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.

Another A1C

Took another A1C test today and got stuck twice once in the arm (the vein in my forearm didn't work it was too small and rolled, the vein in my hand worked fine I knew it would but I worry about getting too much scar tissue in my hands as I always get my blood work drawn from my hands now)

Labor Day

Testosterone and steroids working (Errr) I am mad at everyone.

Raegan can ride her bike two wheels you go gurl, no more neighbor hood sprints for me I figured she needed more room than the neighborhood sidewalks so we took her to the parking lot of the high school around the corner and away she went, there goes my transplant Olympic training.

Soccer, picnic and vomit

This weekend is a holiday weekend but we won’t be able to get in rest, I am just happy that I am not kicking off this football season in the spa (hospital), its hard to find or sneak in hot wings and beer (root beer) when your on the heart lung floor…. It can be done though…. It is not mission impossible you do deserve some comfort while uncomfortable in the spa…just tell them that the orange stains on your sheets and gown are IV fluid that leaked out from one of your IV bags…

Friday we went to watch TCU play Xavier in soccer, I am sure it was an exciting game Rhonda and I wanted Raegan and Ravyn to see some positive women’s sports. Our family time at the soccer game lasted longer than our Texas Rangers game (viewed after the transplant softball game May 2008, we didn’t even make it to the first inning heck we didn’t even make it to the national anthem the girls were hot and needed a nap) I digress… we saw one score by TCU all told about 45 seconds of soccer and 4 minutes of halftime before the flood gates opened and Ravyn threw up on the people in front of us (I told y’all to sit down) then she threw up on Mommy, threw up on Raegan, threw up on the people on the stairs (clear a path, move) I slight stomach virus… she is fine.

Today we had our church picnic and Ravyn was fine playing like nothing happened yesterday, she and Raegan enjoyed the water bounce house I will have to post pics later, Rhonda and I enjoyed having grown folks talk as it was our first time being able to go to the church picnic since 2005.

I was supposed to get another A1C blood test today but they were closed for the holidays so I will get it on Tuesday and send it off to my medical Posey

I feel less sick, less congested today

School Daze, First week of school

We are wrapping up the first week of kindergarten today. The first week of school is basically a rollercoaster of emotions for me and the family as well. Watching Raegan go off to school marks a milestone I shouldn’t have reached so medical community cut and paste that and insert it into your revised white papers. The rollercoaster for me goes from the prideful high to the scary lows in this case the lows would be the geometrically increasing exposure to bugs, viruses, infections, and other health aliments that all school age children seem to pickup and bring home. My goal, the goal of any transplant patients is to stay out not just because the spa is an unpleasantly frustrating place, but it is expensive because of the medical bills and in my case it gives my wife a chance to shop (shop, shop, shop “Women be shopping”, Chris Rock) with out hearing any objection to her purchase from me.

Gimp legs

Groggy today I broke down and took the sleep meds the ones I refuse to take anymore since I really could use some sleep (REM / deep sleep), I have not been using the CPAP machine even though I have a new mask (not the full face fighter jet mask) the nasal mask won’t work right now with all the nasal congestion that I have right now. The only problem with taking the sleep medicine if you don’t get to lay horizontal for at least 8 consecutive hours your legs won’t be under you for a few hours when you get up and try to function in the morning.

More Drugs....

Normal day, I just got the all clear from my nasal wash cultures so I don’t have any virus or there was nothing that showed up in the test that the transplant doctors performed on yesterday.

I visited an endocrinologist on yesterday to discuss some of the changes I felt needed to be addressed and to also look into the steroid diabetes most of us transplant patients get. He is of the opinion that many of the side effects that I discussed were due to the hard chemo that I received more than two years ago. It will take years to HOPEFULLY recover from that RAT POISION. I was given a new drug to counteract some of the effects that are going on, he said that the chemo messed up my hormones my response was “What chu talkin’ bout Willis, pouting) they want me to take a hormone med (Testosterone pill/ or shoot; I will take the pill for $200 Alex the shot is self given with a LARGE gauge needle and they hurt like HELL take my word for it)… I am now taking Testosterone and steroids and lifting weight (can you say angry man in the gym, but I have a doctor’s note so it is okay)

Still waiting for the results of my A1C test from Friday.

I think I am getting sick

I feel like I am coming down with something I have alot of nasal congestion and drainage (clear), no fever, no shortness of breath, weight is steady, and no releasing of fluid / matter from either end, constant cough, headache.... self diagnosis allergies or some sort of a summer cold.... it is time to pop some new pills after a nasal was.

Your Fired???

Friday: didn't do much stayed alive, the girls went to daycare via the car the bike stayed in the garage today (until) I get in better shape. Had a physical today to finish off the final test to satisfy the annual transplant requirements that I didn't satisfy in April of this year. I like this doc. but he might get papers (i.e. fired) reflecting back on the visit I know I make doctors nervous due to my condition ..... but they didn't even take my temp. during the physical.... that is standard even on me. They did do some blood work so I will get to find out the results of my A1C soon (a 3 month snapshot of my blood sugar levels).


Saturday: Ran some sprints / maybe jogged about 10 100's, back pedaling 2 of them ran a few hills/ bumps in the earth (Texas is flat), some push-ups topped off the workout

Sunday: more running and soccer with the girls, Raegan (the oldest) is very competitive and quick tempered, Ravyn listens well and is stubborn.... excellent traits, I like

My feet hurt

My feet still are bothered by the neuropathy from the (chemo) ratt poison I once endured.

My feet swell after a workout and after a jog, or soccer session with the girls.

I feel I have big shoes to fill, I have a price to pay for the gifts given to me, I have to pay it forward for those that will unfortunately travel the dirty roads I have driven. Speaking of feet I had to get some new shoes the other day.

Regular feet can't be affected by irregular shoes.

Back to Normal

Back to normal, looks like the girls and I will have to eat in the kitchen sitting in chair, using silverware, napkins, manner and all the thing a civilized society demands of us, Rhonda returns today.

I am waiting to see if the UT SouthWestern SPA will emerge from the dark ages, disregarding the statistical outdated facts and figures that don't apply to many of the current cancer patients that they are seeing who may or may not be eligible for a lung transplant. This data they (many of the transplant centers of excellence) use to help base their transplant decision is irrelevant since the medicines have changed, the equipment has changed, the patients are receiving better care for their cancer before transplant, and the patients are strong and healthy they just have two bad lungs. Their are 4 BAC patients (including myself) that I known of that have been transplanted get your data points from us and our progress...... better yet allow us to speak to you oncology or transplant review boards so they can connect a face, a family, a community to the medical notes on the CASE (patient) seeking the life extending procedure known as transplant (bi-lateral lung transplant to be exact). Sorry on my soapbox when change is resisted... you know if the patient and his or her family are will to take a risk then take a risk don't throw in the towel....

On a brighter note The Johnson Family "Gump Family" need a shoe contract b/c Bo is walking, walking, walking...

Soccer tonight with the girls, then ride my bike after they have gone to bed and run some more, I might take them to daycare in the morn. on the bike but we shall see on that one (They are trying to kill me)

ChickenPox

I ain't gona make it, now there is a warning at the day care as one of the babies has ChickenPox, the child is an infant so he/she is not in class with Raegan or Ravyn but I still ain't gona make it. The daycare is taking all my money and also putting me in the grave alot sooner than I would like to go. I thought in Texas you automatically get vacicinated for Chicken Pox before you leave the hospital at birth. I am going to have to come up with an alternative way of dropping the girls off and picking them up from daycare because going in and out of there is putting my health in jepordy.