June 4: Pulmonary Rehab, session #1

The pulmonologist, Dr. K, has been suggesting pulm rehab since he first saw me for the sleep  apnea.  I kept thinking if I could just walk more it wouldn't be necessary, but with the pending eval for  the PHTN (pulmonary hypertension) next week it was clearly a good idea to get more objective info. They didn't do any exercise with the cardiac cath in December, reasoning that since my pulmonary pressures were elevated sedated, at rest, that clearly they would worsen with increased demand (from activity).  That's all well and good, but it doesn't show just how much worse I get with minimal activity. 

Did PFTs (pulmonary function tests) and, of course, they weren't bad at all, because it was at rest.  There were changes, clearly compensatory, but it wasn't bad enough to get approved for the rehab.  But  there were the cath results, so after a few weeks of nagging my insurance company T, the pulm rehab nurse, finally got approved. 

Show up  today, more paperwork, boring video which we chatted through, subjective assessments of  current quality of life, etc.  BP 106/60, 98% resting pulse ox (PO) which gives a general idea of how much oxygen is circulating in your blood by shooting a beam through your finger, which magically figures out the level.  Now it's time to see what happens with exertion.

T gets me on this fancy machine that your arms move back and forth while your feet both pedal and push.  I lasted a measly 6 minutes and was tired and mildly out of breath.  My pulse ox, however, was a near normal  96-97%, and I know that it has to go down to 92% for anyone to be impressed. 

T says reassuringly 'It'll go down on the treadmill.'

We wend our way around the other patients, all in their 70s and 80s, who are shooting me looks that shout out 'What the hell is that healthy looking young person doing here?'

Treadmill, set at 1.3 mph and 0% incline, and I think to myself that my mother goes faster than this with her walker.  PO stubbornly stays 96-97%.

Increase to 1.5, then 2.0 mph.  Increase incline to 2 degrees.  PO varies from 94-97%.

T says brightly, 'Well, it's going down a little....' 

I notice if I'm talking that it goes down more, because obviously you have to breath to talk and it increases demand.  Finally, my ability to jabber comes in handy.  I explain that my belief is that my strong heart muscle and otherwise healthy lungs are so good at compensating that it gives a false impression, but I really am symptomatic, with the fatigue and getting SOB (short of breath) so quickly.  Several minutes pass.

PO 93-96%.  T increases the incline to a paltry 2.5%.  More minutes pass.

PO briefly drops to 92%, then bounces back to  96% seconds later.  But I'm now clearly out of breath, speaking only a few syllables at a time, and then not talking at all.  But, frustratingly, the PO numbers are not reflecting this.  Observing that I'm out of  breath isn't  going to impress anyone, they want the objective evidence of numbers.

T says 'You ready to stop?' as her hand moves towards the button, because I'm getting more and more SOB now.

'No', I replied, 'not until......I've proved.......I'm not.......exaggerating.......my symptoms.'

PO stays at an annoyingly perky 96%, occasionally dropping to  94%.  I, however, am clearly having problems breathing. Couple more minutes go by.

T says again 'Ready to stop?'  I've now been walking for  about 14 mins, but all  at this very low level stuff, and I know that all a 94-96%  is going to win me is a diagnosis of 'whiner'. 

'Nope......increase.......the incline.'

T doesn't  look happy, but she understands. (Also I was on a cardiac monitor this whole time; perfectly safe.)  She increases it to  a whopping 3  degrees of incline which, frankly, is still almost nothing., keeps it at 2 mph.

'Well,' she says, 'we always use the lowest number, and you did get down to 92% briefly.'  She's sympathetic, because she can see how SOB  I am. 

'Not.......bad.......enough.'  I reply, 'keep......going.'

At 15:30 minutes the PO suddenly drops to 92%, then 89%, then 84%.  The machine starts alarming.  T is clearly surprised, because the numbers should go down gradually, not 13 points in 5 seconds. She checks to be sure the monitor is on my finger, asks if I'm holding my breath, shakes the monitor a bit.  Right then, just to prove how badly things are going inside me, the PO obligingly drops to 83%--and stays there. T  reaches over and hits the treadmill to 0% and 1 mph.  It all happened in the space of about 30 seconds. 

I'm grinning, as much as one can while gasping for air with an oxygen saturation of  83%.

'THAT......proved......my........point!' I manage to get out, incredibly proud of proving that really, really, really, really, I  am not bullshitting anyone.

In about a minute after the treadmill was put to the 0% crawl the PO is back up to 95-97%, although the heart rate remains pretty high.  T is still shaking her head and muttering 'It's not supposed to drop that fast.  I don't think I've ever seen it drop that quickly on a treadmill.'

My wonderful little (literally) heart, with it's strong muscle, was beating as fast as it  could, desperately trying to compensate for the blood not  going through the tiny mitral opening as quickly as needed by increasing the heart rate. My lungs were trying to supply enough oxygen, but can't keep up, because the pressure from the blood not going through the mitral opening has backed up pressure into the lungs, interfering with oxygen exchange and putting a lot of  stress on the vessels in the lungs.

I have significant/severe exercise induced PHTN due to functionally severe mitral stenosis secondary to a too-small prosthetic mechanical valve which can not be made larger due  to my abnormal anatomy.  Ironically, this is similar to the pathophysiology before the 3rd heart surgery, although the narrow mitral opening then was due to 'exuberant' scar tissue formation.  What could be fixed was, the opening could not be enlarged, so the years of  compensating are now taking their toll.

It has been proven, again, that while fine at rest my issue is with minimal exertion, because 3% incline at 2 mph is nothing.  Don't misunderstand:  I'm not happy about this.  I'm not happy that after 4 critical major surgeries the same problem is happening.  I'm not happy that there is no way to 'fix' this, that the best to be hoped for is something that can keep me from continuing to worsen.  Since I do OK at rest I doubt the PHTN doctor next week will want to risk any side effects with special medications.  If this damn autoimmune thing will go into remission and I can stop taking the prednisone and methotrexate maybe I'll be able to do a little more.  The prednisone effects me in many ways, not the least of which is retaining fluid, which makes the whole heart thing worse.

The happiness comes from relief that I'm not exaggerating--even to myself.  It doesn't matter how 'good' everyone thinks I look, I do deserve to feel like crap.    It was necessary for me to stop working, I do deserve disability--regardless of what SSD says.   I've said this before: if you understand how much I struggle and how hard it is for me to function, then I don't complain, because I don't have to prove anything, once you understand. 

I can now go back to nobly suffering in (relative) quiet.  But hey, you come here to read the dirty stuff, so this doesn't count!

Thanks for checking in,   Laurie