“So what is going on with the transplant”

The 100 days result still applies, the transplant is a success.  Now, if he can just work out the kinks of having the transplant.  So, with all that has happened, how is the bone marrow doing? At this point in time the effects of the sepsis on the bone marrow are waning. Sepsis affects the entire body and the bone marrow is no exception. When a person develops sepsis, there is a destruction, repression, slow-down of blood cell production and overburdening of the bone marrow, not a good thing for an already repressed, slowed-down, overburdened, and new bone marrow. We are watching his numbers and it looks like the bone marrow is slowly recovering. It will be awhile before it is really revved up, so, until then he will still need transfusions.  Also, he has to have a hematocrit above 27 and platelets above 30,000 to have an ECP treatment.  The ECP treatments “eat up” or destroy some of the platelets (a certain type of blood cell).  It will take some time until Wayne’s bone marrow is robust enough for adequate blood cell production.  In addition, he is still hemolyzing, red blood cells are being destroyed, reason is yet to be determined, but until this resolves he will need transfusions. He just happens to be at the place where they have a bunch of blood.  

“Septic -tanked”

Looks like the Wayne is flushing his sepsis out of his system……….BIG SIGH OF RELIEF!!!!!! Thank you all for answering the call to arms, all those arms together, formed the chain that held him back from any going down the tank with the Sepsis. For some of us from the “old school” there was an unspoken superstition that just saying that horrible word, sepsis, could bring down the wrath, and so you held off for as long as possible before labeling the patient septic for it didn’t bode well for the patient.  Modern medicine, divine intervention (lots friends) and the strong will of a man, overruled. Whew!!!!

Sepsis is a condition caused by a response to severe infection.  It is the chemicals released into the blood to fight the infection that trigger a whole-body inflammatory state. This inflammatory response, known as SIRS (systemic inflammatory response syndrome) was triggered by chemicals that Wayne’s body produced to react to the undesirable bacteria that entered Wayne’s blood stream, most likely from Wayne’s bowel which was not working. For healthy people, bacteria in the bowel aides in digestion of food. For those person’s whose bowel no longer works and they are not able to absorb anything, and especially if the person is immunocompromised, the bacteria that is there normally can “spill” or “get into” the blood. There is major organ compromise, kidney and liver dysfunction, issues with vital signs, etc., etc., etc.,  Many patients with sepsis develop, septic shock, fortunately, thankfully, Wayne did not have to deal with this. So you are asking, “How can this happen to a person whose immune system does not work, is the body fighting the infection?” No, the body is responding to the infection.  This is more information than anyone wants to know about sepsis, as for me I am just happy to flush this memory away.

“Words with Wayne”

To have a meaningful conversation with Wayne it may be helpful to understand him, otherwise there is the risk that you may think he is disoriented, confused, or worst of all. that he has finally learning how to speak a foreign language -“medical talk”.  Since there are a million reasons that could cause him to be confused….no kidding you say…. having a mutual understanding of what his words mean may eliminate at least one.

Crystals – incredibly precious objects to persons restricted from fluids, also known as “ice chips”

Lederhosen – White socks worn to reduce the risk of blood clots, also known as “TED Hose”

Kimono – A small version of a port-a-potty, also known as a “commode”

Tree – There are what appears to be several branches of this (so this is easy to understand), also known as an “IV pole”

Torture – also known as “physical therapy”

Graftess – also known as graft versus host disease (GvHD)

Useless – persons who pester him and do not do exactly what Wayne wants,  also known as “caregivers or medical staff”

AFK, PHM, IND or any combination of 3 initials, except the letters E, C, or P – extracorporeal photopheresis, used in treatment of graft-versus-host disease (GvHD), also known as “ECP”

The following complaint, said with great distress “They beat the s_ _ _ out of me” also known as “turning the patient every 2 hours”

I am sure you will be scrabbling to learn other Wayne words when you have a chance to talk with him. Do you think Wikipedia knows about these?

“Accountability for All”

One of Wayne’s guiding principles is that all parties involved in reaching or impacting a desired outcome are given responsibilities and all members of the team are held accountable for helping to reach the desired outcome. When Wayne Wayne held his first accountability for the medical team there was a new comer, new to the team, new to the hospital, new to Utah. Of course Huntsman is associated with the University of Utah, which is a teaching hospital, so I was dubious about the role of the new-comer.  What a pleasant surprise! I had a first row seat to watch the dance of 2 male alpha’s in action, each with a disadvantage, one was a new-comer, the other a new-comer to complete physical compromise. On the fourth day of rounds, the new-comer examines Wayne, listens to Wayne conduct his accountability and then…….starts questioning Wayne regarding Wayne’s  ACCOUNTABILITY!  Oh indeed, Wayne is part of the team and he has his own work to do, to reach the desired goal. This is “toe to toe, tit for tat, you scratch my back, I’ll scratch yours.” How does Wayne like it – NOT!  He has tried to weasel out of his responsibilities, but we are all on to him. So yes I AM A BIG MEANY.  He has to get up!!! He has to breath into his incentive spirometry!!!!! He has to be able to eat real food!!!!  These are his accountabilities.  Every day, Wayne asks if the doctor thinks we are going to reach the goal and everyday the doctor asks Wayne if he is going to reach his goal.  This is hard work for all, a lot of pressure for all of us to help get to the goal – HOME, lets hope these two guys get there at the same time.                                                                             ……Oh by the way, it is easy to see how this clever new-comer was able to work his way up the ladder, he is the new Chief of Bone Marrow Transplant, a specialist in GvHD, an observant man who knows how to have a patient work right into his hand, I like him, he’s one of the good guys!  TOO bad I didn’t have this experience sooner, who knows what I could of had Wayne do, but I have a feeling that this is a guy thing, and I don’t think I could have it better that I have it now.  So many friends and the love of a good man, what a great life!

“Progression” Diet

Wayne has now progressed to a “progression diet”.  This is a 5-stage eating plan, designed to build up your tolerance to eating solid foods again after severe bouts of diarrhea.  Stage one included cream of wheat and diced peaches. He was able to tolerate this with no signs of trouble – YIPEE!!  Another 24 hours and he can go to stage 2, bananas and toast. There is a 48-72 hour period before moving from step to the next step, and if there is any slipping (dreaded diarrhea) we hold until he can adjust to this step. The third step features foods such as scrambled eggs, crackers, potatoes and bland baked, boiled or broiled turkey and chicken. The fourth step in the progressive diet allows a regular diet without any dairy products.The fifth step in the diet, which is where we were before all the mayhem started, gradually allows introduction of dairy products.

He is progressing on several other fronts.  He has gone 6 days without needing packed red blood cells and 3 days without platelets.  He is now taking some of his medications orally, and he is up walking in the halls and has PT twice a day.                         Progression, PROGRESSION, PROGRESSION!

“There’s always room for J-E-L-L-O”

“It’s as if we spend our entire lives avoiding Jell-O but it is always there at the end, waiting ― John GrishamFord County   28 days with only water and what passes over a persons lips first…JELL-O, sugarless of course! Next, a popsicle, sugarless of course.  Maybe today, juice, sugarless of course.  Who knows maybe tomorrow he will be able to have a JELL-O, the old fashioned way, with sugar of course.

“Accountability”

He’s back!  How do I know?  He held his first accountability meeting.  Oh, the staff may have thought they were having medical “rounds” but it was an accountability meeting.  They asked “how was he was doing, and he TOLD them.  And then he asked “How did they think they are doing? Do they know what they are doing?  Do they think it is working? How do they know if it is working? How long will it take to know if it is working? What will they do if it doesn’t work?”,  I think you get the gist.  I would venture a guess that the scorecard showed F’s. I am certain we all will be under his scrutiny, and he’ll be the one to tell us when things meet with his approval. And then, I’m counting on A’s.

“Good Day Sunshine”

Good day sunshine,
Good day sunshine,
Good day ECP.
I need to laugh (no kidding), and when the ECP is out
I’ve got something I can laugh about,
I feel good, in a special way.
My counts are good and it’s a sunny day.

Yesterday Wayne’s blood counts went up.  Big deal for 2 reasons.  First, he did not need blood products.  Second his blood counts actually went up from the day before, on their own, which is even more incredible when you consider that ECP shreds (destroys) platelets. So, it would have been no surprise to see that his platelets were way down. But no, his actually went up. So what do you do when all the numbers are in your favor, you go out to play in the the sun, or at least some of your WBC’s go out to play in the UV light – ECP was moved up and he had his treatment on Wednesday.

Respite

Respite /ˈrespət/ Noun – a short period of rest of relief from something difficult or unpleasant.

Wayne had a nice respite from his diarrhea yesterday, NOTHING during the night.  Total volume only 500cc’s.  Whew!!! Something was going his way yesterday.  This could be a real break. What this seems to mean is, it seems he is responding to the regime that he is getting for his cGvHD, and he could get a long respite.

“Filling up the tank before heading out”

That ought to do it for now.  3 units of platelets, 5 units of packed RBC’s (1 more will be given after his treatment) and he can head over to ECP to catch some rays. Well at least some of his WBC’s will be catching some rays, UV rays, when he has another ECP treatment.  And what do you do while you are catching rays- lay around a bask.  Just the thing for a person who was up every 15 minutes having his vital signs taken – laying around and basking sounds pretty good.