A Vote for Discharge

One of the infectious disease doctors who treated Jeff had never before seen a case of chicken pox in an adult who’d had it as a child!  He believed Jeff’s case was very rare, even among bone marrow transplant patients.  Its rarity caused reluctance on the part of some hospital staff – doctors and nurses – to believe the diagnosis.  The infectious disease doctors and Jeff and I are convinced. 

Spots erupted in waves over four days, spread from torso to head, then arms and legs.  It was accompanied by fever and nausea.  So far he has been spared the excessive itchiness that our children experienced 20+ years ago when children still got chicken pox.  (Could that have something to do with the IV anti-viral medication?)  And, unlike our childrens’ cases, the virus settled in some of his organs, causing abdominal pain which was treated with Oxycodone.

Jeff’s last stay at St. Mary’s Medical Center a year and half ago was for DVT (Deep Vein Thrombosis) which was treated, in part, with heparin.  On this visit, his usual baby aspirin was replaced with an order for three heparin injections into his stomach per day.  After only two doses, he got a bloody nose.  When the nurse came at him with the third dose, he refused it.  I am so proud of him for being his own advocate. 

Before I left him on Monday night, his fever had spiked to 102.3 and continued until early Tuesday morning.  Nurse John said he would not be permitted to go home until he was fever-free for 24 hours. 

Dr. Poporad has different standards.  He told Jeff, “Go home.”

“Really?!” Jeff said.

“You can stay, if you want to.”

“No, thank you!”

Jeff asked whether he could vote and was told yes but he should stay away from babies under six months old and pregnant women. 

I picked Jeff up at the hospital and drove to the Morrisville Library, our polling place.  I’d already voted early in the morning.  We arrived at a good time - there were only about 10 or 15 people ahead of him in line.  We were on the lookout for pregnant women.  Jeff recognized our neighbor, a liver transplant patient, immediately behind him in line.  Geez!  Of course, she is immuno-suppressed, too.  Jeff told her he had chicken pox and that the doctor cleared him to vote.  As they chatted, I kept thinking it was maybe not ideal for these two to share space.

Jeff’s fever did not return.  He tells me that the organs under and behind his rib cage feel bruised or maybe sore like a pulled muscle.  The discomfort extends front to back.  I am worried about his gall bladder although I am trying to take Dr. Poporad’s view - that the virus sat on/in those organs thus causing the pain.  The ultrasound did not show gall bladder disease and was, we learned, inconclusive for stones.  The pain should lessen each day.

My honey is so glad to be home!  And I am happy and relieved and ready for some good sleep!

An Expensive Case of Chicken Pox

"It's about time for another blog post," I told Jeff.

"What are you going to write about?" he asked.

"Oh, I don't know. Our last post was a litany of upcoming doctor visits, cataract surgeries... Now they're happening and all is good, your blood counts are good. I'll mention we have a new blog reader in Sweden who probably needs prayers.  If you think of anything I should write about, let me know."

Have I ever had to search for a blog topic?  I considered posting a brief message, "Boring is good." but instead decided not to write anything until after Oktoberfest on Saturday night. Six years ago Jeff was diagnosed with MDS just before Oktoberfest and this annual tradition has served as a sort of milestone marking Jeff's survival since diagnosis.

Well, we missed Oktoberfest.

Jeff had a low-grade fever Friday morning but thought he was well enough to watch our granddaughters. On Friday afternoon he texted me to say he'd called Son Kerry at work and asked him to relieve him of his childcare duties because he was not feeling well. Wow!  It must be bad. Jeff hadn't felt well for several weeks and had intermittent headache, abdominal pain and fever. I got home from work and saw his bright-red face, took his temperature (100.6) and heard that his stomach pain - just under the rib cage - was worse. We headed to St. Mary's ER.

As I slipped the hospital gown onto his outstretched arms I noticed a couple of spots on his chest. "What's that?" I asked.

"Don't know," he mumbled.

I tied him into his gown and promptly forgot about those spots. Jeff was instructed to drink contrast for a CT of his abdomen. We were told tests with contrast are usually avoided if a patient has kidney issues. Oh, well.

Jeff hadn't eaten, had very little to drink all day and several vials of blood had been drawn so when an IV was started he had a Vasovagal Response. His skin turned an odd yellow color, eyes rolled back in his head and he began to convulse. One nurse in the room quickly became four or five.  After several long seconds, I noticed Jeff's eyes open and I walked into his field of vision.  I watched, fascinated, as he struggled to bring his eyes into focus.  Full awareness returned suddenly and he said, "Did I pass out?" And then, to the staff, "Wasn't that exciting?"

A nurse asked him if he ever had trouble getting an IV and added, "You should be a pro."

Jeff replied, "No. This isn't even my first IV this week!" (Wednesday was his first cataract surgery.)

The episode earned him the use of a heart monitor.

Hours later we learned the CT scan showed inflammation around the pancreas and swollen lymph nodes. Jeff was admitted and, although tests showed no infections were present, antibiotics were begun. Evidently, it is sometimes difficult to detect infection in an immuno-suppressed patient.

Son Kerry and Daughter-in-law Theresa live close to the hospital and offered me the use of a bed. I snuck in at midnight - very, very grateful for that bed.

Saturday morning I noticed a rash on Jeff's back. I alerted the nurse. "It's not hives, exactly," I told her.

"No," she agreed. "We'll have to get the doctor to look at that."

I consulted the blog to see how his last allergic reaction expressed. During a hospitalization in January 2015 he turned very bright red from an antibiotic that his bone marrow donor, Nicole, is allergic to.

A couple of docs looked at the rash and gave no diagnosis.

Meantime, an ultrasound of Jeff's gallbladder was done which we later learned showed gallstones.  These were not a concern right now.

Although I'd planned to go home around noon, there was a possibility of discharge so I waited for a determination. Late in the afternoon Infectious Disease Specialist Dr. Poporad arrived with many, many questions about Jeff's symptoms in the previous several weeks and about his current symptoms. The man reminded me of TVs Dr. House who believed "patients lie." We didn't mean to lie but we had almost forgotten about those two spots I'd noticed Friday night. He returned to some of the same questions again and really made us think.

"Are you sure there was no rash when you arrived at the hospital?" he asked.

"His face was bright red but it didn't look like these spots," I reported.

Jeff said, "What about those two spots on my chest?"

Dr. Poporad said, "I really think you have chicken pox!"

Jeff had chicken pox as a kid.  So did Donor Nicole. Dr. Poporad said Jeff's was an unusual case because his immune system - at five years old - is not normal. Jeff did not get shingles like most adults who have the chicken pox virus present in their bodies. The spots are on his back, face, scalp, mouth, ears, chest.  Dr. Poporad believes the abdominal pain is caused by the virus. Jeff, remembering our kids lost a week of school when they had chicken pox, asked how long his hospital stay would be.

"I haven't decided yet," Dr. Poporad said with a grin.

The doc left and immediately nurses swept in with the news that Jeff's room was being upgraded to a double-doored, private, negative-pressure room (which happens to be more spacious and has a great view of the fall foliage at Core Creek Park). Antibiotics were stopped, an anti-viral called Acyclovir (familiar from transplant and recovery) was started.

Jeff noticed this room had a bigger white board for information about his care. The headings included My Physician and My Nurse and Daily Goals. Jeff read "I prefer to be called... Hmm... Grandpop!"

Overnight the abdominal pain escalated to 8 out of 10. His temperature was 102. He waited several hours before he decided to "bother" the nurses for pain meds. Oxicodone, Tylenol and also Zofran for the nausea made things manageable today. All three of our children visited during a good period this morning. An overzealous nurse required us all to don gown, gloves and duck-style mask - even though we'd all had chicken pox. Daughter Kim decided a family portrait was in order. The kids brought lots of that good medicine - laughter.

Dr. Poporad later told me to get rid of "that stuff." The doctors and nurses gown and glove because they are going from room to room. One nurse's aide who hasn't had chicken pox refused to come into the room.

The GI doctor ordered a Lyme panel!  A cardiology consult was ordered because of the fainting episode, because his heart "skipped a couple of beats" while being monitored and because the virus could potentially damage the heart. An echocardiogram has been ordered for tomorrow. Geez! I hope Jeff doesn't add any more challenges!

Dr. Poporad observed the spread of the pox to arms and legs, more postules. He discussed the ways in which Chicken Pox is harder on adults. I told him I was glad Jeff is here at the hospital and that we weren't trying to deal with it at home like we could with our children. The proper meds are being administered (including his post-op eye drops) so we just need to wait for healing.

Jeff's goal is to try to eat more.  Applesauce is not a great dinner but it's a start.

Medical Muck and Color Wars

Work interrupted:

Blood and urine every two weeks for kidney doc,

three visits with same.

Blood for the oncologist - twice,

dental work,

prep for cataract surgery (three appointments),

dermatology (another spot),

vein specialist,

pick up prescriptions.

Work some.

More medical muck.

There.  I think I’ve caught you up on Jeff’s daily activities.  Dr. Pat doubled his dosage of the ACE inhibitor in the hopes of improving his kidney function.  This dosage makes him droop and drag a little, another impediment to a full work schedule.  His frequent sighs, “What are you going  to do with me?” have to do with the time involved in taking care of himself - and his anxieties over his light work schedule (reduced income) - and whatever the next challenge will be.  Right now, that is cataract surgeries, one eye at a time.

Between April and October Jeff’s vision deteriorated quickly.  His complaints about cloudy vision became more frequent.  Dr. Pendse suggests taking care of this soon because it will continue to progress quickly.  As he measured Jeff’s eyes he asked, “Did you take a lot of steroids?”  Of course.  He says Cellcept may also be a culprit.  (Jeff still takes Cellcept for GVHD.)

Jeff learned about a newer type of cataract surgery that falls outside of health insurance coverage and would cost an additional $5,500.  Yikes.  Jeff says he wouldn’t consider it but I wondered what the benefit would be.  The lens has three rings with different magnification.  If it doesn’t work, you have glare - three rings of it - particularly at night.  Dr. Pendse has performed this surgery on some patients for whom it did not work and then had to reverse it.  Dr. Pendse felt Jeff would likely have those issues and, therefore, was not a good candidate for spending the extra bucks.

The nurse told Jeff that, for the type of cataracts he has, surgery makes a huge impact on color perception.  “You will go home the day of your surgery and realize that you have not been seeing colors clearly.”

Well, that explains the arguments we’d had.  It happened a few times.  We disagreed about the color of something - I cannot recall what things – and Jeff got so upset that I just let it go.

For a week after each surgery Jeff will be on light duty – no bending over, no lifting more than 25 pounds.  More work interruptions but the result will be 20/20 vision.

In our circle of friends and family, we have had two losses – the husband of a co-worker – he’d survived 10 years after his triple organ transplant, and my sister’s father-in-law – an MDS patient.  We send prayers of love and comfort for their families. 

Joys:  Our granddaughters stayed with us for a week while their parents traveled to Germany.  We danced at Niece Becky’s wedding.  Out-of-town friends visited.  We took our first bus trip since chaperoning our kids’ field trips years ago - to Storm King Art Center in the Hudson Valley, NY.  A Facebook memory popped up this week reminding us that three years ago we met Nicole and her husband at a Gift of Life fundraising walk.  Thinking about these joys reminds me of what Jeff told Nicole at that first meeting, that in all those moments – big and small – we are thankful for her generosity.

Enjoy Yourself While You Can

It’s not exactly what you want to find in your fortune cookie when you are awaiting results from a biopsy.  Jeff texted a picture of his fortune, “Enjoy yourself while you can.” He thought, “Oh, boy.”  Daughter Kim replied, “Geez.”  Fortunately, fortune cookie fortunes do not flawlessly foretell our futures. 

One afternoon, I was reading with three-year-old Rosie when Grandpop Jeff called.  I am not sure whether Rosie heard the word “hospital” or sensed something in my tone but when I ended the call and picked up our book she asked, “We’re okay, right?”

"Yes, we’re alright.”  A fleeting thought occurred to me.  How would she take it if she saw her grandfather sick?  What would we say to her when we ourselves wouldn’t know what the future holds? 

We’re alright. 

We’re waiting. 

I was scheduled to visit my sister, Tracy, in Colorado.  Jeff and I decided there was no reason to postpone the trip and so I went.  While I was away, the biopsy results were posted online.  It had been more than a week since Jeff’s procedure.  I read the report and could now expand my vocabulary with the help of Google:  “Membranous Glomerulopathy” and “Tubular Atrophy and Interstitial Fibrosis.”  I called Jeff, prepared to share my newly acquired understanding of kidney disease.  Although I called at what I believed to be a convenient time for him, Jeff did not answer my call. 

It turns out there was a good reason for that.  Granddaughters Rosie and Penny were playing in our living room.  Son Keith was in the garage working on his classic car.  Keith yelled, “Dad!” Jeff left the girls in the house and ran to the garage. 

Keith had crushed (and nearly severed through) two of his fingertips when he tried to catch a falling car part.  Keith refused to go into the house; he might frighten the girls with his grisly injury.  Jeff told him to lie down on the floor of the garage and raise his hand. Then he went inside to get a towel to wrap Keith’s hand and call 911.  Jeff’s distress was reflected by Rosie’s screams.  Jeff held 14-month-old Penny and stood in the entry where he could watch Keith for signs of shock and keep an eye on Rosie in the living room.  As soon as the ambulance pulled away, Jeff returned my call.

Keith's injury provided a diversion of sorts. The next morning a skilled surgeon worked on his broken fingers, sewed him back together with about 25 stitches and a “bionic” fingernail.  He spent two nights in the hospital receiving IV antibiotics.  His fingertips are saved!  Splints, PT and time will heal them. 

Jeff was busy seeing to Keith and it was a couple of days before I told him that the pathologist’s report was available online.  It was another several days before Jeff’s appointment with the kidney specialist, Dr. Pathalpati (“Dr. Pat”).  Jeff wanted me to accompany him so he’d made the appointment when I would be back from Colorado.  We were both anxious to hear Dr. Pat’s interpretation of the results. 

Dr. Pat identified three possible causes for the kidney disease – the cancer itself, the cancer treatment or Graft vs. Host Disease.  Jeff has had some of the idiopathic conditions of Membranous Glomerulopathy – DVT (blood clot in the leg), blood in the urine, high cholesterol (attributable to the immunosuppressant, too).  The kidney damage (thickening of tissue) prevents proper filtering of the blood and “spills” out too much protein.

There is some good news.  1) No kidney cancer.  2) Dr. Pat feels Jeff will respond to an ACE Inhibitor (commonly used for high blood pressure) to treat the disease.  3) Dr. Pat is glad we caught it when we did.  She said, “In another year, it would have been much, much worse.

The tricky part:  Jeff tends toward low blood pressure and the ACE Inhibitor will lower it.  His dosage is the lowest possible, twice a day.  If it makes him dizzy, Dr. Pat may decide to give it only once a day.

The bad news:  1) +1 pill.  2)  More blood and urine tests in 2 and 4 weeks.  3) Another doctor visit in a month. 4) Dr. Pat may order an ANA/ANCA test to further explore the positive lupus result from his labs.

Dr.  Pat instructed Jeff to keep the same dietary restrictions she’d given him last visit (no nuts, shellfish or beef) and added, “No soup unless you make it yourself.”  Salt, then, too.  Okay. 

I was happy to report that Jeff was “willing to make those changes” and was “making good choices."

Jeff snapped, “Well, I am NOT enjoying it!” 

For everything Jeff has gone through, he has every right to be cranky once in a while.  However, he rarely is cranky and his reaction was a little embarrassing.  I calmly responded to his outburst, “I didn’t say you were enjoying it.  I said you were willing to make those changes.  A lot of patients are not.”  I reminded him again that he often enjoys his food, even if he is missing some of his favorites.  Dr. Pat listened but did not say the words Jeff wanted to hear, “Eat anything you want."

Maybe I should expect to see more of Mr. Cranky Pants.  It’s coming up on “Doctor Month”.  In addition to the several visits already scheduled, he knows he needs cataract surgery (his eyes seem to be getting worse, quickly) and he only just finished his dental appointments to take care of cracked teeth (oh, that chemo) when a cheery reminder card arrived with the message, “It’s time for your next dental appointment.”  Jeff has not worked his regular schedule for a few weeks because he has had labs, procedures, doctor visits.  He is frustrated.  I can tolerate his grumpiness.  After all, it’s good that he feels like working.

Prayers for patience, please, and that Jeff sees improvement in his kidney function.  And, you know what?  That fortune cookie offers advice we all should heed, “Enjoy yourself while you can!”

a.m. Stress, p.m. Relief

We won’t have the results of Jeff’s kidney biopsy for several days and yet we both feel a little less stressed being on this side of it.  As usual, Jeff’s levity helped make it fun to spend time with him – even in the hospital.

Nurses prepped Jeff for the procedure and then we waited.  Jeff passed the time by eavesdropping on the nurses’ conversations.  Evidently, there was a problem with one of the patients and things were backing up while the issue was addressed.  Unsure what to do about the logjam, one nurse said, “We just need to get someone out of here.” 

“I’ll go,” Jeff hollered. 

They weren’t having it.  Eventually, Transport wheeled Jeff into CT/Radiology and I was asked to come along.  As he was positioned between privacy curtains and I took a seat, he asked me, "Are you nervous?" 

"Who, me?” I laughed at his misguided concern.  (He later told me that I looked scared.) 

I recognized Nurse Jennifer, the mother of one of Keith’s classmates.  She glanced at the monitor and did a double take.  “Are you feeling okay?” she asked. 

“Yes,” he said. 

His pulse was “in the 40s”.  Speaking raised his pulse to 50 and since he wasn’t feeling faint, she said all was okay.  As she attached EKG stickers, we talked about our kids.  Then she carefully explained everything that would happen.  Jeff would be anesthetized into a “twilight” state and they would tell him everything they were doing as they did it.  He would lay on his belly on the CT table the whole time and they would put him in the CT doughnut periodically to take pictures and check the positioning of the biopsy shaft and needle.  Jeff is usually a just-do-it-and-please-don’t-talk-about-it kind of patient so I didn’t think a blow-by-blow was a good idea.  It turns out he remembers telling the nurse that he would try to smile for the “pictures” - and nothing else.  In fact, he slept before, during and after the procedure. 

It took about an hour.  Jeff was asleep when they wheeled him into the holding area.  I touched him and he woke up.  A privacy curtain separated us from a loquacious man in the next bay.  Mr. Mumble would be a good name for the man.  Jeff has great difficulty in understanding anyone who speaks with an accent and yet he was responding to Mr. Mumble’s incoherent questions and commentary.  I felt like I was in the Twilight Zone.  (What did he say?)  Jeff kept answering “Yes” and “Hmmm” in a sleepy voice.  At one point Mr. Mumble said very clearly, “I’m tripping.”  Later, “This is really creepy.”  Mostly, though, I understood none of what he said. 

Nurse Jennifer was amused at the man’s “tripping."  I leaned in to Jeff and said, “They gave him better juice than they gave you.” 

Nurse Jennifer replied, “He hasn’t been given anything yet."

Jeff had to stay in recovery for three hours.  I noticed his pulse was 39 at one point as he slept –mouth agape - but when the menu arrived, he studied it for quite awhile and his pulse roared up to 52.  It was funny to watch the relationship between his activity (or inactivity) and his heart rate.  Eating raised his pulse to 139. 

Discharge instructions included not to worry about bloody urine in the first day or two, no driving until tomorrow.  Jeff was surprised by how high up his kidneys are.  He’d imagined they were just above the beltline.  When he showers, the bandage can come off.  Thereafter, BandAids will do.  He should be back to normal after a couple of days of light activity. 

Now we wait.