| Author |
 Topic  |
|
|
Christin-NE
Rookie
USA
9 Posts |
 Posted - Jul 19 2010 : 2:04:59 PM
|
Hello everyone,
My name is Christin, I am a 44 year old female with moderate panacinar emphysema. The majority of the damage is contained in the lower lobes, but there is some damage in the upper lobes as well.
Most of my numbers aren't too terribly awful:
FVC: Pre 106.3% Post 114.6%
FEV1 Pre 52.2% Post 58%
DLCO 83%
However, my RV and FRC aren't great. 194.4% and 178.5 respectively. But I also have had asthma all my life, so some airway remodeling could occur and cause air trapping/hyperinflation.
As I said, I had asthma all my life, so I was used to having episodes of being SOB and having limitations of breathing. I use Advair and Albuterol, with the occasional episodes of prednisone during extreme exacerbations, but for the most part I didn't think things were that bad. That is, until I found out things weren't as great as I thought they were.
I am a second year respiratory therapy student. During our summer clinicals we are required to do a rotation in the pulmonary lab, at this time, all students are also required to have their own PFT done. Normally they only do the basic spirometry, but once the tech saw my numbers, she ran the complete set. I knew how to interpret the numbers, and I knew they weren't good.
The Pulmo doc was called in to look at the report...I ended up having a high resolution CT, and thus began my journey on the other side of the stethoscope. And yes, I have had blood drawn to be tested for Alpha-1. The doc assumes that this is what it would have to be since I have never smoked and the damage is mostly lower lobes, but I won't know for sure until the test comes back.
The doctor also believes the majority of my lung damage occured because I was a bartender for 6 years and my parents smoked around me during my childhood, but I suppose it doesn't matter where it came from, I just need to make sure I keep any more damage from occuring. Happily, Nebraska is a non-smoking state now, no smoking in bars or food places. It is unfortunate that even though a person isn't allowed to smoke in a bar or restaurant, they can (and do) smoke right in front of the door where people walk in. I know people have the "right" to smoke, but what about the "rights" of non-smokers and their lungs?
I suppose I am angry that my lungs are damaged even though I chose not to smoke, yet the choice of others contributed to it. Of course one could say *I* chose to work in a bar, which is true, but when I was 21 there wasn't a whole lot of discussion on second hand smoke damage. Plus, I had grown up in a cloud of smoke, between my mom, dad, and grandma, I was never not being exposed. I always thought that as long as *I* didn't smoke, I would be fine. Of course I know differently now.
Now, as I said, I am on the other side of the stethescope. I had an anxiety attack last week when I had to go give medication to a 53 year old emphysema patient having an exacerbation of her COPD. Watching her struggle to breathe made me realize that this could be me. That instead of me taking care of the patients, I am going to be a patient needing taking care of. I also know that if I am put on O2, then there isn't any way I am going to be able to follow the path I wanted to take. I wanted to be a paramedic flight-RT and work on Life Flight. I would work as an RRT in a trauma ER and be on call for Life Net. I can't see me doing that while toting around an E tank of O2 for myself.
As of now, I am going to continue my education and do as much as I can while I can. One of my rotations will be in pulmonary rehab (I go to Methodist College in Omaha, we have pulmo rehab at 4 different hospitals here) so I will get an opportunity to go through the rehab as a student, but reap the rewards as a patient. It is almost a double edged sword: the good news is, I know a lot about pulmonary issues, the bad news is, I know a lot about pulmonary issues. I am of course fortunate to have access to care and testing, but that doesn't make coping any easier.
I have written a book, and I apologize. I suppose I just needed to speak to others who understand. I can't very well burden my patients with MY issues, so here I am.
Thanks for listening.
Christin
|
|
|
CarolCA
Contributing Member
USA
606 Posts |
Posted - Jul 19 2010 : 3:47:16 PM
|
You do have a very unusual situation and I am sure that many people with tell you that you don't necessairly end up on O2 and if you do it might be a long ways down the road and you still probably will be able to accomplish most of what you want. You figures are confusing because of your very good FVC and DLCO. That excellent DLCO is going to go a long way in keeping you from needing O2. Pulmonary rehab is doubly important as an good exercise program, keeping excess weight off and using proper meds is really all one can do as well as trying to stay upbeat. Not sure about the LifeFlight but helicopters really don't fly high so you might be fine. Also, if you do have the Alpha-1 then there are other options for treatment so try to stay positive and don't worry about down the road. You have the advantage of being around professionals in the health care field so you will be able to get the best information. Try to keep you anxiety under control with something other than drugs, like Tai chi, deep breathing,etc cause that will do you in faster than anything in the setting your are in.
As far as the past, it is over. when most of us started smoking it was not considered unsafe but by the time we found out it was we were either too stubborn or addicted to quit. That makes us feel pretty stupid but it is over so we have to deal with the cards given us even. I am sure others will chime in here. I just had a long phone call from a friend from Fremont, NE and I know it is really hot there so stay cool. |
 |
|
|
PennyPA
Contributing Member
USA
1564 Posts |
|
|
jmrommes
Senior Member
201 Posts |
Posted - Jul 19 2010 : 9:30:49 PM
|
I echo what Carol said, but will really encourage you to begin a vigorous exercise program; something you do every day. Part of the problem with PR programs (in my opinion) is that they often don't encourage COPD patients to push themselves. Granted, for us, the whole issue of exercise is keeping that delicate balance between getting an intense enough workout to make a difference while keeping our O2 sats at a reasonable level, but to really make the whole exercise thing worthwhile, you have to push to that limit. So, do take that into account.
My experience is that if you exercise, you will help the lung function you have become much more efficient, and as you get physically stronger, you will need less O2 to do more....whether you're getting the O2 with or without supplementary O2. I really think if you get in the habit of exercising daily and keep it up religiously, you should be able to do exactly what you want to do with no trouble. And you can join me in bugging the portable O2 concentrator developers to come up with that POC that clips on your belt with batteries that fit in your pocket. I don't use supplementary O2 now, and I sure hope they develop that POC before I need it!
Good luck with your plans....don't give up on them!
Jean |
Exercise not only lets me live, it enables me to have a life. |
|
|
|
jmrommes
Senior Member
201 Posts |
Posted - Jul 19 2010 : 9:37:58 PM
|
Sorry I forgot one thing about exercise that should help you, and that is that it is a tremendous stress reducer. Also, while the patient could be you in many years, she's not you now. There are things you can do to manage and control your COPD: exercise, take you meds, eat well and nutritiously, watch your weight, get your flu shots and wash your hands a lot. If you do those things, you may well be able to avoid EVER being that patient. That's my goal......I'm 66, have an FEV1 of 34% and I intend to live to be a really interesting old person!
Jean |
Exercise not only lets me live, it enables me to have a life. |
|
|
|
Christin-NE
Rookie
USA
9 Posts |
Posted - Jul 19 2010 : 10:23:53 PM
|
Thanks everyone.
I do exercise daily. I ride my bike around town when it is nice, and ride my stationary one when it isn't. I also walk, a lot. I was hoping to get to go hiking in the mountains during my school break in 3 weeks, but now I am worried about being in high altitude and doing strenuous exercise. I suppose I will just see how it goes.
I also have clinicals; so I walk, run, lift, carry, and am moving constantly for 6 hours at a time. Not a lot of down time when I work the trauma hospitals. When I am at school, my classes are on the third floor and I walk up the stairs carrying my book bag filled with books (7 BIG books)plus my purse, so I am doing my best to keep in shape. My BMI is 20, so I am alright in the weight area. I probably don't eat the best though. I survive on coffee, energy drinks, and whatever food I can cram into my mouth while I have time. Bad, I know.
I do worry about what I will catch in the hospital while I do clinicals. My clinical instructor said everyone gets exposed to TB at least once, for most people that isn't a big deal, but for me that is a big deal. And I do wash my hands before I go into a room and after I get finished. I also wear gloves in every room. I am a total germaphobe. And that isn't because of my lungs, that is because of taking microbiology and learning just how bad germs can be and what they can do. I have to get flu shots every year, it is mandatory at school and in clinicals.
Thank you again for your replies! |
|
|
|
majseventh
Senior Member
USA
414 Posts |
Posted - Jul 20 2010 : 01:07:20 AM
|
Don't forget to get your pneumonia shot now every five years.
Also, your FEV1 is good compared to most and if you do as Jean, Carol and Penny said you will not be on O2 for a very very long time.
Aerobics are the best exercise for us along with watching your O2. Most of us have our own oximeters to watch this.
I live in California and we are probably the first to have no smoking in most facilities. Also, there are laws to not smoke in front of buildings within so many feet.
Hopefully someone (even you) could get that law in place in your county or state. It really does help.
My family smoked up a storm while I grew up even though both of my grandfathers, great uncle and then later aunt died of COPD. My dad had copd and died from stopping breathing from sleep apnea, etc. so I totally understand where you are coming from.
But, you need to get over it and move on. We all have to so we can live our lives with this disease. Thank God we have better medicines and exercise programs, many trials being conducted and new procedures. We can live better and longer than our ancestors and fight this thing.
Welcome to the group. |
CaseyCA |
|
|
|
PennyPA
Contributing Member
USA
1564 Posts |
Posted - Jul 20 2010 : 10:18:41 AM
|
| And why not wear a mask when treating your patients? It may scare a few of them the first time 'cause they'll think either you or they must have some horribly contagious disease but just explain the situation to them...that you're testing masks for NASA. |
Penny's LVRS Blog
And Our Travel Blog After LVRS
|
|
|
|
jmrommes
Senior Member
201 Posts |
Posted - Jul 20 2010 : 10:39:40 AM
|
Chris, I don't think you need to be concerned about strenuous exercise, unless and until you know that your O2 sats are getting too low when you do it. I know that may be difficult to measure on the run, but you undoubtedly carry an oximeter as part of your regular gear, so use it. If you keep yourself in good shape with a regular exercise program, that should make it possible for you to do the really strenuous stuff in bursts, which is probably what your work will be like. I suspect that most of the time you may be exerting yourself, but you're not running with a full load of equipment for a helicopter all the time. Remember your breathing techniques and use them all the time....that will help you avoid getting really out of breath. But the biggest thing is to stay in good shape. Even though you're wildly busy at this point with life and school, keep up your regular exercise program.
As for hiking in the mountains, I'd go ahead and go, especially if you've done it before. If you haven't, you might want to just try the upper elevations and see how things go for you. Take your oximeter and keep your O2 sats right up there. You may have difficulties, in which case, get yourself down the mountain, but if you take your oximeter, you should be able to monitor yourself well enough to avoid big problems.
Jean |
Exercise not only lets me live, it enables me to have a life. |
|
|
| |
Topic |
|
|
|
Newly diagnosed in an unusual way.
