Hello Friends- (Sorry its long I hope you will still take a look)
I have been following for a few months now and it has been about my only sense of hope.I've wanted to share my story but haven't as of yet.1, because my story is not normal (in a disease that is already unique to the individual), and 2, more importantly, I haven't wanted to share my story because I wasn't prepared to entirely hear what else could be going on with me.Today I had an echo which added a bit of color so I may now be prepared for insight from this group.
Please bare with me as I share my story.
- I am in my mid 40's/male.
- I have 3 kids under 8, my middle child is special needs and is in a wheel chair and will always live mom and dad.
- I am a non-smoker, and have never smoked.
- A couple of months ago my wife bought a pulse ox just to monitor the kids during the winter.We get a lot of bugs coming through the house, especially with my special needs child.So I did what anyone would do and put it on my finger.It showed 93.... that was odd.
- Around this same time I had started to notice some odd behavior with my heart rate.Over the last 4 years I had gotten into endurance running.I have run 3 half marathons in that time and was working on preparing for a full.I had a foot injury so took 5 months of from running.When I started running again in the spring, i noticed my heart rate was in the 90-100 range while I would drive to work, and slowly throughout the day it would retreat to normal.My resting heart rate is 60, can get down to 50 while I sleep.I knew I was probably due to get tested for sleep apnea and thought this could be the issue.I was already scheduled for the sleep apnea test when I noticed the low spo2, told my dr, and he sent me for xray and CT.Both clean.He then sent me for a PFT thinking i may have pulmonary fibrosis.
- And to my shock, I blew a fev1/FVC ratio of .64.Alburterol had no effect.My FEV1 was 91% of predicted.In a panic I had a call with my primary and he said that people with COPD can live for many many many years and that he has a patient that had it for 50 years.This made feel better.I get scheduled to meet with pulmonology but it is a 2 month wait.I am still 3 weeks out from my appointment.In the mean time I am realizing that slow spo2 isn't the onlyl problem.When I walk up the stairs it can drop anywhere from 91 to 88%.Normally while just sitting during the day it is 94 or even 95.During the day the dips aren't as bad but if I am up walking around it is bouncing around maybe 92-94.A deep breathe and it jumps up to 96 or 97.First thing in the morning and in before bed it can drop to 90 or 89 with only a few steps. If I make sure to breathe (like i am exercising) when I go up the stairs or do something that is taxing I can minimize the dips.But it still dips a little.
- Upon further research, I come to understand that this is definitely not typical for stage 1 copd, especially with a FEV1 of over 90%.My DLCO is 117%/KCO 103%.Clean CT and Xray as noted (there were some scattered micronodules but non suspicious).
- In looking for answers of course all you usual suspects, PH, Heart Failure, etc.... I contacted my primary and said, my situtation is not acting like stage 1 copd, can we do an echo.Had the echo today.It was mostly good.Biggest concern is the right ventricle is at the upper limit of normal.Obviously not helping the concern for PH.The right ventricle systolic function is normal so that helps.Everything else was normal.
Adding to the puzzle:
- I do not have a chronic cough or phlegm suggestive of CB.It would be hard to say I have any CB symptoms.CT was clean for Emphysema and good DLCO.My f25-76 was right on the edge of the LLN suggesting that my small airways are involved.If I had to diagnosis myself I would say I have small airways disease which is or is not technically COPD depending on who you ask.
- I live at 5000 feet so elevation does make interpreting my spo2 levels more complicated.
- When I first found out I had low spo2 I then realized that I could use my garmin watch to track my spo2 while I slept.It was bad.I spend half my sleep less than 90.My average is usually 92% and some nights I will have dips were it stays around 85 for 45 minutes.The frustrating part is how long the process is to get fully tested for sleep apnea and provided pap therapy.Lots of steps and I haven't made it all the way.They at least provided me with a concentrator to use as a bridge at night until we start cpap.
- The good news after continuing to lower the amount I am only needing .5L to keep my levels above 90 for the entire night.It only take a drop of 02 to make a big difference.
- Some anecdotal items. 25 years ago I slept at high elevation while backpacking. Had a horrible headache the next morning.I realize now its the same headache that I've had occasionally over the last 8 years that I believe were sleep apnea related.And then yes, about 8 years ago I started noticing occasional headaches likely due to SA.They were always worse staying at higher elevations.
- About 14 years ago I had a surgery, after the surgery the nurse had a hard time getting my 02 back up.This is anecdotal but does make me curious on where my o2 levels have been through the years.I have been relatively healthy and havent had to have my sats check much.
- I do have a wheeze.I don't notice it unless I open my mouth wide and make an unnatural exhale, but it is there.The sound is like sucking the last few drops out of a straw.I believe its been there for many many years.... not sure if its always there or comes and goes.I never realized that was an actual problem... among other little things that I should have noticed through my life I guess.
- My dr put me on Spirivia.I bought an at home handheld device that measures my fev1.Its a bit inconsistent but my max scores are similar to what I got on my actual spirometry.(3.71).After starting Spiriva I could actually get up to 4.1.Then I noticed the wheeze.I also sensed my 02 dips were a little more varied and not in a good way.Now I am lucky if I can blow 3.6.I don't feel any different.This is very scary.I emailed my dr about maybe starting a round of steroids or adding a corticosteroid steroid but haven't heard back.This may be out of his paygrade but I have no one else to ask.
- So the bottom line i guess is.I am a 46 year old male with what looks to be stage 1 copd.Further more, i may be borderline for needing spo2 for exertion. For a never smoker, father of 3 young kids, one with special needs, I am heartbroken and scared.This means my disease is much further along than stage 1.Like all of us I worry about the progession.I've read that wheezing has a worst prognosis than non wheezing.That those who desat with exertion have a worst prognosis than those who don't.And of course seeing my fev1 decline in a matter of week is further frightening.
At this point I see two reasons causing my spo2 issues.
1.Damage to the small airways that is much worse than my spirometry suggests.Causing a massive ventilation mismatch.
2.Pulmonary hypertension.This one is odd though.Kind of a chicken or the egg situation.If my PH is causing my low spo2, then what caused me to get PH.Seems like in COPD, hypxoia causes PH.If I do have PH, its likely secondary PH and in the early stages.Clean CT, good DLCO, and echo that may only point to preliminary PH.Who knows how long I've had low spo2, but running 20-30 miles a week for the last 4 years, along with the sleep apnea, I am surprised my echo wasn't worse if I was doing this all in a hypoxic state.
Professional, I am the president of a local company.If i had a job that required anything beyond sitting at a desk most days I am afraid I would have to quit.I am worried about how long I can take care of my kids, especially my special needs child who requires a fair amount of lifting, carrying, bathing, etc.