June 29: Temple appointment +

There is a reason I delayed posting about my doctor's appointment almost 3 weeks ago: still haven't completed the evaluation.  But here is the news so far....

Didn't get taken back until almost 2 hours after the appointment time.  Justification for buying the Kindle!  Had a regular echo first.

Dr. Forfia came in with a Fellow, having already seen my echo that day as well as a review of my medical records.  He asked me for my version (it may come as a surprise, but with using medical terms the history can actually be compacted into about 2 minutes), listening intently.  He then gave his impression (summarized):

'Under 'normal' circumstances we would send you in for a re-do of your mechanical valve, but clearly that is not an option since, as you say and the records show, that when they replaced the valve they ran into your physiology being so abnormal and couldn't put in a larger size.  Since there is no chance of a surgical revision, there is only one treatment that will fix your condition and resolve your symptoms: you need a heart transplant.'

It never gets easier to hear, but there are benefits to multiple medical evaluations and having cardiology as my specialty: not being surprised by statements like this.  You already know my response:   'That's not happening.'

You don't need the blow by blow of the next 30+ minutes, although I will tell you that Dr Forfia  manage to fit in at least 5 more times that 'the best treatment would be a transplant', or, as he referred to it 'we could just drop a new heart in there and be done with it.'  Really?  Just 'drop it in there'?  Let me tell you this:  no one who has ever actually HAD heart surgery will use that phrase.  I totally understand that if you compare a human body to a car that the heart is comparable to the engine, so using the vernacular is appropriate.  But it's my body, and it's tired and scarred and hurting from being ripped and torn apart four times (including thoracotomy) and the risk of something going wrong would be much, much higher in circumstances of multiple chest surgeries with extensive internal scar tissue formation.  And now an autoimmune disorder, the treatments for which all slow healing and increase susceptibility of infection, not to mention increased stroke risk.  It's just asking for trouble.  I'd rather stick with the known evil than create another much larger one.

So, with transplant not an option he says that he wants to increase my diuretics and that I must lose weight.  He said that very nicely, and with an immediate statement that my weight was not the main issue, but that all that could be done now would be small things that would hopefully add up to an improvement in my functioning.  This makes perfect sense. I certainly have understandable reasons for having my weight increase: multiple foot fractures, menopause, prednisone and an inability to exercise, all of which he acknowledged.  I also pointed out that my current diet is gluten free, no nightshades vegetarian, so it's not like I'm sucking down tons of fat and sugar.  But the fact is that I'm 25 pounds heavier since the 3rd surgery, and I was supposed to lose weight then.  While I can certainly justify why my weight has gone up, it doesn't change the fact that less body mass will mean less strain on my heart. 

He also wants a pulmonary stress test, entailing of detailed measurements of oxygen and carbon dioxide exchange while on the treadmill.  He wanted the test before  making any changes, to see what my current functioning is.  While that is also understandable he didn't check with the department before making that plan.  Turns out they only do the test 4 times a week, and my appointment isn't until July 11th, a full month after my appointment with him. 

So after all that fun, and hearing several more renditions of the 'All You Need is a Heart Transplant' song, the next day was dealing with the private insurance company.  My monthly check was $381 short, with a note that I hadn't given them my Social Security paperwork.  My messages to the claims manager, LV, were sickeningly sweet, along the lines of 'I'm sure there is some little mistake and it will be a simple fix'.  It took four attempts over a couple days before she took my call.  The paperwork issue was quickly resolved, but there was a new medical form as well.

I explained to LV that I hadn't taken the form to  my regular cardiologist since I was getting another evaluation and more  testing from Dr. Forfia, which would, of course, be new information backing up my claim in addition to the pulmonary rehab report.   To get across the severity of my medical issues (since they continue to want proof every 2 months, and it's not going to change in that time) I told her that my heart condition was severe enough that a transplant was the only cure, but that I had refused.  Her response?  'Oh, so you're just giving up then?', said in a tone of judgmental sarcasm.

I  really wanted to do a repeat performance of my f*%king tirade of January, but you can't do that to the person who gives you your monthly income.  Instead, my anger,  frustration and terror about the whole situation bubbled to the surface and I burst into tears, which as you know is not something I like to do at all, much less for someone to witness.  Through my tears, and gasping for breath every few words, I did explain the reason for my decision, pointing out that unless she had had three open heart surgeries that she had no concept of what the contemplation of a fourth heart surgery meant.  At some point she seemed to realize she had crossed a line.

She seemed to take pity on me, and told me that at the 2 year mark of the disability that her company did an evaluation to see if there is ANY job that the person collecting can do, taking into account their training and education, and if there is any work than the disability payments stop.  It doesn't matter that I wouldn't be able to work enough hours to earn enough to live on.  It doesn't take into account the energy needed to get ready and get to a job, just if you are capable of doing something, anything.  It's an insurance company: their goal is to take money in and not give it out.  She as good as told me that in about 16 months this income would be over.

This is totally separate, BTW, from getting SSD, so at least there's that.  Appeal still pending.

It has occurred to me that maybe I should say yes and go through the transplant evaluation process, which I'm 90% sure I wouldn't be approved for, just to put it to rest.  Just get it off the damn table so I can stop  having to justify my decision and have something indisputably final on all future medical evaluations.  I will take this up with Dr. Forfia at the next appointment. 

So the next medical issue will be the pulmonary stress test, not sure when I'd get the results from that.

A long 'musing' post is rattling around in my head, but I'll let you digest this one first.

Thanks for checking in,  Laurie

June 6: Cemetery shopping day!!

One of those things everyone puts off, but really, it's not bad when you do it without worrying about a loved one just having died.  I highly recommend this more relaxed method.  The weather was gorgeous, perfect for  tromping around a cemetery.  This should have been done years ago, but it wasn't, and that (of course) means there is a (somewhat long) story involved.  (Note:  I edited down on June 7, so it's a bit shorter for you now!)

Everyone loves my mother, who is very sweet and very nice. She wants to believe, and wants others to see her, as wonderfully easygoing and low maintenance.  (Remember that!)  She likes everyone to be happy, have no friction surrounding her.  She accomplishes this by not expressing her opinion on controversial issues, not telling people what she really thinks of them and by not dealing with anything unpleasant.  I, obviously, am nothing like my mother. 

But in life there are unpleasant things you can't avoid.  An important category is, of  course, planning for your demise.  My mother knows this is inevitable, but it doesn't mean she wants to do anything about it.  She's 84 and doesn't have a current will, despite my nagging for the last ten years.  (Seriously--10 YEARS!)

It's just the two of us as far as the burial is concerned.  There is a family plot up in NY, but several years ago she announced that she didn't want to be buried there.  While it wouldn't have been my choice either it seemed the easiest: the plots would be free of cost, and it's roomy with three spots left.  Nothing like having some elbow room between your corpse and your dead relatives.  But Mom announced that it was 'too far away' from the standpoint of a Baha'i, which has been her faith for over 25 years.  The Baha'i faith says you have to be buried within an hour of where you die; not where you live, but where you die.  They believe the soul is confused if the recently deceased body is too far away.  This doesn't make sense to me, especially since I believe I've seen souls around the recently dead departing with no problems, and if you know anything about my time as a paramedic you know I speak from a lot of experience.  But hey, to each his own. 

So, here's Mom's list:  within an hour travel by car (or something, she got vague again), in a plain pine (or other hard wood) coffin which has no nails, her body covered with a white shroud (in cotton or silk, no linen), facing west, body not embalmed and graveside service.  There is a special ring you have to be buried with that says you are returning to God (shouldn't he already know that?) and special prayers that need to be recited at the grave by other Baha'i followers (there are no ministers in her faith).  And it needs to be somewhere pretty, because the burial site is supposed to be 'surrounded by flowers and nature'.   

What do I want? I'm an Earth/Universe spiritual gal, and I want what's called a green burial:  no embalming, no hermetically sealed coffin, no cremation (I hate the heat).  You are wrapped in a shroud, with or without a coffin which will disintegrate, plopped in the ground and here's the best part: they plant a tree over you.  As your body decomposes it fertilizes the tree.  So, I die, my soul goes up to the ether (without any confusion), and my body becomes part of a tree.  Awesome!

Problem is there are very few green burial places within an hour distance;  apparently the regulations are pretty restrictive.  I call a few local cemeteries and find out there is no body plopping allowed in their graves, and definitely no corpse fertilization of trees.  They recommend a coffin, but at the minimum are required to bury you surrounded in a cement liner to prevent bodies from popping up willy-nilly when the ground shifts (remember New Orleans).  I report all this to Mom, who says she is 'horrified' at the thought of being entombed in cement.  Well, at least we agree on that.

Find West Laurel Hill Cemetery, which is 45 minutes away from Doylestown and has a small area dedicated to green burials.  Call and talk with Lauren, who is incredibly knowledgeable, even about Baha'i burials, actually quoting passages from the scripture. So, make an appointment, pick up Mom and head down.  (I know, that was a lot of stuff in between the start to the main part, but you needed the set-up.)

Lauren is adorable, an incredibly perky 30-ish who is totally devoted to putting the fun in funerals.  (Really, she said that!)  She leads us out to the suitably funeral-esque Lincoln town car, and off we go to the green burial section.  The place is gorgeous, and large--almost 200  acres.   Loads of 125+ year old trees everywhere, huge oaks, maples and beeches, beautiful plantings, flowering shrubs and groupings of  trees.  

We get to the green burial site and then Lauren really dazzles.  She's spewing out Baha'i burial customs and details left and right, clearly this gal has done her homework.  Here's the pinnacle:  my mother asks about facing west, Lauren whips out her cell phone and comes up with not just a compass, but a Baha'i compass that shows you which direction the body should face from anywhere in the world.  Apparently there's an app for that.  Unbelievable.

There is a pastoral meadow over the 30+ people currently in the green section, surrounded on three sides by trees, with the planting over their graves about to start.  There are some fresher mounds without any plantings yet, neatly placed in rows.  She shows us the updated plans put together by an arborist and landscape architect detailing the eventual forest that will come to be as the bodies fertilize beneath the ground.  The area is already lovely, with lots of birds singing, loads of flowers and magnificent old trees; surroundings I'd be happy to decompose in.

We  proceed back to the office to look at coffins and such.  As she drives us around Lauren points out several highlights, the famous and/or wealthy, gives interesting tid-bits on people and burial stories.  Really terrific cemetery commentary, and that can be difficult to pull off.  Mom points to several trees and shrubs she might like to have planted over her, she is very taken with a green Japanese maple that takes a full 100 years to completely mature.  I'm thinking of something a little faster growing. 

Back in the office we go to the coffin sample room.  Unlike on TV, it's just the corners of the different styles of caskets, depriving me of the opportunity to sneak a quick nap.  As promised, there is a plain pine box which meets Baha'i standards, and special shrouds made in the specified white silk or cotton (remember, linen is not acceptable).  They are not, Lauren explains, the same kind as I would need, as the more enveloping shrouds are put on people who aren't placed in coffins.  I stifle the urge to make a wisecrack, but have a scene flit through my head of a solemn service at a graveside interrupted by body parts sliding out at an inopportune moment.   (Now there's a reason for a soul to stick around--what a hoot!)

There is a binder with samples of shroud fabrics., including a sample of raw white silk, which Mom wants to see; the description even specifies that it is appropriate for Baha'i funerals.  It's truly impressive how they can cater to so many faiths.  I'm attracted to a raw silk with a medium gray background and small multi-color stripes, my rationale being if you're wrapped in horizontal stripes it will make your corpse look thinner.  Lauren thought that was funny, Mom not so much.

Next we move to the stones and engraving, which will be on a monument wall with the names in correlating rows, but no gravestones.  Mom's a little put out that there isn't a grave marker, but admits it wouldn't work with the tree.  She also wants to see the type set of the engravings, as well as the granite, which is being re-purposed from curbs in Philadelphia; it is dark & light gray with sparkles through it--really lovely.  Mom approves of the granite as well as the Times New Roman-style script that will be used for all names on the memorial wall.

Prices are discussed, Lauren urges us to talk about it and not make any decisions lightly, but also says the price is being increased more per grave soon, so that gives a little urgency.  (Yes, that is a standard sales pitch, but she even offered to call us before the increase went into effect!)

After lunch and some errands we are back at Mom's.  I go over all the paperwork with her, the information gathered from other phone calls, admit this place is more expensive but that it includes everything and they are, clearly, very up on Baha'i burial practices, as well as green burials.

I say to Mom:  'So, what do you think?  Outside of my input, does this place work for you? Meet all the requirements that are important to you? Would you be satisfied being buried here?'

My mother smiles, gives a breezy wave of her hand and says with complete and utter seriousness:  "Well, you know, I'd be fine with anywhere."


Thanks for checking in again,   Laurie

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