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. 

DVT – A New Acronym for our Vocabulary

I expected to blog tonight about Jeff’s latest speaking engagement for the Morrisville Presbyterian Youth Club.  It was to be a longer speech than those he has done and so we prepared a PowerPoint presentation that works well to prompt Jeff as he tells his story.  We were both excited about it - as was Dan, who was to introduce Jeff, and Elizabeth, a customer/friend who recruited Jeff for this talk.

Unfortunately, we ended up in the ER instead.  While recovering from a stomach virus, sinus infection and extreme fatigue, Jeff developed a sore leg which he said “feels like five pulled muscles but I’ve done nothing but lay in bed.”  Giblet walked on his sore leg and Jeff could tolerate two of the dog’s legs but the other two caused extreme pain. He described feeling as though there was a line down his leg that delineated the affected area.  The leg eventually swelled up and got hard and warm.  He has great difficulty walking and any movement is painful. 

Dr. Sullivan, the family doctor, ordered an ultrasound.  After the radiologist conferred with Dr. Sullivan, we were told, “Don’t stop to eat.  Don’t go home for a toothbrush.  Go right to the hospital.”  The nurse didn’t want to tell us which hospital and after hearing us debate between St. Mary’s (15 minutes away) or University of Pennsylvania (45 minutes away) and deciding on St. Mary’s, she looked relieved and said, “Close is good.”  They called ahead to alert the ER we were coming.

So imagine our confusion when Jeff was wheeled into a very busy waiting room next to kids holding vomit basins, given a wristband with the number 40 on it and left there for 45 minutes before they ever asked him why he was there.  At first I wasn’t too concerned because, as I said, there were a lot of sick people there.  They all needed attention, too, and Jeff was feeling okay although he wished he could get comfortable.  Nearly three hours after his arrival in the ER a heparin drip was started.  I was getting tired and agitated at around five hours so Jeff sent me home.  By the time I got home, he texted that he finally had a room in telemetry.   

Jeff has DVT, Deep Vein Thrombosis.  Apparently, it is quite extensive.  He has blood clots in his left leg from his ankle to his hip “and probably further,” the ER doc said.  Jeff thought he heard the young doctor making phone calls and having trouble getting a specialist to take his case.  We’ll see.  We don’t know much about his condition yet but it seems possible that Jeff’s inactivity may have caused the clots to form. 

I am relieved that Jeff is being cared for by the pros. 

Thank you to all who texted and posted good wishes and prayers this evening - and to Dan and Jennifer for taking Giblet.

Out with a Bang

About a month ago I asked Jeff if we could knock out a home improvement project over the Christmas break.  Nothing so ambitious that it would prevent us from visiting family, just a small project that could feasibly be done in a day or two.  The options included painting the guest room or installing hardwood floor in our bedroom.  The wall-to-wall carpeting in the bedroom was the more desperate situation of the two potential projects so we removed it and the subflooring a few days before Christmas and installed prefinished hardwood the day after.  I am no stranger to the flooring nailer.  I learned how to install hardwood flooring at Kerry and Theresa’s house during Jeff’s first year of recovery.  He provided the know-how and some of the muscle.  Theresa, Kerry and I tried to minimize the number of times Jeff had to get up and down which was still exhausting for him at that point.

For our project, I fully expected to bang boards in place and whack the nailing gun.  Jeff started without me, addressing the tricky closet door opening and getting a few rows down.  When I showed up on the job, I did the cutting and some of the puzzle-piece board selection but I began to develop a horrible headache despite wearing hearing protection.  I took Alleve and went back to work.  The many trips to the chop saw in the garage provided some relief.  The chop saw seemed quieter but I wonder now whether it was because I was in control of it and knew when to expect the noise. 

Around lunchtime I could see Jeff was fading.  I suggested that we leave the rest for another day.

“No,” Jeff said.

“Let’s eat and see how we feel then,” I said.

Jeff was quiet as we ate.  As soon as he finished his usual workman’s lunch - peanut butter and jelly sandwich and an orange - he returned to the project. As each row of boards was installed, Jeff’s pace slowed.  I tried harder to anticipate which tool he would need, which boards would fit, what cuts needed to be made.  It was painful to watch him get up from kneeling – he was in agony.  Still, he would not stop until all ten cartons of flooring were down!  “We” got the job finished before dinnertime - except for some special fitting in the last row and replacing the baseboard.  The poor guy is so sore he winces every time he sits in - or gets up from - a chair. 

Then Jeff spent the next two days at church to prepare for installation of a new heater.  I believe he will be having a nap day tomorrow.

A lingering sinus infection has been annoying Jeff and may be affecting his stamina.  On the other hand, his blood counts were excellent last week.  Dr. Porter did not taper the immunosuppressant but he did extend the next visit and blood work to three months instead of two.  That’s simultaneously exciting and nerve-wracking. 

And so, 2014 goes out with a bang.  Well, lots of bangs.  Here is hoping 2015 brings good health and happiness to all our readers!

Fall Festivities

Jeff has neuropathy on various spots on his body from the pre-transplant chemo/radiation but his feet give him the most trouble.  It makes shopping for shoes - and even socks – difficult and causes agony when he has to wear work boots.  From time to time, I wonder aloud whether a podiatrist could help but Jeff is reluctant to add yet another specialist to his repertoire.  So when I learned that the marrow recipient honored at the Gift of Life NJ Walk for Life last month was himself a podiatrist, I thought we had found the perfect authority on the subject!
 

After the walk, we stopped to chat with the man and his wife.  I nudged Jeff and said, “Ask him about neuropathy.” 

The man heard my prompt and, with a look of disgust, remarked, “Yeah, I got it.”

So there you have it.  Some things you just have to live with. 

Jeff's latest spoon design inspired by the Gift of Life logo

The NJ Walk for Life was much, much more relaxing this year than last.  Last year we were anxious and excited to meet Jeff’s blood sister, Nicole.  And Jeff had rehearsed his speech a hundred times although it turned out he didn’t get to deliver it at that event.  This year there was no pressure, just a walk in the park.  It was fun to see another donor and recipient meet and to chat with them.  The young donor, a Jersey boy, had swabbed with his roommate while at college in Israel.  Remarkably BOTH young men ended up as donors!   The recipient’s GVHD was, unfortunately, affecting his muscles and tendons which prevented him from being able to do the walk.  Prior to the event he had written a song for his donor called, “Who are You? Who am I?” which the donor clearly treasured.  There is something about receiving the gift of life that inspires creative expression.

Ruth Miller from Gift of Life arranged for Nicole, Jeff and me to give a Webex presentation for a pharmaceutical company in Northern New Jersey and the UK.  The good folks at Eisai Inc. were interested in the BMT process and wanted the donor, patient and caregiver perspectives.  Our tales - and Ruth’s expert knowledge on the subject - generated some excitement for joining the registry.  Our audience described their company as diverse and since ethnicity matters in HLA typing, this could be a very good thing.   Ruth will invite Eisai to participate in next year’s NJ Walk for Life, too.

The MDS Foundation held its fall MDS Family event in Wynnewood, PA.  Jeff was able to serve as the BMT poster boy for those who are facing the inevitability of transplant.  One woman said she hadn’t yet met an MDS patient who survived transplant and she was relieved to see a success story.  Another family had just seen Mom through breast cancer only to have Dad’s MDS diagnosis follow shortly thereafter.  Jeff liked the guest facilitator, a holistic nurse who emphasized spirituality.  The meeting was restorative for all.  How is it possible to be touched so deeply by people you have only just met?

Oktoberfest at Cannstatter Volksfest Verein in Philadelphia, celebrated every year with my family, has taken on a new purpose for us.  It marks and celebrates Jeff’s survival since his diagnosis four years ago.  This year a wide-eyed Rosie joined the party.  She was fascinated by the dancers and insisted on spending a lot of time on the dance floor herself!  The fun quotient got quite a boost.

Jeff and I celebrated our 35^th Wedding Anniversary quietly.  Another milestone made possible by Nicole.  More and more we see ourselves sharing lots more time together with less and less uncertainty seeping into our thoughts.

Prayers, please, for Brad and Chris who lost their wife/mother to cancer this month.  Debbie, a member of the Morrisville cancer coterie, was a brilliant, joyful woman who often expressed care and concern for Jeff even as she herself was in need of a miracle.