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.
As the previous post explained, I arrived at the clinic while collapsed. I was surprised and impressed how clinic staff helped me through the appointment.
Although the nurse didn’t know what was wrong with me, she was very helpful. She kept her eyes on me, and made sure I was okay when she had to leave the room. Since I was paralysed, she helped fetching things from my bag, firing asthma puff, got me a cup of water and a straw and helped me drinking the water while I was lying, and etc.
When I started feeling suffocated, I asked her to get me a paper bag from my bag. I couldn’t hold the paper bag, but kept it over my face. Breathing into the paper bag was my old caring GP’s suggestion when I feel suffocated. It helps with suffocation by bringing CO2 level up so that Oxygen can be utilised. Many healthcare workers have mistaken this with panic attack despite I’m not hyperventilating. But, my current treating doctor assured me that it was a good advice from my old GP.
I was worried that I wouldn’t recover for the meeting. But, the nurse didn’t show any sign of concern about it. It was another surprise that the doctor came to my bedside for the consultation and the nurse stayed with me to keep giving me her support. (!)
Dr GD glanced at the numbers on a letter from Cardiologist and said, “Ah, Tachycardia!”. He noticed my surprise and asked what Cardiologist said. I first explained that Cardiologist gave me the professional disclaimer that he is not specialised in Orthostatic Intolerance (OI). The way Cardiologist explained was that the test was 80% negative by taking the Tilt Table Test’s flaw in consideration.
Dr GD read the letter carefully with frustration. He kindly explained how Tilt Table Test is not perfect, and suggested I could have the positive result if I had the second test. I wondered if that could be the case for me because Tilt Table Test for Cardiologist was all about syncope and hypotension, not OI. Anyway, Dr GD also explained there is only a few doctors in Queensland who have knowledge about OI.
I’m not upset with the Cardiologist. With his professional disclaimer, he was fair to me. Good thing was that he allowed me to try experimental treatment, which is giving me some relief already.
My frustration, and I assume it was for Dr GD as well, is that such debilitating and disabling condition has little recognition in medical community and patients are missing out on opportunity to manage their life better or have some improvement.
It was such a relief to see that there is no doubt in Dr GD’s mind that I have Postural Orthostatic Tachycardia Syndrome (POTS). He suggested to use above knee compression stockings at home, but changed his mind that I would be too weak to put them on by myself. I didn’t want to mislead him that I’m always collapsed, and I think I have reasonable strength during my functioning hours.
But, I don’t know… They may not be so useful since I’m resting in bed most of the day or pacing (remaining within own limitations) during the functioning hour. I don’t know how much strength I need to put these stockings on. I also heard they are quite expensive. So I think about it for now.
Although I didn’t expect I would collapse today, I had a written agenda for the meeting because I cannot trust my cognitive function. I was glad I prepared it because I just couldn’t remember the other things I was going to ask or report.
One question was if I could email the list of prescriptions I need and have them post to me between appointments. Answer was yes. It gave me another relief. He went back to his office to print out the prescriptions I requested.
Since the treatment for POTS had already started, we need to monitor blood electrolyte level regularly. So he also gave me a Pathology request, and asked the nurse to organise the blood collection at home in two weeks time. (!!!!) It was another support that would make my life easier.
He also suggested I should have 24 hour blood pressure monitor with the treatment. Since it’s an early stage of the treatment, we didn’t organise anything yet.
Before Dr GD left the room, I had to ask him if I can say I have POTS diagnosis. He’s been treating me as pwOI from the beginning. And he’s been talking as I have POTS since he saw the numbers on the letter. But I just needed to hear the confirmation, so that I can be sure that I didn’t misunderstand it due to my eagerness.
He answered, “Yes”. And it gave me massive relief and peace of mind. It was strange that I also felt a sense of closure, since I’ve been suspecting this for too many years without being able to get any confirmation or explanation. Now, I can focus on treatment, which is the chronically very ill and disabled person’s version of “moving on with life”.
The nurse kept supporting me as if it is her responsibility. She phoned the transport support for me and let them know I was ready to be picked up. She organised the home blood collection for me. She took me to the toilet when I really had to go…, and took me to the receptionist to make payments. And I continued resting in the bed until the driver arrived.
I was overwhelmed by her support and didn’t have appropriate words to thank her.
She kindly reminded me that I need to make another appointment to discuss about the blood test result. Since I should be able to be horizontal in the future transport support, I strongly hope I won’t be collapsed on the appointment anymore. After the next appointment for the blood test result, I seriously need to have an intentional rest period from medical appointments. Without collapsing and with the transport support, going to appointments in Brisbane has been challenge for my physical limitation.
My experience at the clinic this day has boosted my respect and appreciation towards practice nurses. I was also surprised and humble how this clinic cares for very sick patients. They didn’t make me feel that being collapsed at the appointment was nuisance at all. All I felt was the good understandings from staff and established procedure how to take care of very ill patients when they are in trouble. And these are not to impress their patients, but their normal everyday practice.