I’ve been debating posting this, mostly because there are important conversations around health going on at the moment, and my problems are minuscule next to what some people are dealing with. But I’ve been scared and worried, and I’m hoping writing it down will banish it from my head so I can spend less time worrying on it. But I want to be clear: I’m ok. Many people are not. Anything we can do to help those who need it is where our energy should be.
How are your ankles?
Anyone who has any kind of heart issue has heard this, because when your heart isn’t working right, your body retains fluid, and the retention is visible in the ankles. So I’ve learned to watch my ankles carefully. Ok, maybe obsessively. Tomato, tomahtoe.
A few weeks back, I noticed some swelling in my left ankle. I watched it over the course of a few days because sometimes it shows up but then disappears a few days later. This time, it seemed to be sticking around. But it wasn’t severe, so I didn’t panic. I also started feeling a bit of fluid on my chest at night, but again, nothing dramatic. No cause for alarm.
I had an appointment with Dr. Fradley last week, my routine check of my bionic parts. Since I was there, I asked him about my ankle. He took a look and confirmed that yes, there was some fluid retention there. Not a lot, but he said I should definitely call Dr. Mackie’s office to let them know.
So I did that, and they increased my lasix (a diuretic that I take every day) for a few days (to 40 mg twice a day instead of just once). This helped. But when I stopped taking the extra dose, the swelling came back. So they said I should take the extra dose every other day this week and check in on Monday. If the swelling was still coming back, they’d bring me in for an echocardiogram to make sure my heart function hasn’t decreased.
That scared me.
Because right now, I’m on optimum (maximum) doses of the heart meds, and they’re working, keeping my heart functioning at a serviceable level. But the thing is, there’s no way to know conclusively how long they’ll keep working. The hope, of course, is that it’s a long time. The fear is that it isn’t.
I feel fine, though. “My” fine, that is, but fine nonetheless. I don’t think my ejection fraction has dropped. But I wouldn’t necessarily feel a small drop, and it’s important to catch these things early, so if they tell me to come in for an echo, of course I will.
But I don’t want to.
I don’t want bad news. I don’t want to have to take a different diuretic, because some of the other ones can be more effective but cause kidney problems. And I have enough problems.
So for now, I’m gonna keep believing that everything is fine and this is just some kind of weird thing my body is doing for reasons that might or might not be explicable. Because that does happen. And come Monday, maybe the fluid retention will just have disappeared.
I think that’s what will happen.
Thank you for reading. Thank you for taking this worry from me. Thank you for being the amazing people you are.
You shared yours, so I’ll share mine.
I’m in a similar situation with my RA. I’m on Humira. And because of that I can type, and walk, and be functioning with little pain. But lately, the stiffness is creeping back into my ankles. And last night I felt it in my jaw. That was the first joint the inflammation started in when the RA came on about four years. I too should tell the doctor what’s happening. But then they add prednisone, and we all know how awful that crap is. It’s that or another drug I hate because it makes me feel sick most the time.
Like you. I am fine. But I am also scared. My scared is on a different level than yours. I learned when my late husband was sick that other’s issues are no less significant because they are more or less “severe.”
Love and Light, Erin.
I’m so sorry…and steroids suck big huge rotten eggs. But please call your doc. xoxoxo
My feet, ankles, and hands have been swelling off and on for the past two weeks. It seems to decrease with activity, so I have upped my exercise. So far I have managed to avoid having to take Lasix, but I suppose it may be that time…oh, yeah, also the heat and humidity also make me swell up and there has been that in spades lately…
You are being so smart and brave! Please know that if there is anything we, your people, can do, we will. And that we are sending you all the hugs and cookies!!
They ruled out it just being heat and humidity? Because my fingers have been sausages lately because it’s August already.
Yes, unfortunately heat is not to blame.
I have the utmost faith that this fluid retention business of which you speak is just a passing thing. And that you are as fine as your fine can be. I am also concerned for my edema-swollen right foot (very unusual for me) and hope it’s not heart related. Maybe there is something going around. (JK, or not?) I see my doc on Wed.
So between us, both are swollen…maybe there is something there 😉 Let me know how it goes on Wednesday, ok?
Listening and sending you support and best wishes. It’s small comfort, I know. Hoping it works out with best results.
Sending healing light and loving hugs. It’s not easy out there – it never was. Retreat to your blanket fort with a great book. Things will look better.
I’ve read it, and I’m with you in this, Erin. You’re one tough lady…with heart to match!
I wish I could take this worry away. I wish I could take all your ills away. Best I can do is tell you that you are not alone. Thank you for sharing. We are all with you. Imagine I’ll be sitting next to you when you call the doc next. Imagine me there petting Bug and singing to Publix and chewing my nails worried alongside you. You are loved.
Sending love to you, Erin, and hopes for best possible outcome. FWIW, two people I love have varying degrees of heart failure, with no prospect of transplant, and both have surprisingly well with titration of lasix and other meds: not perfect, but with a much better quality of life than predicted. But I hope all the news is good this time. xxo