So, many of you know that I’ve been having serious health troubles this last year. I’ve been in to see my cardiologist and things are looking… not up, but not nearly as bad as I was preparing myself for. I have low-key been steeling myself for “yeah, you’re in heart failure” for the last few months.
Surprisingly, given my family and personal history, this isn’t the case! My heart appears to be in pretty good shape. I’m getting another echo and 24-hour monitor done on the 11th of January just to be sure, but every ECG I’ve had done over the last 12 months has come back clear, and the hospital has done x-rays and checked for other heart health indicators and everything has been clean. My pulse is usually a bit fast, but that’s about it. As far as heart health goes, I’m looking all right.
The problem is that my heart is having to work far too hard. That’s why I’ve been getting such intense bounding pulse and high blood pressure and breathlessness whenever I try to do anything physical – my heart just can’t pump hard enough to get enough oxygen around. It’s why my muscles are so weak – they’re not getting enough oxygen.
What that boils down to is my weight, which I have always known and acknowledged is a problem, and what my cardiologist talked with me today about is how damned complicated my weight is. It’s not “just” a matter of “you eat too much” (it’s very rarely “just” that with anyone overweight, really); I have to contend with the following:
Medical. I have several conditions that contribute to weight problems. PCOS, hypophysitis, metabolic syndrome, and sleep apnoea all contribute to weight problems. I’ve also struggled with severe disordered eating in the past. Now, with the adrenal insufficiency, if I don’t eat regularly, I get very sick. Not eating regularly can trigger an adrenal crash if I’m not careful.
Medicinal. I’m on several medications that contribute to weight problems, and I can’t not take them. Hormone replacement therapy, my anxiety medication, even long-term insulin has detrimental effects on your weight. And now that I’m on steroids, it’s only got worse.
The feedback loop that all of this creates. My body is under stress, which puts me into an adrenal crash, so I have to take more steroids, which increase my blood pressure, blood sugar, and weight, which puts my body under more stress, which… you get the picture. I’ve got so many balancing acts going on and my body is no longer capable of maintaining its own homeostasis. It all combines into the perfect storm to make my health extremely complicated.
Which leads to the discussion I had with my cardiologist today – he doesn’t think he’s helping me. That’s not his fault. What’s been going on between my specialists is essentially one big game of hot potato – my endocrinologist deals with my endocrine system, then sends me to my cardiologist to deal with my cardiac stuff, who then sends me back to my endocrinologist to deal with the new endocrine stuff, and so on. My GP handles the blood clotting stuff. But none of them can handle everything, and none of them really know how to get to the bottom of “help Penny lose weight in a safe and sustainable fashion”. The obesity clinic tried, but they’re equipped to deal with people with one or two comorbidities, not… me.
So the plan going forward is to send me to the rapid access cardiac clinic at Westmead as soon as they’re open again in the new year, to be seen by a team that will deal with all of my issues together. This may lead to inpatient treatment, depending on what they discover. I’m not against the notion of weight loss surgery as a part of a regime, as long as everyone is aware it’s not the only answer or the simplest answer – overeating is not my problem, and my doctors are all aware of that. But it may be a helpful aspect. We’ll see.
So that’s where we stand at the moment. My heart and kidneys are in surprisingly good shape. I urgently need to lose weight, but everyone involved is acknowledging that my weight has been severely out of my control for years, which is nice. I did some swimming today and it didn’t make me breathless, so hydrotherapy might be something we look into as well. It’s going to be a long journey, but considering I was completely prepared to be told I was dying today – that’s seriously how severe my symptoms have been – it’s more positive than I was expecting. I’m still going to have to just manage those symptoms for a while, but it’s doable. I can get through this.
The Medical Snowflake Diaries 