Monthly Archives: January 2012

The Exhaustion Marches On

I have never claimed to have all the answers. That’s a good thing, because I don’t have an answer as to what to do about my latest week. You see, while I usually try to keep busy and engaged in something for at least part of the day. I have not been able to do that this past week. Why? Frankly, I’ve just been exhausted. I don’t know why I just have.

I have been waking up late morning and then falling back asleep. When I wake up again I usually try to answer emails and things like that. Then I might nap for an hour. By then it’s close to dinner time. After dinner I light a fire and watch a movie. Maybe run through some games on Facebook. Then it’s back to sleep until late in the morning again. This has sort of been my regular routine this week. I’m not sure whats going on or why I’m suddenly like this. It’s sucky to say the least.

If anyone has experienced similar stuff please let me know. I would love to hear what your Doctors had to say about it as well. I’m looking for an answer here.



It’s a Monday and I’m writing my weekly blog a couple of days late. The reason is that I felt kind of crumby the last week or so. This is one of the things I’m hoping Boston can help me with.

I seem to have a series of days where I feel really good. It might be 4-10 days. I have a positive attitude, because I feel good and am able to do things. Where not talking crazy amounts of exercise or anything. Where talking cooking dinner and doing dishes kind of energy here. Then the crash comes and I can’t stay awake. I’m sleeping 18 hours a day and I literally do nothing all day long.

Now I know every body goes through rough patches in their life. And that everyone has the occasional bad day, but that’s not what I’m talking about. This has been an ongoing thing with me for the last 8 months. It’s not a once or twice thing. How am I supposed to hold a job, when I can’t come to work half of the time. It’s frustrating beyond belief. I know as an employer, that if I had someone who was calling out sick every few days I would have to let them go. Unfortunately, it’s the rare business that can run with unreliable people as the back bone.

I’m a big believer that there are reasons behind everything. I want and need to find out the reason behind this. Many of my fellow CHD folks have said they have the same problem. I can’t believe that there isn’t something that can be done to even things out. I’m hoping to hear from Boston about surgery at the beginning of this week, so when I go back, maybe I can get this addressed.


Hurry Up and Wait Syndrome

So another week down and this week I went back up to Boston for some more testing. This is the second time I’ve been to Boston in a month and that’s a good thing. It has taken me nearly six months to get up there. Mostly because of  what I call the Hurry Up and Wait Syndrome. It has become prevalent in our society. You are urged to hurry up and do something about your situation, in this case, a medical condition and then you are left waiting for someone else to finish the process. This is caused by a system that comes with large volumes and corporations that require you to make appointments and fill out paper work. Don’t misunderstand me. I understand the need for it and I certainly don’t have another solution. It doesn’t mean that I enjoy participating in it.

It started when I was feeling lousy this summer. With a CHD lousy means short of breath, exhaustion and days where you are cyanotic. So I felt really lousy and left work. I just couldn’t make it through a day, even on the days when I wasn’t working. So once I left work I of course lost my insurance and had to figure out how was I going to pay for my medical testing and treatments. Thankfully I live in a State that has State Medicaid for people with chronic medical conditions and no insurance. I had to fill the application out and let the wheels of the government turn at their slow, slow pace. Hurry Up and Wait. My next step was to go online and fill out an application for Social Security Disability. After all I have worked hard for the last 40 years and now that I can’t, I need the support until we figure things out and I can get back into the work force. Of Course Once that was done it was Hurry Up and Wait.

Cut forward 2 months until the end of August. I received my State Medicaid and of course was denied twice by Social Security. I hired a lawyer to fight for my Social Security Rights. He challenged their decision and now we have to go before a judge and court. The waiting line is about 12 months for that. Guess what Hurry Up and Wait. Now that I had a way to pay for my tests I scheduled an appointment with my regular Cardiologist. First appointment in a month so Hurry Up and Wait. He wanted to run a battery of tests and those were scheduled for 2 weeks out. So again Hurry up and Wait. I had to wait until the test results were compiled and then I went to the Adult Congenital Cardiologist here in my home state. One month of Hurry Up and Wait. She said I definitely need to go up to Boston where they had much more experience. It took almost 3 weeks to get that booked and another week and a half for the appointment to come around. So once again I was in Hurry Up and Wait mode. Now however things are starting to move forward fairly quickly.

Another 2 weeks and that brings us to this past Wednesday and my recent tests. The one great thing about Boston is that you don’t wait for test results. You take the tests and then you see your Doctor for the results on the same day. However, I am now in Hurry Up and Wait mode again. I am waiting for a week to go by when all the Adult Congenital Cardiologists and Surgeons get together and present their cases for surgical consult. They all look at the information and offer their opinions. Then they make a decision as to what they can do for the patient. This is where I am. I am waiting for them to discuss my case and get a hold of me to let me know what their decision is. So like I said, once again Hurry Up and Wait.

The Taking of The Pills

My Second Dinner

Ahh. It’s morning. It’s time for the taking of the pills. Wait I just ate dinner. It’s time for the taking of the pills. I feel like I’m always taking pills. Every morning and Every evening. You would think it would be habit after a while but, no it isn’t. I know I’m amazed as well.

In the mornings when I first get up I’m lucky if I don’t walk into a door jamb. I am not what you would call a morning person. Actually in the morning I’ve often been refered to as Mr. Cranky Pants. So here I am grumbling about everything and trying not to walk into walls and through all that I have to remember to wash and brush my teeth, eat something, put on pants and take a big old handful of pills. It’s not what I would say is an ideal situation. When I was working I would set my Blackberry to go off and remind me. Often I would be driving mindlessly down the road when that would happen. Morning is the hardest time for me to remember to take my pills.

Then there is my evening meds. Or as I call them second dinner. I don’t usually have a hard a time remembering these. I try to take them at about 9:00 pm. That way the lasix has a couple of hours to work, but that never happens. I’m usually in the middle of something, even if it’s just a TV show. So I end up taking them right before bed. Now that has become habit. I can’t lay down to sleep these days without getting a nagging feeling in the back of my mind saying “take your pills!” Annoying, but effective.

Then of course is the sheer number of pills that I take. It’s a little silly. I mean I’m 40 not 80. Things are supposed to be still attached and working properly. Ha!! I guess age doesn’t have much to do with that, when your born with a bad ticker. Here’s a rundown of the meds I take each day and what they do.

  • Carvedilol  2 25mg tabs twice a day.  This is the big one. It causes the heart to squeeze more effectively. 50mg is the big mega daddy dose.
  • Lisinopril 20mg once each day. It’s a common blood pressure medication. It’s also an alpha blocker which is why I take it.
  • Digoxin 0.125mg I take it once each day. I take it because studies have shown that a small amount of this added to the other meds seems to make everything work better.
  • Coumadin 2 mg once each day. This is of course a blood thinner. It keeps me from having blood clots and of course a stroke. It’s actually a dinky amount, compared to what most people take. I’m pretty sensitive to the stuff.
  • Lasix I take 80mg Once each day. This is to keep excess water from building up in my body. The more water the more the heart has to work. Occasionally I will take this in the morning to, if I happen to have a little extra water on me. (Darn Pepperoni Pizza)
  • Allopurinol 200mg. This is Gout medication. It keeps the Uric Acid in my system from building up. Apparently many people who have been on diuretics for a long period of time develop gout. I’ve been on lasix for 12 years.
  • Clonazepam 0.5mg as needed. This is a mild form of valium. It helps me shut my mind off if I’m having a hard time falling asleep. I hate taking it though because, it makes it even harder to get up in the morning.
  • Allegra 180mg I take this once every day. I have allergies year round and with a heart condition breathing easily is important.
  • A Multi Vitamin. I take this once each day. I know this isn’t really a medication. But I take it to make sure that I get everything my body needs to work properly. I try to get in a well-balanced diet but, we all have days where we don’t eat stuff that’s good for us.

So that’s what I take daily. It’s a lot. I don’t really resent having to take them. I just haven’t figured out how to take them at exactly the same time each day. I don’t have the most structured schedule in my life, so trying to take them on a schedule sometimes seems impossible. I hope you do a better job of taking your meds.