Note: This is my personal account on the occasion. It is possible that my understandings or impression were wrong. Please don’t make judgement based on this post.
I had my very first meeting with a Cardiologist. It was to assess Orthostatic Intolerance and discuss about possible treatment. Appointment was at 10:20 am, which is too early for my body. I had no idea how I would be. I just had to face it and go with the flow.
I half collapsed in the car. I put the seat all the way down to be horizontal, and I was twitching like a fish out of water. By the time I arrived at the hospital, twitching has stopped from being horizontal.
Traffic was smooth. So, I arrived very early. Dr PW’s secretary was pleasant and remembered my name. Soon after the arrival to the clinic, I started collapsing again. They gave me ECG room to recover, and comforted me that I didn’t need to feel bad about it and I am not the first patient to feel unwell at their clinic.
While I was there, they did ECG on me. Judging from the fee, it was standard procedure for the first appointment.
I felt comfortable with Dr PW. He thanked me for bringing the note I prepared for the appointment. He meant it because he read it thoroughly through the meeting. He actually asked if I wanted to add anything else to the note I prepared. It actually surprised me. Many doctors don’t like their patients bring a long note.
He doesn’t have computer in his office. He keeps his notes in notebook and into voice recorder. When he first used the voice recorder, I assumed it was the end of the meeting. Then, I got surprised and confused when he asked more detailed questions from reading my note. Once I realised it was also his note taking, I became relaxed.
At the beginning, he talked vaguely and I got a little confused and felt I wasn’t at the right place. Soon, it changed and he discussed about things openly with me.
First of all, he is a Cardiologist and not specialised in Orthostatic Intolerance (OI), Postural Orthostatic Tachycardia Syndrome (POTS), or Dysautonomia. These are rare conditions and not many people knows about them, I think he included himself. He told me that I could have a full autonomic nervous system assessment at Royal Brisbane Hospital to see if I have a primary Dysautonomia and it is done by Neurologist. With a little talk, I realised he wasn’t suggesting to seek help from them instead of from him. He informed me with a possible option in the future.
Probably, he was trying to tell me that OI doesn’t really have specialist. Well…, it is just like ME. Although ME is categorised as neurological disorder, Neurologists at my local hospital don’t know about it, therefore I cannot have any help from them. Rheumatologist said I didn’t have MS, while I believe MS is really a Neurologists’ territory. I really don’t know how they draw borderline between their speciality territories.
I’m grateful for any help from open-minded doctors in their speciality area, since ME is multi-system disorder as well.
He kept explaining that most of POTS are secondary to other illness, such as Parkinson’s Disease. (I know there are many other illnesses and diseases that cause OI.) He uncomfortably said that my case is unusual… I think he was saying that the treatment of my POTS is really to treat ME, so that it makes it difficult to treat me when there is no effective treatment for ME. (I know he admits to his patients that he doesn’t know about ME/CFS. I can appreciate his honesty and straightforwardness.)
I now realised he was cautioning me not to keep my expectation high. I’m sure he got the message during our discussion that I’m not expecting him to cure me. I’m just desperate for any treatment that could improve my symptoms/disability so that I can do something with my life.
He was hesitant to give Tilt Table Test because it will make his patient very unwell for a week.
First we discussed about ECHO Tilt Table Test. I was curious about it when I heard about the test. He mentioned ME advocate doctor ‘s name, and it was clear to me that Dr JW is behind the Dr PW’s ECHO Tilt Table Test.
Dr PW rather uncomfortably explained that ECHO Tilt Table Test is experimental. Its data won’t give any clinical benefit such as assessment or treatment plan. There is no use for me to go under the distressful (and possibly expensive) test if the data cannot be used. So, I decided not to request ECHO Tilt Table Test, although Dr PW assured me that he would give the test if that is what I want.
Tilt Table Test is a little different story. Its data can be used for clinical assessment and treatment plan. Although Dr PW was reluctant to give the test and although he acknowledges I have severe Orthostatic Intolerance, he wouldn’t give any official diagnosis without the test. I was sure that it is a necessary test for me in order to investigate and to explore any possible treatment.
Since I’ve been severely unwell for almost a decade and it is more likely than less likely that I will be severely unwell for more than a decade, going through extra unwellness for even 2 months would be worth to have this investigation. If POTS is not the case, then, I will move on to investigate the next possibility.
As for treatment, he suggested to take 2 to 3 litre of fluid a day and increase salt intake. He doesn’t have the exact amount of salt I should be taking, but suggested to add extra salt to each meal.
He asked about my bladder, bowel problem, and sweating. I think my bladder is okay at the moment. (Sometimes I need to visit toilet frequently during the night, but it is stable at the moment.) I have bowel problem. And my sweating is abnormal that I don’t sweat as much as I should, which is different from majority of pwME.
He also suggested to eat small meals frequently, instead of having one big meal. Then, he assumed I was already doing everything I could to minimise the symptoms.
The next treatment option would be Fludrocortisone depending on the test result, then the last resort is to fill lots and lots of papers and forms to get Midodrine from America. While he was explaining, I sensed he was not sure if these treatment are for me. However, before the end of the meeting, he spoke to the voice recorder that I could be a candidate for those treatment.
I think he was relieved that I’m not expecting him to cure me. I want to investigate if POTS is one of the causes of my disability. And if it is, I want to try treatment. My expectation is realistic. I sensed his uncomfortableness about discussing issues outside of his speciality area. However, he happens to be one of the rare doctors who has knowledge about OI and POTS with authority to prescribe Tilt Table Test. I need his help. At least, I got the feeling that Dr PW would give me the opportunity to give something a try. That is more than enough for me.
I asked Dr PW if I had to make another appointment after Tilt Table Test. He said that was not necessary because he gives the test.
Dr PW’s secretary looked after me and booked me in the Tilt Table Test in October. I became anxious because it is at 8:45 am. She explained it has to be early because I have to fast for 6 hours prior to the test. And the other test spot is 8 am. She picked the later one for me. She knows I organise a driver to get here, but mentioned just in case that I have to have a driver to get home safe after the test.