Christmas Gifts

It wouldn’t surprise me if Jeff asked Santa Claus for a break from doctor visits for the holiday season.  We cancelled his December 29^th appointment with the family doctor because the abdominal pain that hung on for at least two months (before and after the hospital stay for chicken pox) seems to have abated. 

Visits to the kidney specialist and the gastroenterologist – bad news and good news respectively – closed out the year 2016.  For some reason, we both had been experiencing some anxiety about these visits.  Sometimes we are able to take the uncertainties in stride and sometimes they get the better of us. 

Jeff is officially old.  We had to buy a blood pressure cuff for when the Lisinopril – which has been increased to 15mg a day (from 10) – makes him dizzy.  His blood pressure tends to be low and with an ACE inhibitor, it is even lower.  This medication is supposed to help the proteinuria but after the last dosage increase his urine protein was higher instead of lower.

Patients with proteinuria, according to Kidney Specialist Dr. Carpenter, fall into one of three buckets:  one – it goes away, two – it stays the same, or three – it progresses and can eventually cause kidney failure.  Dr. Carpenter didn’t want to say which bucket Jeff fits in.  I asked if we could choose.  Another urine test in a month will tell us whether a referral to a city doctor is in order.

During Jeff’s hospital stay in November he’d had an irregular heart beat and he passed out in the ER so an echocardiogram was ordered as a precaution.  All good there!  The cardiologist noted Jeff’s low pulse, “Like an Olympic athlete!”  Since then Jeff has often reminded me (with a weak voice while falling asleep sitting up in a chair) that he has “the heart of an Olympic athlete and the body of an 80-year-old.”  He’s so cute. 

Gastroenterologist Dr. Frank had good news for Jeff.  A follow-up colonoscopy after last year’s removal of a “very large, precancerous polyp” revealed only one small polyp - which was also removed.  And he heard the words he so hoped to hear, “Come back in five years.”  Joy!!!

He was not, however, able to pop up and leave right after his procedure.  When his nurse showed me to the recovery area I noticed his blood pressure was 73/58.  I thought maybe I was reading the wrong area of the digital screen.  Nope.  The nurse told me it had been lower and it was slowly coming up.  He couldn’t leave until his blood pressure was at least 100/xx.  It went up to 85 which Jeff attributed to seeing me (he’s such a charmer).  After awhile of slow progress, the nurse suggested a little walk.  He was dizzy but the walk did the trick.  It went up to 99 and then 101!  Home Ho! 

On the way home we saw Neighbor Carmen outside and asked her about her husband - and the ambulance we’d recently seen at their house.  He has had a couple of falls from which he could not right himself.  Jeff offered to rake the leaves in their front yard.  Although he wasn’t supposed to work the day he’d had anesthesia, he went right over to do as he promised.  I thought helping a neighbor might wait for another day.  Silly me. 

Jeff winks his bad eye closed when he finds his poor vision particularly annoying.  He does this far less frequently than he did right after his cataract surgery and complains about it far less often.  He must be getting used to it. 

Despite the challenges, 2016 was a terrific year and we are blessed to have the gifts of family, friends and each other.  May you all find gifts of the spirit under your trees this Christmas!

Pillow Talk and Gratitude

“We’re lucky,” Jeff said during early morning pillow talk.

“I know,” I said.  “But why do you think we are lucky?”

“Because here we are, next to each other.”

Sweet.  That’s what I was thinking, too. 

Jeff is recovering from his second cataract surgery which, unfortunately, did not have as good results as the first.  After surgery, the vision in his left eye became so impaired that he doubted he would be able to read the big “E” on the eye chart.  An extra visit to the eye doctor relieved some of his anxiety (he could, in fact, read the “E” and, with a special paddle with pinholes, he could read the whole chart).  However, he will need another surgery, probably in January – rather than at six months as Dr. Pendse predicted on the day of his surgery.  Dr. Pendse described the eye as having the shape of an M&M candy and said he was unable to remove as much of the cataract as necessary from behind the “candy coating”.  He needed something stable on which to attach the new lens.

You might think that there would be driving restrictions for someone whose vision was suddenly made worse.  No.  None were given.  I drive whenever we are together anyway because Jeff often has fatigue.  We’ll see whether he will be able to work since his prescription glasses don’t help him right now and he can’t be fitted for new glasses until the left eye is dealt with.  Sometimes the poor vision in that eye frustrates and annoys him.

Jeff took advantage of this week of recovery to do some errands.  Yesterday, after his blood draw for Dr. Pat, he planned to get his driver’s license picture taken and then get a haircut.  He joked, “Will it look suspicious if I get my haircut after my driver’s license photo?  Like I’m trying to change my appearance?” 

I said, “Oh, you know what?  You should probably have ‘Organ Donor’ removed from your license.” 

Jeff slid the license paper aside to reveal the flyer on organ donation.  He studied the pictogram and quipped, “Well, let’s see.  Maybe there’s something they can use.”

I said, “I don’t think so.  Once you’ve had cancer…”

Jeff seemed to ignore me.  “Liver,” he read, “no.  Kidneys, no.  Pancreas, probably not.  Eyes, no.  Skin, no.  Veins, no.”

I joined in the game, “Lungs.  Your lungs are okay!”

He did have the Pennsylvania Department of Transportation remove “Organ Donor” from his license but not before confirming that he really, truly could never again be an organ donor.  It must be a hard realization to come to after years of willing inclusion. 

Daughter Kim suggests her dad grows his hair out to 8” or more so he could donate his hair (as she will soon do).  Ha!

We are thankful for willing donors – those who list “Organ Donor” on their driver’s licenses on the chance they could be of some use after their own demise.  And we are grateful for those who swab their cheeks for potential bone marrow donation – and even more grateful for those who answer the call and give the gift of life.  We hold Jeff’s donor Nicole in our hearts this Thanksgiving.  Her marrow makes possible our pillow talk and laughter and life.

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.