Saturday, March 31, 2012

Mysterious illness partially revealed

First - thank you to everyone who has sent cards, emails, texts and Facebook messages. Knowing I had lots of people praying for me and just being aware of how hard of a time I was having made such a difference.  Your thoughts and prayers and even the smallest effort to acknowledge someone's challenge make a huge difference. 

I have herpes simplex 1 - the virus that causes cold sores on the face - in my lungs. Had we not fought to get a bronchoscope done at the hospital they never would have figured this out. The doctors would have continued to allude to it being psychiatric.

It is rare but not unheard of for herpes to make it to the lungs. They think it gets there via the bloodstream but are not sure.  Symptoms of the lung infection are not well documented so I am going to document mine:

Raw, burning sensation in lungs. Painful to take breaths. Pain at level 5 to level 7. Fluctuating energy levels- very weak when pain is at its highest. Pain/energy intensity comes in waves. At some point as the pain increases and the energy wanes there is what feels like an energy explosion - very painful, then it starts easing. This happens 6 to 8 times a day. In addition I have a very sore throat and periodic sinus inflammation and mucous production. I also have hot flashes and a fluctuating very low grade temp. It often feels like my heart is palpitating when the pain is high. Yesterday I started having the new symptom of burning in my stomach.  My appetite is poor and I have lost 15 lbs in a month. I crave fresh fruit and orange juice. I only sleep in two hour blocks. That has been consistent since the onset of the lung pain. Sleep two hours - wake up for an hour - back to sleep for two hours, etc.

I am being treated with an antiviral and two kinds of antibiotic (Doxycycline and Augmentin).  The doctor believes that there is a low grade bacterial infection running alongside the herpes virus.  He is not sure of the cause of the bacterial infection - but is validating that there very well could have been some sort of environmental trigger. I am also doing a steroid inhaler (Advair) 2 puffs twice a day. I also take a pain med when the pain is peaking.

All the environmental toxin screens that were run came back negative. No leptosporosis, no aspergillus, no mycoplasma, no valley fever, no hantavirus, etc.

Herpes simplex in the lungs has been linked to triggering pulmonary fibrosis. This is a progressive lung disease that causes the lung tissue to become hardened. Treatment is symptomatic, there is no cure and it is fatal. My mom had pulmonary fibrosis and there is a familial link to it as well. At this time I show no evidence of fibrosis but do have some tissue degradation at the bottom of my lungs. This tissue degradation has been present for at least 5 years.

I am still very ill. The doctor says that he thinks it will take several weeks still for me to get through this. I have been sick since 2/23/12. It is now 3/31/12.  He wants me to take it easy but get out and walk whenever possible so that I am using my lungs. He took me off supplemental oxygen because my bloodwork indicated that my oxygen saturation and blood gases were within normal range. I am very glad to be off the oxygen.

I will continue to post my progress. Today when I woke up two RV neighbors had gone. The 2011-12 Snowbird season is ending. I am sad to see them go and will miss my newfound friends. Since I was the one who re-published the Park directory this year I have all their out of town contact information so maybe for once I won't lose track of them. I think I need to start a spreadsheet and enter the contact information for these people we meet along the way. I am always glad when they are on Facebook because then I can keep track of them on a day to day basis.

One thing we wanted to do this winter and didn't get to was to provide some training classes for Facebook and basic computing. With our own health challenges it never seemed to work out. Walt has struggled all winter with severe pain from his neck and shoulder surgeries. It has been a challenge for him to keep up at work so extra stuff like a Facebook class never happened.  He was able to help several people on a one on one basis. We both think it is a priority to help Senior Citizens use their computers and internet in a safe way so we are always looking for opportunities to help people do that.

Copyright 2012 - Chardale Irvine.  You may not publish or reprint this article without permission of Chardale Irvine.  Thank you.

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