Author Archives: jonmrjr
February is Heart Disease Awareness month. More importantly this week from Feb. 7-14 is Congenital Heart Disease (CHD) Awareness week. It’s an important week for me and many of my friends. Its our week. We get to bombard you with facts and statistics about CHD and you get to listen.
So here it goes one out of every one hundred children are born daily with a CHD. That’s one every fifteen minutes. Due to technology and advances in surgery more children are surviving into adult hood than ever before. In fact for the first time ever there are more adults with a CHD now than children. But it’s not enough. Even with all the advances made in the treatment of CHD still nearly twice as many children die of a CHD every year than all the childhood cancers put together. CHD is the number one birth defect world-wide. There are thousands of children born every year with a CHD.
Still with all the children and adults living with a CHD there are few people out there that have heard or know about it unless it has actually impacted their lives. Because of this there is very little funding for CHD. This past year was the first time that our government set aside money to research CHDs.
So those are the facts now let me tell you what living with a CHD is.
- Taking medication daily and having to miss school and playing with your friends because, you had to have open heart surgery.
- Being tired or not feeling well, but not wanting to miss out on time with your friends or family.
- Your gym teacher telling you that your out of shape and lazy and that’s why you can’t catch your breath. And telling you, you’re not really sick.
- Having people you meet think you’re lying to get sympathy.
- Having to explain what the scars are from and then having to hear someone say “well luckily they managed to fix your heart” and knowing that isn’t true.
- Not being able to go kayaking with your fourteen year old son because your to tired and short of breath after loading the kayaks on the car.
- A life time of knowing that those that love you are worrying about you constantly.
- A life time of taking medications and knowing that at some point in the future your going to need another surgery because, replacement valves don’t last forever.
CHD isn’t all bad though because it’s also these things:
- Never taking life for granted.
- Learning that your capable of more than you ever thought was possible
- Learning that courage doesn’t mean not being scared. It means doing what needs to be done regardless of how afraid you are.
- Having a greater compassion for those that are truly in need of it.
- Knowing what true friendship means.
- Taking advantage of every opportunity that comes your way.
- Finding new ways of doing things.
In all I think having a CHD has made me a better person, despite all the negatives. Because the on thing CHD truly is, is finding positives in the negatives.
Please click here to see the people who are affected by CHD. http://pinterest.com/ruth_h/the-faces-of-chd-congenital-heart-awareness-week-f/
To end with I want to dedicate this particular blog to a little boy who passed away this past week 1/28/2012 at 19 1/2 months old. Adam Sallee. He was born with HLHS and received a heart transplant just over four months before his passing. Fly High Adam you will be missed.
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.
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.
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.
It’s New Years Eve tonight and I thought rather than go out and play dodge the spot check, like every other year, I thought I would stay in and put together a new plan for the New Year. This year the new plan is to tear down and rebuild a new, better me. Oh I know what your thinking. Your thinking that I’m talking about losing a few pounds, eating better and exercising more. The usual stuff that every body says they’re going to do, but never does. Yes I’m talking about those things, but also much, much more.
Over the years I have been compiling websites. Sites that Inspire and Motivate. Sites that “Train your Brain”. Sites that teach you how to break bad habits and rebuild new ones. Sites about learning. Sites about…well you get the picture. So over the last couple of years I’ve collected these sites and I’ve occasional looked at one or two of them in passing. But until now I have never made a concerted effort to categorize and use them to actual be a better person. I had the usual excuses, my job, my family, not enough time, I really, really wanted to watch this one movie on TV, but that has all changed as of six months or so ago. As some may know I left work due to my CHD and so now I have time. I can do all the things I’ve been saying I’m going to do some day when I have the time.
Lets start with the start. The reason to do this and the reasons to keep doing it. Obviously the reason to do it is to be a better person. We all have that in mind, but somehow a couple of weeks in we slip into the same habits that we have always had. This is where all those inspirational and motivational sites that I’ve been bookmarking all this time come in. I have used them to create a poster for myself. It is my poster of Five’s. It has 5 things to start my day, 5 things to do every day, 5 things to stop caring about, my 5 favorite of the Dalai Lama’s 18 rules for a better life, my 5 favorite pictures, My 5 Favorite Quotes, My 5 Favorite stress relievers and a place to write a goal for the day. The poster is 3 feet by 4 feet and laminated so I can write on it with a dry erase marker. I will get up and read it every morning. I am going to put a version of it on my phone so I can look at it through out the day. I think it’s great and I’m thinking I will spend the money and time to do a new one every year.
Over the last few years I’ve gotten a little slow in the brain department. Not so as anyone would notice, but I’ve noticed and it bothers me. I have not really challenged myself intellectually in quite a few years. So on to the “train your brain” sites. I want to learn to speed read this year as well as have better recall. I have several speed reading sites and some that play memory games with you to make you better at recall. Starting tomorrow. I will sort through the speed reading ones and spend 30 minutes each day learning to do so. I will also spend 30 minutes playing memory games. At worst nothing will improve and I will be entertained for an hour instead of bored. At best I will become one of those memory gurus who flips through the pages of a book and with total recall can rattle off the contents of any page.
Lastly I will break bad habits and build new good habits. From what I understand, It takes anywhere from 9 to 13 weeks to break or build a habit. That is get to the point where you do it without having to think about doing it, in fact if you don’t do it you feel as if you have forgotten something. I want to do this to become a nicer, more compassionate person. I also want to be able to think outside the box…at least think outside the box I have built for myself. I want to look at the world in a newer, different way. I do that some what now, I see something I think something and then think how can I look at this differently. Until this year that has been a conscious effort on my part. If I haven’t already gotten myself in that frame of mind I just see things the way I see them and that is not always in the best light. I am hoping that perseverance along with inspiration and motivation will push me through these habit changes, but I’m not counting on it. They have all three let me down in the past. This time I have a specific website that I’ve found (Thanks StumbleUpon.com ) that should give me the edge. Here it is http://www.hassleme.co.uk/ What this site does is to allow you to automatically send yourself an email reminding you to do or not do something every day. It is ingenious. Instead of me having to remember that I should eat a salad every day I can get an email shouting it at me in case I forget. Yeah me! I plan on being the biggest nag I’ve ever had to deal with.
That is my rough plan for creating a better me this New Year. I AM going to spend time putting down a schedule for myself so that there are no excuses. I hope you have luck with your New Years resolutions this year, after all It’s 2012 the last year for us to be alive according to the Mayans.
I speak to a lot of people with CHD and one of the recurring themes in many of our lives is a lack of sleep. For some reason people who are affected with CHD seem to have a hard time falling asleep. It seems to be quite common for most of us. As you can probably suspect sleep is important to those of us with chronic heart issues as we work harder than most and their fore need to recharge the batteries. This is a recent finding for me, I’ve always attributed my sleep issues to being partly genetic (my Mother has bouts of insomnia) and partly my work schedule when I was younger (I worked third shift for over 8 years). As it so happens that may in fact not be the reason for my sleep issues.
My own person issue with sleep seems to be having a hard time falling asleep. I can’t seem to shut my brain off when I lay down. I’m often up until 4 or 5 in the morning thinking about what I need to do the next day, what I did the day before, where is my life heading, and general fantasizing and day dreaming. The what if’s seem to get the better of me and I can’t seem to stop them. I have often gotten up at 2 in the morning to write down the lyrics of a song complete with chords to go along with them. Then I wake up in the morning not being able to make heads or tails of what I have written and thrown the whole thing away.
I have tried various techniques to try to get to sleep. In my life I have tried meditating, herbal remedies like Melatonin, warm milk and honey, a cup of Chamomile tea, a shot of booze at bed time and none of it seemed to work on a regular basis. Currently I take Clonazepam (a mild form of Valium) and that seems to work more often than not. However it’s not my favorite as waking up the next day is like trying to claw your way out of deep hole.
This really concerns me these days. If I don’t get a good nights sleep I not only feel exhausted the following day, but it now manifests itself physically. It takes less activity to make me start breathing harder or (mouth breathing) as I call it. It also seems to take much longer for me to recover my breath. This wasn’t always so. In my teens and twenties I could go days with very little sleep and it never seemed to effect me. Often I would sleep like 4-6 in the morning and pop awake to go for a 20 mile bike ride then grab some breakfast go to school. In the afternoon I would grab my rifle and hit the woods, bush whacking my way through brush and swamps hunting until dark. Slowly the woods gave way to the gym where I would work out for 2 hours a day, lifting weights, and running.
So as this sleep deprivation has been going on for most of 40 years now, it’ something I think that we need to get control of. I’m heading to Boston’s BACH unit on Wednesday to see Dr. Mullen. This will be one of the many things I want to discuss with them. I’m hoping that, being one of the first Adult Congenital Cardiac Care centers in the country they may have some answers for me….
P.S. I woke up at 3am and sat down to write this after trying to sleep for 2 and a half hours.
As a CHD patients we sometimes have a hard time making friends. Sometimes we meet people who are afraid to get to know us or think we will bring some sort of unwanted drama into their lives. Some people we meet aren’t sure of how to treat us, especially if we are having a particularly bad time at the moment. And of course some people just flat-out don’t believe that we have a heart condition and so mark us as liars and want nothing to do with us.
I have been fortunate enough however to have made some great friends. Friends that I have had for nearly half my life. Friends that take the time to stay in touch. Being the Holidays this is the perfect excuse to visit and catch up with those wonderful people who have been in our lives forever.
Last night I took that opportunity and I am so glad that I did. Being in a heart slump so to speak and not being able to lead the active life I want to right now, it gets hard to get out and visit with people. Last night though, last night was a good night. An old friend threw a Christmas party and so that’s where I headed. I felt really good as I left the house and headed out. I got there and what a great group of people. My friend and her family, as well as another friend that I hadn’t seen in years. There where new people there as well. And I got the chance to play a little guitar with a couple of other guys. It was a fun time.
The thing that makes it great though was that I got to catch up with an old friend. A friend I had some great times with. We have been in touch now for a couple of years after losing touch for a number of years. If you have old friends that you have lost touch with, maybe the Holiday Season is the perfect time for you to get a hold of them and renew that great old friendship. I know that I am lucky to have the friends that I have in my life.
I’m not sure how to start this, so I’m going to just jump in. As some of you may or may not know I am in the process of being evaluated for a double valve replacement or the possibility of transplant. I got some bad news on Tuesday morning. It arrived in the mail in the form of a letter from my Adult Congenital Clinic Doctor. The letter was written to m regular Cardiologist, but knowing that I want a copy of everything she sent one along to me. Here is a run down of what was in there.
It basically said that she feels that my body has been compensating for my poor heart function incredibly well for most of my life and now it can no longer do that. She feels that it is now decompensating and that even though my Left Ejection Fraction is much better than it was the last time I was considered for this surgery, the fact that I am decompensating makes me a poorer candidate than I was back then. Back then they refused to do the surgery. What’s worse is that although she doesn’t have numbers to confirm it, she thinks I may have developed Pulmonary Hypertension, which would make me a poor candidate for transplant.
I was really bummed out on reading this news. Essentially I crawled back into bed and stayed there until Thursday morning all the while having myself a nice little pity party. Thursday I dragged myself out of the bedroom and into the kitchen. It just isn’t in my make up to stay down. I made some apple spice muffins and a loaf of rosemary, garlic bread. Yesterday though was my really good day. I went to see my Primary Care Physician for some Social Security stuff. Afterwards I went down to pick up some prescriptions and on the car ride between the two I thought about what I was going to say to the Doctors in Boston when I meet with them in December. I’m determined to not let this news stop me. I know I haven’t been feeling well lately, but I’m pretty sure they would be amazed at how far I can still push myself. Plus a positive attitude is a definite for getting better. So regardless of what they say I will beat this. If I have to go back every three months and run all day in between to get in better shape I will. Helen Keller once said “Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieved.” and i believe it.