Personal History: The Rebirth of Death. Ma’s Final Chapter

Odd title, I know.  I struggled with it.  I thought, maybe re-dead would be better.  Or, maybe redeath, after all there is a rebirth.  But then, that did not roll off my tongue with the eloquence I had hoped for.  It really is the rebirth of my Mother’s death.  You see, she died on January 13, 2010.  And then, she died all over again on September 21, 2018.

When Daddy died, I was standing at his bedside.  The moment he passed I wailed.  It came from deep inside me and scared me a little.  It was a cry- scream – it’s hard to describe.  I think I terrified the people who were there, but I could not stop.  Recently I read about the Irish women who would keen at funerals.  And I have attached the grief I had in that moment to the act of keening.  I needed to get all of my pain out of me, all of my sorrow away from my heart.  I did not keen for Ma.  I did not “overly” grieve for her.  There were things to do, people to take care of, plans to make.  And so, I compartmentalized my grief and worked through it.  I shed tears, yes.  But I did not really grieve.  Truthfully, I was too angry.

When Ma died in January of 2010, I was outraged.  I was indignant that she had been taken from me.  I was left with this gaping hole in my heart that, to this day, will never be filled.  Under all of the natural hurt that one suffers from the loss of a parent, there was a sub current of thought that there was something “not right” about my Ma’s death.  That feeling was shared by my Dad.  He went to the family attorney to ask him if he thought there was a possibility of “wrongful death” and was told by the attorney they would not pursue the case because they felt the firm would not profit enough from that lawsuit.  We lamented at length about doctors, lawyers and the injustices suffered at the hands of profits.  Profits over patients and people.  It was like sandpaper to both our asses.  And then we put it aside because we thought we had come to the end of what was possible.  (As a side note, I still see – everyday – the way that profits undermine the well being of people on several levels of life and it unnerves me to no end. I OFTEN say that our country suffers because there are profits in treatments that would be lost with cures.)

In January 2013 one of those commercials touting a lawsuit against some medical conglomerate caught my eye.  You know the kind.  It was one of those that happen like six months after the series of commercials that tout how that same particular product was gonna revolutionize your life miraculously. It was a lawsuit against the makers of Granuflo, the very compound used in Ma’s dialysis.  Suddenly, the fiery thoughts of justice for my Ma were rekindled and I immediately called for more information and then filed a claim.  Right now, as I type this, I have a hard time seeing/typing the word Granuflo.  The word physically stabs at my heart.  I am glad it is not a common household word that would follow me until the end of my time on this planet.  To be honest, I would go mad if that were the case.

So, some insight into what transpired.  Due to the various ailments my Mother suffered, the need for dialysis became apparent.  For those of you who are unfamiliar with the process of dialysis, below is an infographic that simplifies the terms.  I am, by no means, an expert on dialysis or what goes into the procedure.  I have, however, spent a lot of time reading about it since Ma’s death.

The dialysate in the graphic (in the lower right hand corner) was Ma’s issue.  From the first treatment she seemed to give up all hope of surviving.  She seemed to be getting worse, not better.  She was exhausted.  This was not her miracle cure that would revolutionize her health.  One of the compounds used by Fresenius, the provider of her treatments, was GranuFlo.  This is a type of dialysate manufactured by Fresenius Medical Care who is the world’s largest provider of kidney dialysis services and products.  It was used in thousands of dialysis centers to treat patients with kidney disease/failure.

GranuFlo and Naturalyte (another dialysis product manufactured by Fresenius Medical Care) are liquid acid compounds used during the hemodialysis procedure in several patients who had chronic or acute renal failure. Both compounds were recalled due to a discovered significant risk for sudden cardiac arrest and other cardiovascular problems. Lawyers alleged in litigation that the manufacturer failed to warn doctors of the potential risks to patients prior to use. And then the explosive details of how the FDA made allegations that the manufacturer was aware of the risks of cardiac arrest associated with the use of the bicarbonate mixtures and failed to warn dialysis treatment centers about the risks.

Profits over patients/people.

Roughly 3200 days passed from the day Ma died as a result of a heart attack at the dialysis center to the day the lawyers called to discuss the findings of a judge who decided Granuflo’s maker played a part in that heart attack.  My Ma, as flawed as her health was, might still be alive today (or at most could have been alive long enough for me to say goodbye) had it not been for the heart attack she suffered while at that dialysis center where they administered her treatment with the use of their chemicals which their company’s CEO knew had potential risks.  Almost nine years it took for the slow wheels of justice to turn. And, sometimes those wheels got caught up in mud and muck and I had to get behind the cart and push.  I went to various doctors to pull medical records, taking Daddy along with me so he could feel included in the battle.  On more than one occasion I had serious conversations with lawyers to explain to them that the only reason Ma did not die on the same day as the heart attack was because there were two EMTs dropping off a dialysis patient when Ma collapsed.  Had they not been there she would have died that very day.  They were able to do life saving measures on the way to the hospital, where she was then transferred to a more equipped hospital.

Daddy, nor I, thought that there would be a verdict.  The lawyers always seemed to give the bleakest of updates regarding the possibility.  And then the call came and as the lawyer’s words passed my ear, my brain processed the ramifications.  I cried.  I cried for the justice my Ma finally received.  I cried that Daddy did not live long enough to see that justice served.  I cried because I miss them both and feel horribly alone in their absence.  I ran through all of the scenarios of what could have been, the “maybe she would still be alive” thoughts.  All of the maybes made me feel as if I had lost her all over again but on a different level.  As if that gaping hole in my heart suddenly had an echo of pain returning – the same, yet different.

That was the rebirth of her death.  Going through all of the emotions again (and still).  I have cried so much since hearing the news.  I have had a heavy heart.  I am mourning as if for the first time.  And it is suffocating on every level.  Then there is the underlying current of rage.  It runs just beneath the pain of sadness.  It festers with the realization that “justice has been served” is a lie.  Because I am a realist, I know that company had insurance and that the people who passed a memo regarding the potential risks are probably still making a six figure salary and that this was just a blip in their financial portfolio.  For them it is probably a lesson learned that will allow them to be stronger for the next defense of the next profit against the next sets of collateral damage (FAMILIES) left in their wake.

I was not able to say goodbye to Ma at the end (where she heard and understood my words). It is the one thing in my life that I will regret until my end. She was a difficult woman.  I am who I am because of (and sometimes despite of) her.  She made herself hard to love.  But she gave her love freely.  She fiercely loved my kids, Daddy and her Sunflower. Of all the things in my life, I am the most confident in that.  The bits and bobs of Beck’s personality shine through all of us.  And we tease each other when her traits peek through.

I tried to look up Fresnius yesterday.  To see how much of a hit to their profits they took as a result of the Granuflo case.  They are doing well, actually.  In the quick scan of an article I see that they are looking to put in a bid to be bought by (or maybe TO buy) another company.  I clicked off of the market watch as quickly as I had opened it.  Once everything has settled I will reach out to the lawyers to ask if there is any public data on the people who were adversely affected by this product (numbers, demographics).  I know I am not alone in my grief.  I know there are others.  And eventually, when I can write with eyes clear of tears, I will put words to paper and then mail those words to the CEO of Fresnius along with a picture of my Ma.  I will pick a photo that has scornful eyes.  I will strive to be eloquent.  I will describe my Ma’s virtues (and some of her vices), her love of family.  I will outline a few of the things she has missed since she passed.  And then I will tell him that her life was the price his company was willing to pay in order to make a few coins.  I am confident it will not matter.  The act of writing a letter will make me feel better, that is what matters to me.

On the anniversary of my Ma’s death (Jan 13), I will raise a Tom Collins in her honor. I will play Who Let The Dogs Out and think of all the misadventures my Ma had.  I will cast my eyes upward and tell her I did the best I could.

Profits over people.  It will always burn my ass.