RECAP OF AN EMAIL TO A FRIEND – yes, I’m too lazy to type this twice.
I never told you all this ? Wow, I’m surprised as I thought you knew all this stuff. Ok, here’s the brief version.
- born in Sep 1960, by March 1961, it was clear that my ribs were deformed, curling in to crowd my lungs and heart. I’d been sick from 3 months onward with congestion / pneumonia as the lungs were being crowded by the ribs trying to pierce them and the heart, so I had my first surgery at 6 months (a pectus excavatum) where they went in to break and reset the ribs to give the lungs room to grow.
- due to the damage to the lungs, in and out of the hospital a lot with pneumonia. Chicken pox and double pneumonia almost killed me when I was 2 or 3. (I’ve had the last rites a couple of times)
- crossed eye surgery at 2-1/2 or 3. Eyes were good until I strained them in 5th or 6th grade reading 1-2 books a day.
- keloid skin on my chest caused the ribs to start curling in toward the lungs again when I was 5 (I was tall for my age, and was growing fast). They went in and removed as much of the scarred skin as they couldd, and broke my ribs again, doing another pectus excavatum, and I was in a chest / body cast for about 6 months as they tried to get my chest to form properly.
- at the same time as the 2nd chest surgery, they also operated on my bladder as I had zero muscle control so they tightened me up. (Baby Sis and Cuz had that same surgery, so it’s a defect that appears to run in the family). I still don’t have a lot of warning if I need to pee, but it’s better than it was.
- I had the final surgery on my chest at 9, as the keloids reformed, I was still growing faster than other kids my age, and the bouts of pneumonia kept occurring. I had probably 20 cases of pneumonia by the time I was 9 years old. The asthma was really bad due to the scarred lungs, and my refusal to take my medicines. Being hyperactive didn’t help, as I get really sick running around, and ADHD didn’t let me sit still for very long.
Let’s see… Then comes the time of my parents’ divorce. Lots of bouts of pneumonia, and I was supposed to have a jaw redesign surgery (I got braces and a pallet breaker instead). Then, they wanted to try and fix my chest again, and I said “no”. I’d had enough.
I lived a lot longer than anyone expected, and I credit two things:
1) my extreme reluctance to use inhalers (long story), and
2) moving to California – a much drier climate.
My doc’s been wonderful, as we know I’m not the best patient. He told me in 1996 that I was going to die if I didn’t do exactly what he said, and I must be doing something right as I’m still here.
My refusal to use inhalers has helped to keep my war chest of options open, and my biofeedback, relaxation and deep breathing techniques have helped, too.
So, I’ve been talking to the doc about a new option – a lung ablation – since about 2005. He said he’d let me know if the technique was right for me.
In 2009, when I went to China, I was sick as a dog due to the sucky air quality. I was coughing up blood and crud while I was there, and when we ran the breathing tests once I’d gotten home, I’d done permanent (new) damage to my lungs and I lost 4 more points of lung capacity.
From then until now, I’ve had less stamina, and as I’ve been dealing with menopause and hormone changes, my energy has dropped quite noticeably.
The doc has been telling me it’s time to consider a lung transplant, and I am not willing to do so. I decided no more surgeries as a kid, and given the cost, high likelihood of failure and complications, I haven’t changed my mind.
The test the doc ran on Dec 19th (the day I left for Australia) wasn’t good, and I again refused to consider a lung transplant:
Whether you look at my FVC or FEV1 from December, I’m in Stage 3 if the COPD gold standard, which is severe.
He pushed the Anoro Ellipta over the counter to me on the 19th, and I put off taking it until March. I took it for a month, under protest, and it made my breathing better, but it also caused more problems with my eyes, rashes, bone pain / arthritis, etc.
When we met in April, he refused to deal with my end of life questions and again pushed the lung transplant, so we were at a stalemate as I have 3-5 good years of life left if things go as normal during the declining phase of this disease.
Since the survival rate after a lung transplant is also 3-5 years, it makes zero sense for me to take the risk and run up a bill taking drastic measures.
After the 2 additional car accidents in May, I wrote him and put down my foot about the December and April test results as nothing was making my exhaustion go away. And, the side effects were killing me.
As you can see, the medicine helps a little for imoroving my breathing, (April test results) but it doesn’t bring it better than the disability level while also messing with my eyes and my right hand.
So, we fast forward to August and he’s agreed that it’s time to go on disability. Especially since I can’t stay awake, the medicines are giving me / increasing my diabetes risk, etc.
He then agreed I could stop taking the Anoro but wanted me to try the Striverdi Respimat.
Within days of taking it, I was having heart issues. If you don’t know, heart issues are a normal complication of COPD. So, having heart issues was not an acceptable solution.
While I did call the nurse urgent care line when it was really bad (Aug 29th), I decided to not run up additional medical expenses (since I’ve yet to pay off the $5,800 Stanford wants for my CT scan), and since I don’t want anything other than palliative care.
I stopped taking the Striverdi with the Doc’s blessing as of 9/7, and I’m still in pain on my right side and through the inner (crook) of my right arm, which means, like the arthritis in my right hand, this may be permanent damage.
But, rather than run up additional test expenses, I will wait to see what tests Disability orders to verify my condition (in the hope that insurance covers it vs. the b.s. “experimental” they said on the CT scan) and we’ll see what’s going on with my heart at that time.
The CT scan confirmed the COPD, and also told me I have bone density issues in my back (no surprise), and benign tumors in my belly (yay, my being fat *ISN’T* just a weight issue). Yay !
Since I’ve been off the newer, more powerful medicines, I have a little more energy, but it’s harder for me to get through the Y swim classes without the xopenex inhaler (which causes jitters and stomache aches), and I still need a daily nap.
Everything’s ok otherwise.
Do you still have questions? This ended up much longer than anticipated.