because I can’t be arsed to walk; but the fact he belittled my life without knowing anything about it or me.

Having a consultant yell some of your worst thoughts about yourself at you makes it very difficult to remain positive and I very quickly felt myself becoming smaller and smaller whilst diving into that black hole in my head.

I left my appointment in tears, I cried for three hours straight and three days later I was still randomly bursting into tears. My tears are sadness, frustration, depression and anger because deep down I know that I didn’t deserve that. I know that it was unprofessional, uncalled for and discriminatory. If I hadn’t of been a wheelchair user, a young person or a person on a lot of high dosage pain medication I know I would not have been treated this way.

When James woke me up that morning I was heavily symptomatic. Upon arriving at the Cardiology department I had to get up from my wheelchair twice. Once for height and weight, the second for an ECG. This meant by the time I saw the consultant I was even more confused, tired and spaced out. What I needed was a slow paced appointment, which is most definitely not what I got.

Several times I had to ask the consultant to clarify what he was asking me as my brain could not compute what he was asking me. James stepped in at points to help however, asking for clarification just annoyed the consultant further.

We didn’t particularly go over my medical history and when he asked about previous health problems two words into a sentence he would decide that was enough. He most definitely didn’t respect me as a disabled person or a chronically ill person but just someone else with Chronic Fatigue Syndrome and this seemed to be the condition he clung onto the most. In fact he was very shocked and even more annoyed when he asked me how my illnesses started and I told him I had a rare autoimmune condition. He hadn’t heard of it which also bothered him.

The consultant demanded I stood up from my wheelchair and walked, I stupidly obliged. I then semi collapsed into James arms due to pain, dizziness and a high heart rate. The consultant never explained what we were doing or what he was about to do. This did make me uncomfortable.

Once my blood pressure (BP) and heart rate (HR) were taken whilst lying down he asked me to stand for BP and HR again. I was then told I had to stand there for three minutes so they could check my BP and HR again after three minutes. I explained I couldn’t stand there for that length of time and James had hold of my arms to help me with balance, pain and to keep me safe in case I did pass out. We were shouted at by the consultant for this and James explained that if he let go I would fall over given my current state. The consultant decided to take my BP and HR at a minute and a half and I sat back down.

Going through my medications he began shouting at me for the number of medications I take and demanded to know who put me on each one. I think he was expecting me to say my GP but in fact all my medications were originally prescribe by Pain Management, Gastroenterology and Endocrinology.

I was repeatedly told how bad these medications were for me as though I didn’t know this. Also in a way that made it seem like I receive zero benefit from them which is not true. He felt he also knew the purpose of the medications better than I did so when explaining that they were used for different purposes it didn’t go down well.

He said “You’re stuck in downward spiral. The last 12 months have been a downward spiral for you. You have to stop this. Stop using the wheelchair. Start moving and doing things”. Although the last year has been really hard for me James and I joked that the previous year had been a lot worse. Which is true because that’s when the biggest change happened. As you can imagine though the consultant wasn’t happy with this comment.

We were discussing physio and exercise. I explained that prior to my hospital stay I had been attending weekly Pilates, Swimming once a week and doing my Physio in between. All of these things I have worked incredibly hard on over the last 10 months and it’s something I’m very proud of.

Unfortunately, the consultant found this difficult to believe and shouted “I don’t care what you were doing before. I care about what you’re doing now which is nothing!”. I explained that it was no longer safe as I was passing out. I have been going swimming still under James supervision however, I’ve had to pull back what I was doing hugely. As well as that my physio has stopped all physio until I had a diagnosis so she knew how best we worked with this.

“You don’t have an actual heart condition!” “I don’t care if you in pain or if the physio’s say to stop because you’re in too much pain. You have to keep going!”

I understand PoTS is not a heart condition however, it does affect my heart rate which contributes to my symptoms and passing out. I was frustrated by my lack of physio but I too believe it was the safer option until we knew 100% what we were dealing with.

My appointment was mainly me being shouted at. The consultant also wasn’t clear on whether I had PoTS or not as he was constantly shouting about the things I was doing wrong as though it was all my fault and I had brought it on myself.  However, we asked to clarify at the end of the appointment if I had PoTS. He said I did amongst other reasons why my body can’t regulate its blood pressure properly. As I said though when I asked him to repeat these things so I could write them down he said no.

The consultant is handing me over to a Cardiac Nurse who will discuss my options with me and be my main point of contact. We will discuss medication options as well as lifestyle changes; some of which will be very difficult for me. I was told I would have to wait several weeks for an appointment to come through. So despite seeing the consultant I currently still don’t have any support.

I also have to see the consultant again in January to see how things are going. However, due to how this appointment went I am not comfortable with going back. Therefore, with the help from my Mum and Matt I will be asking PALS for help and for them to possibly be with me for my appointment.

I am relieved to finally have a diagnosis. I know that doesn’t make sense to some but for me it’s something to celebrate because knowing what the cause is can help us manage my symptoms better in theory.

However, my appointment was humiliating, degrading, traumatic and painful. It was such a difficult appointment for me to navigate when feeling so ill. I am assuming the consultant missed the lecture on how to interact with disabled patients and how to adapt appointments for the needs of the patients. I found being shouted at very uncomfortable and very overwhelming.

I left the appointment in a really bad place and it has taken a while and will still take some time for me to bounce back. I am grateful to James, my family and friends for helping me see how wrong this appointment was, the way I was treated and for reminding me who I am.

Before I am asked sadly I don’t have much option in terms of consultants I can see. Specific PoTS consultants aren’t overly common. There is no specific PoTS consultants in Wales and I think the nearest one to me is London. The consultant I saw supposedly has an interest in PoTS however, from the way I was treated I believe he doesn’t particularly want to deal with me as PoTS is not a heart condition. Unfortunately for him PoTS management is usually the job of a cardiologist and occasionally a neurologist.

If you have been or are going through something similar please know you are not alone. There also people such as PALS out there that can help you with these situations. I will leave any relevant links below. Also reach out to the chronic illness community or your friends/family if you need some support or someone to remind you that this is not your fault because it isn’t at all!

PALS England

PALS Wales

Side Note:

October is Dysautonomia Awareness Month and  October 25this PoTS Awareness Day and I will be blogging about my diagnosis ‘journey’ a bit more as well as some awareness about PoTS and what it is.

I am a few days behind but I will also being taking part in the #PoTSUKChallenge over on my Instagram Stories (@worldin_mywords) and I will save those stories to a PoTS Challenge Highlight.

 

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