Three Years Old Today, and a CGVHD setback.

Ahoy to all, and thanks for your responses to my last post!

T+1096 days.  Three years old.   Ain't it funny how time slips away.

They say if you make it 1 year, you will probably make it to 3, and if you make it to 3,  you will probably make it to 5.  Well I am on my way to 5, but not without a price, and confess to being overly optimistic about my progress in my last post.  "Pride goeth before a fall" and all.   In January things started to deteriorate.   Chronic Graft v.s. Host Disease arrived and with it a setback of about 9 months.

Here is a prescient quote from my post back in July 2013, when I was a mere 4 Months old.

"There is also Chronic GVHD  which can show up anytime from now on... I hope Chronic GVHD will not be the subject of a future post, as this drama plays out for me. "

That quoted post is here: Graft Versus Host Disease (GVHD) .  It is a short one with lots of cartoons and pictures and is sort of required reading for today's post, which will be very short.


Well, this is the post I hoped I would not have to write, and I have been putting off writing until today, my third birthday, and at 2 am.  Here goes-


I was feeling so bad.        So I asked my Transplant Doctor just what I had
I said "Doctor"                  Doctor 
"Mister MD"                     Doctor
"Can you tell me"             Can you tell me
"What's ailin' me "            Doctor
He said "Yeah Yeah Yeah Yeah "     Yeah Yeah Yeah Yeah   
You got G V H D

Apologies to  Rudy Clark and Arthur Resnick the writers of Good Lovin'.

Today's Soundtrack:

3 versions of Good Lovin'  
Note how short they are- well under the  traditional 3 minute limit of 60's AM radio - a barrier broken when Bob Dylan squeezed  6:09 worth of Like A Rolling Stone onto a 45 in '65.  B side was Gates of Eden- but I digress.








GOOD LOVIN'
1965 version by Lemme B. Good   The first recording.   2 minutes.

Cover by the Olympics a month later, charted to #81 on Billboard.      2 minutes

The Young Rascal's 1966 cover went to #1 on Billboard.     2:42 minutes.

OK, got the tunes going?


That quote again -

" I hope Chronic GVHD will not be the subject of a future post, as this drama plays out for me. "

Well here is that future post, the one I so hoped I would not have to write.

Things were going swimmingly and I had tapered off the Prednisone

and the Tacrolimus (aka Prograf )  - side effects too numerous to list

The Cortico-Steroid induced Type 2 Diabetes (side effect)  was all but gone, and I had tapered off those meds too.  No more swollen feet and legs, skin tone coming back, regaining weight and muscle mass, riding my yard sale bike.  I could play my guitar for 5-6 hours without triggering an immune response and cramping in my fingers and hands. I felt better.

But I had stopped paying close attention to my monthly blood lab results, and un-noticed, my liver numbers, specifically the  Alkaline Phospatase  shot back up, and with it gut, muscle cramping, and dermatological issues common to Chronic Graft v.s. Host Disease.   Since my new immune system was no longer reigned in, there had been an insurgency and my warrior cells turned on me again, and they had to be suppressed and sent back for re-education and re-grooving*.  So back on the Meds, get stabilized, start another gradual taper, and ascertain an appropriate maintenance dose.

The good news is that this time I know what to watch for. I am trialing a new med, Jakafi, which my Main Medico heard about at this year's ASH (American Society of Hematologists) convention, and is proving beneficial in some cases.

After finally joining FaceBook in January,  I have joined an MDS group and a GVHD group.
What a vital (and socially redeeming ) use of social media!  The international sharing of information is serious. There are no cat videos or political rants, just questions put to the group-mind, advice to newbies, hand-holding and compassion.  Just knowing that one is not alone in this, this Life Drama in which we have been unwittingly cast, often by a random genetic mutation, is reassuring.  The discourse helps me to stay on an even keel, cope with the daily challenges, and learn more about what condition my condition is in.

And though it has again started to trigger Cytokine Cascades  with cramping in my hands and fingers, I am still immersed in music. In fact  Barstow and The Revamps have a gig tonight at Donna Nyzio's Art Show  here in Beaufort.

So all in all things are looking up, and I am able to maintain a positive attitude about what is going on with my somewhat out-of- control bodily functions and take the days one at a time.  I still set unrealistic goals, and then feel bad when I don't meet them, but hey, who doesn't?    Our local hospital has struck an agreement with Blue Cross Blue Shield NC and will be reinstated in the network in a few weeks, so that is one less thing to worry about.

I am on the right side of the sod. Things could be worse.

More to come, but for now-

Cheers,

Cap'n Chris

* see Firesign Theater, re-grooving from "how can you be in two places at once , when you're not anywhere at all"

2015 Update

Ahoy All!

279 days since my last post, overdue for an update.
1004 days since my Bone Marrow Stem Cell Transplant. ( 2 years, 8 months and 4 days )

      That means I am almost through with the "terrible twos", which have not really been terrible, but I do get cranky if I don't get my nap,   I have managed to stay out of any hospitals for a year and a half, and my Duke Med visits are now Bi-Annual.  The Medicos have allowed me to eliminate some of the meds, and taper off the rest. I have begun the course of my early-childhood immunizations.  

     It is still an upwind leg of the voyage, but I can see the weather mark.

      There is a  blog post in the works- a reflection after 2 1/2 years - about all the after effects of the transplant and the side effects of the meds that I trust will be of interest and service to all of the Medicos and fellow transplantees who have subscribed to this blog- with over 41,000 page views from over 20 countries.  I hope to continue being of some assistance and comfort to those who are anticipating or recovering from a transplant this coming year. Please put me in touch with anyone you know who is facing this procedure.

     My biggest milestone is that after months and months of working at it, I have begun to regain my musical chops.  I have (knock on wood ) managed to convince my fledgling immune system that the redness and swelling in my fingertips is not in fact an infection that needs to be addressed by elevating my temperature, and causing other various other unpleasant reactions.  I have also been able to resurrect most of my muscle memory and fine motor control, and lyrics are coming back.

      To this end I have put together a new combo with talented local musicians to further motivate me and promote my recovery. We are  Barstow and the Revamps and are auditioning Bass players, Reeds and Horns to round out the sound.  

Also new for 2016 is a presence on Face Book .

Heartfelt thanks to my donor/sister,  and to all of you for your support. May health and happiness overwhelm you this coming year.

Cap'n Chris  ( impatient patient ) and Anne (caregiver extraordinaire)

2 yrs old on April 2nd.

Good Morning.


        I am breaking six months of blogging silence to report on my condition, which I will do below the jump. But first -

The Emperor of all Maladies


Now  as a Ken Burns PBS special airing March 30 to April 1,  next Monday - Wednesday. Check your local schedule.


Here is a link to a Mother Jones interview, and the trailer.

ken-burns-pbs-cancer-emperor-all-maladies


I  recommended this book in my first post back in March of 2013, and continue to.
That it warrants a Ken Burns Special should secure the importance of this book for a long time.

Buy it here.

OK, click below for the jump....

Reunion of Survivors

Last Saturday, Anne and I travelled to Durham for a reunion of Duke Adult Bone Marrow Transplant patients.

Quite a moving experience. It was held in a large conference room at the Durham Conference Center, and there were about 400 hundred attendees.

Two poignant moments -

A MUD  transplant survivor  ( stem cells from a Matched, Unrelated Donor )  got to meet his donor.
Tearful and moving.

and then there was the  " OK, Everyone who is 5 years out, raise your hand "

then 10, then 15,16,17,18,19, 20, and there were still hands going up.  It capped at 25 yrs!

And the technology 20 years ago was pretty primitive compared that of  today.


I am at day 535, or about a year and a half, and as many of the other survivors I spoke with,  I am still adjusting meds to address the GVHD conditions I am experiencing with my gut, kidneys, bruising, fatigue and steroid induced type two diabetes which is not uncommon in the early years.  I will be meeting with yet another medico here in Carteret County next week to get the glucose numbers under control.

No Jump or soundtrack today.
More to come.

Chris

Sun Protective Clothing

"the best sunscreen is a hat and a shirt"

     The Australian Government, a leader in UV research for over two decades, has stated that, "Over-exposure to solar ultraviolet radiation (UVR) can cause sunburn, skin damage and an increased risk of developing skin cancer. Clothing provides one of the most convenient forms of protection against UVR but not all garments offer sufficient sun protection"

    Clothing provides one of the most convenient forms of protection against UV Rays, and has been used since Eve's fig leaf, but not all garments offer sufficient sun protection. 

Below the jump we will examine

* Ratings again: review  the SPF rating
* How UPF ratings are derived
* Composition:
* Cost: some thoughts the economy/false economy of this kind of clothing.
* Sources: a look at several  different manufacturers and online retailers of sun-protective clothing
* The Threads:check out some hats, shirts, pants, gloves, and yes, parasols.
* Do It Yourself:  Fabric, SPF DYES, Spray on UV protection for your clothing.

So  suit up, put on your shades, and lets jump

Day 395:med update, and a look back 44 years.

Good Morning  to all, 

    It has been a year and a month, since my transplant, and I can say with confidence that my condition is improving.  The "numbers", my blood lab results, continue to trend towards normalcy and the good days are outweighing the rough ones. I am not out of the woods, yet,
but I am adjusting to my "New Normal".  Physical Therapy and tapering meds is helping too.

     I had a scare earlier this year with squamous cell carcinoma, but caught it in time and had it carved out.  I think that episode was the cause for the scarcity of blog posts this last winter.  It was hard to accept that I had come so far with the Bone Marrow/Stem Cell transplant to be struck down by a form of cancer.  That is behind me now,  but I can't help but think of how fragile our lives can be.

     For instance, 44 years ago this Sunday an event occurred that should not be forgotten. I still wear a black armband on April 4th.

Follow me over the jump, and through the tear gas to...

Day 361 - 45 days without a transfusion !

Ahoy All,

     I have been reluctant to post these last three months for a variety of reasons, but after my last labs I can report a definite  upward trend.  My numbers (Red, White and Platelet counts)  are coming up by themselves.  I have now gone 45 days without a transfusion.  It has been about a hundred days since I got the boost from my sister/donor, and it looks like the refinery is back on line, with no evidence of the  9q del genetic mutation or corrupted blood cells. 

     This is a note from one of my medicos:

"We are ecstatic with your blood counts!!!   I honestly got goose bumps when I saw your platelet count >100K.  WOW!   WBC 2K, Hgb 11.5.  This is wonderful news!"

     We go to Duke for an overnight check-up on this Wednesday, day T+365, the first anniversary of my transplant.  We hope that the labs will be continuing this upward trend, and will show that my blood type has flipped from O+  to Laurie's A+.

   What next?    

Tapering off some of the harsh meds, physical therapy to gain back the strength lost from the side effects - muscle wastage and weight loss.   

Risking time out in public without a mask to start building a new acquired immune system. Maybe in 6-months start getting some of the vaccines and immunizations for early childhood diseases.

Continue to adjust diet to offset the organ damage caused (as side effects) by the Chemo, and the meds.  

In short, figure out what is my New Normal.


I promise more posts as my strength and health returns.


Chris

The Roller Coaster Ride, and Balance. Medical Content

The Roller Coaster

      This morning is a post I have had in draft for a while, and it is for any and all of you cancer survivors, those living from transfusion to transfusion, or those who are newly diagnosed with a blood disorder.

   The reason the roller coaster ride is such an apt metaphor for MDS and the other conditions  is well illustrated in this picture. A winch tows the train of cars up to the apex of the acme, the highest point, and then gravity takes over.  Wheeeee  down you go, and back up - just not quite as high, then down again, and back up, moving more slowly as  on each successive rise you don't go quite as high, and you loose inertia. Physics.

Entropy you can ride in.

So strap yourself in and enjoy the ride after the jump

StemCell Boost, a Christmas Present from My Sister/Donor on day 261

Good Morning,

Today we have a happy post, about my boost.

boost

bo͞ost

verb

1. 1.

   help or encourage (something) to increase or improve.

noun

1. 1.

   a source of help or encouragement leading to increase or improvement.

   
   

   synonyms:

   uplift, lift, spur, encouragement, help, inspiration, stimulus, pick-me-up.

      Back when I was a Yacht Broker, a presence at the Annapolis Boat Show was mandatory.  Sail and Power Shows, back to back. One year I had gone up alone early, or it was between shows and Army-Navy football match was going on- anyway I was staying in a rental house a few blocks from the Docks. After a  protracted dinner with friends at  McGarveys Saloon and Oyster Bar , my path home took me down along King George Street, past the Naval Academy.  I have been looking on Google Maps, and there have been some changes to the Fencing, probably post 911, but 25 years ago, there was a stand of tall Rhododendrons and Firs between the street and the tall wrought iron fence.

     I heard some rustling in that foliage, and stepped in to see what was going on. To my surprise, there was a group of cadets sneaking back in over the fence!  As I watched, one kid - a plebe no doubt - was giving a leg up to the last of the upperclassmen.


     When I cleared my throat, they all snapped to attention, and I think it was then the kid realized that he was going to be sacrificed.    I said  "stand down" in my most authoritative voice, approached the fence and then said,
      "Kid, if you learn nothing else here, don't be the last one over the fence".

   We were all a bit tipsy, but as I approached the fence, and assumed the leg up position he had used, he realized that I was going to "save his bacon, and started in with the  " Yes  Sir, Sir, thank you Sir".  I told him not to call me sir.

     I then said to the three cadets who had stranded their shipmate - and were poised to run off -

"I have to walk by the gate. Should I tell the duty officer  how you stranded a shipmate, and deserve to be flogged through the fleet?   The brig is too good for you", and before they could respond, walked away.

 I  have often wondered how their respective careers in the Navy played out.

     Today's post is about a different kind of boost, and sacrifice too, and is a happy day for me.
It involves a medical procedure that spans the ages, from the nano-technology of today, to the lodestone of old. High-tech to analog.

I have tried to be as optimistic about my progress as possible, but here I was after 8 months ,  day 261 of my post-transplant life,  still transfusion dependent, having Iron overload from the 100+ transfusions of Red Blood cells, with a compromised liver from all the transfusions and the meds. And as I told those of you who sensed all was not Hunky Dory,  and called or E-mailed me privately know there was more going on at the cellular level then we had figured out yet. Even so,

Something has been wrong, and much effort has been spent by many figuring out what it is.

Today we look at "The Boost"

Follow me below the fold for a medical update, and  The Boost.  1,2,3,  Jump!

Magnesium and Mg deficiency. Medical and incendiary content.

Today we look at Magnesium.

     My knowledge of Magnesium was limited to it's use in flares, incendiary devices, and when alloyed with Aluminum in Volkswagen engine blocks.  When soon after my transplant,  my blood labs came back showing a deficiency of Magnesium,  I researched it right away.

Specifically we will look at:

* Where does it come from?
* Uses in Early  Photography
* Thermite, VW Engine blocks burning Video. As you will see below the fold, Mg burns hot!
* Medical- Testing for, Symptoms of low Magnesium levels, Deficiency.
* Replenishment. Dietary sources and supplements.
*A look at how and why this has become a problem in the last 50 years.
(you may be surprised )

Magnesium.

Magnesium owes its name to magnesite dumps found in Magnesia, a region in the ancient Greek region of Thessaly, and is also a mythical city mentioned in Plato's Laws.

So here we go, ready , set , jump!

Two Jokes, some medical content.

Good Morning all,

“The most wasted of all days is one without laughter.” – E. E. Cummings

Today we have two jokes intended to raise the spirits of the growing number of Stem Cell and Bone Marrow transplantees who are following this blog. Here is a jpeg you can save and stick onto your email or use as an avatar.

Humor is reputed to be the best medicine.  

 Below the jump there are links to the Mayo Clinic and WebMD and to  a site that will send you the joke(s) of the day.  

Caution: Jokes may cause nasal coffee spew, you have been warned.

So follow us over the jump, already...

T-Day getaway day 239

Good Morning All,  

        After much deliberation, we decided the mental health benefits outweighed the physical health risks, and launched an expedition to Smithfield VA for the annual Turkey day ritual.  Over several rivers, and through the woods, to grandmother's house we go!  Except Dot, the Greenman family matriarch is no longer with us. It is amazing to me how well her daughters have carried on the tradition, not only in the galley, but in the way they can fuss  at the menfolk, who probably need fussin' at if the truth be known. So today some food, and a short side trip into the world of the NC cotton harvest.

So buckle up for a road trip and lets jump

The Song is Ended, But the Melody Lingers On

   Good Morning all. 

      As promised way back on June 22nd, today we will attempt to plant an earworm by means of this fiendishly designed post which will masquerade as a bit of Ethno-musicological dissertation.

    I know there are probably only a few of you blog followers - you know who you are - will have the time or the inclination to listen to all the cuts, all the way through, but trust me, there are a few in here that are most entertaining.  You have all weekend.

     What follows below the jump is a little study - an e-monograph if you will - of "The Song is Ended" from 1927 through 9 decades. The song is presented on Edison Diamond Disc phonograph, a Player Piano Roll, 45, 78, 331/3 Vinyl, and MP3, the youtube poster's digital format. 

So if you have headphones or ear buds put 'em on and let's jump!

Thanksgiving day nears...

Ahoy All,

         No medical content, just a quick note this morning, as there will be a rather lengthy musical post Wednesday night for your over- the -T-day weekend perusal.  It was promised back in June and may just plant an an ear worm.    New subscribers might want to take a quick look at the post on earworms found here: ear-worms-no-not-that-kind.html

      Turkey Confidential 2013 is this year's permutation of Lynne Rosetto-Casper's annual  Splendid Table  call in show- it used to be called Turkey Triage, and had some hilarious call-in disasters. Most notably,  the  one from the "guys" who were handling  "Cooking the Turkey"  in their new deep-fryer who had a "football accident" and tipped it over in the driveway mid-cooking.  This year she has an all star lineup and some great "Swanksgiving" recipies.  Check it out, and you can stream it on T-Day from her site, splendidtable.org

Soundtrack:
Anyone else find it interesting that what was a pretty strong anti-draft song has made it into the Americana Thanksgiving  Obligatory Radiocast. 

Alice's Restaurant Massacre Illustrated

( with circles and arrows )

       And as our gummint threatens to start talking 'bout maybe passing some kind of Immigration Reform, here are two 'toons  about the European Invasion Thanksgiving that might liven up the conversation should your table be too quiet.

bon appetit,

Chris and Anne

Songs that just stay relevant. Caution, political content- no medical content.

Good Morning All,

The title track of Bob Dylan's third Album, released in 1964, was The Times They Are A'Changing.  That was 49 years, 9 months, 30 days ago.

Have they?
Are they? 
Will they?

plus ça change, plus c'est la même chose 

The more things change, the more they stay the same.

Today's post is dedicated to Toshi Seeger.


  NY Times obit/article here - Toshi Seeger, Wife of Folk-Singing Legend, Dies at 91

So put your ears on and follow us over the jump.

Day 221 Fatigue

 Hi to all,

    Apologies for the lapse in posting.  inexcusable really, so I will share a few medical and non medical reasons. 

     The 10 year old laptop continued to slow down in spite of being wormed, and boosted, flushed and tuned up. It was on its third battery and second keyboard.  I finally had to admit that working on it was beyond my ken.  Unsupported OS, Screen freeze, a half hour just to get online only to have the screen go black.  It was getting tired.  Overworked? Planned obsolescence? Fatigue. 

     A worthy patron set me up with a refurbished MacBook Pro, and this is the first post on the new to me Apple. I started on an Apple back at the dawn of the interwebs, and I wonder why I went over to the dark side. 

     This 62 year old laptop user/abuser  continued to slow down as well. Between the meds, the tapering of the meds, and the seemingly slow progress of my recovery, I was exhibiting some of the same symptoms. Brain Freeze and fatigue, and a feeling of things just not getting better.

 crumb art available at www.deniskitchen.com

 Ease on over the jump here for a look at Fatigue.

6 Months Old, or is it New?

        It has been quite a while since I posted, some due to computer problems, some due to system problems, my system that is. Here is an update.

               On or about Friday, October 4th I was 185 days post stem cell transplant.  Aside from two hospitalizations for infections since coming home in July, the medicos are satisfied with my progress.  I am feeling a bit frustrated that my blood type has not yet switched to the B+ of my donor/sister, and that I am still transfusion dependent, but I am told this is not that unusual. We are taking steps to force the blood type switch: I am now off the two immunosuppresants (tacrolimus and prednisone) and we  are experimenting with Rituxin.  It is also a possibility of getting another shot of Laurie's Leukeocytes. 

     As it is now, I have many of the same characteristics of a 6 month old -  virtually no acquired immune system, nor any of the inoculations for childhood diseases, and to varying extents sleep/nap patterns, diet, and diaper usage. But I am walking a little further each day, and have been repeatedly told I am going to rest, not exercise myself back to health.  Mask and gloves on the rare occasions I venture out in public, still observing quarantine, no travel, etc.

Update on my father:

       Also on Friday morning, my father passed away, in his own bed, with my sister in attendance. Here is a facebook posting from Paul DeGeata, ( some of you may know him as the Capt. of The Victory Chimes)  the nephew of Nick, one of Bud's Army buddies...

My uncle Nick emailed me to tell me his close buddy, Bud Siegel  passed away at 6:30 this morning in Long Island, NY. 

I got to know Bud over the last 20 years. Sometimes people slip away unnoticed. I hope you'll indulge me my memories because he's a man worthy of notice. 

My uncle Nick is 95. Bud was a few years older. The pair made Airborne History making America's first combat parachute drop with the 509th Parachute Infantry in North Africa in 1942. They fought across North Africa, Jumped in Avalino where Bud had to pretend to be a patient from an insane asylum as he was led by an Italian monk, through a German Patrol looking for paratroopers; they landed at Anzio where their outfit went through its numbers three times because of casualties. With Darby's Rangers, the 509 took a mountain (Venafro) the Germans held in 24 hours  that the 45th Division had been trying to take for a month.  

The 509 led the Airborne Invasion of Southern France. Bud, a Captain in A Company at the time, drew up the jump list so he was the first paratrooper out of the lead plane to start the invasion of Southern France. They fought in the French Maritimes and were called to Belgium during the Battle of the Bulge. They held a very important cross roads in Belgium during the Battle of the Bulge. Bud and his jeep driver were ambushed bringing entrenching tools to his company so they could dig in the frozen ground. He  was wounded and captured by SS Troopers. He understood enough German to know that the SS sergeant told the soldier guarding them to take them behind a snow bank and shoot them. Just then an American tank rolled up and he and his driver had just enough time to escape. Years back, Bud gave me a brass whistle he was wearing that stopped a German machine gun bullet fired by that SS patrol that ambushed his jeep and blew it up with a Panzefaust, he said the whistle probably saved his life.  While Bud was recuperating from his wounds, my  Uncle Nick was one of 6 of the original troopers in the outfit who was still standing after the Bulge. There only a 58 others out of a Battalion that usually consisted of more than  650 men.

Both men always said they were living life on borrowed time since WWII. Both lived worthy lives and had long distinguished careers in uniform, Bud a cop, Nick a firefighter. Both worked with disadvantaged kids in their retirement years. The pair used to entertain their outfit with songs and poetry at 509 Reunions and Airborne Banquets up until about two years ago.

To say they were part of the Greatest generation is an understatement. They are two of the best men I've ever met. I feel for my uncle Nick today, very few 509ers are left. RIP Bud, it was a great honor knowing a man like you.

-Paul DeGaeta

And Back Home Again

     Annie and I were able to drive home on Monday, after another spell at Duke, both in and out-patient.
Tests, Labs, and exams  showed infections of unknown origin. The treatment was antibiotics and anti fungals.
This stay at Duke was another great educational opportunity for us both, as we struggle to understand the terminology and conditons that our Medicos have spent years studying.  At least we now feel that we can pose relevant questions.

      This was a bit of a close call, with the high fever.  The lesson is to wear a mask, even if I am alone on the beach until my immune system has a chance to start acquiring a library of all the stuff out there that a normal immune system deals with every day.

    I am feeling lucid enough to trust posting some of the Blog entries I have been working on,
stay tuned.


C

Back at Duke

     Last Monday Anne and I were walking our mile on Radio Island Beach. At 11:00pm,  100.4 fever sent us to Carteret General  ER where we were kept until the fever broke, and sent home before we"caught something really bad in the ER".  0800 the following am found us at the Raab Clinic where they stashed us in a small exam room, ran labs and got a dialog going with Duke.    IV antibiotics were started for suspected possible pneumonia and staph infection on plastic catheter tubing.

     Admission to Carteret General was arranged, and I moved across the street and got settled in. After Hickman catheter was removed ( with the tip saved for biopsy ) and an  IV was started for meds and blood products.Chest x-ray showed fluid build up in and around lungs.

     And so on Friday the 8th of August I set off for Duke again, strapped down in the back of the Ambulance. Blew the inside left rear tire coming into Kinston.  The Medicos called around and there was a Dukemobile just up the road in Smithville, and I was trans-shipped right outside the McDonalds Drive-Thru there in Kinston.  No one laughed when I asked if Fries came with it.

     Got to Duke and the Night Doc said he had never see such complete and thorough documentation and set of medical records arrive with a transfer from "outside".  It gave me a chance to brag on the Raab Clinic, and CGH.

     So I have been here for 3 nights, and Anne has been up for two, staying with Robin and Willie. I have had  more Chest X-rays, a CT Scan, multiple labs,  tests, a new PIC line ( double Lumen )  installed ( very cool, got watch the positioning on ultrasound screen. The Guidance system also has a tiny gps in it, an works like the rigs for running underground lines, knowing where they will pop out it the ground!)

     I will be up here for a while, until we can get me balanced again and the risks of congestive heart failure and fluid filled lungs are sorted out.    Stay tuned.

Chris

Back Home

Hi there Folks,

     Back home after  a 1 day/2 nights weekend getaway at the Duke Adult Bone Marrow Penthouse in Durham. Blood Tests, a transfusion and some IV Magnesium, and I was pronounced good to go by the presiding Duke and Duchess.

     We did the right thing by going to the Emergency Room on Thursday night, and if I have another episode of a high fever and chills, I will do it again. We had my abandon ship bag packed ( two pr Scrubs, First aid kit, benadryl and tylenol, disposable underwear and gauze pads, two Buffs, wool socks, two long sleeve shirts, a towel and a copy of The Hitchhikers Guide to the Galaxy)  and only had to grab the tackle box with the meds, and my dopp kit, Kindle, ipod, and Medical Records loose leaf,  and we were out the door.  It was a good drill, made it to CGH in about 14 minutes without using the flashers or exceeding the speed limit.

    The nursing staff at Carteret General, both in the ER, and when we were in a room on the new 4th floor was absolutely wonderful - professional and caring,   I must mention Erin, who was most helpful even though she was training two new nurses and had her hands full with other patients.  And even though I had only been inpatient at Duke for 6 days back in April, (right after the transplant when I really tanked and was not very lucid) there were several of the same nurses on duty and we had a good reunion.

     We learned a lot about hospital procedures, and the ride in the transport ambulance  left me wanting one for a camper conversion project. The trip to Duke actually took the same amount of time as the GPS lady that lives in Anne's dashboard says it should. 3hrs 10 min. Of course the GPS cyborg lady does not have to stop and pee, and we rarely made the trip in under 3 hrs 45 min.

     We hope this was just a hiccup in my recovery. It was really freaky the way all my numbers - Whites, Reds, and Platelets - dropped so precipitously from what they had been only 12 hrs earlier.  In the wake of what  must have been some kind of food poisoning they had plummeted, and I lost a lot of ground.  Current thinking is that  the tremors, high fever and nausea produced a Cascade of  Cytokenes, and the chaos caused by a bunch of cytokenes shouting orders to my new baby immune system and the dwindling numbers of my original B predators caused some hematological  cannibalism to occur, which I was able to slow with an antihistamine, and once the fever subsided things started to settle down.

     Some good lessons were learned, not just about packing our own food for a while longer. And I have a bunch more materiel for an upcoming post entitled:

"How to Survive a Hopsital Visit" or "Tips for Staying Alive in Hospital".


Cheers,

Chris