To Love a Rose: An Ethiopian Adoption Journal

Monday, August 6, 2012

Pictures from the Cancer Battlefield, Part 15: Adventures in respiratory failure, TTP, plasmaphereis, and dialysis (and VICTORY OVER THEM ALL!)

As I looked back on this blog, I realized that I have written very little lately; and even worse, I've written NO updates on mom's cancer treatment journey since her transplant on May 24th and 25th - oooops!

When I think about having to sum up everything that's occurred since that time, my mind is completely overwhelmed.  In short, my mom has encountered EVERY set-back that can possibly occur after a stem cell transplant.  From respiratory failure to TTP to kidney failure and GvHD - mom's experienced it all.

Instead of attempting to put all of these experiences into words, I think I will let the pictures do what they do best: the talking.

Mom hooked up to respiratory machines that helped keep her breathing when the fluid build up made it too difficult for her body to keep up.

Not long after mom's transplant, we started to notice that she was retaining fluid - A LOT of fluid.  In the span of about a week or so, she put on 30+ pounds of fluid.  As you might guess, this is extremely hard on the organs, especially the kidneys whose job it is to flush said fluid out of the body.  It was just too much for her kidneys.  They could not keep up, and the fluid continued to pile on.

Within the span of 12-24 hours, mom went into respiratory distress and respiratory failure.  The fluid build-up around her lungs was just too much; she couldn't breathe.  She was hooked to machines to keep her breathing (see picture above) and was very groggy.  I'm sure she remembers nothing from this time, and I think I only spoke to her once.  Her body was in too much distress to keep her awake for frivolous things like talking.

We discovered that her new stem cells (from her donor), had gone into work overload once inside her body.  In fact, they worked a little "too well", if you can believe it.  Once in mom's body, her new stem cells didn't like what they saw; they saw trauma and tiny, parts-per-million leukemia cells and they went ballistic!  

 (I should interject here that it is good that they attacked the last parts per million leukemia cells.  This is called graft vs. leukemia, and it is when the new/donor leukocytes attack any residual cancer cells and obliterate them.  Mom's new cells did just that.  She is completely cancer free!)

In an attempt to save their new "home" (ie: mom's body), they went into over-drive building up fluid around all her vital organs in an attempt to protect them from the enemy that they could not see or understand.  It was self-preservation - these new cells wanted to LIVE, and they were going to do whatever it took to survive.  How could they have known that they're attempts to live would inadvertently nearly kill them?

After a couple of days, mom's kidneys began working and got enough fluid off that she could breathe on her own without the respiratory machines.  It was such a relief; we were all so grateful.

But, things didn't seem to get better fast enough or even very much at all.  Something was wrong, but we didn't know what...yet.

We celebrated Father's Day with dad in mom's hospital room.  This was the leather and diamond bracelet we girls got him.  Mr. C was, sadly, off working on a computer system; but we Skyped later that day.

We said good-bye to, Debi, one of mom's night nurses who switched to working days down in radiology.  She gave mom those yellow pom-poms, because "she was mom's cheerleader". :-)

And then mom wasn't feeling well - AT ALL.  Mr. C was back from working in Iowa, and dad and my sisters were all gone when I got a phone call one morning that I needed to hurry over to the hospital NOW.  Since Mr. C and I usually came around lunch and stayed until midnight or later, I was worried; they wouldn't call me for no reason, especially knowing that I'm ALWAYS there at least by noon.

I was in a panic.  I threw my clothes on and rushed to the hospital.  When we got to the stem cell in-patient ward, I was handed a phone, and one of mom's doctors was on the line.  He told me mom had Thrombotic Thrombocytopenic Purpura or TTP; a rare blood condition that causes tiny clots all throughout the vascular system.  Mom's was caused by her body reacting to her anti-rejection medication - again, a VERY rare side-effect.  Left untreated it is fatal in 90% of cases.  Needless to say, I was terrified; and because my dad was gone, I was her next of kin and had to sign all of her consent papers for her procedures since she was too groggy mentally to be deemed fit to have her own best interests in mind.  Oh joy.  It reminded me of when my sister, W, had too many seizures in a row one December; and I had to act of her next of kin as she lay in a hospital room unconscious - bad memories.

Before I knew it, a surgeon was on the stem cell floor ready to insert a catheter into mom's femoral artery so they could immediately begin the treatment for the TTP.  One of mom's nurses and I stayed by mom's head (face masked, hands gloved, and body clothed in a plastic gown), holding her hand, caressing her head, and trying to soothe her with reassuring whispers as the surgeon set up a make-shift sterile field and sliced into her groin - there wasn't time for good pain meds; so, a local poke of lidocaine was all she got.

Once inserted, the plasmapheresis began:

Mom's FABULOUS technician, Rene, hooking her up to the plasmapheresis machine.  We saw him every day for 16 days straight.
Plasmapheresis can be likened to dialysis in a sense.  The process essentially pulls the blood from the patient's body and into a machine that centrifuges out the plasma (which contains the "bad stuff" - very technical, I know!) while at the same time replacing said plasma with clean, donor plasma in the exact, same amount.

It can take days or even weeks of daily plasmapheresis to get all of the unclean plasma out of the patient's blood system.  Mom had about 16-18 treatments total.  She would get very cold during the process; which can happen since the donor plasma has to be kept on ice to keep it "fresh" for the procedure.  So, Rene and I would wrap mom up like a burrito in heated blankets from the ICU Pixus station and fleece blankets from stem cell as well as a knit hat to keep her from freezing.

A photo of the plasmapheresis machine.  You can see the old, nasty plasma that was pulled from mom in the large bag toward the upper-middle of the shot.  It is the color of muddy creek water - clean plasma is roughly the color of creamed corn and slightly translucent. As you can see, mom's was in bad shape.

All this while, mom was also suffering from a mild case of graft vs. host disease or GvHD in her esophagus, stomach, and intestinal tract.  While mild (level one), it still made it difficult for her to swallow anything (even pills and water) and keep anything down.  So, she had been put on a high dose of steroids (protocol for treating GvHD).

In their usual fashion, they were exacerbating mom's fluid retention and kidney issues.  At the worst of it, her kidneys were only functioning at 5% of their ability - obviously not good.  So, the nephrology team here at CTCA decided that while she already had the catheter in her femoral artery, they would go ahead and do dialysis after EVERY session of plasmapheresis.  This is tough on the body and mind, but it was necessary; so, we hunkered down to try to support mom as the emotions ran high and the appetite, mood, and hopefulness ran low.

Mom receiving kidney dialysis.  She would receive Xanax to keep her calm and an eye mask to block out the light; so she could try to sleep through the procedure.
The plasmapheresis and dialysis continued for nearly three weeks.  Mom had lost her appetite after transplant and was now only getting nutrients (as well as her fluids and medication) via her picc line.  She couldn't walk, because the fluid build-up had weakened her leg muscles terribly and her fluid-filled feet hurt to stand upon.  Her kidneys would work, then play a mean, little game where they wouldn't work so well.  Then, her platelets (the last blood product to be created by the body, thus the last to show real signs of improvement after transplant) would drop frighteningly low only to jump back to a decent level a day or two later - needless to say, we were all emotionally exhausted by the roller-coaster that is life after stem cell transplant.

All the while, mom was being lifted up in prayer by faithful friends both at home and here at the CTCA (far too many to even mention) and remembered in gifts and cards (they mean SO MUCH to us all!).  Slowly but surely, every prayer was answered; often just in the nick of time.  I'd always heard, "God is never late, but always on time."; but I had no clue just how true that statement is until living out these "100 days" with mom.  He has always followed through on His promises; and He has never let us down - AMEN!  What a wonderful daddy-God we have!

After more than two weeks of plasmapheresis and dialysis and a couple more weeks of TPN mom was beginning to feel better - A LOT better!  Her appetite began to come back after not eating any solid food for nearly two months.  She now eats three small meals a day plus two or three snacks.  She began doing PT (physical therapy) from her bed, and she can now pull herself up, sit up, stretch/move her legs in bed, and stand while stretching from side to side.  She hasn't walked yet, but she's getting there!

Physical therapy machine that helps hold mom up so she can work on building leg strength by standing while supported.

Today, I am pleased to say that her kidney function is at 25% and rising!  She's doing so well that her femoral artery catheter was REMOVED today!  HOORAY!  No more dialysis for mom!  Believe me, she was over the moon about that news.

Yesterday, she and dad celebrated their 34th wedding anniversary:

Mom and dad - 34 years strong!

We shared cake (as we always do during celebrations) with the 2nd and 4th floor stem cell units:

White cake with mom and dad's wedding colors (purple and yellow) on left; peanut butter passion cake (SO GOOD) on right from our favorite local shop Cake Box Bakery.

So, how's that for an update?!  It was a long time coming, that's for sure and certain.  Every day is better than the last.  Mom's 100th day is September 1st, and believe it or not we are still on track to be out by that time.  This journey has reminded me over and over again that He cares for us, He wants us well, He is fervent and furious in His love and desire for us to be healthy/happy/whole, He IS the great physician, and He adores His children (which is ALL of us, every, single, person on Earth, in case you didn't know).  For all we've been through, we have been seen through - relatively unscathed, really.  How blessed are we?!

L-R: Mr. C, me, dad, mom, and W on mom and dad's anniversary - see, we're still smiling!
I wish you, wherever you are in this world so much health, happiness, hope, and laughter.  I hope your soul is light and your burdens too.  I pray the desires of your heart are flowing towards you as your troubles are whisked away.  I hope you have more reasons to smile than cry.  Most of all, I wish you all the love in the universe!

Blessings Blessings and MORE Blessings,
*mandie*

3 comments:

  1. I've been wondering how your mom was doing after her transplant. What a frightening couple of months for all of you! I'm so glad to hear that she's over the worst of it and doing so much better. She'll remain in my thoughts and prayers. :)

    ReplyDelete
  2. I appreciate your taking time to share this update. The details are unbelievable! Your spirit is a blessing to me and so are your words. Hope your mom is home soon and walking, too! Love to all of your family,
    Ann Hektoen

    ReplyDelete
  3. Kerry is full of life and has gained strength through God, family and praying friends! May August be a true month of celebration for the entire family!! Love to each of you!

    Carol Meyers

    ReplyDelete