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View Full Version : Sorry for the absence -- it's been bad



JuliaL
10-18-2011, 08:58 PM
Hi all,
It's been a few months since I posted! I've been having a really bad time with both the Lupus and Crohn's flaring. I was on high doses of pred. for a while and then had to go in to have my esophagus dilated and some biopsies taken of my GI tract. While at the hospital, my heart slowed way down and they had to give me injections to get my heart beating better. Lovely.

So, my internist's office called today to tell me that they finally got the reports from cardiology (Holter monitor) and I am having frequent atrial fibrillation. Plus the slow heart beat. My internist wants me to come in Thursday to discuss treatment. The fun part of this is that the cardiology practice I've been going to for years is no longer taking my Medicare plan. In fact, only one cardiologist in town is taking my insurance, I've never met the guy and know nothing about him, and I'm not thrilled about someone I don't know suddenly taking over my care at a critical time just because of insurance issues. But if I need to have a pacemaker put in then this is exactly what is going to happen. I HATE our health insurance system with a passion.

Sorry to return and grumble, lol, but i'm thoroughly frustrated. Is anyone else dealing with atrial-fib and/or bradycardia? I'm rather worried about it.

steve.b
10-19-2011, 12:16 AM
sorry to hear what you are going through......
but glad you found your way back home.

kim,l
10-19-2011, 12:42 AM
hi am sorry about what you are going through i have lupus but my husband is dealing with having slow heart beat first it races then it becomes to slow we had him at doctors 2 days ago he has to see cardiologist 2 years ago he had to have injection into his heart because it was going to slow so i in some ways know what you are going through i myself also have angina take care of yourself

JuliaL
10-19-2011, 10:10 PM
Thanks, Steve!

kim, I'm sorry your husband is going through this, too. It's kind of scary. I have my appointment with my internist in the morning. I trust her implicitly so I'm anxious to hear what she has to say.

sharpiessave
10-19-2011, 10:37 PM
Julia,
Wishing you luck with your appointment, from one healthcare system hater to another. We should form a club. We could have jackets. I'm thinking black with purple writing. Who can come up with our Haterade slogan? ; )

steve.b
10-20-2011, 12:37 AM
........ We should form a club. We could have jackets. I'm thinking black with purple writing. Who can come up with our Haterade slogan? ; )

i think rob would be a perfect person for the slogan !!!!!
lol

rob
10-20-2011, 06:40 AM
i think rob would be a perfect person for the slogan !!!!!
lol

Who, me?

I'm just a harmless lovable little fuzz-ball!

I don't have a single pithy sarcastic bone in my body...



Moving right along,

Welcome back JuliaL! No apologies are needed. We'd much rather have people return to grumble, than not return. I hope you get this latest problem worked out. And I agree with you. A healthcare system that denies you access to a trusted specialist at such a critical time, needs to be reformed, or simply junked and rebuilt from the ground up.

Rob

JuliaL
10-20-2011, 11:59 AM
Thanks, Rob! I go through stages. First is roll into a ball and just want to ignore the health stuff, then sigh and deal with it, and lastly be strong enough to grumble, lol. I was at the grumbling stage but, after today's appointment, I'm fighting the urge to roll into a ball again, sigh. I treated myself to an inexpensive pair of earrings and dress when going to pick up this latest new prescription at Kmart. Cardiology and the hospital are about to get the rest anyway, so I figured I'd cancel my GI followup and spend a little bit of that copay on myself instead. Rebellion -- it feels so good! lol

Sharpie, yes, indeed, I want to join the club and I LOVE the idea of jackets! We can look tough like the roller derby chicks, hahaha. Perhaps we could be the SLE Serial Sickos -- Coming soon to a waiting room near you! Mwaahaahaahaa, treat us or else!

JuliaL
10-20-2011, 12:12 PM
the atrial fibrillation is bad. I saw my internist today. She said the heart monitor showed it's happening frequently and my heart rate is going over 160 bpm for these episodes. But when it slows down, it slows WAY down into bradycardia, less than 60 bpm. No wonder I feel so awful really suddenly at times!

She put me on Coumadin (blood thinner) immediately and is calling my cardiologist to see how fast he can get me in. So then I had to break the wonderful news that my cardiologist is no longer on my insurance. In fact, none of them are except some guy across town that no doctor seems to know. This is NOT the time for switching cardiologists, especially since mine has seen me for years, understands the autoimmune stuff, and works with me on the bills. With the crazy heart rhythms, she's worried about the possibility of a stroke or heart damage.

So I asked if this is another fun thing in Lupus' bag of tricks and she said it could be. But they're not going to waste any time trying to find out. It needs to be treated as a cardiac issue right now. Fair enough. I have to see a new rheumatologist in December and, of course, he'll be needing to know all of this.

Wow, what a pain the Coumadin protocol is! I have to get labs done every three days until they figure out the appropriate dosage and I'm going to have to be very careful not to cut or injure myself. She said it will be trickier to get the Coumadin working correctly because of all of my Lupus meds. Yay. :(

sharpiessave
10-20-2011, 12:29 PM
Ok, so we nix the jackets, and invest in bulletproof vests. Those'll look more hardcore anyway. ; )

I'm so sorry to hear your news. But I know you'll be able to handle it. I bet you've gotten really good at figuring out all this med stuff by now, so we'll consider all the prior stuff practice for this new big event.

Keep us posted.

Sharpie

steve.b
10-21-2011, 04:38 AM
Ok, so we nix the jackets, and invest in bulletproof vests. Those'll look more hardcore anyway.

this has got the attention of the "harmless lovable little fuzz-ball"
these are his jacket of choice lol

rob
10-21-2011, 02:21 PM
this has got the attention of the "harmless lovable little fuzz-ball"
these are his jacket of choice lol

You are more right than you know!

I do indeed own a level II-A kevlar vest. A substantial part of my former career involved lots of time spent at shooting ranges doing test fire work, and sometimes as an instructor. The possibility of ricochets, overloaded rounds, catastrophic structural failures, or a careless student, means that sooner or later, one way or another, an accident is going to happen. The vest was cheap insurance.

Rob

mrstjscott
10-21-2011, 08:53 PM
Sorry to hear about your troubles Rob. I have a-fib. I have a crazy cardiologist who refused to put me on a holter monitor. He thinks the metoprolol is enough. I have been in the hospital several times for the a-fib, even had to have my heart jump started through iv meds. The next step was going to be those shock pads. Thank GOD the iv meds worked. I hope you can get that problem taken care of and I hope another doctor can come in who takes Medicare. God bless you Rob.

rob
10-22-2011, 04:20 AM
Sorry to hear about your troubles Rob. I have a-fib. I have a crazy cardiologist who refused to put me on a holter monitor. He thinks the metoprolol is enough. I have been in the hospital several times for the a-fib, even had to have my heart jump started through iv meds. The next step was going to be those shock pads. Thank GOD the iv meds worked. I hope you can get that problem taken care of and I hope another doctor can come in who takes Medicare. God bless you Rob.

I think you may be thinking of somebody else. I'm not having any particular or significant health problems, or problems with Medicare right now (knock on wood).

Bonita
10-22-2011, 10:53 AM
maybe some of these doctors got their licenses out of cracker jack boxes and i hope someday they are on the receiving end of their lack of compassion. I am truley sorry for all that you are going through and hope you soon get the right help you need. Bonita

Gizmo
10-23-2011, 09:26 PM
Mrs Scott, I know you don't want to change cardiologists right now, but you also don't want to end up having a pacemaker put in on an emergency basis because you passed out behind the wheel. It's really hard to trust new doctors, but it is possible that he will be a good guy that can help fix you up. Please keep us posted.