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 🙂

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 🙂

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

Five years ago this morning I had my lung biospy – the most painful moment was saying goodbye to wife M, knowing she’d have to worry…

Five years ago this morning I went in for my lung biopsy.  What I remember most about that experience were the final moments before surgery, which were the most painful for me during the entire experience.  Why?  I was worried about my wife…  

For the previous two hours, I’d been in great hands.  My wife drove me to the hospital, the nurses gave me comfortable pajamas and a robe, and everyone who came to see me was very kind and treated me with dignity. When it was nearly time for the surgery, they had me slip into a rolling bed with warm sheets, which were quite cozy.  The surgeon paid me a final visit to ask how I was doing, and I joked that it was most important that *he* was doing great, since he was the one doing the operation 🙂  Then it was time to wheel me away to the operating room and I had to say goodbye to WIfe M.  Five years later, that is still a painful memory for me…

I smiled and kissed her and reassured her that I would be fine and to take care of herself, but I had to fight very hard to keep my composure and although I was smiling for a split second as she kissed me I was worried I might lose it since I was so worried about her.  I myself was going to be in a fine place, since I knew from previous surgeries that the next five hours would literally evaporate for me and that literally the next thing I knew I would be in recovery with kind and caring nurses attending to me.  In other words, I’d be free from pain and worry.  

But my wife was going to have to spend five excruciating hours wondering how the surgery was going, if I was okay.  I didn’t want her to go through that, I couldn’t imagine having to go through that. Later, that evening, while the nurses were caring for me, my wife would have to go home and cook dinner for the kids and keep the household running.  And all the time — even if the surgery went well, which it did — we still had to worry about the results of the surgery: did I have something fatal?  

Everything turned out about as well as can be hoped, but I’m glad that moment of saying goodbye to my wife is over.

Five years ago this morning I had my lung biospy – the most painful moment was saying goodbye to wife M, knowing she’d have to worry…

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 🙂 ) 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

It has been 1208 days since I was told I’d survive – and I grateful for each one of them.

December 14, 2011 my pulmonologist was almost beaming with the news – my lungs were improving.  “It was 50-50 you’d improve,” he said.  There were some very difficult times in the months ahead – the post-prednisone exhaustion, post illness shock, medical bills, the realization I also had autoimmund disease, and the adjusting to the new less energetic me, but I am sooooo grateful, and I remember that every day.  Yesterday, walking in the warm sunny morning to work, I was really struck — for the millionth time — by how lucky I feel, and broke out into a happy silly grin while all about me people wondered if they were passing a mad man 🙂 

It has been 1208 days since I was told I’d survive – and I grateful for each one of them.

Who would think missing the bus was a good thing?

Thursday night after a 12-hour day at the office.  The bus was one block ahead, boarding the last of the passengers. I knew that if I broke into a dead sprint I would catch it. Instead, I let it go. The last passenger stepped on, the hazards clicked off, and bus rolled away. Who’d think that was a good thing?  I did.

First, I was proud of myself for not running after the bus (doctor’s orders).

Second, I used my the lessons/tools I was given in post-illness therapy – that is, I didn’t let missing the bus get me into the “if I hadn’t gotten lung disease I would’ve caught that bus” funk I would’ve felt in those first six months after beating the disease. Instead, I just admired the twilight for 15 minutes until the next bus arrived…

I love that therapy has taught me to appreciate what I have (miraculously stable health, a beautifull twilight evening) rather than what I lost (ability to sprint after a bus).  That is the best part of my post illness therapy — a year later I am still able to use the tools I learned.

Who would think missing the bus was a good thing?

Napping every day again

For two years after beating lung disease I napped every day (that stopped a year ago). But I am napping every say again, if not during the day then in the evening when I get home from work. It’s not really a choice – I just feel heavy eyed and sleepy until I sleep for an hour or so. I feel awful when I Wake for 30 minutes or so.

Not sure why – fatigue? Stress? Lungs? Hopefully a short term, passing thing! These short term health blips appear from time to time since my diagnosis. Funny to have these things and no one who interacts with me would know.

Napping every day again