BMT Day +190 Saying goodbye

We have traversed a universe of life’s possibilities in a mere 48 hours, from a new normal (dialysis) to end of life. 

I know from thoughts shared with others about how tired she was and that she has been thinking of the stopping the fight for some time.  She told them that given her constant suffering, that the only reason she was continuing was for me.  I should have ‘let’ her discuss her concerns with me, but I wasn’t ready and she knew how difficult it would have been. 
 
From a full go to full stop.  In hours.

In the hospital

Teri had a better day yesterday Tuesday being titrated on a fentanyl patch in which a narcotic is gradually released through the skin over 72 hours.  She still had paroxysms of upper abdomen pain as she did on Sunday that brought her to the hospital for needed analgesia.  But less severe.  She called me in the morning at home.  That’s always a sign she is feeling better, with it.  She can smile.

We meet with palliative care to develop a plan for pain relief and recommend the fentanyl patch for a basal pain control with oxycodone in a concentrated liquid form for spikes in her pain.  She is listed as nominally ‘allergic’ to oxycodone to which she developed severe nausea.  However, we learn that in patients naïve to narcotics as she was in the beginning, that reaction is much more common than in those who have received a lot of narcotics.  That explains a lot.  So we try the oral drops.  And it works on her stabbing pain.

We meet with hospice care which provides nursing, aide, wheel chair, commode, hospital bed if needed, plus social work, therapist, bereavement counseling …  We arrange for the nursing and debate whether she will need an ambulance to come home.

Teri is alert but weak, but does not want to get out of bed.

She is calm and at peace.

Saying goodbyes

We share mundane memories about the kids, travel, and our early years. 

She reminisces with Dr. H., “I put up a good fight didn’t I?”  “Yes, an incredible fight, you suffered through the most complications of anyone I’ve taken care of.”

She says to him, “I have no regrets, except for leaving B.”

He says, “Your husband has the patience of a saint – this comes from the entire medical team, doctors and physician’s assistants.”

She says, “I know.”

She asks, “Will I see you again?”

Dr. H., “I’m not through with you yet.  I’ll stop by your home this week.”

She asks me to ask the Life Clinic (BMT) receptionists (Josie, Patty) and several (Alyssa, Charlotte) on the Laboratory blood draw team that she saw 2-3 times a week to come up to say goodbye.

They come up individually, hold her hand, share tears, hug.

“I always looked for your name on the lab patient list and looked forward to your coming.”   

Teri, "You are the only one who looked after my skin as it was breaking down around my PICC line, you gave me special care.”

“You have given so much and you have handled it so graciously.  I love you.”

“I will carry part of you with me in my heart.”

Ruth the harpist who played for her:  “You have touched so many of our lives with your strong spirit."

Mary (spouse of Steve), daughter Becca, new husband Josh and Kat come from Madison and bring Vietnamese noodles.  Tears, holding on to Teri and me for an eternity.

Lois, a college classmate, arrives from NY to help care for Teri.  She decides to stay the night at the hospital with Teri.

Recalled conversation

On Saturday when she broke down after her dialysis and said she couldn’t go on, we sat in the car in the garage alternatively sobbing and arguing.

“You want me around for your self, but you don’t listen to my needs, my wishes.”

“It’s true.  Since Dr. H. said your cancer was likely cured two months ago, I have began to dare to dream about our future together.  Now, I can’t envision the future without you.”

“I’m no longer the person you fell in love with, the person you married.  I’m no longer myself.”

“I’ve resolved in my mind that even if you are disabled, wheelchair bound, we will continue a life together, even travel.”

“That’s no life for me.”

Empty house

I notice that on one of her innumerable notes left around the house, she has fastidiously recorded her nephrostomy output in the hope of getting the tubes taken out once and for all.  The dates are marked from 8/15 to 8/21.  The last entry marks the day she decided not to go forward.  She was so close to the threshold, just 25 cc’s, less than one ounce over the limit for removal.  Indeed, she was so close to conquering this.

I recognize the solitude in the house again, as I have for the 190 or so days of hospitalization.  This time, in my state of heightened awareness, I notice that is not simply the absence of sound but instead it is fully pregnant and bursting with her life and her presence.  It expressed everywhere I look as I walk through the darkened house, the colors, the furniture, the tchochkes, the pictures ... the notes.

Teri’s desk is totally clean of bills.  A prescient sign of her preparedness.

After she comes home today, the house will be brimming with kids, son-in-law, grandkid, her siblings from California and friends.

For communication, please send e-mails or comments - either I or the kids will read them to Teri.

BMT Day +188 A final decision

The decision

“It’s been too long … I’m in too much pain … it’s not the life I envisioned … every next step they recommend comes with a complication or side effect … I have no life.”

 “I just want it to end.  I want to stop therapy now.”

After our call to him, Dr. H. came over to our home on Sunday morning and listened.  He said stopping all treatment was very understandable in light of Teri’s course, but was not one he would make for himself.  He said it would likely require 3-4 more months before the lymphocytes became functional, and she regained some modicum of normalcy.  But there are no absolute guarantees.  He said that the neph tubes could come out soon;  she was happy about that.  He and I recommended an NJ (nasojejunal) tube again to help her regain weight and build protein to draw down the fluid in her abdomen and legs.  She agreed, momentarily, with this new plan while Dr. H. cancelled Sunday’s planned IV needle change at the Day Hospital.

Later, she sobbed to me, “You don’t listen to what I’m saying.  I have no control anymore over my body.  You‘re acting like a doctor.  It’s my decision.”  That’s my husband-doctor dilemma.

Over 24 hours she careens back and forth thinking that she will take on the feeding tube and then giving up the idea.  She wags me like a tail, one moment thinking of a future together, another, looking at now, coming to a full stop.

Readmission

Another complication.  Later Sunday evening she developed severe, “dagger-like” pain in the stomach area after developing melena (dark black stools containing bllood) early in the day.  I gave her a dilaudid (narcotic) to calm down the pain, doubled her acid suppression, and arranged for her to be readmitted to the BMT ward.  Indeed as a result of the bleeding, she was very low in red cells (Hgb 6 normal 12-15) and platelets (6K, normal 150-350K) and received 2 units each of red cells and platelets.  She received fentanyl, another narcotic.  To me in GI, this sounded like a bleeding duodenal ulcer, or, stress or uremic gastritis.

On attending rounds this morning, Dr. R. kneeled by her bedside, she said “I’m tossed at times.”  “I don’t want to die, yet I can’t tolerate it anymore going forward.  I’m not afraid to die.  I’ve come to my decision.”

Dr. R. to Teri: “I’m here to listen to you, to facilitate your goals (not B’s goals for you).” 

Dr. R. to me: “What is the medical course between where you are and where you hope to be?”  Answer, 3-4 months of more of the same before improvement.  “What is the cost to get from here to hope?”  Answer, the same level of suffering.  “Is the price to high for Teri?”  “It seems too high for her, now.”

Dr. R. reminds us that the museum tickets Teri and I gave him for the China exhibit enthralled his 11 year old son.

Dr. R. tells Teri he applauds her unparalleled courage and endurance.  “And, it takes a lot of courage to come to the point where you are!”

Dr. R. tells me that accepting Teri’s decision as right for her is the most difficult thing I will ever have to do.  I sob.

Dr. R. tells me that telling Teri that I will carry on successfully with her memories will be my parting gift to her.

Family matters

Teri spends time looking at Ben’s pictorial calendars that he makes every year for the family out of pictures taken in Ecuador, Galapagos, California …

Teri spends time looking at pictures of Jack, Rachel and John.  Jack is almost 10 months, now.

As we hold on to each other, I tell her Teri has been the heart and soul of our family.

She tells me I have shown her humor, music and travels to places that she never anticipated visiting.

I tell her I’ve learned more about her during this past 1½ years through her reflection in the eyes of others:  how she connects on a deep and responsive level, and the gargantuan well spring that is her heart.

She touches me tenderly and tells me over and over.

At dinner, she held hands with Dad and I in silence for 15 minutes, and told Dad he loved him.  “I thank you for all the beauty you have brought into B and my lives with the paintings.”  Dad reminded her of how well she took care of him since my mother died.  Teri:  “You and B must be there together for each other.” 

Finite time

We have limited time. 

Teri asks me to limit visitors to:  immediate family, her siblings, our close friends from Madison, and the Gourmet Club from Columbus.

I ask once again for your prayers and thoughts this time to help make her farewell and transition as peaceful as possible.

BMT Day +185 Another tough week

Tough week

Yesterday was a 13+ hour day and we arrived home at 9:30 pm. 

It began with our inaugural day at Fresenius Dialysis Center, downtown 1.8 miles away from home, adjacent to the old Schlitz Brewery.  She was placed in a large open, sun lit room with 8 other dialyzed patients.  She is apparently still in the adjustment phase to dialysis.  Dialysis definitely perturbs ones systems so we are told and Teri is now experiences profound cold (4 blankets) and fatigue during and after the dialysis.  She also experienced nausea and diarrhea yesterday, but those is probably separate.  Her ‘numbers’ reflect that the blood is being cleared of waste products.

The day continued at the Day Hospital with lab tests, antiviral foscarnet infusion which expectedly dropped her calcium level and required an additional 1.5 g calcium infusion afterwards.  She also received IV antifungal caspofungin to treat the yeast infection on her line.  She also received red blood cells.  She also had her PICC line removed – see below.  She also had a regular IV placed in her wrist.  This IV can only be used for two days in a row because of irritation caused by the caspofungin.

Another bump.  She had a low grade temperature of 100.8° F after dialysis this past Monday.  Cultures were drawn and on Wednesday evening, she was confirmed to have a common skin yeast Candida colonizing her PICC line.  Since this could lead to a particularly serious sepsis (blood infection) that I’ve witnesses in children, after 6 months and 12 days, the PICC line (right elbow to above the heart) was removed yesterday.  Actually it is quite amazing that this triple lumen tube was free of infection for this entire time.  It is possible that her poor dietary intake without the requisite high fat content did not allow her to absorb adequate amounts of posaconzaole (anti-fungal).  She may also have taken less than the full two teaspoons.

 

Her nephrosotomy tubes are still passing blood, about double the threshold volume that we need to reduce it below in order to have them permanently removed from her back.

Teri lost functional ground while in hospital for a week to get her kidneys embolized and dialysis initiated – she was discharged last Monday.  She, for example, has difficulty getting up from a chair without help.  She is back to a walker full time and walks deliberately and hunched over.  I try to correct her posture.  She is having abundant abdominal cramping and some diarrhea – she whimpers.  Her body simply doesn’t feel good.  Her energy and mood are both at a low ebb. 

As I plot out her next two weeks, she is in the Dialysis Center, Day Hospital, or BMT Clinic 17 half days out of 28 half days, leaving only has two fully free days per week at home.

Our new normal. 

Teri just told me that she ‘feels totally wiped out’ by the last several days of dialysis and Day Hospital stays and would prefer that you didn’t call but rather e-mail her or send cards for the next week until she regains her strength.

Dialysis decisions

We are now overwhelmed with evaluating choices of how and where to do the dialysis.  The choices are:  1) In the Dialysis Center 4 hours 3 times a week,  2) In the home 2 hours 5 days a week – much more costly, requires plumbing changes, and  3) In the Dialysis Center, 8 hours 3 nights a week – a dialysis sleepover.

Our MCW insurance pays 65% of the ‘standard’ costs (estimated $55K/year) beyond the deductible and up to a maximum out-of-pocket.  At either the 30 or 90 days, Medicare will come in to play.  It is difficult to get precise figures for out-of-pocket costs.  Coverage will vary for each of the three options.  

Daunting.

Work decision                                                            .

I am confronting a decision about my job.  I had anticipated by this point of her course (185 days post transplant) that Teri would be well on the way to recovery of function or in a stable pattern.  If at least stable, then I could anticipate her support needs on a week-to-week basis, schedule commensurate help and resume work.  But neither has transpired.  Each week seems to bring new medical challenges.  We are not yet on a steady recovery trajectory.  Should I return to FMLA temporarily or should I begin to work part time … ?

Friends

Thoughtful packages and cards arrive and provide momentary encouragement to Teri.   I find them to be a helpful reflection of what we are experiencing.  They reflect hope, our struggle and determination, our family strength, and admiration for us.  

People constantly ask what they can do for me.  I am touched by all the concern.  I am so mired in this endless struggle, that it is one question to which I am at a loss to answer.  There is so much need, and yet so little one can actually do in the face of such overwhelming needs.  Perhaps lunches out to break the monotony …  I feel I am weary and losing my resourcefulness …

Travel memories

When Teri is not sleeping or dozing during her treatments, she is choosing musicals to download to her iPad and I reminisce about our travels together, something we had hoped to do more of.

During our trip to Italy in October of 2009, we traipsed around Venice, Florence and Rome walking 10 hours one day in a huge circumference.  In Venice, someone told us that Florence was famous for a local fare fiori di zucca pastellati, batter fried zucchini flowers.  When we arrived in Florence, we asked for it at a number of cafes and restaurants but couldn’t find it.  When asked, the proprietors of our ultramodern boutique hotel thought it was out of season.  As you get fixed on these little fantasized desires, they tend to grow upon you, so we were naturally disappointed.  Then one morning, at breakfast, the hotelier brought us a present, a small grease-stained bag filled with fiori di zucca pastellati.  An unexpected gesture.  A wish fulfilled.  Delightful!  Delizioso!

Teri’s lesson

As the faculty advisor for the local APAMSA chapter, Teri and I hosted 34 Asian American medical students to welcome the incoming 1^st year medical students.  It was not great timing since Teri was not feeling well but it was too late to change the venue.  She dutifully laid supine on a recliner near the door and welcomed them.  They brought all the food because my hands were full and I was unable to grill as usual this year. 

I overheard her tell one medical student whom she perceived to be arrogant that it was not about where the medical school you attended was ranked on U.S. News and World Report, it was about what you achieve with your career, especially how much passion and compassion you demonstrate.

Life is full of Teri’s lessons.

BMT Day +180 The next chapter: dialysis for life

The next chapter:  No more kidneys – dialysis

Shock and awe:  AML

First remission on chemotherapy

Nocardia infection from potting plants

One great feeling week in Vancouver

Relapse – 80 days in hospital

Jack is born

Near death from VRE superbug

Fortunate second remission

Christmas with Jack

Bone marrow transplant – 54 days in hospital

Complication of GI procedure – MICU detour

Intractable BK virus and bleeding

Home but not home, no way to live 

What an emotional category HC (mountain grade beyond classification) climb in the Tour de Teri.  Exactly one week ago, Teri had decided to give up the tour.  She was presented the chance of continuing with less pain and better quality after jettisoning her kidneys.  Then, what a rapid descent.  It has been done.

She is off the continuous self controlled IV narcotic, now on oral narcotics.  She is having expected back pain from the dying kidneys.  Her tummy is larger.  She ran a fever and had 8 blood cultures drawn.  She is putting out little urine through the nephrostomy tubes, as expected.  Eventually, she will not pee at all.

Her mood is decidedly upbeat.

Teri is at peace with her decision.  She is back riding the tour.  I’m still trying to cope with the finality of loss of organs, of being tied forever to a dialyzing machine, and of the limitations to our lifestyle. 

Our new normal. 

Dialysis

She has been dialyzed twice, once in her own room and once in the dialysis unit, for two and four hours.  It involves two large filtration units attached to high flow plumbing much like that for your washer.  The double lumen large bore Permacath in the right side of her upper chest allows simultaneous inflow and outflow of blood close to her heart so her entire blood volume can be cleansed 7 times over in a two hour period.  By altering the solutions on the other side of the membrane from the blood, they can remove varying amounts of waste products and precise amounts of fluid from her body.  The first day, they removed exactly 0.5 L or 1 lb of fluid.  The second day, twice that.  Her BUN (blood urea nitrogen waste product) came down from 50 to 35 to 24 (normal < 20) on successive days.  It makes a racket.  Teri feels tired afterwards.  She will do this at least 9-10 hours per week from now on.

Friends

Paul, Steve and Mary came to visit from Madison on Saturday.  Almost sounds like the folk trio Peter, Paul and Mary from our era “If I had a hammer, I’d hammer that BK in the morning … evening.”  We went to the museum together to see the Emperor Qian Long artifacts from his retirement pavilion in the Forbidden City and my father’s paintings. 

We received a great card from Becky in NJ – two penguins, one “I have to pee” (Teri), second “I’ll go with you” (everyone else in Teri’s vicinity).  Inside caption:  It’s true, all chicks like to pee with a friend.  Becky shares her reactions to the blog, asks what can be done from afar, tells interesting stories of hubby’s retirement, describes her daughter in college, and makes book recommendations (Female Nomad).  It gives Teri a sense that life goes on … elsewhere.

Teri received a second beautifully and intricately knitted hat from Joan (president of the Chicago knitwits association).  Teri’s first one – her favorite amongst all the many knitted hats she received – was swallowed up by the laundry monster, with no trace of remains.  She was too embarrassed to ask for another.  I was not.  She wears it like hair. 

BMT Day +177 Eliminating the kidneys

The procedure

It is hard to imagine a scenario in which dialysis would be a life choice one would look forward to.  But that is the nature and extent (5 months 1 day) of Teri’s nephritic suffering.  That is where Teri was on Monday.

Tonight Wednesday, Teri went to interventional radiology at 5 pm to embolize (clot off) both kidneys and to place a Permacath (special large bore catheter) to begin temporary hemodialysis.  This was performed under general anesthesia.  The former involved placing an arterial catheter up to the renal arties and injecting beads to stop the regional blood flow in the kidneys followed by injecting coils in the main arteries.  The kidneys will quickly become hypoxic (lack of oxygen) and die.  We are told there will be a lot of pain initially.  Eventually they will become scar tissue.  She will be on a PCA (patient-controlled anesthesia) continuous infusion of Dilaudid (a narcotic) to control her pain.  They will initially leave the nephrostomy tubes in place but they should be removed before she returns home.  

She is still in post-op recovery getting her endotracheal (breathing) tube removed. She returned at 9:00, intermittently sleeping and smiling.

Notes around the house

Everywhere – bathroom sink, kitchen, dining table, breakfast table, laundry room – are notes instructing Ben and I on exactly what needs to be done and exactly how to do things.  That’s Teri. 

I wonder if it is more than that.  It’s away of reinforcing a memory that has slipped during her illness.  It’s a way of making life tangible, paper-more, visible.  It’s a way of staying actively involved in what goes on.  It’s a way of leaving her she-dog mark.

In the quiet of her absence, we miss the squelch of her walker.  

Ben

It is really nice to have Ben here.  For support.  I have bounced some intricate family matters off him and he is a good listener, critical thinker, and level headed.  An insightful sounding board.  I found he is also a good judge of people and has a finely tuned bullshit detector that will serve him well in his future endeavors.  He is mature.

I reminded him of a favorite memory of mine.  When he and Rachel were 9-11 years, I would occasionally bring them to Children’s Hospital (now Nationwide Children’s in Columbus) for my Saturday ward rounds.  The highlight of course was going to the cafeteria and choosing lunch from a plethora of visible possibilities.  One Saturday morning in my office, Ben said, “When I grow up, I want to have a desk right here facing yours, Dad.”  It was the sort of memorable statement that warms a parent’s heart and creates a pleasant fantasy.  Now, it seems our desks could be in proximity if he is a willing geriatrician in the old folk’s home where I retire.

Ben and I have cycled a bunch together this week and I have thoroughly enjoyed it.  It is great to be able to do something fun and active with your progeny.  After his crash, he had to replace parts of his 1987 Vitus 979 one of the early light weight aluminum frame cycles but it is spinning smoothly.  Yesterday, we cranked up to speeds of 23-24 mph for stretches.  He is clearly a strong biker.

We watched some soccer together.  He has a great eye for soccer detail as the U.S. tied Mexico 1-1 in a ‘friendly’.

Ben enjoys and recommends great literature as he eyeballs his way through the top 25 books of the last quarter century.  Since I read non-fiction and mysteries, I have managed to bypass most of this fine literature.  He just finished Great Plains by Ian Frazier and highly recommends it.  It is next on my list.

It is great to have kids that you learn from.

BMT Day +174 The end of line for Teri’s kidneys

Renal consult

On Friday, her nephrologist came to visit her in Day Surgery after her left nephrostomy tube was replaced. 

We learned more than we bargained for. 

Although it commonly infects transplanted kidneys and post-BMT bladders, the BK virus doesn’t usually damage the native kidneys in after BMT.  Teri is the unlucky one.  Indeed, this virus is the sole source of her current problems including protein loss through the kidneys, resulting ascites (abdominal fluid) and leg edema, constant blood loss (and transfusions), platelet consumption (and transfusions), poor nutrition and low energy.  Unbeknownst to us, 10% of BMT patients experience renal failure and undergo renal dialysis – removal of waste products via fluid exchange.  The course to renal failure sounded inexorable.  Dialysis usually begins at 10% remaining function and Teri is hovering at 20%. 

Dialysis is given for 3-4 hours 3 times a week but can be given at home 5 days a week.  So the Day Hospital of which Teri is so weary, may be simply traded for the Dialysis Unit, just as frequently.  Travel is now limited by availability of dialysis units.  International travel, a great source of mutual enjoyment, may be a thing of the past.  Life is forever altered.  However, one can live decades on dialysis.  The possibility of eventual renal transplant is offered but the BK can be the bugaboo, again.

Urine for thought.

Crisis of quality of life

Teri tells me yesterday and Dr. H. today in clinic that she cannot go on suffering any longer like this – every other day in Day hospital, transfusion upon transfusion, pains from bladder spasms constantly – “with no quality of life”.  She can’t go out, she dresses like a bag lady, she can’t eat, she can’t enjoy anything … she has no life.  She wants to end it now.  She is serious, forceful and adamant that it is her decision.  I argue with her about coming this far and being so close to no avail.  I talk about mind over matter.  She says that the duration of this ordeal has cleared away her kick butt mind.  I suggest that she needs to speak with her psychologist and Dr. H. before she makes any decisions.  She agrees to that step.

In clinic, Dr. H. agrees with Teri and corroborates her lack of quality of life.  He asks her to give him one more chance to improve her quality of life.

She listens.

Dr. H. has discussed this with the nephrology team and other BMT experts and feels that it is best her and her comfort to begin dialysis this week.  This means fast forwarding to the total renal failure.  This means they will kill her kidneys and in so doing finally kill off the virus because it is only trophic to the kidney and bladder tissues.  Once the kidneys and bladder have become scar tissue, the virus has no lush tissue to infect.  They can do this medically by embolizing it (putting gel in the artery) and infusing it with alcohol.  It is painful so they plan to do an epidural (spinal) block as one would with delivery.  It will involve putting another catheter for dialysis in her chest. 

Teri agrees to give it a try.

She is relieved and regains hope of achieving pain relief and some measure of freedom from this morass.  She hugs Dr. H.  Dr. H. apologizes for all that she has been through. 

THE ultimate trade off

Your survival for your life as you know it.  In Teri’s case, your survival for the price of your organs.  This is the hypothetical pact that I mused about in a past blog.  What if you knew you could survive but the price was that you would not be the same person with the same organs, with the same cognitive ability, with the same sense of yourself. 

We are sadly there.

Three nephews + Ben

Greg (sister Terri’s son - right), Michael (sister Anita’s son) and recently married Peter (brother Simon’s son - middle) all came and sanded, painted, vacuumed, mopped,, switched outlets, change bulbs, hung pictures, grilled and saladed for two days while Teri was in the Day Hospital. 

Before arrival, we weren’t sure if they were going to be the Three Stooges or the Three Amigos.  But after the place sparkled and was still standing, they earned the latter moniker.  They went to eat and drink lowland gourmet beers at the Benelux (Belgium-Netherlands-Luxembourg) Restaurant.  Unfortunately Michael got bit by fried cheese curds – “Welcome to Wisconsin”.  Ben returned from picking Rachel’s (Eileen’s old car) 140K Honda Ciivic and finding lodging in East Lansing in Okemos.  The now four Musketeers did a tour of the empty Pabst brewery but did taste a Pabst.  Hmm, they sampled the culinary best of Wisconsin – brats, cheese washed down with beer.

Next step

We begin tomorrow.  Teri will be readmitted. 

As Teri faces a new round of challenges, she again needs your prayers and telepathic thoughts to help her get through the renal ablation and dialysis with healing and without complications.  She needs it.  She deserves it

Even some cards – your humor, insight and family stories – would help as she copes with another precipitous bump in the road.

BMT Day +169 More kidney stuff

Kidneys are the issue

On Monday, at her BMT doctor’s visit, Teri had the first discussion about what might happen if the BK virus continues to damage her kidneys (BK nephropathy).  About 20% lose their kidneys as a result of this damage.  Indeed, she has progressed from hemorrhagic cystitis, inflammation of the lining of the bladder and kidney to nephropathy, a deeper injury to the kidney substance itself.  The potential end result would be that instead of urinating, she would undergo hemodialysis three times a week to remove buildup of waste products. 

Is there a possible sliver of silver lining, yes there always is?  The virus infection would finally burn out since the kidneys and bladder are the only targets for BK.  Teri said she might actually prefer that over the continuing painful bladder spasms. 

She was also told the alternative to the hemodialysis would be a kidney transplant.  She said oh yeah it would be another chance for complications and believe me she knows complications. 

One reason for this predicament is that the available antiviral agents aren’t very effective against the ‘innocuous’ (for health individuals) BK virus.  The second is that we need her ‘baby’ lymphocytes to start acting like a trigger-happy teenager.  In military terms, that means arming and targeting the missiles.  Usually that happens as they pass through the thymus gland fort which turns on the warhead and provides the GPS.  Unfortunately, in elders, the thymus is semiretired so it takes much longer to target lymphocytes.  We need them to mature now!  

Although the possibility of renal failure was discussed in clinic as if another bump in the road, perhaps one is entitled to label even a major complication a so-called bump when compared to death in the face of life. 

Teri continues to struggle mightily with edema (swelling) from her waist down to the point that she has difficulty walking.  Last week, when they suggested IV fluids to flush her kidneys, I requested that they halve the normal saline to lessen the chance of sodium and fluid retention.  The ‘home care’ agency continued to deliver IV fluids over the weekend, but I unilaterally decided to withhold them because of my fear she would retain even more fluid.  After watching her balloon this weekend without supplemental fluids, it was the right decision, validated by the team. 

It is as they say ‘between da rock and da hard place’.  That is, between the need to flush out the kidneys vs. the risk of fluid retention and need of more diuresis and paracentesis.

Inimitably, as Dr. H. points out, the BK virus is really her only post transplant issue.  Doing the math, it means that 99.9% of processes are going right.  But even that very positive equation isn’t much qualitative solace to sooth Teri’s daily symptomatic struggles.

She was calm yesterday about these prospects.  That’s her strength.  I am the quiet catastrophizer.

She will get a nephrology consult on Friday.

Existential snippets

Teri is alive.  Teri is alive! 

Dr. H. reemphasized this week that after her relapse almost exactly a year ago, few on the team predicted she would still be here a year later.  Yet, we are dealing with significant disability and poor quality of life.  Life is not near normal.  She may losing organs.

                                                 

As I think about the alternative …

We are dealing with it, once again, on a day-to-day extemporaneous basis. 

                                    

It seems to be the only way to get through it.

My support hours

I listened to the long term care insurer query Teri about her home care needs (e.g. bathing, dressing, walking, laundry, cooking, medication, Day Hospital …), and the potential number of hours of support required.  After subtracting the sleeping hours, work hours, and my work out/miscellaneous time, I calculated that I am spending 60+ hours a week in my support role.  More than a full time job, on top of a job.

Prayers and thoughts

Thank you all for your thoughts, prayers and for listening.  For those who need a focal point, ‘tis the BK virus and nephropathy.  We need her lymphocytes to get growing, become armed and aimed, now before it is too late.