What a roller coaster ride the past couple of months have been with my journey with sarcoidosis. Last year, after twelve years of constantly being on prednisone, I was finally weaning off the drug slowly. In November I had my usual echocardiogram which came back having my heart function ejection fraction at 35%. To say…
Tag: Heart Failure
Taking Care Of Me
It’s been a while since my last post, almost six weeks. A lot has happened health wise with me since then. Lots of testing and fighting with insurance to pay for the major part of the testing and just saying “F**k it!”, and paying for it myself. It has been a small journey, and one…
When A Discount Is Not A Good Thing
5% isn’t that much of a discount if you go to store, but it is a lot when you are talking about ejection fractions and heart functions. It’s something you don’t want a discount on. It’s something you hope for an increase. I had my annual echo cardiogram last week and met with my cardiologist…
And Then There Was One
1 mg of Prednisone. That is what I am down to. I haven’t been this low on a dose since starting the drug in 2006. The lowest I was ever able to get to was 3 mg and all hell would break loose, prompting me to go back up prednisone. Now I made it to…
The Weekend Revisit Of “Making It Through On Love”
I am a very, very blessed man, and I know it. I get a few emails in response to “My Story” where I give a brief synopsis of my journey with sarcoidosis and heart failure, and I get at least one email a week commenting on how “hard” my experience has been, or asking for…
Yes, I Am Alive!
Someone that follows my blog sent an email to me the other day, asking if I was alive as I have not been writing. Yes, I am alive! What can I say? I have been busy but honestly I just haven’t had the zeal to write on my blog, write my book or even journal….
Surviving Without Air!
I recently took a vacation and I decided at the last minute not to travel with my supplemental oxygen. What? Are you crazy man? Yep, you read that correctly. I decided to hop on a plane for a 7.5 hour trip with supplemental oxygen. If you are here for the first time, just a quick…
Breathing Easier
When jets are at altitude, the inside of the plane is pressurized to simulate earth at about 8,000 feet. For a person with breathing problems, any altitude above 9,000 feet can cause problems. In the last year I had my fair share of air travel. I have seen the inside of JFK a total of…
When Sh!t Hits The Fan, You Either Hold Your Breath Or Count Your Blessings
Last night as I started to doze off, there was a loud alarm sound coming from my bathroom. Instantly I thought it was the house alarm, but just as quickly realized how dumb the thought was as the siren is no where near the bathroom. Then I realized it was my oxygen concentrator. I got…
Stumbling Is Another Opportunity To Dust Myself Off And Start Over
What can I say about this disease. It seems I make a step forward and then another one back or sometimes even two. For those of you that are now coming across my blog for the first time, I have a disease known as sarcoidosis and in 2007, I found out that it was in…
The Weekend Revisit of “Simplified – What Is Heart Failure”
A reader wrote asking me to give a simple explanation of what is heart failure. It’s simple. At the age of 45, your heart is required to take a mandatory multiple choice exam, of which it must get 70% grade or higher to pass. If not, it fails, thus heart failure. Okay, I tried. I…
Is It Possible To Get Life Insurance When You Have Sarcoidosis?
I came across this article (Click on link below) on how to get life insurance approval despite having sarcoidosis. Unfortunately, this does not hold for cardiac sarcoidosis as if you check any insurance application with anything related to the heart, you are denied faster than a person ordering steak at a vegan restaurant. However, I hope…
My New Oxygen Concentrator Is Less Than Three Pounds And I Love It
I started using oxygen for sleep and exertion in 2007 and at the time I was given those horrendous wine bottle size portable oxygen tanks that weighed a ton and only lasted an hour or two. Those didn’t work for me since my main form of exercise is hiking, so I researched and got my insurance…
The Weekend Revisit of: A Wasted Heart?
There is no greater gift than that of a second chance at life, and the ultimate gift is for a parent or spouse to decide to donate their loved one’s organs so that another person may have life. When an organ is donated, the recipient has a second chance, an opportunity given by the…
The Weekend Revisit of: Dangers of Statistics
DANGERS OF STATISTICS Originally posted April 24, 2012 I read a blog today by a heart failure patient who had just crossed their two-year mark of being diagnosed, and according to them, the statistics state that with their particular condition, they had a 50% chance of living for two years. This person apparently is convinced…
My Dreaded Registering With “The Man” Has Finally Come
Ever since developing cardiac sarcoidosis and getting my AICD implanted, I dreaded that one day it would affect my ability to get my driver’s permit. I love to drive, even in traffic. In summer my job requires that I drive an average of 4,000 miles in that time, and sometimes a 2 1/2 hour trip…
Here I Go, Again!
I haven’t written anything to this blog for a while and frankly it’s because I have no inspiration. The blog was originally meant to be my posts about living my life with Sarcoidosis, but really, I don’t have very much to say anymore on my condition that hasn’t already been said. Then I got an…
Why Do I Need To Justify My Apple Watch?
I stood at the counter of the Starbucks, waiting for my mobile order. The ordering line was long and as usual and I could feel the eyes of those in the line on me, watching that I just walked in the door, right past all of them and straight to the pick up counter to…
The Weekend Revisit Of “Crossing Bridges”
Originally posted on April 22, 2012 On a recent trip into NYC for my ICD interrogation, my wife and I took a train down town to see the 9/11 memorial. We have not been there since the buildings fell. Prior to the attacks we were often in the North Tower as my brother had his…
The Weekend Revisit Of “Superman Is Grounded”
Originally Posted April 17, 2012 I went into NYC for an ICD interrogation (Fancy term for reading my defibrillator), a simple procedure where the doctor downloads the information from the device and makes sure everything is okay. That little device – I call him “Buddy” – keeps track of my heart so completely that it…
Prednisone Withdrawal Is No Fun
Today marks exactly 10 years, non stop, that I am on Prednisone for sarcoidosis. The side effects of this medication can be horrendous, but thankfully my experience in those ten years were just mostly mood changes, thining skin and some weight gain. I am told that for being on it so long, my weight gain…
The Saturday Revisit Of “Letting Go Of My Old Self”
Originally Posted March 9, 2012 Letting Go Of My Old Self One thing about having a chronic condition, and in my case, more than one, is that you need to accept that your life, in one way or another, will change forever. I remember the day before I had my defibrillator implanted I knew that…
The Saturday Revisit Of “It’s All Just 50/50”
Originally Posted January 30, 2012 As I approach my fifth year of living with heart failure brought on by sarcoidosis, I think back to the day that I learned that people with cardiac sarcoidosis have a 50% chance of living for five years and a 20% chance of making it to ten years. Then I…
The Sunday Revisit Of “AICD (Defibrillator) Implant – My Truth”
Originally Posted January 29, 2012 I got a request to explain the procedure for an AICD (defibrillator) implant as the person is scheduled to have one implanted in a couple of weeks. As is my norm, I like to share me replies with the world. So here is AICD Implant – My Truth. After receiving…
The Sunday Revisit Of “A Pill Doesn’t Weigh Anything”
Originally Posted December 6, 2011 When I was first diagnosed with Sarcoidosis in 2006, my BMI was 22. With a healthy BMI being between 18.5-24.9, I was slim and “normal”. Now five and a half years later, with no pause in taking prednisone, my BMI is now 27.1, which translates to being 30 pounds overweight….
The Saturday Revisit Of “Is Anything Really A Waste Of Time?”
Originally Posted December 4, 2011 Yesterday, when I walked into Mt. Sinai for the Sarcoidosis Support Group meeting, I had this instant foreboding that it was going to be a big waste of time, and I almost turned back before I even entered the auditorium. I didn’t and I stayed for the whole thing. It…
I Should Be Fed Up, But Remarkably I’m Not
In 2006 when I entered Putnam Hospital Center to have a failed bronchoscopy to determine if I had #Sarcoidosis of the lungs, little did I know that journeys to hospitals and medical centers would become the norm. Later that year I had an open lung biopsy, by far the most painful procedure I ever had,…
The Saturday Morning Revisit Of ” And I Play My Little Game
The Saturday Morning Revisits are posts that I wrote a few years back that I think deserve another look. Here is one originally posted December 14, 2011 entitled “And I Play My Little Game” I walk through the mall, in the grocery, the streets, and I watch into the eyes of strangers. They glance and…
It’s Good To Be Home
Just landed at JFK and in the car in the way home (no, I am not driving). I was away in in birth land for five days to visit my mother and the heat was ridiculous. Most people would be envious of being in a hot climate, but when you have heart problems and need…
