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Chronic Illness


Today is Saturday. I had a really eventful week and today is a rest day. I didn’t used to have to take rest and stay at home days unless I just wanted to. I have made significant progress in controlling my COPD and exercising and staying well at least a well as I can be.

I have made it through the attendance period for playing in my game with my Clutch City Crushers next Saturday. I made attendance, I have been in full contact and on Thursday night participated in the 5 on 5 mini tournament. I was able to play in back to back jams that lasted a full 2 minutes. I also jammed when it was my turn. This is a significant accomplishment. Only a few weeks ago, my heart rate would go too high to jam. I keep a close eye on my heart rate as much as I do my breathing and my ability to catch my breath. This is a new normal for me. I have had to make some major changes in my lifestyle, my diet and overall daily management.

This post is to document my how I made progress, what I went through to get here, and my plan for the future. This will probably be long and not real pleasant but I need to put it down and people need to understand.

I spent all of 2016 sick off and on like I had not been since I was a child. I was treated for sinus infections and cough and exercise induced asthma. I had a rescue inhaler that I got when I was sick and I continued using it as it helped with endurance practices. By November I got really sick and had been on and off antibiotics for several months and the last round had no effect. The day I finished them I called for another appointment because I could not catch my breath and the cough had gotten worse instead of better.

When I got to the Dr late afternoon, I could barely breath to walk in and the rescue inhaler was doing nothing to help. The put a pulse ox on my finger and immediately got oxygen and put it on me. Obviously something was not right. The coughing fits had gotten so bad that I could not sleep longer than a few hours at a time. My pulse ox was at 88. The PA (because I never did see a Dr) gave me a breathing treatment and sample inhaler with a steroid in it and prescriptions for antibiotics and oral steroids. I was also scheduled for a lung x-ray the next day. The results came back abnormal so I was referred to a pulmonary Dr. I was able to get in to see him on November 22. He explained that my x-ray of the lungs showed over inflation which is a symptom of emphysema and I had bronchitis that triggered an exasperation of COPD symptoms. So I now know I have COPD. I was scheduled for a PFT or Pulmonary Function Test.

I had the PFT test done on December 8th. The follow up appointment with the results of this test showed that I had 50% lung function. This was a total shock, how on earth did I loose so much lung function without noticing it. Well, that is because the disease progresses so slowly we assume the changes are age related and as in my case I was being misdiagnosed. I blame that on never getting to see an actual Dr and the PA dismissing my continued symptoms or not recognizing them. I also, did not realize that I should have been insisting on more attention due to increasing health changes that seemed minor at the time.

As things started getting worse, I notice several things that I dismissed as age related changes. First I noticed that my fingernails which were always strong and thick became paper thin and just tore off if they got a little long. I was also having major issues with my feet cramping and just hurting when walking. Since I skated, I assumed it had to do with that and looked for insoles to help. I ate more bananas but that had no effect on the cramps. I got better from the flare up in November but right around Christmas time I started to feel bad and cough a lot more. Now I know that is a sign to call the Dr and get on medication immediately. Not understanding that, I thought I could overcome a cold by myself with over the counter medicine as I had always done before. I made it through Christmas.

On December 30 I was struggling at work. I got home and went to the bathroom and to change clothes. I could not get back to the family room without stopping every few steps to try and catch my breath. I could not call out to my husband because I did not have enough air to talk. I was sweating and beginning to panic. I finally made it to the family room and fell on to my spot on the couch and tried to catch my breath. I still could not speak. Bobby asked me if I needed to go to the ER, I did not understand what he was asking at first, I was just trying to breath and control the panic. He asked again and I was able to shake my head yes. This was the scariest thing that I have ever been through. To see me today you would never know I have this disease, because it is invisible but I feel it all the time.

That visit turned into a 5 day stay and being released with oxygen. I was on oxygen 24/7 for 13 days. I was able to start weening off of it and was able to go without finally. During that time I was on IV antibiotics, shots of steroids liquid magnesium and Xanax. I went home with to my inhalers, a nebulizer machine, oral steroids and antibiotics. The oxygen company came and set up the concentrator and showed me how to use it. I had to sleep in my couch recliner in order to not have to move the oxygen from room to room. I had a tube long enough to reach the kitchen and hall bathroom. This I know will eventually be my future.

I have had several setbacks but I am finally staying well enough to be mostly normal. I found a FB support group started by a Dr that has the best information on how to help myself and after reading everything in his book (https://pulmonarywellnessbook.com/ in case someone reading this needs this help) I am taking my medication correctly and at the right times. This has helped immensely. I started slow on the exercising and plan to add strength training at the end of the month. I have changed my diet considerably and now take my supplements regularly, only indulge occasionally in food that is bad for my COPD and drink less alcohol. I also require more sleep. On days such as last Thursday night after practice I got 5 1/2 hours of sleep. I felt that all day and a lot of why this is a rest day. I went to bed at 10 my normal time and slept until almost 9 am. This is also my new normal. I had gotten used to being up by no later than 7 and I used to be able to work from 6:30 to 3:30. I can no longer do that. Practice nights are too late and I cannot get enough rest. My chances of getting sick go up when I don’t get enough rest. That is somewhat depressing but it is what it is.

I have however, come a long way from last November and most of this year. I will have to plan my travel and vacations carefully to have medication, oxygen and everything I might need in case I have a flare. The flares are not just from getting sick, any airborne irritant can cause them. That means smoke of any kind, exhaust from vehicles, perfumes, lotions, pesticides to name a few. I can tolerate essential oils and some mild cleaning products so far and I will find out how much the heat and humidity bothers me this summer.

Now I am experiencing hair thinning most likely from the inhaled steroids I have to take on a daily basis. I have found that my AdvoCare work out product O2 Gold helps me utilize oxygen at any time and this has been great asset for me. If ever I needed proof that something did what it said it would do, this has been it. I have been trying a supplement for my hair and we will see if that makes any difference. So far I cannot see that it is.

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Mother’s Day 2017 with my girls

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November 22 2016 Pulmonary Dr visit

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