I am a 47 year old who June 4th, 2009 was diagnosed with a lung disorder, and on the way home from the doctor threw my cigarettes away. Since then the diagnoses changed to Severe Bollous Emphysema and COPD. I am in no way ready to give up or lay down and die. I am however realistic. This disease is progressive. I did quit smoking and that will help ease the progression, but once this disease gets a hold on a body it doesn't slow down much. My doctor tells me that eventually I will be a good candidate for Lung Volume Reduction Surgery or Transplant. When I heard those phrases I about fainted. It had really come to this!
My husband of 26 years had hounded me our entire marriage to quit smoking. As my shortness of breath and cough got worse he told me my smoking would bankrupt our family. You see I had NO insurance. I had been self employed for many many years and thinking I was being sly I never paid myself a salary. I had worked my entire life but for the last 12 years never paid into social security.
I suppose getting old and sick never occured to me. So when I walked out of the doctors office, driving home I was dreading telling my husband what my diagnoses was. Of course he was as scared as I was. After my first Pulmonologist appointment I knew it would be necessary to find some kind of insurance for me. Every insurance I looked into had clauses in them for "pre-existing conditions". My husband was medically retired 18 years ago after he broke his neck on the Fire Department, so our income was fixed and limited. After agonizing over our options we decided we needed to get divorced so I would qualify for SSI. Our divoce was final the 24th of August. I just received my insurance card last week.
Smoking cost me dearly. So, when people talk about returning to smoking because of stress I get pissed. I have this white line on my left ring finger to remind me everyday how costly smoking is. We are still together, he loves me and I know we will be together always, but I selfishly damaged my family.
This site has been a godsend for me. There is so much concentrated information and support here. As sure as I am that I would have quit smoking, I know without this site and the people here I would have struggled much more.
If you are new, buckle down and realize this will be a chore, but a very worthwhile one. In your early days take it moment by moment until you can take it day by day. Come here often and blog and read. Information really will save your butt. Each day that passes you take one step closer to becoming an Ex smoker. Congratulations!
If you are serious about becoming free of nicotine, I will do whatever I can to help you.
Come here often and blog, ask questions, read other peoples stories and you will see there are people that have over come huge obsticals and still remain smoke free. You can learn by their struggles and mistakes.
It won't be an easy journey but in the end it is worth every mood swing and craving.
I wish you much luck and determination~~~~~~~~~~~~~~~~~~~~~~~~~~~
I am leaving the above alone only to show what the results of smoking can do to someone. For me I need to start a new chapter and try and close that book up there.
Things I took for granted are now impossible, and even dangerous. Like going outside in the winter when the inversion layer is bad I can not take a breath. The ice cold heavy air is impossible to get into my lungs. I bought scarves in every color so I can cover my nose and mouth to be able to breath warmed air. It's ridiculous, but my new reality.
Yes, I still have a disease but I will not let that disease discribe my life or define me. Instead I will figure out how I will cope with the limitations and learn to deal with it. That is my new frustration.
My greatest wish for myself and all my friends this New Year is to be kind to ourselves. Understand that we are not perfect and learn to love our differences.
A new update. In January this year shortly after I updated the above... I was put on oxygen. I have also started a daily blog called As I live and Breathe. It is a blog to document a year of living with Copd and Emphysema. I would love for you to stop by. It is a place those also suffering can go and find out they are not alone. It is a place those with loved ones suffering with this can go and get a taste of what that person lives with on a daily basis.
Yet another update.... As of May 13th, 2010 (the day before what would have been my 27th wedding anniversary) I was told due to the lack of oxygen saturation it's needed that I use oxygen 24 hours a day now. So like it or not I have a cannula wrapped around my face now. I even have permanent marks on my cheeks from where the hose wraps around my face. I am also now being checked for heart problems. It seems that once your lungs start giving up it effects other organs. Your heart works closely with your lungs. It needs that oxygen the lungs distribute, without it all kinds of things start to happen. Rapid heart beat, loss of memory, confusion, worsening eyesite, loss of hearing. Isn't it amazing how one thing works with the other?
I reiterate................... THROW THOSE CIGARETTES AWAY! Take a close look at a women who is not even 50 yet who cannot leave her house without planning. I was never a vane woman, but I always took pride in my appearance. It is painful to look at myself in the mirror and see me looking back. I mourn my old self. I long for those days when I could run out to jump in my car and go swimming with my granddaughter. I miss the days when my husband and I were husband and wife. I miss the days when we could dance, snorkle or just walk the nature trails.
Life is short. Grab it, cherish it, and understand how fragile it is. It can be taken away with the strike of a match.
August 27th, 2009
I thought I had a while before this update was added. Today at my doctors appointment he told me my next option was Transplant. He gave me a list of transplant hospitals, of which I chose University of Washintion Medical Center in Seattle. He is forwarding my file there and I am expected to get a pile of forms to fill out and have an appointment scheduled to decide if it will be a double or single transplant. First I have to go on a diet and have a BMI of 30%. Right now I have no idea what it is, but I have a long way to go.
Once I am accepted and added to the list I have to be within an hour of the center. So, relocating is in our near future. Fortunatley we both grew up in Washington so it's not a new enviroment for us. And, as luck would have it my cousin works in the same hospital and oddly enough in the transplant unit, and would be in charge of my recovery. Cosmic stuff!
So, this is not the way I would have written my life, this is not the story I had in mind... but this IS my new reality. Once again I am sleepless thinking of all the possibilities. In 3 days i will be 500 days smoke free and this is what it has come down to,
It doesn't take long to realize life is delicate. There have been so many times that I just wanted to give up. My journey has taken another turn. I have a feeling there will be many along the way. The transplant hospital now wants me to have a Lung Volume Reduction Surgery. It's like having a second chance before transplant. There are still challenges to overcome, but these are lower hurdles and I think I will be just fine. I had a moment the other day that I wanted to throw it all in and grab a cigarette. Of course it was fleeting, but it was real and had I not had medical goals I may have faltered. It surprised me to be so far away from the beginning of my quit and still having those things call out to comfort me. As always I will keep you posted on any changes. Hold onto your quits and always remember it just takes one puff.
2010 ended and I had high hopes for the New Year. My doctor had been talking with a transplant hospital regarding a reduction surgery for me. Throughout November and the beginning of December I had a battery of tests run. I was thinking (from listening to my doctor and his staff) that I had to be patient, but that I should expect to go to Seattle around February. Tonight I got a call from a staff member at the University of Washington telling me that my condition is not serious enough to be considered at this time. I was nervous about the surgery anyway, so this is good news. However, I also was hopeful that with the surgery I could get off this oxygen and have more stamina and breath to do things that now I cannot. So, the news is recieved with mixed feelings.
April 9th, 2011
Another update. I have begun to have heart issues now. It is the normal progression of Copd/Emphysema. When the body gets short on oxygen all other organs (espcially the heart) begin to work overtime to get oxygen to the rest of the body. The result in my case is a rapid heart rate. My resting pulse is now at 100+. With exertion it can shoot to 180 and more. I am exercising carefully, in short periods of time with lots of rest between. I am doing my best to drop weight so my body won't have to work so hard.
I wish every smoker could live one day of my life. Just one is all it woud take. Now, even those around me can tell there are changes. My breathing is much worse, I am having memory issues, I am afraid to wander too far alone for fear I will run out of oxygen and not be able to help myself.
June 25, 2011
I am fighting with everything I have to stay healthy and strong. I saw my brother a couple weeks ago and he told me he could see a difference in me. It is taking me a little longer to do simple things. I walk a little slower, but I walk. We hiked to a memorial site for our mom and I hiked, it took some time, but I did it. Not long ago I walked a 5k just to prove to myself I could. I joined a gym and unlike everyone else I had to prove to them I could work out and not keel over. I had to bring a doctors note in before they would let me join. I work out on each machine with my oxygen right beside me. For those of you who are healthy it's hard to understand what a blow this is to my ego to constantly be reminded I am different. My granddaughter said it best. My grandma breaths special air. ;)
October 6th, 2011
I was reading the above and realized how much things have changed in such a short period of time. Around mid July I began to have chest pain and dizziness and memory issues. I haven't been to the gym since then. I now am trying to regain strength, but I am finding my self zapped of all energy. To do a simple project leaves me exhausted. I am having problems remembering simple words, phrases, directions or conversations I have just had. I forget to put on my oxygen and will get a headache and unsteadiness which reminds me to go put on my O2. I am forgetting to take my medication. Things I would expect of a much older person. At times it's frightening and actually brings me to tears to not be able to remember simple things. I am finding I require much more "looking after" now. There are times now that I am afraid to go places alone, and certain days I don't trust myself to drive.
I lost a friend recently who suffered from Emphysema. She went into the hospital to get I.V. antibiotics and passed away 2 days later. I think of her and realize that could be me. She had less damage of this disease as I do. It has left me realizing how precious time is, how fragile life is. Damn Cigarettes!
January 2012..... Just one more update...
I have been going to the emergency room several times. Actually about every other month. I can be happy doing nothing physical, taking care of myself, keeping my oxygen levels where they belong and out of no where I will get this tremendous pain in my chest. If feels like ripping and tearing and is almost unbearable. It does not go away. Breathing seems to make it worse. They tell me it is Anxiety. This amazes me. I can not see how something mental can come out of the blue and hit me with a pain I have never experienced before. I usually spend 5 to 7 hours in the emergency room given heavy doses of pain medication which leaves me sick to my stomach but eventually takes the pain away. It seems like it lingers for a few days just under the surface, like one twist or bend or cough and it will come back full force.
The last episode was the 12th. I had such hope for the new year. I am on an eating program that has me lighter than I have been in years. I thought I was about ready to begin small amounts of exercise again.... but Nope! I am still tethered to a machine or a tank... forever, everyday, everynight. The only time I am lose from tubing wrapped around my face is in the shower and the time is close that I will need my O2 in there also.
I am experiencing a depression that I have never felt so hollow and angry, misunderstood and hopeless. It's all part of this hideous disease.
This is 3 years worth of progression. Imagine what the next 3 will bring? I will be 50 next month. I never expected my 50's to be spent in and out of hospitals and surgeries.
This is the direct result of smoking. Feel like lighting one up now?
January 26th, 2012
My "Husband" who legally we were divorced when I found out I was sick and I are now officially seperated. I am placing no blame. He said I have changed over the last 4 years...I am sure I have. Try as I might I can't shake the depression and the stigma, and he wasn't helping much. It was a mutual divide, but it hurts more than anything I have ever experienced before. So, he will go his way and I will figure out a new path for me.
February 3, 2012
My disease almost took away everything that was important. My partner (husband) and I decided we are starting over, seeking counseling and holding onto what we have. I have felt so damaged, so used up, so unattractive that I expected everyone around me to feel that was too. Counseling will do us good.
May 28, 2012
I am coming up on my 3rd year anniversary of being smoke free. :) This will be the strangest anniversary I have ever had. Instead of going to dinner, or having friends over.... I will be at Oregon Health Sciences University in Portland being evaluated for a Lung Volume Reduction Surgery, and also because I am officially labled at risk I am being seen by a OBGYN for surgery.
3 years to the day I quit. If I am not a good candidate for this surgery where they will remove the upper portion of both lungs, then I will be sent to California to Stanford to be looked at for a double transplant.
Looking at the positive... perhaps for my 4th anniversary I will be off the oxygen tubing and can walk freely and swim and do all those things that now I can't. I have lost 64 pounds since I quit smoking. I was kind of forced into it. They told me my BMI had to be under 30% to be considered for either surgery. I am well under that now and am keeping going.
When there is another update I will be here again. Until then use my story and think twice before picking up another cigarette.
Well I have figured out that the medical feild moves almost as slow as the government.
After multiple trips the last 3 months to the Oregon Health Sciences University I have finished all the testing and have a date for surgery.
On August 22nd, 2012 @ 6:00 a.m. I will have a Lung Volume Reduction Surgery. They will be removing up to 2/3's of each upper lobe. I will stay anywhere from 6 days to 3 weeks. It is all going to depend on my staples holding and no air leakage, and how fast I can recover and have tubes removed from my sides and chest.
It was June 4th 2009 that I was diagnosed and quit smoking. A little over 3 years and I have declined to this point. This will not cure me, it will only give me another 3 to 5 years before I will need a double transplant. 3 years!!
If I could have had a sneak peak into my future I can tell you I would have never smoked, or certainly quit much much earlier.
October 7th, 2012
Well surgery went well. They didn't have to remove as much as they thought. It still was not a walk in the park. When they start cutting your lungs out, it's (for a better term) memorable. I have done all the resting and healing they have asked me too, and now I have to teach myself how to live a healthy life. I was so used to packing around medications and oxygen cannisters and having a tube around my face that I forgot what it was like to live a healthy life.
Now for the first time in 3 years I can walk proud. I have lost just over 100 pounds, I can wear necklaces and earrings again, which sounds silly and minor, but when you have a cannula around your face you can't wear most jewelry.
I still have "episodes" where my chest ceases up. It feels like a heart attack, my chest gets tight like someone is squeezing it, I get sweaty, I feel like I can't get a breath. I have learned that it's all up to me to stop it. I take a pain pill, take a muscle relaxer, elevate my feet and ride it out taking slow breaths in and out. They last about a half hour. I hadn't had one since around May or June and then suddenly the other night right after I went to bed it hit me. I was worried because of my surgery that I might not get this one under control..... but I did.
I have control now. I am a new person, whole and not damaged.
Yes, I will always have emphysema. And, yes most likely in 5 years or so I will need a double lung transplant because emphysema is not curable and will continue to advance.
But, I will be healthier. I will have lived healthy again and know what the rest of my life will be.
I am so grateful to God, and my friends for seeing me through this.
May 26th, 2013
As I said above on August 22nd I had my Lung Volume Reduction Surgery. I was seeing my Primary Care Doctor (who would consult with my Cardiologist and my Pulmonologist) once a month, then every 3 months. I went to see her last week and after checking me told me that she didn't need to see me for A YEAR! A YEAR? How can that be?? She told me that a year ago she was ready to help me die. That I was at the doorstep. Now, I am healed and healthy.
Bill again in January of this year asked me for a divorce. This time I said O.K.. I am tired of holding together something broken. I think being a caregiver for so long and going through all the ups and downs with me took it's toll with him. I will always love him, I don't think a person can spend 33 years with someone and not form a forever love. I can almost understand his need to get away.
I am independent now. I no longer need tended too. I have found a little house to buy that overlooks the lake and the city. I am off of Social Security and was offered a fulltime job which I grabbed. Funny how things come your way and you're not even sure you want or need them, but God has put things in place to make it easy for me to start this next chapter of my life.
I am working in a Home Depot kind of store. I am selling flooring for a wage, plus commission, plus benefits, plus a 401k. I mentioned to my Pastor at church that I would be interested in purchasing her car (because they had just bought a new one), and she sold it to me a week later for $1.00. With gas so expensive I couldn't afford to fill up my Durango @ $85.00 per week.
I am blessed. Who would have thought 9 months ago I had a surgery that removed part of my lungs and now I am working a full time job where I pick up and move around rolls of carpet that weigh a couple hundred pounds? That I have the air and stamina to run all day from end to end of a warehouse store?
Life is ever evolving. They tell me my lung condition that nearly killed me is progressive. I want to be that miracle that says maybe..... but not on this girl! My future is bright, a little unknown, a little scary... but the possibilities are endless~!
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