Sweet Swedes

Jeff’s hospital stay this month cost him valuable time in completing the little cherry tables he was making - a wedding gift for my nephew and his wife (Mr. and Mrs. Claus) and another for his bone marrow donor, Nicole.  We’d been planning to deliver the two gifts on a road trip to Nicole’s home near Atlanta, Georgia, with a side trip to the Claus home in Greenville, North Carolina.  The swelling in Jeff’s leg was showing no sign of improvement and I assured him that we could make the trip without the tables and deliver them at some future date, if necessary. 

Jeff was highly motivated to complete the projects and his recuperation was centered around what he felt able to do each day in order to get the job done.  Kim offered a day’s help and the two of them got the tables assembled and ready for finish.  Jeff applied the finish coats with only just enough drying time before our departure.

We are still glowing with the love shown to us by Nicole and her beautiful family.  Nicole and her husband, Scott, opened their hearts and home to us and we instantly felt as though we were visiting family.  In fact, we saw actual relatives, too.  Jeff’s cousin, Phil and his wife, Lori, live in the Atlanta area and they joined us at the Georgia Aquarium on Saturday.  Their daughter, Piper, and Olivia got along great and the two young families found that they had a lot of common interests.  The aquarium provided excellent photo opportunities and my phone was busy all day capturing the fun and, we’ve been told, pictures of Jeff and Nicole looking like siblings or cousins.

Nicole and Scott hosted a dinner party on Sunday so that we could meet Nicole’s family.  They had walked with Nicole during the bone marrow donation process and it was fascinating to hear more about the experience from their perspectives.  We met Nicole’s Aunt Janine whose loss of her sweet baby Nicholas when Nicole was a teenager inspired Nicole’s involvement with Team in Training and ultimately inspired her to swab her cheek for the Gift of Life bone marrow registry.  Janine and I blubbered in each other’s arms before getting to know a little bit about each other’s caregiving experiences.  Janine shared a photo album of Nicholas, some pictures showing a happy, healthy boy, and others while he was in treatment – still happy.

We met Nicole’s Aunt Karen who thankfully had not moved from the address Nicole listed on her bone marrow registry paperwork (all her other contacts had moved!).  Karen honored little Nicholas by bringing M&M’s, a favorite candy of his. 

As I suspected, Nicole’s mother, Debbie, had some misgivings about Nicole donating marrow.  She worried about Nicole’s health since she had given birth to Olivia barely a year earlier.  Still, Debbie would not dissuade her daughter from doing something she’d decided to do and she accompanied Nicole to New York for the pre-transplant testing and again for the actual donation.  Debbie was alone for most of the two and half hours that Nicole was under general anesthesia - a very stressful time, indeed. 

Nicole’s grandmother and other family members asked questions about Jeff’s experience and how he is feeling now.  I think it was surprising to them to learn that Jeff’s chimerism tests show his blood is 100% produced by Nicole’s marrow.  Jeff refers to the education we have gotten as a result of his illness as “Biology 101.”  We shared a little of our enhanced, practical “Biology 101” education.  For all the science involved, it is still a miracle that Nicole’s marrow, collected in a NY hospital and delivered in a plastic bag to the Hospital of the University of Pennsylvania in Philadelphia, dripped into a Hickman catheter in Jeff’s chest over a four-hour period, then found its way to where it needed to go to begin making blood, and that it continues to make healthy blood today.  They seemed to share our awe and our joy and we are very glad to have met them.

Since ethnicity matters in bone marrow transplantation, we were interested to hear about Nicole’s ancestry.  While Jeff is German-Irish-French, Nicole is Swedish-Polish-French.  Fascinating!  We learned that Nicole’s great-grandmother lived to age 93.  I think that bodes well for Jeff’s longevity!

We loved being honorary members of the family and enjoyed staying in Nicole and Scott’s beautiful home.  Nicole and Scott are good parents and their home is a joyful one.  We were treated to an earnest rendition of “Let it Go” from Frozen by guitar-toting 5-year-old Olivia.  On our last evening we gathered on Olivia’s bed while 7-year-old Evan read The Butterfly and the Carpenter Bee, the book we wrote for the children to show them what their mother’s gift means to us.  It was beautifully read and I can’t believe I didn’t cry.

We had an easy two-day return trip to Pennsylvania.  We traveled on a Monday holiday (President’s Day) so traffic was light.  It snowed overnight Monday night so schools, businesses and the federal government were closed on Tuesday.  Again traffic was light and the roads clear and dry.  We got home early Tuesday evening with ample time to crank up the snowblower.  I texted Nicole:  a picture of Jeff at the machine, snow flying, with the caption, “Georgia on our minds.”  Having met Jeff’s blood sister, we will always feel a tug south.  We look forward to hosting them sometime soon and continuing our quasi-familial, serendipitous relationship.

A Week of Progress

"What did you do today?” I asked Jeff when I got home from work.

“I walked through my shop,” he told me.

“Oh? And what did you do there?” I asked.

“I walked through my shop.”

That was last Monday’s big achievement.  On Tuesday he did some light housework and spent about a half hour in his shop which ended shortly after he gave himself an abrasion with the orbital sander.  He was relieved that it only bled a little and not onto his work.  By Wednesday he could do some errands and he spent an hour on the stool in his shop.  Thursday after his follow-up doctor’s appointment (all good news), he spent the rest of the day in his shop and then he walked .7 miles to the car shop to pick up his truck which was in for inspection.  This was a route he has taken before but it was in the 20s and he has a limp.  He said it felt as if it took a very long time to get there.  He hobbled across Bridge Street at a crosswalk during rush hour but wasn’t fast enough for one impatient driver who raced by as soon as he possibly could.  Jeff related this to me while simultaneously demonstrating his ankle’s slightly improved range of motion.

At Jeff's follow-up appointment, Dr. Sullivan said, "I told you that you're not allowed to do housework, right?"

"You're kidding!"  Jeff was alarmed.

"Yes, I'm kidding," Dr. Sullivan said.

In addition to dispensing humor, the doc gave Jeff the go-ahead for a upcoming road trip to see his donor, Nicole.  I had been worried that inactivity, long hours spent in the car, might cause more clots to form.  Dr. Sullivan said to stop every couple of hours to walk and all would be fine.  He also defined "awhile" (as in how long Jeff's leg would be swollen) as "two more weeks."  You might think the swelling would go down gradually but it does not seem to be showing any signs of diminishing.

Sunday we attended church after having missed a couple of weeks due to Jeff's illnesses.  Many people welcomed Jeff back and were glad to see him looking fit.  The older women gathered around to ask about his hospital experience and which blood thinner was he on.  As we got in the car to go home, Jeff grumbled, "Great.  Now I have something in common with the old ladies."  There are certainly worse things.

Sadly, we had learned that Mike, our church's "second miracle," had died after surviving just a few weeks with a new pair of lungs.  The news hit Jeff, me and our entire congregation quite hard.  There was audible distress in the sanctuary as we heard the news and felt deeply sorry for his family.

We ask for prayers for Mike's family as well as all those who have lost loved ones to horrible disease.  And prayers, please, for safe travels for our trip to Georgia to see Jeff's blood sister, Nicole.

Home Again, Home Again Jiggity Jig

Jeff was moved from ICU to the Telemetry Unit late last night.  I arrived at St. Mary Medical Center this morning to find him looking much, much better and much, much happier.  Unfortunately, his leg and foot were more swollen and harder and hotter than ever.

A text exchange with Dan answered the burning question, “What is Telemetry?”  We had a pretty good idea already since my mother had been in the same unit a few years ago.  Jeff’s sense of humor has returned - welcome evidence of his improved condition.  He quipped, “I thought I’d be learning how to read minds here.” 

Yesterday Dr. Kravatz led us to believe that being symptomatic would delay Jeff’s discharge.  Today, however, Nurse Chinnamma assured us that it takes “awhile” for that to clear up.  Jeff had only gotten out of bed one time yesterday to use the bathroom and walking had been very difficult so it seemed to us that he was not yet fit to go home.

Kim came for a visit this morning and at lunch time, she and I went to eat in the cafeteria.  Naturally, that is when Jeff’s doctor came to his room.  Dr. Raghan was not concerned about the swelling, even after Jeff pointed out that the leg was much larger compared to his right leg and that it was worse today than yesterday.  It takes a while, evidently.  Jeff asked all the questions I would have asked if I had been there (good job), like how they know they got all the clots.  Dr. Raghan said they did an ultrasound after his procedure yesterday morning and everything was clear.  Dr. Raghan told Jeff he could be discharged.  This was a surprise since he had not yet taken one of his new pills (something we were told was necessary before discharge).  Well, we told ourselves, “Discharge Today” could mean 9 p.m. so we tried to remain patient.

Jeff was told he could get dressed.  We had to unlace his sneakers to get the foot inside.  Once dressed, he sat on the edge of the bed.  In came two older gentlemen looking for “Harry.”  They were very confused because they had just gotten Harry’s room number from the information desk. 

Jeff said, “Harry isn’t here but if you want to visit me, come on in.  I’m  Jeff.” 

Then Jeff and I both realized we knew Harry!  He was Jeff’s roommate on Thursday.  We were able to tell the men that Harry was in Room 254, not 264.  It is like being in Home Depot; people are always asking Jeff where to find things.

Within a short time Nurse Chinnamma came in with his new Xarelto pill, disconnected his heparin and IV fluids, then she left the room with a promise to bring discharge papers.  I have never seen a speedier hospital discharge (and I have seen many).  It was hard to believe it was happening.  Surely we’d have to wait for transport.  That could take a long time, hours even.  Not this time!  Nursing Assistant Kel came with a wheelchair and took Jeff himself.  Kim left to bring the car around front and we beat her to the door by several minutes.  Whoosh!  In no time, we had Jeff home and nestled in for a nap. 

As glad as I am to have him home, I admit to being anxious about the swelling in the leg and foot.  Of course, we want him to move as much as possible to avoid a repeat of the problem but he thinks he ought to have a cane since he needs to hold on to things in order to walk safely. 

Jeff says he can’t wait to see the TV ad for Xarelto to be reminded of all the potential side effects of his new drug.

Hospital Adventures

A rough night last night left Jeff looking pretty wrecked.  He was disgusted at having to keep his leg straight, unable to get comfortable.  The automatic blood pressure cuff pinched infuriatingly at regular intervals.  The Benedryl he needed for the allergic reaction helped him doze off but it didn’t last.  Ativan (the post-transplant sleep aid I preferred because it gave him a peaceful sleep) did not see him through the night.  His nurse did everything he could to help Jeff including propping him on his side with pillows.  Jeff said, “That lasted about 30 seconds before I couldn’t stand it anymore.”  It seems the night nurse was quite attentive but it was no use.

Shortly after I arrived at St. Mary’s, Nurse Felicia began getting Jeff ready for transport for Part Two of the Rapid Lysis.  His own Stryker bed was put into Drive and propelled itself down the hall.  Before we reached the doors to exit the ICU, the battery petered out and the heavy thing became difficult for the Nurse Felicia and the transport gal to maneuver.  It made for an exciting ride to the Cath Lab, with the bed alternately motoring along and requiring significant pulling and pushing. 

I left Jeff in the lab and went out to the waiting room.  This was a smaller seating area near the larger waiting room where I sat yesterday.  I asked at the desk whether I had been waiting in the wrong area yesterday and maybe that is why they couldn’t find me.  No, they told me.  The staff will check both waiting rooms.  I shrugged and sat – alone - in the smaller area directly outside the lab door.  Eventually I was joined by the family member of another patient who placed a restaurant-style pager on the coffee table.  I looked at it and had to ask whether her family member was in the same lab as Jeff.  She was.  The woman said she was told she could go anywhere in the hospital and they would page her when her mother’s procedure was finished.  We wondered together why they don’t offer a pager to everyone who is waiting.  Or why they didn’t call my cell phone yesterday. 

Part Two of the Rapid Lysis involved using dye again to see whether the overnight treatment with TPA disintegrated the clot enough to suck it out of the vein.  It did!  The clot and the paraphernalia in and attached to his leg were all removed.  What a relief!  The blood thinners caused Jeff to have a bloody nose during the procedure and he had an allergic reaction to the dye they used.  Both are fairly common issues, the latter is known as “Red Man Syndrome.” 

Jeff slept the rest of the morning but woke when Internist Dr. Kravatz visited.  He was so pleased about the success of the procedure that he got our hopes up that Jeff would be discharged “soon.”  He wanted to know if Dr. Porter was in the loop (he is) and we discussed which blood thinner might be the best choice.  My vote was one of the newer ones that do not require their levels to be checked and dosages fussed with.  Dr. Kravatz wanted to make sure that Dr. Porter wasn’t going to recommend at-home injections of blood thinner as is sometimes the case for oncology patients (he did not).  Dr. Kravatz said he’d order many, many blood tests to make sure everything else is okay.  There was discussion about moving Jeff back to Telemetry where he would be able to have a shower!

Dr. Kravatz then picked up Jeff’s blankets and looked at the left leg. 

“Oh,” he said.  “You’re still symptomatic.”

The leg is still swollen and hard and, we later discovered, still cannot support much weight.  That will delay discharge.

Dr. Kravatz left and a phlebotomist came in to draw the blood that would be required for all those tests.  Jeff hadn’t yet eaten very much and was only sipping water so I picked up his water and encouraged him to start drinking.  Because of the blood thinners used during the procedure, the blood draw had to be done from the IV port.  Nurse Felicia helped the phlebotomist because they knew it was going to be difficult.  You might think the blood thinners would make the blood flow well but it was a slow process.  There was much discussion about which color tubes ought to get priority, in case they couldn’t get enough for all ten.  It seemed as if an entire episode of HGTV’s Vacation House for Free played before the ten vials were filled.  Phew!

Jeff snoozed and, I think, I did, too.  Nurse Felecia returned within an hour to announce that Jeff’s blood specimens had hemolyzed and that only one of the vials was usable.  Special permission was granted to stick his arm.  Unfortunately, he still hadn’t been drinking anything.  Another phlebotomist attempted to get nine more vials from him and she became irritated with the difficulty of the task although she eventually succeeded.

Less than an hour later a third phlebotomist came to the room to get one vial only – to check the heparin levels in Jeff’s blood.  I couldn’t believe that the order for ten vials didn’t include a check for heparin levels and I asked the phlebotomist to check with the nurse to make sure another stick was really required.  The same woman came back later and said that she did, indeed, need to take another.  This would be the 20^th vial within a couple of hours.

A social worker confirmed that our insurance plan will cover the newer blood thinner called Xarelto.  He’ll start it tomorrow while he is still on IV heparin.  Then the heparin can be stopped.

Jeff was not allowed out of bed for a period of time following the procedure.  He was highly motivated to use the bathroom but was disappointed to see it was still extremely difficult for him to put any weight on his left leg.  He said, “I’m never going to get out of here.”

Jeff did manage to joke with the nurse who scanned his wristband when switching out an IV bag.  In a whispery voice he said, “I feel like I’m at Home Depot.”

Jeff’s brother, Paul, visited today and my niece, Nurse Becky, stopped after her clinicals.  Jeff and I got to see Rosie via Facetime.  We played “Where’s Rosie’s belly button” and I told her that Grandpop used the potty today.  She did not seem impressed. 

Rapid Lysis By Any Other Name

This morning as I arrived at the hospital, I passed Kerry leaving.  He’d popped in to see his father before heading out to work.  Jeff looked pretty good.  He hadn’t slept well between the busy nurses’ station outside his door and the noisily-breathing octogenarian in the next bed.  The foam earplugs he’d requested did not help all that much.  Nurse Mina said he was scheduled for a procedure at 11 a.m.  I asked if he was to have surgery.

“No, no.  It is procedure.  No surgery,” Mina said.

“What is the name of the procedure?” I asked.

“It is called Blood Clot Removal Procedure,” she told me.

Of course, we were curious to learn a little bit more about this Procedure.  At this point we had only our own WebMD education to help us guess what was about to happen.  Dr. Sanchez, Intervention Radiologist, came to the room to thoroughly discuss what he might find when he goes into Jeff’s vein through the back of his knee, and what he might do about it once in there: stents, filters, breaking up a clot with TPA (Tissue Plasminogen Activator), sucking out pieces of clot, etc.  He said because Jeff had acute symptoms, he could probably clean it up easier than if he was a patient with long-term issues.  Dr. Sanchez hadn’t yet seen Jeff’s imaging from yesterday so he couldn’t say for certain which of his tricks he would try.  I handed him the CD of Jeff’s ultrasound and he excused himself to go have a look.  Within minutes Nurse Mina was back in the room to announce they would take Jeff for his Procedure in ten minutes (much earlier than scheduled).   

Jeff was wheeled away by a friendly Transport Guy who referred to me as Jeff’s “daughter.”  I went to get a bite to eat and a nurse from radiology called to say they were taking Jeff in to begin The Procedure and she told me where to wait for him.  When I arrived at the Cath Lab I stopped at the desk to introduce myself and to ask again, “What is this procedure called?”

“Arteriogram,” I was told. 

I settled down to wait.  And wait.  Just when it was beginning to seem unbearable (and I reminded myself many times I was only the one waiting, not the one being poked and prodded), my sister, Judy texted.  She sensed I needed her.  She came to wait with me and provided a good distraction and comfort.  Still, I grew more and more concerned and finally asked at the desk for an update.  I learned that they’d been looking for me and “couldn’t find” me though I had been waiting in the brightly-lit and nearly empty waiting room where I had been instructed to wait.  There had been two people who recognized me as I sat in the waiting area.  Each of them spoke with me for a few minutes – a woman from our church and a co-worker.  Is it possible that the nurse saw me talking to someone and thought I was there for some other purpose?  The hospital staff weren’t calling out names, they were coming out into the waiting room to find family members.  There were never more than three people in the waiting room so it should not have been hard to figure out where I was, who I was.

Meanwhile, Jeff kept telling the nurses, “My wife is going to be mad if you don’t find her.  You better page her.” 

Dr. Sanchez told Jeff that The Procedure went well.  Two catheters were placed in the back of his leg to be left overnight with TPA pumping in.  First thing tomorrow morning they’ll check to see whether the large clot disintegrated enough to be sucked out.  This can take up to 48 hours.   

I was reunited with my honey in the ICU (because of risk of bleeding) where I found him eating pasta in a spacious, private room.  I read him some greetings from Facebook, Instagram, emails and texts.  He snoozed for a while and I took the time to update friends and family.  Nurse Mike was in and out of the room tending to Jeff.  I drew his attention to a change I noticed in Jeff’s face.  It was turning bright, bright red. 

“Is this something we should be concerned about?” I asked Mike.

Mike looked Jeff over and decided, “He doesn’t look bad to me.  I just started his antibiotic.  We’ll keep an eye on him but I’m not concerned.”

Jeff said it was his “been-in-the-islands” look.  I cursed my hyper-focus on the changes in Jeff’s skin.  I am constantly looking for evidence of Graft vs. Host Disease and chastised myself for my over-vigilance.  Still, Jeff’s face looked very, very stressed to me.  I left the room to get a drink.

When I returned, Jeff informed me that Nurse Mike thought I might be right, that the red face was a reaction to the antibiotic Cefazolin (Ancef) even though such reactions usually begin on the back.  Mike called Dr. Sanchez and Benadryl was ordered; the second dose of Cefazolin was canceled. 

Late in the day, Dr. Sanchez sent his Physician’s Assistant to discuss The Procedure with us.  By this time I had read an article about “Rapid Lysis” that Jeff’s brother, Paul, found:  http://www.mainlinehealth.org/diw/Content.asp?PageID=DIW008879

The P.A. told us what we might expect for Part Two of The Procedure, scheduled for first thing tomorrow morning.  She also confirmed that The Procedure is known as “Rapid Lysis.”

Jeff kept asking me, “What is Dr. Sanchez?  An Unconventional Radiologist?” 

“Interventional Radiologist,” I’d answer.

After a few repetitions of this over a few hours, Jeff asked again with a twinkle in his eye.

“I don’t remember, was it Inconvenient Radiologist?” I asked.

An evening visit from Dan and Jennifer was very welcome, indeed, as were the many well wishes from friends and family.