Cardio-pain-in-my-opathy

I don’t know where this story begins — or ends — so I might have a hard time telling it. This could be long and whiny, but here goes.

I was diagnosed with some sort of magical mystery cardiomyopathy about a year and a half ago. It was caught randomly, after I visited my primary care physician with an intermittent chest pain that got worse any time I breathed in deeply. He couldn’t (and still can’t) figure out what it was, but he sent me for some routine tests just to rule out the really serious stuff.

I wrote about the stress test and echocardiogram that followed, both of which came out . . . funky. Funky enough to necessitate a cardiac catheterization, which was bizarre and slightly painful, but confirmed that I no, I was not suffering from Coronary Artery Disease. Instead, my heart was just following in the footsteps of its owner: it was a little on the lazy side, for no particular reason.

The super-aloof cardiologist I was seeing pulled a few theories out of his high-falutin’ backside: maybe a virus had weakened my heart. Maybe it was diabetes. Maybe I’d never find out. He handed me a prescription for lisinopril and sent me on my way, with instructions to come back in 6 months. After another echocardiogram half a year later, not much had changed. My ejection fraction was still hovering in the low 50s. Dr. Distant handed me another prescription for carvedilol and asked me to come back in another six months. I bet you can’t guess what happened.

My condition was virtually unchanged. I still had no symptoms of the cardiomyopathy itself, but when someone tells you that your heart’s not doing what it’s supposed to, you take their word for it and do whatever they say. The cardiologist instructed me to double my dose of carvedilol (which was tricky, because my blood pressure is already quite low, and carvedilol and lisinopril lower it further) and to plan on taking it for the rest of my life. Oh yeah, and come back for yearly echocardiograms.

Then he asked me if I had any questions. “This medication,” I began, “I know you can’t take it when you’re pregnant. What do I do if I want to start planning family stuff?”

He sat there for a second and exhaled slowly. Clearly, this was the most boring case of cardiomyopathy he’d ever seen. “Well, just let me know when you start thinking about it and we’ll figure it out then.”

“How about now?” I asked. I ain’t getting any younger, after all.

“It can be unsafe to discontinue this medication. If you get pregnant, just stop taking it.”

I didn’t realize how terrible this advice was until I relayed it to my CDE and the endocrinologist she works with — both of whom are affiliated with the same clinic as my cardiologist. (Mayo Clinic!) They both looked at me like I was crazy, and I could tell my CDE was pissed at this cardiologist. “This is not acceptable,” she said. “This is an important issue in your life and you deserve answers.” She recommended I see a high-risk obstetrician to seek their opinion. So I made an appointment — for six months later.

Fast-forward to last month. Kick-ass CDE had made copies of all of my diabetes and cardiology-related records and had given them to me to bring along, so the OB could get a clear picture of what I’d been dealing with over the past year. I waited in a room with half-a-dozen enormously pregnant women, and was then called back to speak with a nurse. She asked me a ton of questions and we went over all the paperwork I’d brought along. She explained the risks of pregnancy and Type 1 diabetes — most of which I was familiar with, just not in such graphic terms — and then told me she’d send the doctor in to give me an official recommendation.

The OB was wonderful and thorough and understanding and supportive. She, too, detailed all the risks of pregnancy, but withheld some of the horror stories.

Then came her recommendation. “If it was just the diabetes we were dealing with,” she said, “I’d say go for it. But this cardiomyopathy thing makes it a lot more complicated. I can’t tell you ‘don’t do it,’ but I can tell you that there’s about a 20% chance that the extra strain on your heart from a pregnancy could leave you on a transplant list. So I would think long and hard about whether you want to do this.” (And that’s a whole other blog post.)

She, among others, wasn’t satisfied with any of the answers I’d received from my cardiologist at Mayo, so she referred me to a group in the same hospital (“All the doctors I work with got their stents there!”)

That appointment happened about a week later. To say the least, I was deflated by the news I’d received from the OB, but I was still determined to figure out what the hell’s wrong with my heart, so I went in with only as much optimism as I could muster. That cardiologist was pretty cool. She didn’t have my records, but I detailed all my adventures for her and she checked me out and listened to my heart.

Then came her recommendation. “I don’t think this is diabetic cardiomyopathy. Your A1c is good and you’re so young, so I think it might be a virus. Do you drink alcohol?”

Uh, yes.

“There’s a chance that this damage to your heart is caused by alcohol. I’d like to do a more accurate test of your ejection fraction in three weeks. Stop drinking, and we’ll see if there’s a difference when you come back for the test. If you’re better, that may be our solution.”

She might as well have ordered me to follow the grub milkshake diet plan. Three weeks without drinking, fine. But the rest of my life? Without wine or beer or a delicious Mimosa? You know that part of A Christmas Story, where the Bumpus’ dogs take the turkey and the Ralphie voice-over laments all the delicious turkey treats they’ve lost? That was what went through my head: “No brewery tours! No wine and cheese parties! No champagne toasts! No beer-and-a-hot-dog at the baseball game! It was gone — all gone!”

Either of these recommendations — not having my own biological children and possibly going dry for the rest of my life — might have been easy to absorb had they not come within days of one another. But suddenly, I felt like all these things that “normal” people get to do were being snatched away. Next they were going to tell me I’d have to start counting carbohydrates and sticking needles into my own body.

I’m not used to being sick in a way that I can’t keep tabs on every few minutes, and I’m not used to being told that there are things that I really can’t — or shouldn’t — do. I’m also not used to being sick in a way that I don’t even feel. I mean, I think I feel pretty healthy. Compared to a night of low blood sugars, this cardiomyopathy is nothing.

I guess I feel like I’ve tried so hard to be healthy, and it’s still not enough. Part of me really hopes that this condition is caused by diabetes. That way, I can at least fence it into the same area of “ShitI’ve diabetes has done wrong.” I already feel guilty enough about the years I spent in college neglecting my blood sugar levels, I don’t want to have to feel guilty about the keg parties, too.

My next test (it’s called a MUGA scan) is scheduled for Tuesday. I’m nervous, but I know I need some more answers. As long as they don’t tell me to give up the Diet Coke, I’ll probably survive. I hope.

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30 comments on “Cardio-pain-in-my-opathy

  1. Rachel says:

    Lots of hugs, J. It hurts to hear recommendations against, and I didn’t even really want kids. The alcohol part? may be easier.

    • Thanks, Rachel. It does hurt, and I’m not even much of a baby-crazy person, really. But! I can still order a baby from the Internet and love it as my own. I cannot love near beer like the real thing.

  2. Nancy says:

    Mayo is a great system, but they are all Mayo employees. Get another opinion and I recommend Dr. Steven Stowers at St. Luke’s. He’s one of the top doc’s in Florida. And don’t wait six months, we will get you in next week. Mayo is great at diagnostics, but not so on treatment. You need to explore your options. Hang tight. Thinking of you.

  3. Sara says:

    I think the worst thing a doctor can say is “maybe” or “I don’t know”. If I wanted that answer, I could have just stayed home.

    I hope you get a final answer, although I am kinda confused how alcohol relates to a virus.

  4. Cherise says:

    I’m glad you are finally getting some answers. I pray it’s the alcohol. I’ll be with you at your doc appointment, at least in spirit:)

  5. Deb says:

    Wow… you obviously haven’t gone long enough without drinking. Think about this: you have to (or should anyway) stop drinking alcohol during a pregnancy which lasts 40 weeks. Why don’t you try to stop drinking for that long and find out just how great it is?? I was like you and couldn’t believe I would ever not want to have a drink or two at a party, etc. But after my first pregnancy I realized I didn’t need it to have fun. What’s sad is I have an Irish husband who thinks like you do and has never seriously considered stopping drinking. He drinks at his club 6 days a week so I get to have a drunken man (who drives) come home and slobber he loves me. When I don’t respond he storms off and goes to bed like a child. Not a very good person to parent children, another reason to stop if you want kids. And if you’re that selfish I would sugget no kids….

  6. holy shit, jacquie! i’m glad you’re not seeing that cardiologist anymore. i wish there was something i could do to make it all better, but i know there isn’t.

    whatever you find out (or don’t), please remember you are loved, and you are not alone. I hope they’re able to give you some answers. love you!

  7. shannon says:

    wow, heavy. thanks for sharing what’s been going on in more detail; i hope it lightened your load even a small bit. i totally laughed (like, the out loud kind, for reals) when i read your christmas story pastiche featuring all the booze cruises you would mourn. you gotta freaking laugh at this stuff sometimes, which you clearly are. in conclusion, ‘injection fraction’? sure, why not take two things that diabetics are already sick of and turn them into a medical test you have to do repeatedly. wtf!

    thinking of you. especially every day when i don the same shirt. 😉

  8. Ugh. Just ugh.

    I’m glad you went to someone else, at any rate. A more aggressive medical team might make all the difference.

  9. Jonah says:

    I’m a teensy bit confused- if it is the alcohol, then are you okay to go for a baby? If so, let’s hope it’s the alcohol!

    I am one of the half of American adults who does not drink alcohol more than very very occasionally. It’s normal.

    • Hey Jonah,

      I honestly don’t know. I’m *thinking* that if it is the alcohol, they’ll have me lay off and retest and then see what happens. That might not be so clear, though, since the last echocardiogram I had was in March, and since then I’ve been doubling my medication. I guess we’ll see!

  10. Mike Hoskins says:

    Sorry to hear about the double-whammy of ugly news, and the uncertainty… Hope you get more solid answers before long, and it doesn’t mean Internet babies or near-beer resolutions. Hugs and wishes your way.

  11. Jasmine says:

    UGH all around. What a terrible series of events with so little information. Hoping, for you, that there is a light at the end of this tunnel soon. And that you are able to have the exact life you want, with any babies or beers that you please.

  12. Holly says:

    Wow, Jacquie! This totally sucks! I really really REALLY hope it is an alcohol thing because that would be an easy fix. Even though giving it up would be a bummer, but what about the whole “red wine is good for the heart thing”?

    And I agree with what the high-risk OB said. I hate when doctors try to blame everything on diabetes, especially when your A1c is good. I’m reminded of a quote I heard from some diabetes doctor at some research facility somewhere, “Well-managed diabetes is the cause of nothing. It’s poorly-managed diabetes that results in complications.”

    I hope you get some answers soon. Nothing is worse than hearing a doctor say “I don’t know”. That’s a $25 copay well spent!

  13. Karen G says:

    Oh honey!!!!!!! Wow, this just plain sucks. 😦 BUT you are getting solid answers and dealing with this – and that is really a wonderful thing so you should be very proud of yourself for that. It would be so easy to just say “the doctor said to do this” and do it and be done. But you are getting second opinions and finding out what is really going on, and that’s absolutely the right thing to do. Even if it means no more alcohol goodness – which I really really really hope it doesn’t. My thoughts are with you tomorrow, and please please please let me know if there is anything I can do for you!

  14. Deb says:

    Hi Jacquie: I empathize with the whole doctor ordeal and hope I wasn’t being to opinionated on the alcohol issue. I hope you find the answers you need and end up with no heart problems and a happy, healthy life. Have you tried yoga? I know it sounds crazy but I have pain docs all call scar tissue from hysterectomy. Since I tried the whole doc circus act and that still gave me no resolve, I tried yoga and it has helped so many of my health issues and stress as well… I didnt realize the amazing benefits it could offer.

  15. Beth says:

    Hey Jacquie – thinking about you and hoping you’ve got better news from your test yesterday…..I know I would be PISSED if someone told me I shouldn’t drink any alcohol anymore. C’mon, we work hard enough every single day just to get by and live a healthy life with diabetes – and now we can’t reward ourselves with a good seasonal brew (or yummy glass of red wine) at the end of that day?? That sucks. I really really hope alcohol is NOT your problem….although I do hope the new doc can figure out what it is. Let us know what you find out.

  16. sorin says:

    i am not much of a drinker but in one or two ocasions i crossed the line. omg, i can’t imagine anything worse then the day after hangover. to be honest, i realy don’t know what good alcohol does

  17. Nancy says:

    I don’t know what you all are complaining about regarding not being to have a drink? No big deal, I haven’t had a drink for 11 years and my glucose counts have at leased leveled out. I don’t miss the hypoglycemic times in the morning. Jacqui, you will have to choose, is the drink better than life? Sorry, don’t mean to hurt anyone’s feeling, but grow up people, alcohol really isn’t that important. Also, if you want your own biological children, better get ready for a rough ride, lots of lows and many ED visits. I think it’s not worth it, there are too many other children in this world who don’t have homes, a mother or father to guide them and besides, why would I want to possibly give this damned disease to a kid? I didn’t like it when I was 9, why would another child? Listen Diabetics who have the type 1, juvenile onset, please don’t be selfish of yourselves. Adoption is always best if your own health is in danger of being pregnant.

    • So many opinions! Maybe you should start your own blog!

    • Kerri. says:

      Nancy – You are a ray of sunshine. Truly.

      Actually, I’m lying. You’re one grumpy lady, and I don’t know why you’re raining down on Jacquie for this post.

      I think (and Jacquie will confirm or deny) that Jacquie was talking more about that ever-present concept of “You Can’t” that seems to come in tandem with diabetes. And that this new issue is another “You Can’t.” It’s not the alcohol consumption itself. Or the kid issue itself. It’s all of it. The whole thing, you know?

      But thankfully, we now have your opinions on “complaining about regarding not being to have a drink” and that diabetics who decide to have biological children are being “selfish of yourselves.” Nancy, you’ve responded to a blog post that’s describing a difficult health situation and searching for help with unfair judgment and cruel criticism. You’d “better get ready for a rough ride.”

    • MelissaBL says:

      Nancy, I recently wrote a post you might benefit from regarding people’s misconceptions about Type 1 Diabetes and pregnancy: http://www.sweetlyvoiced.com/2011/11/tell-me-sweet-little-lies.html. Your concerns are based on popular myth, not reality.

      As to your comments about drinking, I believe the point of this person’s post is not whether or not people choose to consume it or include it in their activities and whether life can go on, but the shock of finding out you’re expected to make huge changes to your life overnight with the knowledge that it might not even produce results you hope it will.

  18. Victoria says:

    Wow Jacquie, I’m sorry to hear about the heart trouble. I had no idea, and I’m late in reading this blog. I’ll be sure to keep you in my prayers. And while I don’t normally like to delve into other people’s conversations, I feel incredibly hurt and disappointed in Nancy’s comments. There is no guarantee the child of a type 1 diabetic will have diabetes as well. And while diabetes is difficult at times and trying to manage, it is simply a different way of life. As a type 1 diabetic, I’m offended someone would call me “selfish” for wanting to have a child of my own. Technology and medicine is far more advanced than it has ever been and diabetes is not a death sentence in your 40s. “Steel Magnolias” is not real life. Adoption is wonderful, but it is also expensive and time consuming, not to mention all the other hoops potential adopters must jump through. I am appalled someone would ever tell me having children is selfish. I have lived with type 1 diabetes for more than 18 years. I have no complications. None. My liver and kidneys are at 100 percent, I have zero trouble with my eyes, my circulation is great and my A1cs are within the “perfect” range. So yes, one day I hope to have children of my own and creating life will be the most selfless thing I will ever do. And if that child is ever diagnosed with type 1 diabetes, they will be loved just the same and have a shining example of how it’s possible to live a healthy, active and normal life. I’m grateful diabetes is manageable, and I deeply wish stupidity and ignorance were as well.

  19. Hiya Super J,

    What a frustrating, confusing, and scary mess. I’m sorry, and will be praying for you.

    I think Kerri nailed it. It’s not about the drinks. If one day you decide to be done, you would have no problem. It is that the decision is being forced on you that hurts. I totally get that, and it sucks. It’s another “you can’t” being jammed down your throat.

    Here’s hoping you can get some answers, and that the answers are easy to swallow, and that they are presented lovingly by a not-aloof doctor.

    Lotsa love to you J. Don’t mind the weirdos, they are unavoidable sometimes.

  20. Mike H says:

    Everyone else nailed it perfectly in saying it’s the aspect of something being forced upon you, so that it’s not on your own terms. That covers the alcohol aspect. But Nancy, seriously….??? It simply astonishes and saddens me that you felt the need to share that pessimism about one’s own very personal choice of having a child. Clearly, we aren’t living in the diabetes “dark ages” any longer and women are fully capable of having healthy, complication-free pregnancies and children who grow up to show no sign of diabetes. While we each probably weigh the decision-making on whether it’s “worth it” based on our own lives and situations, it’s incredible that you would have the gall to lecture a fellow Person With Diabetes to not have their own biological children based on your own views. I have no issue with you believing that and practicing it in your own life, but it offends me that you would use that belief to shake your virtual finger at someone else who’s facing a scary and frustrating time in her life. That’s not cool.

  21. Kim says:

    I’d like to force something upon some of your commenters, myself.

    Lots of love to you, friend!

  22. Olivejooice says:

    Jacquie, I am so sorry to hear about all this. I’ve been out of the blog-o-sphere for a few months, so I know I am a little late in this response. I really do hope you get answers, and really this whole situation just sucks ass.

    On a brighter note, I laughed out loud at the mention of your cardiologist’s “high-falutin’ backside” and when I read it out loud to my husband, we automatically interpreted danced what we thought this would look like. It wasn’t pretty 😉

  23. k2 says:

    Jacquie –
    How did I not see this? Most likely I was marinating in my own grief ( re: losing my mom) at the time – I’m so sorry I didn’t comment earlier.
    You are not selfish! However you are fabulous, funny, honest and real and that’s why we love you. And you deserve answers, respect and understanding from your healthcare professionals and others!!!

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