Good afternoon forks, I hope you have had a pleasant week and have plans to occupy your weekend to the fullest. For me it’s off to a dance recital, I believe this is my 1st of these events, but I know it won’t be the last. My granddaughter will be staring and I will be paying close attention.
On my scale it has been a 3 kinda week, no significant improvements, but more importantly no relapses, no back sliding, this alone makes it a good week. Results from last Friday’s blood work are very good. My white blood count is in the normal range. And all other indicators they watch are within normal acceptable. So these are all positive signs. Also the picc line was pulled today. I have been taking Cefepime 2 Gm via IV every eight hours for the last 21 days, clearly it has accomplished its’ mission. I also have been taking Colistimethate 75mg every 8 hours (via nebulizer) to combat the Pseudomonas that has taken up residence in my lungs. The regiment seems to be controlling the Pseudomonas and I will continue this until June 18. I will stop taking this drug until July 5, at which time I will start again and take through the cruise. It is hoped by myself and the Doctor that this will allow me the greatest protection while on the cruise. The cruise sails in 43 days, the countdown has begun!!! I will also be prescribed an antibiotic to take with me just in case I feel something coming on. This seems like a logical plan, and gives me a great deal of hope that I should be fine during the cruise. If it works I am all for it. The only other number that is significant at all to me was my INR, it was checked Monday and found to be 2.9 (barely inside therapeutic range) I am to continue current dosage and it will be rechecked on this coming Monday.
Today I would like to spend a moment or six talking about Shortness of Breath (SOB). For those of you who don’t suffer from SOB I would appreciate a moment of your time to do a little experiment. A therapist shared this with me a couple years ago. It’s a demonstration she uses when counseling families of patients who suffers from the likes of: COPD, asthma, chronic bronchitis, respiratory tract diseases or Emphysema. Take a regular straw like you get at McDonalds and cut it in half. Insert one half into each nostril of your nose, close your mouth and breathe through the straw. Take normal breaths, walk across the room a couple times, bend over to pick something up, tie your shoes, or stand on your tippy toes to put something away. That gives you a bit of the feeling of what your loved one is going thru 24/7. But that’s just a bit. Now take a coffee stirrer, cut that in half and do the same thing. Now you have some idea of how their day is 60 minutes an hour, 24 hours a day, 7 days a week and 365 days a year. And it never gets any better. That’s how it is when you’re in the advance stages of these diseases. The therapist when on to tell me that she could stand in front of the group and watch the light bulbs go on as spouses, parents and children alike realized what is happening to their loved one. Maybe your light bulb just when on?
Last June I started this blog, below is one of my very first posts:
Gasping for breath….. June 21, 2012
The most difficult aspect of dealing with COPD for me is when I gasp for breath. For no apparent reason, I lose my ability to breath and I gasp. Sometimes in only lasts for a second or 2, other times 3 or 4. It is very very scary, and it fortifies my feeling of helplessness. Thoughts of is this how it will end when the time comes go thru my mind…..
At the time I wrote this I was only suffering a moderate shortness of breath. Since this post I have moved on to the next level of SOB. Here is a clinical definition of SOB:
The American Thoracic Society defines dyspnea as: “A subjective experience of breathing discomfort that consists of qualitatively distinct sensations that vary in intensity.” Other definitions describe it as “difficulty in breathing”, “disordered or inadequate breathing”, “uncomfortable awareness of breathing”, and as the experience of “breathlessness” (which may be either acute or chronic).
Dyspnea is distinct from labored breathing, which is a common physical presentation of respiratory distress.
As many of you know I take part in a discussion group at http://www.dailystrength.org/c/COPD-Emphysema/forum . This group is made up of primarily folks that suffer from COPD or Emphysema. We are blessed with many talented and well-informed smart folks who suffer from these diseases and have used their time in a very constructive manner learning and sharing about the disease. We are also blessed with having many loved ones join the group seeking advice or counsel in how to deal with their loved one. One topic this is always being addressed is SOB. We talk about the many ways it comes on, such as; as we eat, or go to the bathroom, simple walks across a room, tying one’s shoes, the things that cause SOB are too numerous to list. Many things folks do without thinking cause us great discomfort. We talk about how it impacts us, what we have to do to get around it, what if any medicines work for individuals, or home cures. We talk about exercise and how far we can push ourselves, and we talk about how we are sometimes embarrassed by our SOB. We also address the fear that comes with not being able to catch a breath, or how some of us hide away, trying to put ourselves in a position where we are not captured by SOB, only to find that even sometimes when we are resting quietly for no apparent reason we are suddenly in the throes of SOB. Sometimes it comes on so unexpectedly, you can’t emotionally or physically prepare. There are many aspects of COPD and Emphysema that as a patient you can prepare for, but SOB isn’t one.
When you address your doctor about your concerns regarding SOB, and after all the usual suspects are put to bed i.e.; congestive heart failure, Anaemia, Acute coronary syndrome, acute myocardial infarction, and a list of other really scary things he looks you in the eye and shrugs. He shrugs because he or she has done all they can, SOB comes with the disease, if they could cure the disease the SOB would go away as well. And no matter what, there is no way to prepare for SOB. You can’t bank breath.
All of today’s rant is about awareness. So both the informed and the uninformed can come to a better understanding. I have talked about SOB in many of my prior posts and it has been and will be a part of my weekly posts regarding my health at that moment in time.
Well folks I hope you have a pleasant day, thank you for your continued good thoughts and kind words of encouragement. As always your comments are encouraged and welcomed. — Bill