Thursday, March 24, 2011

Reppen Family Children's Educational Fund

A custodial, not-for-profit bank account has been established at JP Morgan Chase Bank for the benefit of our three childrens' college educations.  Our two daughters are in college and our son is an 8th grader.  We feel very strongly about keeping education a top family priority and appreciate any help you can give us.

Reppen Family Children's Educational Fund

Chase Routing Number:  071000013

Account # 865350409

Contributions may be made at any Chase Bank worldwide, or made from any bank using Chase's QuickPay service. 

Thank you in advance for supporting us in the past, present, and future.

Fondly, Sue & Family


Saturday, March 19, 2011

A Fond Farewell

Once the dust settles, I will write the final entry to "Juuuuust A Bit Outside," as my muse and husband, Steve, has passed away.  He died yesterday around 1:50 p.m. with his daughters, brothers, and nurse by his side as he began his next journey.  Our son and other loved ones were able to say goodbye in time.

Here is a link for our arrangements.  Thank you for caring and for reading along.  It has meant the world to me.



Monday, March 14, 2011

Graduation Day

A bit of unexpected good news today.  Steve was deemed to be well enough and stable enough to be transferred out of Feinberg's MICU back to Prentice.  He received platelets today and had a follow-up appointment in Interventional Radiology to check his gallbladder drain.  

It was WONDERFUL to be back in Prentice, even though MICU provided equally awesome care and saved his life.  Prentice feels like home.  Steve woke up after transport and said, "Let's go!"  He is so out of it that he had no clue we had been on elevators, in the tunnel, etc.  I told him to look out the window to see that we were, in fact, no longer in the ICU.  His response was pretty funny.  Perhaps you are familiar with the acronym WTF?  He was sleeping soundly when we left, comfortable, and at peace.  

This could be a long, slow recovery, and we will get through this next chapter.

Sunday, March 13, 2011

A Healing Kind of Day

This blog title was a direct quote from today's day nurse, Nicole.  This Sunday was truly a day of rest and healing.  This has been the longest week of my life.  This update is an anthology of e-mail, photos and text messages (in italics) from the past seven days that were sent to immediate friends and family.  


Sunday, March 6 recap sent to friends:


Steve has been an inpatient since 2/21 for (suspected then confirmed) graft versus host disease of the gut, a very very common complication of stem cell transplant.  His general demeanor changed as last weekend approached.  Sunday afternoon he took a turn downward in Prentice and the Rapid Response Team was called in.  His blood pressure was 72/35.   After assessment, he was very quickly transported to Feinberg via the tunnel system to Medical ICU.  I held up okay until I saw the defib paddles and was told "we don't wait for Transport, we're going now."

As always, we were very well informed when we arrived at the ICU.  They needed more lines to access his circulatory system in addition to all his PICC access.  We were told that a ventilator was an option, and probably a good one in order to rest his body from all the shock of "freaking out."  They attempted to insert a neck port for more line access, it didn't go well (vomiting, blood, etc.) so they made a move at 2 a.m. Monday to vent him and then put in the neck line.  He had 4 IV stands/3 were doubles, and 10 pumps going.  

It was at this time that I was asked by the staff if I wanted to speak to a pastor.


We are to believe it is septic shock.  It's been a whirlwind.  They have done massive testing and today we are seeing improvement.  He has been on a respirator since that time.   

We are VERY hopeful that he will come out of the sedative and be able to recover without major organ damage.

I am HOPEFUL.

Tuesday, March 8, 2011 9:20:36 AM CST

Ventilator monitor
I just spoke with Steve's nurse Katie in MICU.

It seems the way they manage a lot of their patients is to take them off a drug and see what happens, or dial it down a notch at a time and see.  She told me they have taken him *off sedation* and she's monitoring him closely to see what happens, but that he is still pretty out of it.

The "pressors" (drugs that artificially elevate blood pressure) are down to ONE from three.  That is a HUGE, HUGE deal!!  When I was there last night, he was still on two drugs, and the night nurse was tweaking one down.  So now he is only on one at level 13 out of a possible 20, so they are certainly moving along!!!!

I got home around 4 yesterday and was back on the road at 6:30?    From the time I got home at 4 until the time I got in the car to go back downtown, I had received a call from a Radiologist about Steve's gall bladder image from yesterday afternoon's CT scan, description of a procedure they wanted to do immediately, and verbal authorization to begin shortly.  My friend Karen and I went directly to Interventional Radiology when we arrived and Steve was already in the procedure.  So now he has a drain, and by the time we left the retrieval bag was full of what appeared to be maple syrup or perhaps a nice beef au jus.  A LOT of liquid.
 
God bless these wonderful nurses!!!!!!  They are keeping him very clean and very organized, he has a LOT of lines.  When he arrived, one of the things that jumped out at me was a comment like this, "oh my gosh, no way do we have enough lines for him."  Mind you, he had a triple lumen PICC line, and they can connect branches to each of those.

The PICC was removed yesterday, snipped and sent to the lab for assessment for infection.  So he has a port now in his neck, and there is a network of amazing lines and connections coming out of that.  In addition, I think he has 4? IV lines in his right arm and wrist, all with branches.


His arms are both swollen, they did ultrasound imaging to see if he had any clots.  He is taking a LOT of fluids, so some of that may be due to the IVs.  His ankles and feet are great.  They removed the TPN (food bag) and lipid bag.  I was told 3 different times since Sunday that often the TPN can introduce infection.  That would explain, at least to me, why Steve was never given liquid nourishment during chemo or post-transplant, seeing as he was neutropenic to begin with!

Katie also said they have "room" to give him more IV fluids if needed, as that also boosts the blood pressure.

Let's hope for some more great improvements today! 

Tuesday, March 8, 2011 

Was here for rounding and also spoke to GI guy. Dr Kamp, Attending, said today is a good day for Steve. Going to give him platelets to stay ahead of the bleed. GI guy told me the GvHD is stomach, duodenum and intestine which was Dx on 2/28 and I never heard that about the upper parts! So basically they are going to restart the TPN (food) tonight in his new PICC line, antibiotics are working, taking a pass on scoping as there isn't anything that could be fixed by that. Could be a day or two before the GI bleed stops. Did hear a bit of talk about surgery down the road....

breathing over the vent here and there, larger volume too

Norovirus positive

Wednesday, March 9, 2011 12:06:51 AM CST

Bile draining from gallbladder
Good lord, so much to report, I'm resorting to a bulleted list.  First and most important of all, NO bad news.

Blood pressure meds, pressors, reduced from 3 to 1 hanging.  The one still hanging (max value of 20) dialed down from 13 to 10 to 6 today.  That is hugely good.
B/P was 105/55 when I left.  His normal B/P is 120/60 or so.
Body temp was a tad elevated at 99
Both arms and hands swollen, but not cause for concern.  He does have a clot in the left arm but again, no big deal according to his nurse. 
Urine output good, hanging more IV fluids.  They discontined his Desferal (that iron overload drug) so he no longer has red pee.
(Note:  Were told later that Desferal could contribute to low blood pressure) Oh yes, wasn't that lovely.
Hung IVIG and Albumin (look it up)
Steve's WBC (white blood cell count) had shot up to 29 (hellooo, infection anyone?) yesterday (?) and was back to 10 today, which is normal for a normal person.  That's good, right?
He was breathing consistently OVER the vent, with good full volumes of air. 
They took his sedation away this morning, it is not unusual for it to take 24 hours or more for them to gain consciousness.  He lifted his arms a bit and tossed his head to the side and back.  They do not want him waking too quickly, and want him to just rest tonight.  He DID respond to Nurse Mariah's command to wiggle his toes :)  Bob will stay in the room with Steve tonight and be there for him if he gets restless.

Tomorrow they will do some vent testing to see if he can wean off the vent.  I was a bit baffled at the explanation, it is ALL new to me.  Sounds like they do this n that, watch the monitor, see if he can sustain himself, test some more, bla bla, then remove some of the airway assistance.  Dr. Altman (called me tonight) said she noticed this morning that he was trying to breathe through his nose, which is very good.

Now, the source of all this trouble.  So far we do know this:  He was positive for GVHD of the gut, negative for GVHD of the liver.  He does have Norovirus (common cold).  The source of this infection causing the event of Septic Shock,  is believed to be from an infection in his gallbladder.  It is a type of bacteria called G-Neg or Gram Negative.  I came home and did some quick reading, and a lot of things start making sense.  His PICC line tubing tip tested positive for G-Neg bacteria, which would make sense if that was has been running systemically in his body.  The gallbladder infection culture was G-Neg positive.  How the gallbladder got like this is a mystery, but I think it must be similar to my sewer situation.  You close down the main pipe (splenic artery) to 20% from 100%, and all that shit can't get to the sewer (spleen).  So it backs up into the shower, the tub, and makes everything possibly toxic.  LOVELY ANALOGY, SUE.  The GVHD must also come into play, and I feel that all this inflamation and immune system responses just ramped up his medical situation.  These are all my opinions.  Dr. Altman feels that the gallbladder is the "source" yet it is a chicken or the egg scenario.  Have I lost you yet?

I personally think Steve has been plotting to throw us off the trail of removing the spleen by blaming the gallbladder.  He is playing possum on the vent and hoping we forget about his spleen.


Now.  THE DRAIN.  I'm a bit interested in what is coming out of the gall bladder.  Bob, thank you for humoring me.  A "normal" gallbladder is 8cm (about 3") x 4 cm, with 50ml of bile inside.  Steve has already put out 300ml TWICE since last night at 7.  They told Bob that Steve's gallbladder was greatly extended and thinly walled.  (YIKES, almost blew out??!!). 

He is VERY VERY well taken care of by the staff.  They bathe him daily, keep the bed at a 30% up angle (got to hear about scientific, supportive data), and cleanse/suction his mouth and airway at *least* every 4 hours.  The room is immaculate, orderly, and supplied with all he needs. 

Thursday, March 10

Generally a day of gains or evens. His vent test went exceptionally well, he was breathing unassisted for at least an hour. Note:  It was really more like 3 hours, I was getting nuts. They plan on testing/strengthening again tomorrow. He is more attentive, opening his eyes and looking around. Nodding and squeezing hands. Fidgety. BP is around 120/65, hemoglobin went up during the day without transfusion. Some GI bleeding still but not cause for major concern. Giving Amicar to ward off bleeding and platelets. Started TPN nourishment. I think his right hand is much less swollen. We are all taking the night off at hospital. Staff diplomatically said that less stimulation would be a good thing overnight.





Friday, March 11
Steve passes a second breathing trial and I get a cell call on my way down that his "extubation" will be within hours.  As Megan and I arrive at his door,  two Respiratory Therapists wave at us and go WOOOO! out it comes!  Steve is in a sitting position in his hospital bed, and speaks for the first time since Sunday.  He mentions cows, and rather loudly.  We have been schooled in delirium since then, "it's called ICU."



Saturday, March 12

He mentions cows again.  

Just checked in with Steve's night nurse. He is very comfortable and is sleeping. His vitals are GREAT and the mild diuretic is really cranking out the excess fluids. Plan is no plan, just rest.

Here is a view of his right hand on Saturday, weeping from fluid overload.  The yellow tint is from elevated bilirubin. 




Sunday, March 13
I am pleased to see the swelling in his arms and hands is GREATLY reduced.  His urine output is 75-100ml per hour.  Bilirubin (total) is 23.5 and holding fairly steady.  No one seems alarmed by that.  He is yacking up his old cold with a productive cough, as they say.  He has a magic phlegm-ball wand/Swiffer/Dyson thingy that makes a sound that even I cannot tolerate.

What a difference 24 hours makes with diuretics.
Tomorrow he will have a swallow evaluation that will determine if he can take clear liquids, like broth, popsicles, etc.  After that, we are hopeful he leaves the ICU for a less acute care area.




I leave you tonight with one of many good things that came from this wild week.  Molly and I made a late night run on Wednesday to a local 7-11 in pursuit of "tiny wines" as my sister calls them.  We didn't find them, but a suitable substitute.  After requisitioning a few plastic glasses from the hospital cafeteria, we settled into the MICU Family Room Lounge for a great talk and some cheap wine.  Then we rearranged the furniture.


Friday, March 11, 2011

Update Pending

As soon as things settle down a bit I will update my blog. 

The Reader's Digest version:  Last Sunday, March 6, Steve's blood pressure took a precipitous dive.  He has been in the Northwestern MICU on a ventilator since that time due to septic shock.  Today he was taken off the vent and is on the road to recovery.  It has been an extremely stressful and upsetting week.  We are cautiously optimistic.


Tuesday, March 1, 2011

Status Quo Is The Way To Go

Not much to report, which is good.  He has been an inpatient since a week ago yesterday, 2/21. 

I have a misty memory of high school science labs, where testing and elimination helps derive the answer.  I do remember being impatient with the Scientific Method and, honestly, had forgotten the term and definition until I started typing this tonight.  I like accounting better.  Add the numbers and get an answer right away unless you want to be creative ;-)

Steve has had both a liver biopsy (negative) and colonoscopy.  C-Diff testing (look it up, please, I'm pooped, no pun intended) was negative.  The assumption was that he has Graft-versus-Host-Disease.  GvHD can be of the liver or "gut," which is term you hear a LOT with chemo and stem cell transplant.  The visual assessment of the colonoscopy confirms the GI (gut) version.  Molly found a nice summation of GvHd from the National Cancer Institute:

"Patients who undergo donor bone marrow transplantation may develop graft-versus-host disease(GVHD). Stomach and intestinal symptoms of GVHD include nausea and vomiting, severe abdominal pain and cramping, and watery, green diarrhea. Symptoms may occur 1 week to 3 months after transplantation. Some patients may require long-term treatment and diet management."

His risks of getting GvHD are in the lowest group (30-40%), as Mary was an identical *and* related matched donor.  Labs take a few days, and the colonoscopy was just yesterday.  AMAZING amount of traffic and loud, melodious farting in that GI recovery room.  How much fun it would be to work there?  My favorite moment was a male nurse belting out a fine rendition of the theme song from Love Boat.  Steve's nurse (Patty?) brought him both a heated blanket and a heated tummy woobie.  She had a great personality and it sure made my job easier.

Steve's current Christmas Tree IV
His nursing care in Prentice, if this is possible, has been even better than before.  He is the Mick Jagger of NW Stem Cell Transplant.  "Oh, Reppen is back??!!  Why didn't you TELL me?" has been heard in the halls.

Steve has been catching up on sleep and trying to get "the north and south ends" to halt their overzealous activity.  Things are settling down, and he is amazingly content to be there, which helps my outlook as well.  When he has resisted his stay my nerves are on end.  They have a PCA pump with Dilaudid going for him, he can hit the game show button every 15 minutes for pain if needed.  He is getting liquid "food" and a lot of steroids to combat the GvHD, as well as medicine to protect his liver.  His regular labs, the reds/whites/platelets are excellent!

No word on discharge plans or on surgery.  That is fine, and we are at peace with it.  My gut feeling (sorry) is that they will get him to a good point, then go in for the surgery while he is an inpatient.  Or not.

Now, a very THANKFUL shout-out to my "Anonymous" friend that so generously gave me 4 one-hour massages in the mail via a gift certificate yesterday.  When I woke up on Monday morning, rested, my back was SOOOO bad.  I am one of those people that carry their stress in their neck, shoulders and back.  Better there than my heart, right?  When I got home from the hospital, there was my gift.  I sat and cried.  THANK YOU.  


A few photos from this past week.  Almost recorded the sounds of the GI recovery room for your blog hearing pleasure, they were Grammy material.

iPhone vending machine shopping in Oncology :)
GREAT healthy, tasty lunch from Fresh Market @ Prentice.

Wednesday, February 23, 2011

The Only Guy

Our daughter Molly left protest-laden Madison, Wisconsin and headed to Chicago via bus and arrived around noon today.  Steve's liver biopsy was scheduled for 2:30.  Luckily his Mom and sister were visiting when Transport arrived at noon (don't ask, it happens) so they accompanied him to Interventional Radiology via the underground tunnel until Molly and I got to Northwestern.

The liver biopsy went without a hitch, about 10 minutes for the procedure. They gave him Versed as well as Fentanyl. No nausea.  His south end is good. Only vomited once today, this morning.  Starting IV nutrition tonight.  Bumped his anti-nausea drug, Zofran, from 4mg/6 hrs. to 8mg/8 hrs.  Increased his IV fluids.  Goal is to stop both ends from exploding.

Today's funny comment:  His IV stand is on wheels.  So you take Waltzing Mathilda with you to the bathroom.  If you are in a BIG hurry, you have to kick off the bed covers, and wheel the stand into the bathroom, drugged and possibly wobbly.  The IV stand has electric pumps with battery back ups.  You have to also unplug the IV stand, wasting precious moments.  Steve figured out today that he has enough electrical cord to race to the john without unplugging, and that was a major win.  Some days it's the little things like that that make a difference.

We are getting used to The Only Guy in sentences.  His nurse said he is the first adult patient she has ever given Desferal (chelator) to in 17 years of nursing. He is The Only Guy she has had to check a ferritin level for.  I asked, "so how do the other patients get rid of their extra iron?  Put it in an envelope and mail it??"  His labs were great:  

WBC 8.6
Hemoglobin 9.7
Platelets 303
Ferritin has dropped to 3663 (Normal <400, he was as high as almost 9000)
Bilirubin is UP to 9.4 which isn't so wonderful

He is on a strong steroid, so that suppresses the immune system, his white cell count (WBC) was 10.3 a day earlier.  He told me the Stem Cell Team, during rounds, is 90% sure his symptoms are truly GvHD and they are (and have been since a week ago Monday) treating him with steroids to combat the GvHD until the liver biopsy results confirm their suspicions.  Taking him off Exjade, the first chelator, was the easiest thing to do first.  He is back on the Tacrolimus and was resting very comfortably when Molly and I left at 6:30 tonight.  He was very, very weak today but mentally sharp and positive about his health outlook, counting on a rally soon.

No talk of discharge or surgery.  The team told him there is "no play book at this point," everyone is different and they will do their best to handle bumps in the road as they appear.  They want him to feel better before heading to the OR.

That's it for today, thanks for the read.














Tuesday, February 22, 2011

Holding Pattern

Not much to report tonight, I spent the day at home working on paperwork and made a nice dinner for Kevin and I. 

Steve spent the day resting after a good night's sleep.  Late afternoon he was transported to Prentice on the 15th floor, his old stompin' grounds.  He knew both his RN and his PCT, so he felt like a celebrity.  They are keeping pain and nausea meds going, and he said he feels better than yesterday.  Only one episode of vomiting.  I hope that clears quickly.  He did have Desferal overnight to keep chipping at the ferritin level. 

He asked for IV fluids and has been drinking water like mad. The surgical resident, Dr. Fronza, paid a visit today and said they are a go for Friday, but deferred to Dr. Altman's opinion once she returns in the office tomorrow and evaluates Steve's current level of health.  His hemoglobin is over 12.0....imagine.

Thanks to all of you for your words of concern, prayer and help.  I have been meaning to tell you how flabbergasted I am when I see or speak to people who not only read the blog, but can quote from it!  I've sure learned a lot about medical things, and even more about people.  Closing tonight with Steve's nap companion, our Chocolate Lab, Cooper.

...And Back Again

Sunday and Monday were rough, and I was really looking forward to our home health visit.  The Desferal infused with no trouble on Saturday, yet Steve begged me to take Sunday evening off in case the drug was making him feel even worse.  If you are in on the "please refresh my water" joke, he was in full swing over the weekend.  Our icemaker was running 24/7, and so was I, hahaha.  

His nausea turned into vomiting on Monday, not often, but still consuming him emotionally.  I started playing with ideas of admission.  Dug out some Ativan from backstock to see if that would help his stomach.   He hasn't eaten since Friday.   After home health left, I started making calls to the hospital.  Everyone was in agreement that coming in was a good idea.  Dr. Altman is out of town, and was contacted.

His labs from today show improvement in liver enzymes and more big improvement on the CBC side again.  They did a ferritin level but no one seemed to have the result as of late Monday.  His bilirubin also moved up, bleh.  Much improvement on his "south end" frequency, so some good news there.

Bless Steve's cousin, Bill.  Our sewer line has clogged for the third time since Steve's illness, and Bill was going to come over after work and do the dirty work.  Instead, he became my wingman, and a fine wingman he was!  We got to the ER at Northwestern around 7, got seen at 8 on the Mezzanine Level, and taken to a room in Feinberg around 11.  Prentice is still full up, and the plan is to transport him when room becomes available.

While in the ER, Steve's nausea and pain were well managed, and he was able to chill and even joke a bit.  Dr. Altman called me on my cell phone from who knows where (not Munich, that's later) and told me of her plan.  Our ER doc said Altman e-mailed a "very detailed chart and plan" of Steve's care to them.  (HAHA.) She feels very badly that Steve has been suffering and wants to get a handle on this now.  At first she thought about starting him back on (anti-rejection drug) Tacro in the morning; by the time he got to Feinberg, orders were for the Tacro to start tonight.   She feels that his elevated ferritin lab value may NOT be due to just iron, it may also be from liver inflamation, and the sharp decline was possibly from steriods, not necessarily just the Desferan.  There was mention made of a liver biopsy coming, which would give a definitive answer on GvHD as a cause of the GI issues.

Don't know what this means for surgery this week.  Goodnight.

Sunday, February 20, 2011

Days of ('Roid) Rage

Simply cannot believe it was just Thursday that I last posted.  It has been a whirlwind of activity here.  Steve's ferritin (iron overload) level was not acceptable at such a high, dangerous level.  Normal is <400, his was teetering near 9000.  Iron can deposit in the liver and/or heart and cause organ failure...you get the picture.  He was feeling sicker....

The first dose of Desferal has to be given in a controlled hospital setting for both health and insurance reasons, understandable.  All outpatient facilities at Northwestern as well as Christ were booked for Thursday and Friday, so we went onto a waiting list for inpatient rooms at Prentice/NW.  I was, quite frankly, relieved, as he seemed medically fragile and not at a level I felt able to handle at home.  He doesn't seem well enough to have surgery of any type, so this was a great opportunity to get plumped up and game-ready.  The call came at 10 on Friday (2/18) morning.  He was vomiting at home before we left the house.  ::SIGH::

On a humorous note, this was his 11th admit.  We school that place!  He adjusts the thermostat, switches out the hospital pillow for the home pillow,  I set up his clothes/shoes/blanket.....the intake questions are answered with military execution, and then I had to recite his med names, dosage, and frequency by heart.  I have to close my eyes to do that.  Had an outstanding hospitalist, Dr. Burke, and she was snappin' and tappin' her way through *the process* of hospital admission.  Patience is truly a virtue.  We were told that Steve is one of only 2 patients at NW (think that's right) that have received Desferal SC (subcutaneous).  Basically, they insert a small-gauge needle into his stomach "fat" which does not currently exist, and very, very slowly infuse the med over about 12 hours.  Dr. Altman was on a flight to Munich for a leukemia conference, and calls were made to cross t's and dot i's.  I left at dinnertime.

No one knew how he would react to the infusion due to the Hereditary Spherocytosis and the elevated ferritin and bilirubin levels.  That ALL changed this morning.  Steve's ferritin was reduced by HALF in the first dosage.  UNBELIEVABLE!!!!!!  His hemoglobin is now at 9.4!!  Awesome.  Bili is still over 7.  Of course, he didn't sleep worth a hoot.  Needed a wheelchair to get downstairs for the ride home.  Thanks to Dave S, who was my wingman today, we make a great team! 

Steve is really suffering from the steroids today, and tonight was really tough.  He is on 40mg Prednisone x1 daily, 3mg Entocort x 2 daily, and 5ml Beclomethosone x4 daily.  The second two are often prescribed for Crohn's Disease patients, helps calm the GI.  None of our practitioners are sure why his GI is such a bad state so quickly.  Many possibilities, and we are on course to knock it out.  

If you have never dealt with a steroid patient, well......let's just say it is interesting.  You get screamed at, verbally abused, mocked, criticized, and then for fun, they sob and wail.  Sometimes they are totally silent and demand the same from their caregiver.  Sometimes they are manic and gabby.  Can't eat.  Eat like a horse.  Their thought processes go haywire.  The emotional rollercoaster is awful to watch.  He was afraid we were running out of comfort food today, so I ran to the store and tried to buy food I thought he would like.  So he asks, "what did you buy?" and then he didn't want to eat.  It's a living hell.  I try to give him his meds and he is sick to his stomach.   Yet the meds are to help the upset stomach.   If you get off task with the 'roid dosage, he crashes.

So tonight is dose #2 of Desferal.  There is a little battery-operated pump that will be our bedmate for a few nights.  The Desferal attaches to the iron and causes the body to excrete the iron overload through urine and poop. I can't help but feel that some of his GI disturbances are from both holding and dumping the iron.

We hope to see improvement in his health tomorrow.  I have to get him downtown once before his surgery on Friday  for his pre-op evaluation, which, quite frankly, is a pain in my Lithuanian ass.  Good news is that his INR level, which is the lab test they do to determine bleed-out risk during surgery, is "PERFECT."



Thursday, February 17, 2011

Roll With The Changes

I can't believe how many things have happened since my last update.  Let's see, there was a blizzard, our first-born turned 21, Green Bay won the Super Bowl, and Steve had a MAJOR, MAJOR rally with his health.  

As last reported, Dr. Altman stopped Steve's anti-rejection drug and had Neupogen shots being given daily.  Numbers started creeping up, most importantly his white cell count, which was mysteriously not behaving at all.   Steve's last red cell transfusion was Friday, January 28, and his hemoglobin level was pretty good-ish going into that transfusion.  He has not had ANY blood since that date.  I think 10 days was the record before this.  Steve was sleeping well, eating like a pig, getting chores done (imagine!) and was enjoying feeling well again.  He went from looking sick to looking like a skinny guy.  If you had just met him, you might not know he had even been ill.  His hair, right now, is like puppy fur and doesn't have the reddish cast it used to have.  Of course the grey is coming in, but in a nice manner.

On Monday, February 7, his CBC results were:  

WBC 6.3 (ANC 4.7)
Hemoglobin 7.1 (10 days post-transfusion)
Platelets 120!

Much like a mother sending her child to school for the first time, Steve went alone to clinic on the 10th.  He felt great, and it was time.  He had a bit of a swagger goin', and the staff was happy to see him flying on his own power.   Labs from February 10th:

WBC 8.9 (ANC 7.3)
Hemoglobin 7.0 (hanging in there!)
Platelets 148

However, once the chem panel came back, the tune changed.  Dr. Altman called later that day and said that while it certainly looked like the marrow is starting to work and produce cells in larger quantity, she was concerned about newly elevated liver enzymes and a bump in bilirubin.  She asked that he come to Northwestern on Monday (2/14) and have ultrasound imaging of the liver as well as another blood draw.  Many, many things could be factoring into elevated enzymes.   She told me to discontinue the Neupogen shots as his white count was FINALLY normal.  At that time she also discontinued his magnesium supplements.  That was a long time coming.  (Good mag = good energy!)

As this past weekend progressed, Steve's general health began to tank.  His color got bad.  If you have known him a long time, you know the look.  It's orange.  His eyes jaundiced.  He looked gaunt.  I convinced him to take IV fluids on Saturday and Sunday just to keep dehydration at bay.  He began to tire and take to the bed.  We cancelled dinner reservations at his favorite restaurant, the one he dreamed of eating at while going through chemo.  He wasn't able to stay for Kevin's Boy Scout dinner, had to leave.  He looked sick.  My gut feeling was that we were in trouble.  We were.

Monday's scan was fabulous.  The tech told him he looked great (internally speaking) and that he should be an "ultrasound model."  Seriously, they need bodies when new equipment is delivered and demoed to the staff.  He was flattered.  Labs had been drawn before the scan.  I had a feeling we would go home and get a call back, so I got my Snappy Gutsy Patient Advocate Hat on and ever-so-politely pushed for a visual assessment of Steve's look up in clinic.  We were accommodated in Lurie.  (Thanks to one of my home health nurses for egging me on, BLESS YOU!!)  He had lost 6 pounds in 4 days.  "I'm wearing lighter shoes," he says.

This was one of those (many) times where Steve and I have locked horns.  The staff sees this often in married couples, and while it can be humorous, a la The Honeymooners, they have to have exceptionally fine emotional radar and people skills to read both the patient and the caregiver.  The patient felt he was just fine, only tired.  The caregiver had her arms and legs crossed while cocking her head to the side and rolling her eyes.  Dr. Altman quipped, "I feel some anger?"

At this time I will mention that over the past 2 weeks he has had much increased lower GI activity.  If this was MY health, you would have an Excel chart of time, consistency, color, smell, and some fun pictures of the dog hair on the bathroom floor.   To protect his privacy, I will say that I have been concerned and alarmed.  I report his stats to the nurses and Dr. Altman, they nod in agreement, and we "watch" as this could be the precursor of GvHD (graft versus host disease) which must be nipped as early as possible.  Monday's CBC results:

WBC 8.4 (ANC 6.5)
Hemoglobin 7.7 (Whoa, going UP?!)
Platelets 199

During our visit on Monday, I pressed for a discussion about his iron chelator, Exjade.  While a wonderful, new drug, it does have a black box warning of stomach bleeds and liver failure, but mostly in elderly and medically comprised people.  Steve, since the weekend, was having stomach pain along with the lower GI issues.  We went home with two steroids and a liquid compound that helps the stomach.   The steroids are to fight possible GvHD.

At 9:15 Monday night, Dr. Altman called the house, and she was very concerned.  Steve's liver enzymes were not good at all, very elevated.  (I know jack on this value, hasn't been in my all-star lineup) and his bilirubin had skyrocketed.  A normal bilirubin level in an adult is 1.0.   Steve's had been 1.0-1.5 during his chemo/transplant.  Thursday the 10th it was 1.8.  Monday the 14th it was 7.2. She pulled the Exjade and said, "I want him to have his spleen removed next week." 

Possible reasons for elevated liver enzymes and/or elevated bilirubin:
  • Liver less able to handle toxins from Rx
  • NEW cells are making spherocytes (irregularly shaped red cells) as Mary, our donor, also has Hereditary Spherocytosis
  • Spleen can't destruct the spherocytes fast enough as he only has 20% splenic function after 2 splenic embolizations, which creates a back-up of sorts
  • Exjade (iron chelator)
  • Extremely high ferritin level (iron overload) from excessive red blood transfusions.  I believe Dr. Altman said a normal ferritin level was <400; Steve's is 8000+  This can cause liver or heart damage if left untreated.  The Exjade does not seem to be bringing the level down.
In a nutshell, Steve's transplant is working so well that his other condition, the HS, can't keep up.  Both Dr. Altman and Dr. Jayesh Mehta, Director of Stem Cell Transplantation, conferred and agreed that Steve has significant hemolysis and needed the splenectomy NOW versus later.

Today we had a surgical consultation with Dr. Alexander Nagle, a GI surgeon.  Dr. Nagle is operating on an off day to accommodate Steve (and don't fool yourself, to please Dr. Altman, HAHA! Bless her heart for advocating for him!) and plans on a successful laproscopic procedure.  Steve was told it was a 75+% change of scoping, yet we know there is always a chance of an open conversion.  With the spleen, open surgery is now referred to as a "hand assisted" (GROSS!!!) laparoscopic procedure.  Think Napoleon.  Dr. Nagle will remove Steve's spleen and gall bladder.  There is some indication on the ultrasound of gall stone formation in the gall bladder, so it's gone.  He will also do a hernia repair while he's there.  I am going to try to throw in a tummy tuck and scar reduction if I can, shhhhhh, don't tell Blue Cross.

Dr. Altman quickly ordered 3 major vaccinations and Steve received them this afternoon.  Remember,  his natural immunities were lost during consolidation chemotherapy.  He will have to have all his childhood vaccinations again...normally they don't immunize until the one year post-transplant period, however, a splenectomy trumps the waiting period.  Today (February 16) his labs were improved:

Bilirubin went down to 5.8 from 7.2 (good)
Hemoglobin is up to 9.1 (Olympic)
Platelets are 252 (surgeon will do the happy dance)
WBC went down to 4.8 with ANC of 4.0 (no biggie, she said)
Liver enzymes went down considerably, but still too high

Surgery is scheduled for Friday, February 25

A few closing thoughts on the spleen.  Removing the spleen does not cure anyone of Hereditary Spherocytosis.  The body will still create the sphere-shaped cells.  It will cease to destroy, or hemolyze, the red cells, curing the chronic anemic state.  While Steve's spleen has been the cause of a lot of grief to him, it may have saved his life during his leukemia chemo and stem cell transplant.  Steve's immune system was destroyed from the chemo.  The spleen filters microencapsulated bacterial infections and other harmful infections.  Who knows what he may have contracted without his spleen for protection???  We will never know.  What I *DO* know is this:  If you Google image "Steve Reppen's Spleen," you will see this:




Thursday, January 27, 2011

Next Stop, The Penthouse!

The Robert H. Loooooorie Comprehensive Cancer Center is on the top (21st) Floor of the Galter Pavilion at Northwestern Memorial Hospital.  The hospital is split into two towers, Galter and Feinberg.  Lovely (large!) painted pictures of The Galters and The Feinbergs grace the lobby areas of both, and I am prone to wonder..."geez, how much were you people worth that you gave THIS MUCH DAMN MONEY to Northwestern to get naming rights?!"  Seriously, we are talking large coinage here, people.  I also wonder, as a genetically engineered salesperson, how that sale got pitched and closed.  I then usually inhale, breathe a sigh of contentedness, exhale slowly, and proceed with my smug feeling that this medical facility is better than any other in Chicago, and for the most part, anywhere in the world.  LIKE I want to go to Houston?  ick.


Lurie Waiting Room~West
Lurie Waiting Room~North
Steve had a clinic appointment today, and this was truly a day of phenomenally good karma.  Left the house later than planned, got there on time.  NO backup to make the left turn from Fairbanks onto Huron (no CTA #3 King Drive bus raging toward me, nor 3 or more stop light cycles).  Pulled into the parking garage, got a SWEET spot on 2 (pedway level to the hospital) during peak parking times.  A gift from the gods, NO ONE got into our elevator.....mind you...when Steve was SO, SO sick, we would have coughing, oozing, gross people wedge their bodies in the elevator car.  Sometimes Steve held his breath.  Sometimes he wore a mask.  Today we were like urban cowboys, wooooooooo, express to 21, ride that germ-free pony!  He was called into the lab for his draw quickly, then called into Oncology for his appointment FIVE MINUTES EARLY!  That would be versus one to two hours late.  Often.  The waiting room felt empty, and that was nice!



Today:  It's all good.  Both our APN, Donna G. (who admitted to Green Bay Packer family lineage today) and Dr. Altman were THRILLED with Steve's looks, labs, and progress.  He gained almost 12 pounds in 3 weeks.  His face is filling out, and he is wearing clothes other than his "sick clothes" which were reminding me of old people/nursing home something-spilled-on-the-front-stinky-oily-cheesy-guy stuff.  Vitals are awesome, and we are grateful.  

There have been very wide swings in lab results for many months.  We can have home health (ACL/Christ) give us one number, Lurie (21-Galter onsite) another, and NW Hospital Labs yet another.  So Monday's WBCs (ACL) were 2.9 with ANC of 1.9.  Today at Lurie he was 0.9 with ANCs of 0.4?  Seriously?  That is just jacked up.  So Altman plays her cards as she feels them, and we feel the ACL numbers were correct from Monday.  Spleen measures the same 8-9cms.  Check out Steve's binder that gets hauled from appointment to appointment. -->  America, you've *got* to support electronic medical records, PLEASE!

Altman is backing down on Steve's Tacrolimus to ONCE daily (0.2ml) instead of x2 , and we will monitor for any GvHD symptoms as he gratefully and hopefully ends his anti-rejection medication.  Dr. Altman is complimenting that with a bump to daily of Steve's Neupogen, or "G," which sounds so hip, injections.  We have 3 syringes left, and our refill is $10,000 retail.  I wish I could tell you that was made up.  Tonight I gave him a shot that really hurt him, and it made me feel so badly.  I hate giving the shots, and tomorrow I will ask our home health nurse for some tips.

One of the many things I wanted to do with Steve, after our trying times, was to have some "pub grub" at Timothy's O'Toole's Bar & Restaurant which is a block south of the hospital.  My sister rescued me from Prentice one day for a so-needed break and I knew Steve would love the joint.  Today we got to do just that, and he ate like a pig.  Best part?  On the way back to the parking garage we ran into one of his Prentice Oncology nurses, and we had a chemo homecoming on the sidewalk!  It's an absolutely amazing experience to catch up with someone who was (and IS!) dedicated to your health and life, and just chat up the forward moving vibe.

The Green Bay Packers last went to the Super Bowl in 1997.  I was pregnant with our son, Kevin, at the time.  He was born on June 11, same birthday as Vince Lombardi.  It is Steve's destiny to live to see the Packers play for the Super Bowl again.   Enjoy Steve's moment of dream bliss at Lambeau Field in the dang Club Seats.....


Thursday, January 20, 2011

Steady As He Goes

No news is definitely good news when it comes to cancer.  Steve continues to improve, and we are hopeful and grateful for the little victories and advances in his health.

We are on a 3 week visit schedule to the Robert H. Lurie Cancer Center/Clinic.  Dr. Altman wants us to check in by phone weekly,  just to touch base with her patient.  She decreased his Tacrolimus again today.  He is taking 0.2ml  x2 daily, which is about the amount of vermouth in a dry martini.  I give him a 480mcg injection of Neupogen every other night.   As of this week, home health only comes twice a week for assessments and a CBC and chem panel draw.  Steve still has his triple-lumen PICC line.  We hang a 500ml magnesium IV rider twice a week for sport.  His hemoglobin this morning was 6.8, which is when Northwestern yells, "BINGO" and he takes blood.  He has a standing appointment on Friday mornings at Christ Hospital for two bags of red cells.  If he doesn't need it, we cancel the appointment.  Here's a photo of "The World's Most Expensive Advent Calendar."  Loading up for the week ahead, pills are only twice a day now, at 10 & 10.  Much easier than four times a day!

Last weekend he was physically able to drive round-trip to Madison, Wisconsin.  We took our daughter back to college and spent a night in a hotel for the first time since April of last year.  We were also able to enjoy a wonderful dinner with our friends Gary and Donna Harrison, and the Packers won.  Steve was inhaling appetizers and fried shrimp while the restaurant crowd cheered for the green and gold.  He enjoyed half a glass of Spotted Cow beer, and I helped him by finishing it, immediately after my two glasses of wine.  It will be interesting to see what his weight is next week.  I know mine is up.

Yesterday Steve got his first post-chemo haircut, and the stylist didn't charge him, wasn't that sweet?  We celebrated the occasion with dinner at a nice restaurant in town that he had not been to yet due to his illness.   We ate well and brought home leftovers.  He grazes constantly through the day.

We are expecting extremely cold weather the next day or two, and the good news is that he is not nearly as cold all the time, not layering his clothes and covering up in the chair.  His energy level is markedly increased, and he even puttered in the garage for a while today.

Another wonderful thing we have learned through this experience is that people world-wide are reading this blog, from South Africa to Alaska.  AMAZING.  A big hello to all our new friends in Spain!!!  Blogger has statistics I can follow, and the only thing more fun than seeing all this activity from all these countries is that the MAJORITY of viewers are reading from a Mac, not a PC.  With that in mind, a most heartfelt GET WELL SOON to my former boss, Steve Jobs.  We're pulling for you at the Reppen house. 

Wednesday, January 5, 2011

Less is More!

We are just in from our bi-weekly clinic at Northwestern and have some great news to share.  As always, we are cautiously optimistic and don't want to get too far ahead of ourselves emotionally.

Steve's mouth absess was cause for a bit of attention after my last post.  We were asked to have it assessed, and were allowed to seek out help with our own (local) dental experts.  Our (always!) wonderful Dr. Steve Heaney took us right in on Tuesday of last week and determined it was a bacterial infection, and that the wisdom tooth was most likely fine.  Steve was already responding to the penicillin, so that, too, was good.  Dr. Altman ordered up Neupogen injections as a backup plan to the antibiotic.  That $10,000 of medicine was on chill in the fridge since late September.  I had only jabbed him once back then, so I had to remember how to stab the poor guy, not too fast, not the same spot, pinch up...reminds me of learning to golf.  Wine helps.  

Neupogen is also what Mary needed to take to prepare her body for her stem cell donation.  She injected herself.  Here's a lil copy and paste from an NIH site regarding Neupogen:

Why is this medication prescribed?

Filgrastim is used to decrease the chance of infection in people who have certain types of cancer and are receiving chemotherapy medications that may decrease the number of neutrophils (a type of blood cell needed to fight infection), in people who are undergoing bone marrow transplants, and in people who have severe chronic neutropenia (condition in which there are a low number of neutrophils in the blood). Filgrastim is also used to prepare the blood for leukapheresis (a treatment in which certain blood cells are removed from the body and then returned to the body following chemotherapy). Filgrastim is in a class of medications called colony-stimulating factors. It works by helping the body make more neutrophils.

Since Steve's white count was NOT going up, it was going down and was starting to cause puzzlement and concern.   No immune system, risk of infection, not good.  Giving him Neupogen can cause the spleen to enlarge, so Dr. Altman played this card earlier than planned, if at all.  We began daily injections on December 28.   It worked.

Steve's white cell count on January 1 was 0.6.  On Monday, January 3 it was 1.6, and today it was 3.9!!  His ANCs (absolute neutrophils) are 1.7, which are Olympian!  Now he will get a shot every other day, we are seeing if his body kicks in or if this nice plump number is artificially high.  His hemoglobin is in the high 6's; he has a standing appointment every Friday morning at Christ Hospital for a fill-up.  Platelets are good in the 70's.  Here's the kicker:  That damn spleen got smaller!!!!  It now measures 8cm, versus 11cm just 6-8 weeks ago.  I would love to know the measurement from his April admission, probably a meter!  He laughed AT me when Dr. Altman said 8cm, so I quickly asked when his splenectomy surgical consultation would occur.  Dirty looks were exchanged, and Dr. Altman got out of the exam room before we came to blows.  She will schedule a consult after he is done with his Tacrolimus (anti-rejection drug).  His weight, with jeans, a heavy hoodie, and running shoes, is still only 148 pounds. 

More good news is that we are eliminating one of his "Day 1" drugs, a prophylactic antibiotic (Avelox/moxifloxacin), as well as the penicillin.  Another drug (Ursodiol) has gone from x3 daily to twice, and his Tacro was dropped to 0.6ml from 0.8ml.  I got in the house and, like a mad scientist, rearranged his med schedule and "advent calendar" of drugs.  We are also extending out our visits to the Hematology/Oncology clinic at Northwestern's Lurie to every THREE weeks, hooray!

Thanks for all your positive thoughts, prayers, and juju.  Please send some the way of my online friend, Greg Dymerski, who is my inspiration for this blog.  Greg is also an ALL patient in the Pacific Northwest, and he has had a set-back in his recovery.  You can follow and encourage Greg by following his blog, "The Long and Winding Road."  The link is in my bio.

Peazzz out!