After so many years, it is good to see that positive steps are being taken towards education of doctors about sarcoidosis. First official ATS practice guidelines for Sarcoidosis cover diagnosis and detection – Scienmag: Latest Science and Health News — Read on scienmag.com/first-official-ats-practice-guidelines-for-sarcoidosis-cover-diagnosis-and-detection/
Tag: Doctors
This Is Getting Too Close To Home
In less than a week, confirmed COVID-19 (Coronavirus) went from hundreds of miles away to 40 miles away to 5 miles away from my home. I fall into the vulnerable population because of my heart and lung conditions, and so I am being extra cautious. I have had bad flus before and recovered so I…
Xeljanz (Tofacitinib) Might Be Successful In Treating Sarcoidosis – Sarcoidosis News
Xeljanz is a partial inhibitor of the JAK enzyme that has been used off-label for the treatment of sarcoidosis and is being studied in clinical trials. — Read on sarcoidosisnews.com/xeljanz-tofacitinib/
The Weekend Revisit Of: An Echo Gone Wrong
I went in for an echocardiogram last week to see if I still had shunting at my PFO closure (if the hole my heart was still not fully closed and if there was oxygenated blood still mixing with oxygenated blood), and it turn out to be quite the adventure. I went to my new cardiologist’s office…
Biotechs Are Fighting To Treat Sarcoidosis And Other Autoimmune Disease
While we mostly think of disease as being caused by bacteria or viruses, an illness can often occur when the body’s own defenses turn against itself. Here we’ll take a look at seven rare autoimmune diseases you may not have heard of and what biotechs are doing to treat them. — Read on labiotech.eu/features/rare-autoimmune-diseases-biotech/
Defying The Rules And Living
When I first discovered that I had a hole in my heart, I was told that for six months afterwards I would need to take it easy. I needed to give the heart time to grow tissue over the plug that was placed in the hole, otherwise, if I fell too hard or anything like…
Let’s Change The Term “Heart Failure” To “Cardiac Impairment”
I have cardiac sarcoidosis and as a result, I have heart failure. I really hate that term. There is such a finality to it that it makes it sound as if all hope is lost, there is no coming back. I really wish that the medical establishment would start using a different term, such as…
Avoiding The Purity Sales Pitch
Sitting on the over stuffed, over sized grey leather sofa, I face him, amazed by his frizzed out hair and his 70s sense of fashion. He asks me a million and one questions about my health history, going even deeper into my emotional history. No other doctor had done that before. He studies me intently,…
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…
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…
Prednisone Withdrawal Symptoms Worse Than The Actual Side Effects?
Here I go again. I have lost count of how many times I tried to wean myself from Prednisone. I am on this drug now for 10 years, 8 months and 23 days, and I tried to come off of it multiple times, all with disastrous results. I was being kept on a maintenance dose…
Before You Can Really Get Help, Learn About Yourself
Exactly ten years ago today, I got a call from my doctor to confirm that my test results were positive for sarcoidosis. The day before, I came out of the hospital after a three day stay for an open lung biopsy, the test to determine if sarcoidosis was indeed active in my lungs. To date,…
Questioning The Universe’s Decisions For Us Is Really Pointless
The other day I was reading on my iPad in bed when I fell asleep and my iPad fell onto my chest, right over my AICD*. The ipad has a keybord case, which has a magnetic closure, and magnets affect ICDs. They literally turn them off. This happened to me already before with my old…
The Weekend Worthy Revisit: The Definition Of Me
Originally Posted on October 3, 2011 When I moved to the US 25 years ago, one of the things the struck me with the culture is people’s need to know what you did for a living. They would meet you, and immediately ask what type of work you did. I realized with time, that no…
When A Day At The Hospital Can Be A Pleasant Experience
All too often we are quick to list the bad days we have, the horrible people we meet and bad experiences we encounter. I know that I too am guilty of that in my blog. I have a pet peeve with rudeness, and I posted before about some of my negative experiences with nurses. Is…
Awesomely Amazing Happy Results
I had a right heart catheterization on Monday to determine what is the cause of the increase in my shortness of breath and huge drop in oxygen saturation with exertion. The possibilities were either my pulmonary hypertension worsened or my heart is going back into failure. Turns out, amazingly, it's neither! All of my pulmonary…
O Is For Operations
This is a Blogging From A to Z Challenge post. April 17th – O If you told me nine years ago today that by now I would have five different operations, four of them alone heart related, I would probably have laughed. And then if you would have told me that I would have a…
N Is For Navigation
This is a Blogging A to Z Challenge post April 16th – N When I started along this journey of my life with sarcoidosis and the accompanying conditions of heart failure and pulmonary hypertension, I had to learn quickly how to navigate my way through the medical establishment. Since I have different conditions, I somehow…
C Is For Changes Which Are Good Sometimes – I Hope
THIS IS A BLOGGING A TO Z CHALLENGE POST April 3, 2015 – “C” 2015 is proving to be a year of many changes so far. Some of the changes were stressful, and others were welcome, and yet others were surprising, but needed. And we still have a little over nine months to go…
Flashback Friday: The Nurse
Originally posted to my blog July 31, 2011 I have a real pet peeve with rudeness. It drives me up the wall, especially in the customer service area, and yes, nursing falls under that category too.I have been having a hard time with my breathing in the past couple of days and my chest hurts…
Flashback Friday: Back From Break
Originally posted to my blog June 3, 2011 Like the consummate theater artist that has played many years out on stage in the same part and needed to get away from the constant day to day grind of being in the public eye, so too did I need to be away from the constant probing…
Sometimes Inconveniences Can Be Subtle Messages From The Universe
Yesterday, I went into Mt. Sinai for my quarterly pulmonary sarcoidosis work up, and like a good little Boy Scout ( yes, I was for all of two minutes), I had all my ducks in a row. (Who came up with saying anyway? Why do you want to put ducks in a row unless you…
21 Things You Need To Do To Live With Sarcoidosis
Almost all the emails I get are from people asking how I got better, and I always say that it was a combination of different things. When I recently I told someone that, they told me to give them a checklist of everything that I did. So here is my checklist of everything I think…
Flashback Friday: Should We Be Cleaning Up At The Doctor’s Office
I Originally posted this to my blog April 26, 2011 Would you go on a corner and when you come across a stranger, ask them to hand you their shirt or jacket, put your left arm in and squeeze your arm with your right hand for a few seconds and release, then take the shirt…
Run For The Hills!
It's all over the news. The panic, the fright, the government intervention. Why? It's Measles! Children are getting measles! Eh? What? Really? You would think that it was an Ebola outbreak. Remember when a kid in your neighborhood had the measles, your parents sent you over there to hang with them so you could get…
Life With A Chronic Illness Can Be A Chore, But Only If You Make It So
April will mark the 12th anniversary of the start of my journey with the disease sarcoidosis. My journey actually started long before, but April is when I went into have an open lung biopsy for a definitive diagnosis of the disease. It has been a long and arduous journey, but all in all, my life…
The Good, The Bad And The Ugly
Admittedly, I have not been keeping up with posts to this blog, but life happens and time seems to slip away from me more and more. Hopefully I will be able to get a grip soon and be able to devote time more appropriately to the blog. Until then, here is a quick update of…
Think About It Thursday
Written by Basil Rene © 2014 All Rights Reserved
Above Everything Else, Always Listen To Yourself
Life with a chronic illness is sometimes confusing, plain and simple. You have all these voices coming at you in different directions telling you many different things. If you are like me with different specialists for each condition, they all try to work together, but they all have their own separate opinions, and you don't…
