Had a brief moment where I remembered my month on high doses of prednisone…

Had a fleeting memory of my days on prednisone, and how I took on too much then had to pay the price πŸ™‚

I had no idea when I went on 50 MG of Prednisone that it would make me crazy.  It also gave me a limitless amount of energy.  In those first days, I was literally sleeping less than an hour a day, so they put me on Ambien, but this allowed me to sleep only an hour or two, so they put me on ultrastrong sleep medication that put me down 4.5 hours a night almost to the minute.  Otherwise, I was almost nuts with energy. Some examples:

  • I had the idea that I could write a novel on my iPhone.  So while the family played games over Christmas, I sat nearby (I couldn’t focus on the game) and typed several chapters of a book on my iPhone.
  • I decided to coach my son’s basketball team. The problem was, the neighborhood already had a team. So I worked with the rec league director to recruit and create a new team of 13 year olds.  I read a book on how to coach, created a website, wrote about the games for the local newspaper, and kept a daily blog no one read about the goals and practice plans. πŸ™‚
  • I volunteered to do marketing for my company.  I generated a newsletter, built a community forum, came up with an in-depth marketing plan and read books about marketing, all at night or on the weekends.  

These are just some examples.  The real problem was, when they started to taper off my meds, my energy went the complete opposite way – I had none.  Suddenly, I had no energy and was sleeping 12 hours a day and exhausted all the time, but still had to maintain all the things I’d volunteered for.  I gave up the novel, but was still coaching and writing for the paper and moonlighting as a marketing manager – it was hell.  πŸ™‚

Had a brief moment where I remembered my month on high doses of prednisone…

Just read my chart from March, I have a new speck in my lungs they want to monitor

I was able to log into my health records for the first time yesterday and noticed some things.  First, in my last scan with contrast (April 2016) they noticed “Lungs: There is a new groundglass opacity in the right apex – they suggested a follow up scan in 3 months to see whether it had grown, was stable or had resolved itself.  Second, my pulmonologist was concerned that my “LDL levels (bad cholesterol) are high.”  He wanted to know if I was being treated for hyperlipidemia and asked for a follow up appointment (which I scheduled for NOvember).  

I feel like my health had been on a pretty good run for a couple of years where I didn’t have to worry, so to speak.  Was I in pain and exhausted and have odd things like soaking night sweats?  Of course.  But my health didn’t seem in imminent danger.  The new spot on my lung plus high cholesterol are a stark reminder that I can’t take things for granted πŸ™‚

If I am honest with myself, I am a little worried, but only relatively speaking.  I’m not super worried, it is just on my mind.  But my therapist’s advice last year when I started back up with the night sweats and some of the coughing/chest pain again so was worried about relapse (which hasn’t happened, knock on wood), I can’t start worrying about things that haven’t happened yet. That was wonderful advice and I’ve learned to put those worries out of my mind until (and if) I am ever told by my doctor that he has concerns.

My GP wants me to see my rheumotologist again, but he was booked out for two months so I am going to a different one who has a stellar reputation. I’m looking forward to that and her thoughts.  I also love that she is female and non-white – I find that inspiring and more diversity is always good until such time as humans don’t see race/color/creed πŸ™‚

Just read my chart from March, I have a new speck in my lungs they want to monitor

It has been 5 years to the day since I saw the thoracic surgeon – I feel incredibly lucky

5 years ago this week my pulmonologist referred me to a thoracic surgeon for a lung biopsy after a high resolution ct scan (HRCT) without contrast showed all kinds of “ground glass” speckles in my lungs.  The specks were everywhere, and I remember the doctor scrolling up and down through the image and my lungs looking like a starry sky (where the stars were something that shouldn’t be there πŸ™‚ ) and thinking how strange it was to be looking at all those marks and realizing that was my lung.  

They got me into the surgeon two days later, and the surgeon (who was awesome) made a few comments that were memorable… One was that the complications risk were generally low but that I had very sick lungs so it was important to be aware there could be complications from the surgery, and the other was when we asked him if he had any educated guesses as to what I had he looked at the scan, shook his head and said “it could be anything.”  Five days later I had the surgery, and I still have the scars (they look like Walt’s scars in breaking bad, and I’m always surprised when I catch an image of them in the mirror at how noticable they are).  Those were scary times and I was looking at a very real possiblity of having something fatal.

Fast forward five years and I am remarkably — miraculously — healthy. I  still have lung disease and I now have autoimmune disease (which appeared later) and I will never be the same, but I am reasonably fit and look very healthy and – most importantly — am alive and not on an oxygen tank (50-50 chance of dying or having a crippling condition, which when its lungs can mean a lifetime of supplemental oxygen).    I was looking at the real possibility of lymphoma, untreatable lung disease or lung cancer and it turned out that my disease responded well to treatment (it is not curable, and was possibly treatable, and it turned it did respond to treatment).

In two words, I feel “incredibly lucky.”

It has been 5 years to the day since I saw the thoracic surgeon – I feel incredibly lucky

Lung Biopsy area is sore todayΒ 

The area where I had my lung biopsy five years ago hurts today.  It feels like a pulled muscle, except it is right in the area of the largest score and I was having some issues feeling like I was getting enough oxygen earlier this morning.  My guess is — once again — this will be gone within a day or two, but am documenting it here in case I need to know when it started.  I looked online to see if there are known complications after 5 years, but nothing stood out in my search.  Again, I am sure I am fine πŸ™‚  The last time I had a pain like this on this area was a few days after the surgery, when my chest and back swelled.  My poor wife panicked and rushed me to ER, but it is not an uncommon complication following lung biopsy where the lungs leak.  The oxygen goes into the tissues and there is a strange bubble wrap feeling to the tissue until the body reabsorbs the oxygen a few days later; it was cool enough that I had a few nurses stop by to push on the area to feel it, since it really did feel like bubble wrap to anyone pushing on my back and chest πŸ™‚

Lung Biopsy area is sore todayΒ