cold day

It is cold today, the best thing that has happened to me was getting the call from the Spa. I got a call from the dermatologist and they are able to move my appointment to Dec 8^th. It appears I have an interesting spot on my back and stomach so the transplant doctors and cancer doctors want me to get these check-up. STILL CANCER free NO Skin Cancer

At the Spa

I am at the Spa getting a tune-up. Actually I am getting checked over since I went down hill on Thanksgiving night (I also felt bad as I experienced BLACK FRIDAY and watched all the money go out the window). I am just seeing the lung transplant doctors today. I did bring my lunch and will not be eating anymore hospital cafeteria food.

My spirometery is up I think I am at about 81% with my FEV/FVC¹ I also lost three pounds between my last visit and now.

I packed a bag with my meds, laptop, Ipod, and three days work of hospital clothes; just in case they have ideas of keeping me here.

Black Friday

I didn't make it; I got sick last night more vomiting and coughing. I seem to be doing better since I call the UT Southwestern (spa) and got them to call in a really strong antibiotic for me to take.

I broke down and got up VERY EARLY this morning and experienced this whole Black Friday phenomenon (Black Friday Craze) for the first time. I was not impressed I didn’t see any of the fighting, or cursing that is annually displayed in the news. I also got good parking; it is good to have handicapped parking.

Happy Thanksgiving

Happy Thanksgiving

I am thankful for my health, family, friends and organ donors everywhere (it is your selfless gift(s) that allow those of us with conditions once considered to be terminal a second chance at life. I am also grateful for the peaceful passing of my father, the patriarch of our family I do miss him terribly; but having faced death on a daily basis and living with the scars that remind me daily that each breath I take may very well be my last, I am grateful I am thankful that he passed away in his own home peacefully and does not have to suffer anymore.

Today will be an uneventful day, I will eat, watch football, nap, eat, watch football, nap and oh yea work on a few projects (at my pace) around the house. The family will be eating and visiting my wife’s family members in town so I will have the house to myself.

Pre-Thanksgiving

It is the Day before Thanksgiving, and I am sad that I won’t be eating any fried turkey on tomorrow; I am sticking to my guns; I won’t be frying a turkey this year. I am still feeling like a little virus or something might be rearing its ugly head. I will ride it out and call the UT Southwestern transplant doctor on call if my symptoms get any worse.

A little under the weather

I am not feeling well; I am experiencing some night sweats, no fever, but some aching joints and possible cold symptoms. I have decided that I won’t be frying a turkey this year as I don’t know what will happen with this unpredictable Texas weather. I will just eat, sleep, and watch football at home while the girls eat over the house(s) of my wife’s relatives.

Bowling Pictures

Team R²

Raegan showing here form, giving bowling tips

Keeping Ravyn from running down the lane,

No that is not a slip n slide

Rhonda and Ravyn (R 1.0 and R 3.0) watching

the ball roll slowly down the lane

It is not cheating unless you get caught, guess

what you just got caught, smile for the camera

Girl Power

Not the winner

The winner

The many faces of victory

The many faces of victory continued, Oh and I don't want to toot my own horn but, TOOT TOOT Victory Tour, HE GOT GAME !!!!

concentration

Intimidation

Busy Weekend

It was a busy weekend I will say this up-front Texas Tech got taken to the wood shed and tossed around the way you handle a little brother that has just worked your last nerve.

Moved furniture on Saturday, Hey I am getting my strength back... in just a few weeks a new gym will be opening at work.... Hello big boy weights I have missed you for it has been almost three years since we broke up.

Got in some sprints while practicing soccer with the family on Sunday, I ran awkwardly up and down the field (neuropathy).... I was tired.... I do have a long way to go to get ready for the 2012 transplant Olympics and total domination of any event I enter... I pity the fools that compete against me (Mr. T voice).

After soccer we hit the lanes to bowl, it was the first time Ravyn got to actually bowl as a participant in the game, I think she enjoyed it. I need to get my average up a few points I would like to average about 190 per game so I can DOMINATE the bowling in 2012.

I am still debating what to do about Turkey Day, should I fry the Turkey or what, last year I fryed as usual and only got to eat Turkey for one day as I was in the hospital for about a week the day after, Black Friday........... the wife and girls were very sad that I was in the hospital but the sales and bargains seemed to comfort them in my absence

Bad News (strep throat)

It seems I can't seem for losing; Raegan was taken to the doctor today and the diagnosis strep throat. I will have to avoid her for the next few days.

Good news for lung cancer patients seeking transplant.
The hospitals that are doing or considering a BAC patient as a lung transplant patient.
Stanford
UCSF
Duke
UT Southwestern
All these hospitals of excellence with great oncology and transplant programs have started opened up with regards to transplanting cancer folk(s) if they meet the transplant criteria. It is good to have an additional option when dealing with cancer rather than the norm with lung cancer, terminal lung cancer which is take your palliative treatment and go home waiting on DEATH to come. We are making progress.

Good News

I spoke with Janet on yesterday she is still at the Stanford Spa but, she is out of ICU, mending and looking forward to getting out. I told her we needed her out b/c the bowl season would soon be upon us and we need to have some of her famous wings.

I missed a call from Bo (BJ) he sounded well, we'll talk soon and I will tell him he is in a marathon not a sprint now, take your time and pace yourself.

The President elect is causing me problems. His promise to get the family (daughters) a dog is putting me in the dog house. The girls R³ all want a dog, I may give in to keep the peace but it must hypoallergenic due to my lung restrictions. Some of the hypoallergenic dog I have seen are unique in their appearance; if we get one of these dogs I won't be able to help myself I might slip up having a color purple moment saying to the dog "You sho is ugly".

Stand Off

Had a medical stand-off, or at least I stood my ground which is not a first (or Last) for me (medically speaking). I had to go see the pulmonologist locally that monitors my sleep or lack there of. I told expressed to him that I wan not going to ever where that CPAP mask again, the engineering of it is flawed and leave much to be desired from a comfort level, I am now going to go with the oral device that a dentist will have to make for me. He also spoke about how bad I looked when he first saw and meet me in the hospital almost 3years ago and that from a medical standpoint had I not had such a radical course of treatment I would be dead by now. Lastly we discussed if anyone in the medical community was writing / re-writing their whitepapers about my case, and I told him I had don’t interviews and other media events but I was unsure about medical papers as I think they are waiting until the five year mark and all their old theories are blown out of the water.

Lung Cancer Walk in NC

I need to be in NC right now taking part in the Lung Cancer Walk in Greensboro right now. I missed my chance to go due to my own procrastination; I tend to wait to the last minute to book my travel now simply because I never know if I will be felling well enough to go on the planed trip. I had a good price on a ticket but in the time frame of one hour (while dropping the girls off at school/daycare and running errands) the price of a round trip ticket went through the roof. Next year I will be there.


Dusty Donaldson

The Spa is tryin' to KILL ME.....

Well it is Wednesday and I think I am on the mend now I have been sick for the since my spa visit on Monday. I was perfectly healthy going into the doctor’s visit but when you have to see multiple specialists in one day it leads to a long spa visit. I learned a lesson that I will in the future bring a lunch on Spa days at UT Southwestern. I came down with food poisoning from eating some nasty crap they over charge everyone for at the Spa cafeteria. The food poisoning had me hugging porcelain for two days and filling like I had been in a football game as my ribs and insides were and still are hurting. Where is my old Pele lunch box from back in the day?

Aside from getting sick or being made sick at the Spa, my visit was good; my breathing is up and getting stronger, I also am still cancer free. I will be seeing a dermatologist since the meds leave you susceptible to other cancers with skin cancer being one of the cancers that the doctors worry about.

Doctor Day (D-Day)

It is D-Day for me in Dallas, TX. I will be occupied with the doctors today (oncology, endocrinology, lung transplant). I am waiting on the lung transplant doctors I probably have about a 3 hour wait so I will go eat and sight see (not losing my place at all). I already saw the oncology docs. and my CT looked great no evidence of carcinoma.

R2 found us

The girls are home, the silence is broken along with a cup and two plates, life is back to normal and I wouldn't have it any other way. I think Raegan is harder than any coach I ever had, she refuses to ride her bike unless I chase her, it was cute the first 7 or 8 times but now she has to realize dad is not in shape yet.

Date Night

Today R² are camping out over their aunts house, so the house will be quite, to make up for the silence Rhonda and I will go out on the town. I am feeling pretty good, so I will be loud, arrogant, and cut a fool (reliving my college football days).

Cancer Free

I picked up my CT results from 10/31/08 and there is no evidence of cancer in my lungs so today will be a good day. I do however still have the bruise on my arm from where the CT IV was run. I bruise easy now and I have a doctors note so I get out of everything, I might get my doctors note framed and strategically hang it throughout the house (pointing to it often when the honey due list pops up).

Vote

I hope everyone that did not take advantage of early voting or was in an area that has not yet instituted early voting gets out to vote today. I am sad for many reasons with the election comin' to an end today:

What will I watch when I get hospitalized the next time??? Food Network (it is hard to stomach when you are NPO waiting on test) or the hospital baby channel?? (two is enough R² are a handful)

I wish I could I could talk over the elections with my dad; he paid alot for his country with his military service and also given the fact he was shot as a teenager while walking the picket lines so WE could vote.

fully recovered

I think we are all fully recovered from the busy weekend so far, all the chocolate I am not supposed to eat (be eating) helps.....Mmmm chocolate (Homer Simpson Voice).

DFW lung cancer walk

I made it through the walk; although my coach (Rhonda) only allowed our team to do the short course 3K, we all made it. I ran the course (in my mind) in spots short burst to keep up with the girls on their bikes or to push Ravyn up the hill(s) which still give her trouble. I had a blast, and the event coordinator Katie Brown more than exceeded her anticipated monetary goal of money raised to go to/for lung cancer research (Way to Go)


Below is a picture of Bud, and myself. Two athletes and lung cancer survivors, basically two hombres that are Tougher Than Cancer. We spoke before the walk/run to motivate, rally, inspire, and put a survivors face to the national health care crisis that is Lung Cancer.

• Remember it is irrelevant whether someone smoked or didn't smoke.
• Anyone can get cancer, yes including lung cancer, yes you can, just look at me and BJ (Bo Johnson and many, many other I have not mentioned)
• Lung Cancer won't be a commonly discussed health care issue until it is de-stigmatized and the medical community makes it a priority to help retrain the public through a partnership with mass media
• THERE IS NO COOKIE CUTTER MOLD or PROFILE of WHO IS A LUNG CANCER CANDIDATE.

DFW Walk for LUNGevity at River Legacy Park Arlington, TX on Saturday, November 1, 2008 Walk for LUNGevity Foundation is a walk/run and family awareness event benefiting lung cancer research.DFW Walk for LUNGevity

Eatin' good in the Neighborhood

The girls really racked up this Halloween, it was there first time really trick or treating; so I walked the on a short tour of the neighborhood on our first trip out (Rhonda stayed and handed out candy). The first trip was not enough to wear them out (I guess at this point they I was on a sugar high) so we went out on our second trip the extended tour of the neighborhood this trip yielded more candy but it also broke their will to search for new prey (aka candy, candy, candy). They were so tired I had to carry Ravyn's candy bucket up to each door, then she would take it to put in candy then hand it back to me so we could move on to the next house. I ended up carry Ravyn home and toting both candy buckets too. It was a good walk though I think most of the IV contrast is out of my system now, walked alot and drunk too much water.

IV CT Today

Got my CT scan today, I had a nice nurse a fellow cancer survivor who was empathetic to my aversion to not being stuck multiple times while having an IV placed in.

I will be drinking a lot of water today about 1 and a half gallons to get all the IV contrast out of my system. I will also be taking NAC pills for the next couple of days to help clear all the radioactive junk out. By the way I hate IV contrast because it tastes bad and burns your insides like fire when it is going in.

The lung cancer walk tomorrow morning, I am looking forward to it; I think we will make it a family event.

Trick or Treat tonight.

Slow Thrusday

Slow Thursday, not a lot going on it is my 3^rd day at home this week:

• Monday out sick with the girls
• Tuesday work
• Wed. out getting the carpet taken out and new floors
• Thursday still working on the floors

I have my CT in the morn. lets hope I don't see any freaky stuff if I happen to use shortcut #32 and cut through the Emergency Room

No Infection

So far I am staying out of the spa, the meds are working on the girls, I hope that any sickness will holdoff until I can do the lung cancer walk on Saturday. I also have to stay out of the spa because whenever I go in my wife goes shopping.

Sinus Infection

The girls are a little sick so, I kept them out of school and daycare today. I took them to the doctor today and they have sinus infections an immunosuppressed persons Kryptonite (or one of our Kryptonites WE HAVE MANY). I remember two years ago ending up in the emergency room because I got a sinus infection from the girls. I hope I don’t catch their latest bug, I hope the antibiotics work quickly… in the mean time I will increase my fluid in take to a gallon of fluids per day, daily and nightly nasal washes with sterile saline, wearing my mask at home, and Lysol spraying my desk at work…..

I ain’t going to the spa.

Busy Saturday, No Time for sickness

Fall Festival at the daycare.

What a busy day.

We got up early today to vote we got to the sub-courthouse at about 0742 CST. The wait was not too long I think we waited about 2 minutes. The girls voted with me I used the both with a chair so the girls could take turns selecting the candidates we liked (using the electronic voting machine).

The last soccer game Raegan played well, next year she will be dominating I will be stronger and able to run more and practice with her and little sister.

Boo At The Zoo, Let’s walk......

Another TGIF

I need to be in two places right now I really need to be hanging out on the block at WSSU’s homcomin’ with my old teammate telling lies, eating, and clowning folks until they start crying. I also need to be at Stanford University Medical Center right now for the 40th annual transplant reunion (to so the neighsayers that were against cancer transplant that performing the transplant was the right call).

Today is the last soccer practice and I am not sorry to see the season end, it has been a long season; Raegan is getting better now we have to get ready for basketball and spring soccer and possibly track and field in the early Summer.

I bought the tickets for boo at the zoo, I should be stronger and have more stamina this year, I plan to walk R³ into the ground (my feet don't hurt so bad anymore)

Gave Blood

Well they took my blood today, I let them use my left hand pretty soon I might start letting the phlebotomist (they need a nickname lets call them blood sucking leeches No that is what I call bean counters tax folks lets call the Medical Vampires (Vamps for short) ; I had orders from the transplant docs. and the endocrinologist. I also am rescheduling my CT that is scheduled for 10/31 to Harris SW rather than UT Southwestern (flash back to 10/31/06 my emergency CT scans) I am worried about switching facilities for my CT because each machine scans differently.

I am not technically challenged so I am making arrangements to go pick up another degree, back to SMU I will either pick up a Master in Software Engineering or a Masters in Security Engineering (I really want to do the Security Engineering it will take me back to my roots when I took off my football helmet and hung out with the rest of the CS majors in Data Structures class hacking away in the good ol' days of ftp Internet surfing..... I technically remanence).

More lab work again

Going to back to the lab on Thursday morn., as my prograf levels were high on last Friday. I also realized after the fact that I had forgotten to take my night time dosage of Prograf (the pill is so small it was just camouflaged at the bottom of my pill box for my Thursday pills).

I hope tomorrows labs go smoothly with the blood draw, orders arriving, and the results looking good.

Zoo

We did the zoo today, walking again this time it is to work out the soreness from the state fair. I am a little battered and bruised from some of the rides the main two that wore me out and worked me over were the Mouse trap (only because I had seen the bits and pieces of ''Final Destination 3" where the kids cheat death on a roller coaster); the other ride was a giant slide about 4 stories high (you had to walk up the stairs / ramp / stairs / ramp .....until you reached the top) when I got to the top I was tired as hell and needed a rest, wipe my brow let me catch my breath then I will slide.

Ravyn and I at the zoo Mom, Niece at the zoo w/ the Flamingos

State Fair & Soccer Pictures

Raegan and Grandma, (side note happy after a loss, there are no smiles in a loss, get angry)
What is wrong with Me, I seem to be happy after the loss too, it must be the medication.

The doctors tell me to watch what I eat as transplant patients have dietary restrictions, I am following their advice I am watching what I eat, COME HERE COTTON CANDY GET IN MY BELLY, YOU TOO PUSH POP
Look out fair R³ (Rhonda, Raegan, Ravyn), Mom, and Niece oh yea an guess who is working the camera
A truck like Daddies, except it is Pink
Let's eat the Girls went through 4 Corny Dogs this year.
Last year Ravyn was too little to ride this ride.
Of course we had to go look at the trains, the girls love trains

Tired

I think I bit of more than I can chew, lick, and digest... but it Taste good going down though. We took the state fair by storm and I made it through all 6+ hours that we were there this year. I pushed R² (Raegan and Ravyn) as they kept hopin' on and off the stroller (the same stroller that almost killed me this summer when I used it to give the girls a bike ride to school). I was alot stronger and successfully conquered the Cotton Bowl this year, "You can't break me I am still standing, I am still strong..." we did almost all of the rides ate too much the only thing we didn't do was play any of the games It was a good time. Everyone enjoyed the fair, we all left singing my feet hurt...



Oh yea I had blood work today, so I need to keep my levels in the acceptable range or else the doctors will want to see me, (take a picture).

Let the fun begin

Mom and niece made it into DFW with no problems so let the good times begin; Oh yea I am keeping my sickness or pending sickness at bay. I was hoping to add another event to the weeks itinerary but I am happily skipping the UT Southwestern transplant reunion of Friday 10/17/08. The medical team at UT Southwestern monitor and oversee my treatment right now but my loyalty will always be to Stanford and Dr. Weill as he and his team went out on a limb in transplanting a cancer patient.

Lazy Sunday

Soccer Yesterday, Raegan played well we just have to work on her hustling a little more.

Finally getting around to replacing (most) of the carpet in the house so I can cut down on some of the dust, dirt, allergens, mold that carpets hold which will damage my lungs.

I think I might be coming down with a little something, I don’t have a fever but everyone around me (work, home….) has some sort of cough and or sniffle, combined with my flu shot I might be catching a little something.

I hope I am not leaning toward a spa trip because I have a busy week ahead as my mom and niece will be in town and we have a lot planed for them (King Tut exhibit, circus, State Fair, TCU soccer, zoo, breakfast / lunch with Raegan at school, and Ravyn’s dance class; I have no time to be sick.

Flu Shot

Got my flu shot today @ work it was an inactive influenza virus shot, let's hope it work, lets hope I stay away from the spa.

Post Debate (economy, health care......????)

got some substance and a near confrontation, was glad to hear about medical plans whether I was for the plans or not

I don't know if having private health care credit 5000 will help I spend 5000 a year on medical parking alone and can't get health care outside of a company I work for, Hello cancer patient transplant recipient need i go on....

Political Smack down

Debate night, LET'S GET READY TO politically RUMBLE.

I get excited about the debates as I am focusing on the current state of the economy (local, national, and worldwide GLOBAL) and health care very intensely. I hope we hear some real answers and are feed some meat, and don't have to dance with the stars tonight.

Dogs at the track

Dogs mans best friend, but a true enemy to transplant, cancer patients because of all the germs they are so willing to share. Don't get me wrong growing up we always had a dog until our last dog (Bruno) went on to roam greener pastures, I do miss Bruno he wasn't the brightest dog on the block but he was very big and loyal to the end. I digress.

The family and I went out to get in some cardio at the local Jr. high track, the girls riding their bikes, me walking/jogging/jumpin' rope, mom COORDINATING our activities / YELLING / shouting encouragement. A long story short after about half an hour or so of riding the girls wanted to join me on the track (in a gated area so I let them in); at the same time a lady pulled up with her three very large, and friendly labs to play and exercise inside of the fenced track. The girls started screaming when the dogs came near so I quickly got them out of the gate and cut my workout short. The lady wanted the girls to meet the dogs and was looking to me to set an example but I AIN'T GOIN' BACK TO THE SPA so I DIDN'T pet DA POOCHES , I hope I did not offend her as I did not explain my medical history or my pet no pooch rational, I don't feel I need to explain everything to everyone, The girls did pet the dogs so that was ok. I have heard Raegan explain to one of her soccer teammates that my daddy is allergic to dogs so tell your daddy to keep your dog away from my daddy.

Dumb it down, lowered expectations

I try not use this as a political forum but the next president will have a direct effect on the medical coverage and care I will receive in the future. I also think these debates are a joke if I wanted to look into someones eyes I would stare at my wife for hours until she blinked, if I wanted to hear geechee phrases I would go home to the Carolina's. I only hope we can get some substantive answers in one of these debates or town hall forums.

Show cancer some love, everything is not pink only

Random thoughts from an over prescribed mind..... take these ramblings with a grain of salt and a spoon of Castor Oil or Cod liver oil if you like.

Breast Cancer has an almost endless supply of funds and seems to flood the market with easily identifiable objects that flood the market and make people think pink, and fight for a cure for breast cancer. I can't even watch football without having to fight for a cure. Can we as a society put some effort toward the other cancers that take more lives than breast cancer ever will, stop letting the people that suffer from cancers other than breast cancer suffer in silence because of lack of fund for new researchers to cure them and stop forcing them to hide ashamed of the stigmas their cancer may carry with it (true or not).



Running Shoes: I got some new running shoes the other day and some new walking shoes, they are big size 13 wide, and size 14 respectfully..... you know what they say about guys with big feet.... uh they have big shoes of course, what else. Anyway these new shoes do make my feet feel good, as my feet are still numb and swollen (neuropathy).

Nervous (my 70's hit)

Is everyone around me sick or what?????? work, home, school (elementary school), daycare, grocery store, it is time to start wearing the mask everywhere and giving the folks that want to hug, shake hands, the rock star dis and walk on by as I sing (um hum... um recite in my grade la cabesa) the song staying alive by the Bee Gees using my artistic license to insert words where I see fit like staying out of the spa ....


The streak continues I have only been hospitalized once this year (April with phenomena) I still think that spa visit is haunting me because I got a bronch and the nostril that all the tubes went down still itches like crazy..... or maybe it is the deviated septum that I was diagnosed with as the reason for my coughing before being diagnosed with cancer.... go figure Staying Alive Video

Lyrics as I see them club banger:
Well, you can tell by the way I use my walk,I'm a hospital man, no time to talk.
Music loud and hospital robe warm.
I've been kicked around since I was born.
And now it's all right, it's O.K. And you may look the other way.
We can try to understand The Saturday Night Lives effect on man.
Whether you're a transplant brother Or whether you're a transplant mother,
You're stayin' alive, stayin' alive.
Feel the bed pan breakin' And the nurses shakin'And we're stayin' alive, stayin' alive.
Ah, ha, ha, ha,Stayin' alive.Stayin' alive.Ah, ha, ha, ha,Stayin' alive.
Well now, I get Shots and I get IV's if I can't get either I really try.
Got the hospital house arrest anklet on my shoes I'm a dancin' man and I just can't lose.
You know it's all right, it's O.K.I'll live to see another day.
We can try to understand The New York Times' effect on the man(the doctors) .
Whether you're a transplant brother Or whether you're a transplant mother,
You're stayin' alive, stayin' alive and stayin' out of the hospital (spa) ...............

Normal

I can finally same I am pseudo normal as it relates to my tach levels I am not too suppressed and my levels aren't too high my tachrelemus levels are finally where the different transplant doctors want them to be hovering at about 10.0 to 10.6 / 10.7... ish which is good; because it is cold and flu season and y'all are making me sick.

Church Sunday

Our Cowboys stunk up the field today (Run the Ball); it has been a bad year, my teams aren’t doing so well, (WSSU, SMU, and the Cowboys).

Visited the church of my brother-in-law and sister-in-law which was a good visit I stayed alert for the whole service. If I have one complaint that is everyone wanting to shake hands I don’t do a lot of that b/c I don’t want to have to deal with all the germs people are caring this time of year. I hope people don’t take it personally if I don’t hug or shake their hands I am just trying to stay out of the SPA (hospital)

routine Thursday

Nothing new, this is the worst part of the year for transplant recipients that are naturally immune suppressed after receiving their life saving transplants. The girls are sick and Raegan being in school has geometrically increased my germ pool from what it once was when both girls were in daycare only. I hope I don’t catch anything that they will be bringing home my goal is to have no more SPA (hospital) stays for the rest of the year.

Soccer Saturday after the Friday night fights

Friday
I almost set it off in Target while shopping for the girls new bathroom ensemble; some young punk (cuss word) were smoking a cigar in the store (hey buddy the store is smoke free), my wife got a little embarrassed b/c I was the one out of all the shoppers in the store (also buying) ensembles that told the kids to put it out or leave the store young punk......You can smoke outside away from the store; the law allows for that. The doctors put me on more meds the other day, hormone pills mixed w/ steroids I really don’t think I need the hormone pills (still counteracting the chemo from 2 years ago) as you can tell from the previous paragraph I am all right, mean, hostile and still subscribing to the philosophy that sometimes for principal you have to kick some (fill in the blank)


No bumps on my arm today at practice, I think the bumps were the result of the sun block, just long sleeve shirts were worn to soccer practice today.


Saw the pulmonary docs today that prescribed the CPAP, they weren’t happy with my lack of using the mask. They told me I would die without it, got me scared (not) news flash I am going to die (one day) anyway. I will try to do better about wearing the mask.

Saturday
Double header in soccer today, I hope Raegan doesn’t get too tired, 2 hours of running.

Uneventful weeks, are good

It was another uneventful week, I still have not gotten the results back from my lab work on Saturday, so the UT Swtrn folk can expect a call or two on Monday (so can the lab). Will be spending time with the pulmonary sleep docs on Friday who I am sure will try a little pshycology 101 to get me to use the fighter sleep mask (psychology 101 won't work on me I took the class TWICE, ) It is hard to use the mask since I have been so congested for several week

Soccer tomorrow I am looking forward to Practice (Practice I am talking 'bout practice), I will also go without sunblock to see if I can reproduce the white bumps that I have noticed on several occasions appearing on my arms; I wonder if my sunblock is to heavy 60 SPF,

Bo broke out today

Bo got out today, welcome to the other side.

happy Birthday

Happy Birthday Rhonda I am not saying your age.

Ike and Tina are comin'

We made it through soccer practice today and I even played a little goalie and got some running in with the team. I didn't cough up any crud today but I can feel the stuff in my chest and hear it in my breath.


We made it through one period at the TCU / Rice soccer game, next time we will have to get there early so the girls can go out on the field and kick goals against the TCU mascot.


I am worried about these heat / water bumps I seem to get when I am outside running; I don't know if these bumps are due to all the different meds that I take or if it is due to the sunblock I am using; I will have to conduct some test to try and get to the root cause of what is causing these bumps to appear.
Picture of my arm, with the bumps present.

Blood work in the morning.

Stanford University Medical Center Lung Transplant Support Group

The following is a presentation and interaction between members of the lung transplant support group at Stanford University and the medical staff that care for them (us) particularly Dr. David Weill. Thanks for letting me post this valuable information.

Notes: Stanford Transplant Support Group,
June 6, 2008 Dr. Weill (2:00 -3:30 p.m.)
Presentation:
1. There are 3 types of Rejection

A. Acute i. 100% treatable ii. Is reversible iii. Occurs with 60% of recipients in the 1st year post transplant iv. Defined as a 20% drop of the FEV1 number that recovers with treatment v. Treated with intravenous steroids (Solumedrol)

B. Chronic i. Also known as BOS (Bronchiolitis Obliterans Syndrome) ii. 4 stages, 1 thru 4 iii. At stage 1, FEV1 number has dropped 20% over a three month period iv. Stages 3 and 4 are worse, patient may become 24/7 oxygen dependent, may consider re-transplant v. Stage 4 re-transplants are becoming more common when they can’t slow the rejection. With re-transplantations, the surgery is much harder as it takes a longer time to remove the transplanted lungs; the ICU stay is generally rougher also.

C. Antibody Mediated [discussed later] 1. Treatments for Rejection 1. Steroids, change immunosuppressant medications 2. ATG – IV heavy duty immunosuppressant which attack of t-cells, hospitalized to watch for infection 3. GERD can cause aspirations which may result in inflammation or fungal plitation (sp?) in the lungs, treated with RAP (long name that I didn’t get written down), with 5-6 patients who were still showing signs of GERD, surgery was performed 7 days after treatmentQuestions and Answers: 1. How do viruses fit in with rejection? 1. RSV – seasonal 2. Pera influenza 1 and 3 – detected with nasal swabs, treated with inhaled rhybovirin in the hospital 3. MAC – unknown 4. MRSA – unknown 5. A virus is where an upper respiratory infection does not go away in 3 days, see the transplant team 2. How many lung transplants and patients is Stanford working with? 1. 30 transplants so far this year, expecting to do around 60 total. 2. Treating 350 outpatients 3. The numbers are increasing! 3. How are lungs allocated? 1. A lung allocation score based on a number of criteria is assigned, a 35-45 score out of 100 places you fairly high on the wait list 2. Re-transplants receive lungs faster 3. Transplant waiting times are a matter of weeks

2. What about age – what is the philosophy for a cut off?

Stanford looks at the individual, if a patient is exceptional (like Dennis), they will transplant at any age 2. The published age cut off for lungs is 65

3. When are re-transplants not a consideration?

When a patient has severe kidney or liver or coronary disease 2. A number of patients have received new kidneys as well as lungs

4. What constitutes the stages of chronic rejection?

(no rejection) is where the absolute FEV1 number is within 20% of your best FEV1 2. 1 if your FEV1 drops 20% 3. 2 if your FEV1 drops another 10% 4. 3 if your FEV1 drops another 10% 5. 4 if your FEV1 drops another 10%

5. What triggers a bronchoscopy? Is it how rejection is diagnosed? 1. A 10% absolute drop of the FEV1 triggers a bronch to look for rejection or infection. 2. A bronch is not necessarily a good indicator of rejection; primarily breathing test results are used.

6. How/what treatments are used to treat rejection?

1. The course of treatment is determined by the doctor on the individual. 2. IV meds are used over oral meds because of absorption 3. A number of transplant recipients require a kidney transplant because of the toxicity from the immunosuppressants

7. How are allergies related? 1. Sinus infections can cause lung infections, but allergies should not result in lung infections.

8. What about inhaled cyclosporine? 1. It is not in the next phase of trials yet. 2. There will be clinical trials for newly transplanted patients starting soon with two goals: i. Does it give the same dose as oral versions? ii. If someone is in rejection, should this be added as a treatment? iii. The medication in the trials is by ATP, the delivery system is NECTAR.

9. What about the on-going lab testing as an indicator of rejection”

It is inconclusive, still continuing the study.

10. What about antibody mediated rejection?

1. There are blood and donor specific antibodies, if mis-matched there is a compliment complex and can be treated: i. Plasma foresis – 5 day wash ii. IVIG fluid iii. Rituxinmab 2. 40-50 rejections with 3 antibodies 3. Biopsies are performed to determine if there is an issue 4. This usually occurs 6-12 months post transplant 12. What causes rejection? 1. Aspiration from GERD PCR 2. CMV – being followed more regularly 3. RSV, Para Influenza 4. Changes to white blood cell count i. If it drops reduce meds, drop Cellcept, bactrim, MMF ii. If elevated, indicates bacterial infection – will this cause rejection? Unknown 5. GCF could cause attacks on new lungs

11. How often are bronchoscopies performed?

1. Stanford follows a Surveillance Program approach for bronchs 2. Hyper vigilant the first year, then by ear 3. After 2 years, the yield from bronch is very low and may be more invasive a procedure than what it may show. 4. Basically if you feel well, all is well,

12. Will prednisone be eliminated as a post transplant med for lung patients?

1. [Emphatic] NO, not in lung transplants, coming off prednisone leads to a fast death, it too risky. 2. After 1 year, immunosuppressants are reduced with prednisone tapering down to 5 mg, tacrolimus is also reduced. This is because infections are too prevalent at high levels of immunosuppression.

13. Does exercise affect post transplant survival?

1. This is not proven, but those who exercise feel well enough to exercise so it may be an indicator of overall health.

14. What about reconnecting the bronchial artery during transplant surgery?

1. It increases circulation which is better for transplant recipients long term. 2. It protects against rejection. 3. The surgery is risky as it adds 45-60 minutes to the surgery 4. Under consideration, but not high on the transplant surgeon’s planning

15. What about dietary supplements of antioxidants?

Are they OK with all our meds? 1. There is no data, do inform the transplant team if you are taking any

16. What about probiotics?

Unknown, no data

17. I am pre-transplant, should we remove the carpets in our home? 1. No

18. What about animals?

No birds, no cat litter – somebody else will need to clean the litter box (cheers from the crowd)

19. What about foods post transplant

No sushi, raw oysters grapefruit or grapefruit juice, cook things through (this is what he would do), but the grapefruit can affect absorption of immunosuppressants

20. What about West Nile Virus? 1. He has seen 3 cases, avoid being outdoors at dawn and dusk, use insect repellent

21. What about mental status post transplant – I seem to forget more post transplant and have to write things down?

Neurological affect of immunosuppressants is common 2. Also blindness and seizures have occurred 3. Cycloclosporine causes more issues than prograf

22. What about Wart treatments?

Systemic, localized treatment is OK

23. What are the long term side effects of immunosuppressants?

High blood pressure 2. Kidney damage 3. One-half of transplant recipients have these

24. The transplant doctors aren’t talking to each other, we are getting conflicting courses of treatment – what are you doing about that?

Three of the 4 attending physicians are on the same page, the other is overly aggressive. Sometimes, it’s better to wait and see vs. treating it since every treatment can cause harm. 2. The team takes the top 10% of patients with issues and discuss them on Friday mornings 3. With the large number of patients, it is impossible to follow every individual all the time 4. They are looking to expand the staff from social worker, to nurses, to physicians, but don’t have the finances approved 5. What can we do about this? (audience comment) – write letters to hospital administration [Allyson to provide address!]

25. What about pseudomonas and solumedrol?

Is one of the possible side effects death? 1. Treatment of solumedrol when a patient has pseudomonas is not recommended, and no it won’t kill you. 2. One of the attending physicians said it could kill you (audience comment).

26. How prevalent is RSV?

There have been 12-15 cases at Stanford in the Dr.’s experience. 2. This is much lower than he saw in Colorado

27. What other changes are taking place?

The pulmonary rehab is closing down as a number of other rehab facilities 2. This is not a money maker (audience comment)

West Coast Article

Dusty pointed this article out to me.

http://latimesblogs.latimes.com/booster_shots/2008/09/lung-cancer-in.html


Lung cancer in nonsmokers — who's most at risk
10:01 AM, September 9, 2008
Smoking may seem synonymous with lung cancer, but it isn't. Those who have never picked up a cigarette can still develop the disease and, in fact, 10% to 15% of cases are blamed on factors other than smoking. Now we have a clearer picture of the disease in nonsmokers.
In reviewing lung cancer cases among lifelong nonsmokers in North America, Europe and Asia, researchers with the American Cancer Society have established that:
Men are more likely to die of the disease than women, regardless of age or racial group.
Men and women are almost equally as likely to develop the disease at age 40 and beyond.
African Americans are more likely to die from the disease than are those of European descent.
Asians living in Korea and Japan, but not in the U.S., are more likely to die of the disease than those of European descent.
The disease doesn't seem to be rising among women in the U.S. (Again: The study was among nonsmokers — the rise among women smokers has been well-documented.)
The disease is more common in East Asian women than in other women.
Here's the full report — available to all at PLoS Medicine.
If you're looking for a personal account of a nonsmoker with the disease, check out the blog 2newlungs. It's about the daily — medical and nonmedical — life of Jerrold. He describes himself this way: "Former football player and never smoker who beat stage 4 BAC (lung cancer) and survived a bi-lateral lung transplant at Stanford University March 2007."
And of course, for all the statistics and information you could possibly want about the disease, there's the American Cancer Society and the National Cancer Institute. Smoker or no, the disease is horrific.

— Tami Dennis

(The first words in this post were originally "Lung cancer." The intended word, "Smoking," has been substituted to correct that mistake.)

Transplant Olympics

Lance stole my thunder; I was supposed to be the cancer hommie that made the big sports announcement this week. I missed the transplant Olympics this year but I plan to be there (at the transplant games) in two years 2010. Who I will represent will be negotiated by my agent (North Texas who wouldn’t transplant me but keep me alive now, or Northern California who saved my life).

I think I will compete in several of the Track & Field events, Bowling, the Virtual Triathlon, maybe some swimming events too depending on how the events are scheduled. I predict gold in the following track events:

100 yd Dash
200 yd Dash
400 yd Dash
Long Jump
Shot-put
Discus
Softball Toss

I predict I will medal in the Virtual Triathlon and bowling.
I will show in swimming but I need to work on that when I can, remember there are a lot of pool borne viruses I am trying to avoid all the time.

A link to the 2008 Transplant Olympics is below:
http://www.kidney.org/news/tgames/index.cfm

Raw, early reaction to Stand Up To Cancer

Did not get to watch the whole show I think I missed the first 20 minutes because we were late getting from soccer practice today. I plan to be more active and participate more in the extra curricular activities we sign the girls up for.

My early reaction and initial impression about the show is a positive one but, I do have a but; so I have some positive comments and a negative comment too.
Positive:
It is a start, this show, this movement raises awareness, funds, and motivates many tired individual stakeholders letting them (us) know that we are not standing alone. Many of the treatment we must endure weakens us so to have some one else standing beside us spotting us is great, cancer is something we all have to work to get rid of. I hope this is just the beginning with more attention on this health epidemic to come. Thanks to the network(s), medical community, scientific community, monetary donors, survivors, family, friends...... let's wipe out cancer one patient at a time.

Negative:
I did not hear alot about lung cancer, is that old stigma still getting in the way? It was implied by one of the famous folks manning the phone that implied lung cancer is caused by smokers. Anybody and everybody can get lung cancer.

Bedtime for me I am tired and have been coughing up some pretty big clots from my lungs this week.

Stand Up To Cancer

Don't forget to watch stand up for cancer, as it irrelevant as it is I was a never smoker and I got terminal, in-operable cancer (I BEAT IT THOUGH); my point is if it (Lung Cancer) can happen to me IT CAN HAPPEN TO you TOO, stand up.


ABOUT STAND UP TO CANCER
What is Stand Up To Cancer?Stand Up To Cancer is a new initiative to raise philanthropic dollars for accelerating ground-breaking cancer research through an unprecedented collaboration uniting the major television networks, entertainment industry executives, celebrities and prominent leaders in cancer research and patient advocacy.
Stand Up To Cancer includes:
A nationally televised fundraising event to air simultaneously on ABC, CBS and NBC at 8 p.m. EST and PST, and 7 p.m CST on September 5, 2008;
Standup2cancer.org - an online community for everyone affected by cancer;
A public service announcement (PSA) campaign featuring celebrities and members of the public to mobilize support for the campaign.
What is the goal of Stand Up To Cancer?Simply put, Stand Up To Cancer's goal is to end cancer's reign as a leading cause of death by raising funds to accelerate research that will help transform cancer from a disease that takes lives to one people can manage and live with.
Stand Up To Cancer will fund the most promising cancer research projects and unite the best scientists who are on the verge of critical discoveries that can quickly provide direct patient benefit.

Picture Post, guess who got stuck w/ camera duty

Stop talking to strangers, you have alot of family in N.C. but she is not our cousin

Circus pictures, a daddy daughters date night.
Let me finish your hair, or you can wear it like that be natural, free, independent
First day of school, I was not allowed to do their hair for some strange reason

I am a Princess.... That is fine you better stay away from boys today, tomorrow, the next day, remember daddy is sick but not to sick to set it off, STAY AWAY FROM BOYS
First Day of school, parting is such sweet sorrow
I think I can
I know I can
FREEDOM, I can ride by myself no more hurting daddy's back riding on the sidewalk. One down one more to go, I think we will start Ravyn off on two wheels early.