This update is going to be informal and assumptive that anyone reading knows my current heart/lung/health situation; it is to update family and friends and the people that I don’t get to talk to as often as I’d like.
Around december I began to get palpitations that I probably ignored for longer than I’d like to admit around three weeks (maybe longer) later, I decided I needed to get checked out. Coupled with the palpitations, I continually felt like my ability to breathe was declining. After going to a GP and doing a series of tests my heart specialist noticed some changes in my health. I was more breathless than usual, more anxious than usual and there were changes to my routine echocardiogram. My respiratory specialist also commented that there was a lot of pressure in my lung and therefore making it harder to breathe. We began to talk about heart / lung medication and we all agreed that it was time to begin treatment for my heart/lung condition.
It seemed frightening, quite frankly. To have been almost cocky about the fact that I was 34 and had had no formal heart-treatment besides a PDA when I was a baby for all the problems that I have. I wasn’t emotionally prepared for it, but I knew it was time to put on my big girl pants and trust the doctors that have had all their years in medical school by comparison to me and all my zero years spent practicing medicine.
My heart specialist in particular is beautiful – while wonderful at her job, she is very direct but incredibly rational and calming. I don’t know how she hasn’t grabbed me, clamped my nose and emptied a bottle of pills down my throat just to shut up my neurotic whining.
So, I had to go to see my respiratory specialist for a special application so that I could get approved for the medication (govt costs are just under $3000, I worked out its around $96 per tablet). While waiting for the medication turn up — as if overnight — I started experiencing swelling in my legs. I have always felt my calf muscles have been tight and at times it hurt to squat down in gym or so forth, but I didn’t really think they were swollen. However, in this situation, my feet blew up.
At first it was a little uncomfortable, but soon it got to the point that walking was very uncomfortable and painful. A couple of instances, the swelling was so bad that I could barely walk and shoes hurt to wear. I began dreading getting out of bed because I knew that if it had at all gone down overnight, it would soon blow up again as soon as I woke up.
My breathing? Totally to shit. It got so bad that I couldn’t walk in to the next room without huffing and puffing. In one instance, standing stationery to peg clothes on clothes horse made me so breathless that I had to sit down for a rest half way through. I was getting girlfriends to drop me off to the door of my work to save me having to walk the 50m from the car park.
I called my dad in an absolute state and sent him photos, showing how swollen my feet were. I was scared but I knew something wasn’t right. I just wanted some assurance that it wasn’t anxiety for once. He ordered me to call my heart specialist and organise to see her immediately. Thankfully, that night I received a reminder text about a respiratory appointment I had the next day that I forgot about.
It took me almost 20 min to walk from the hospital car park to the doctor’s office that day. I was frightened almost to tears. I explained that I was so out of breath. He seemed quite nonchalant about it which annoyed me. He examined me, didn’t say very much. I mentioned the swelling in my feet which I could already feel blowing up. He touched them, examined my legs and said nothing. I told him how long it took from the hospital car park to his suite. He asked if I’d been treated for fluid before. Nope.
I explained how I’d asked a different doctor in the past if my legs were swollen and he’d said no. This respiratory specialist just shrugged and said that even to look at there was a lot of fluid retention. So I went home with a prescription of two fluid drugs (Lasix and spiro-something-or-other).
The next few days were a classic comedy of urine-related errors, including having to pee behind the local scout hall because I didn’t have the ability to get out of the car and to a toilet that was less than a step or two away. Or when I’d totally given up caring, and peed on the side of the road in open view of every passer-by and when I was beeped at, I raised my arm with a thumbs-up.
Better than one wetting one’s pants, no? When I’d been to see the heart specialist about taking the new drug, I’d weighed around 71kgs which is actually quite a lot for me. The respiratory specialist asked me to weigh myself before starting the fluid drugs. I was 79kgs! So in just a few weeks, I’d put on all of that weight so quickly in just fluid.
In less than week of taking the tablets, I’d lost around 5kgs. I hadn’t quite got my head around the liquid intake, how to alter everything so that I don’t consume too much and make the rest null and void…. After about three weeks on the lasix, I got some swelling back, not a lot, just a little — but that’s possibly because I thought I needed to drink more so I didn’t become dehydrated.
Sooooo to cut a long story short(ish [because I have to go watch Bachelor in Paradise… yep, I know, I know, behind these brains is the mush that just loves trash TV]), after visiting both specialists again last week, I have been put on a triple dose of Lasix, some potassium tablets and have dropped another almost 4 kgs (after putting on 1.5kg again) and the difference in my energy and breathing is amazing.
I went to the gym on wednesday night, I went to the gym again today with R. We went grocery shopping and I was walking ahead of him (not trailing behind) and when he said something smart, I even ran (yes!) after him maniacally with the trolley at his heels in the middle of Woolies… also I went screaming down the aisle flat-chat when he said we should get ice cream. No recovery time needed.
I have my fingers crossed that things can stay at an even keel.
After my appointment with my heart specialist, I was given a diary to record my fluid intake and my weight loss while taking them and had a sit down with the heart failure coordinator regarding how to go about a low sodium diet. Whenever anyone mentions heart failure symptoms (and I see my symptoms on it), I used to panic, but I think that taking things one day at a time is the best way to deal and to understand that its just a label for someone who has a really, really, really shit heart (like me) and unfortunately a fairly ordinary lung situation.
I do wish my Mum was around to hold my hand and give me a hug — but in a way I feel like I’ve had to do some serious growing up in the health department over the past two years and have learned that burying my head in the sand and pretending everything is fine is actually going to be counter productive to my health going forward. I need to face it all head on and understand and have it rationalised to me and put the trust in to my wonderful doctors, because doctors that make concessions for my mental health despite it not being their field AND my physical health have been absolutely key in making this part of my life feel emotionally manageable without Mum being here with me.
So that’s where we are at. I just ended my triple dose of Lasix today and hopefully now with a better understanding of my fluid intake and the education about sodium reduction, I can keep the fluid off me and continue losing it.
Now that’s out of the way, it’s time for Bachie in Paradise — although its half over, so I may as well just watch it later.
Love, Jessica Louise.