11 + years post lung transplant

Today marks 11, 11+ years post lung transplant.  😋😁

10 years post double lung transplant

10 years post bi-lateral lung transplant, enjoyed my time on the Farm forever grateful to Stanford University and Dr. Weill thank GOD.  I am taking the high road and not poking / tweeting anything about the medical neigh Sayers and the hurdles they put in front of me along the way.

11+ years since being told I had stage IV lung cancer ..

I posted this on Facebook on 2/1/2017

Today marks 11 years since I was properly diagnosed with stage VI non-small cell lung cancer (BAC). Since 2/1/06 I have had over a years worth of 6 different types of chemo, had my lungs replaced; seen the cancer come back in my lungs 3 seperate times after the transplant; and had appendix cancer which caused my appendix to be taken out along with a foot of small & large intestine. With all that medical / health crap I am still hear God is good he has a plan for me so I won’t complain. Next milestone 3/7/17... 10 years post lung transplant.....

Still here I want to go back to work now!

Hello,

Good folk.  I haven't posted in a while, from now going back 13 months I have had too many spa visits.  I went into rejection March / April of 2014 .....and now the rest of the story...............

• rejection had me hospitalized April
• May more rejection and bronchoscopies
• June emergency surgery appendectomy
• July new cancer a rare unrelated cancer in the appendix
• July had more stinking surgery a foot of colon and small intestine was removed
• August  can't remember
• Sept. more stinking spa visits
• Oct 2014 - Jan 2015 more doc visits and bronchs
• Feb 2015 more doc visits
• April 2015 colonoscopy (another dang oscopy) 1 polyp bad it was clean (good.... get it a clean polyp out of the colon that is your a$$ NOTHING clean comes out of there.
• May 2015 trying to return to work, but I hope to telecommute as it would be the safest way for me to work but my employer a govt. contractor in Fort Worth is not on board with the ADA approved accommodation request.  Note my lungs are stable but function a little over 30% and I have portable oxygen to use as needed.

That brings you up to speed, it is the abridged version of the last 13 months.

Another year...more medical stuff

Listening to CNN as they talk about Stu Scott and his cancer. They are talking about how rare appendix cancer is and how it is often over looked. I had my appendix taken out this summer after many trips to the ER and constantly complaining of stomach pain for more than a year...falling on deaf ears with doctors. The docs thought it was appendicitis but it was actually cancer a rare cancer…. It is like having lung cancer all over again. Now the doctors have found something on my liver (damn) what’s …. Pink eye on my feet??????

Another Dang Cancer

Dang, got the results back from the pathology department and my appendix seems to have cancer in it. More details are unfolding as I go forward communicating with the different doctors that I will be dealing with over the next few weeks. 

never a dull moment

I can't win for losing last week I get pink eye this week appendicitis I wonder what next week holds for me.  Oh yea I am at the  spa using the AER entrance

ER trip 6/1/14 10pounds of fluid in 2 days

Really disappointed today after having to go the ER at about 0300 this morning.  I didn’t know what was going on, I gained 10 pounds since May 28, 2014 (all fluid retention from IV bags).  I thought I might be getting some of the fluid in my lungs and around my heart but the EKG, x-ray, and labs looked unremarkable (good news).  My hands, legs and feet are / were so swollen I can’t even comfortably wear shoes right now.  With the diagnostic test done and unremarkable I was given a Lasik pill to help take off some of the water I plan to see my primary care doctor on Monday.

 

I think I might be breaking up with Baylor Medical in Dallas (going have to get some chocolates and and flowers for that other teaching hospital in Dallas from whence I came), I called the operator a Baylor Dallas requesting a heart or lung transplant doctor on-call to update them on my status since I am in a current state of rejection….long story short after 4 calls and being bounced around I got no one connected the transplant office   (Pissed as hell to get good medicine you need to have good bi-lateral communication for the partnership to work)  if I can’t get good communication to go along with good medical care I will seek it out elsewhere.

 

I did learn from the ER doc that treated me that I don’t have to have the Sodium IV bags when I get procedures done,   so no Sodium IV bags for me!!!!!

Bronch 5/29/2014

Just finished my latest Bronch at Baylor in Dallas so I am sitting in recovery wearing my hospital dress fashionably of course.  I will say it was the best sleep during the procedure since I got out of the hospital in early May.  Bronch was okay got some new antibody so I am taking a broad sprctrum antibiotic.  I think this time around I was able to shake the bronch meds in 30 mins and become functional.

I am ready to go, ready to eat, and ready to watsome bball.

I hope I have no typos if I do blame it on the sauce :-)

the streak ends

Back in the hospital again seems like my lungs are a little sick right now.  Let'ssee what Baylor has to offer.  So far I am enjoying the atrium cafe. Waiting for my bronch .

What Day?? Lungevity Walk Day

Getting ready to walk for those folk dealing with LC that can't.  I didn't know if I would be able to do it this year.  I started the week with two pulled hamstrings due to helping with a history fair poster.  It is Saturday my Hamstrings feel better so here we go, ready for a good walk.

Life is Good

Hello I haven't posted anything in a long time or a long time for bloggers that is.  I have not been to the spa in almost 2 years which is great.  My health is stable, so I haven't had much to talk about, like I said "Life is Good".

 

Medical marijuana

I have never used marijuana or any other illegal drug, or really consumed alcohol for that matter but I can now say I have had my unhealthy lungs filled with that foul smoke.  It is not just me that had deal with marijuana but my family as well and yes even the dog got high.  We are victims of the smoke party our neighbors upstairs are having.  It is my opinion that those athletes from that university in Fort Worth aren't so squeaky clean as their name might have you to believe.  I called the Local Police so hopefully my new lungs won't be polluted anymore.  It is a shame that I had to fight to get new lungs now I have to fight to keep them clean while in my own home.  I want to breathe free.....
 

LUNGevity name stolen by a CF patient

I am really frustrated and deeply disappointed that one of the organizations geared to helping lung cancer patients is having to deal with someone stealing their name.  Lung cancer patients don't have many organizations that fight the good fight for them.  It really cuts to the core that a local CF patient is trying to use the LUNGevity name to raise money for her personal fundraising effort for an up coming CF event in North Texas.  The sad thing is she sees no harm in using a name that people associated with lung cancer to now be tied to CF.  I am not bashing CF, but there is next to no funding for lung cancer.... heck when I go to several local stores I am often asked at checkout if I want to donate to CF.  I wish industry thought enough of lung cancer to take up a collection towards a cure when people checked out.  It is stealing to use another organizations name the way this person intends to.

LUNGevity name stolen by a CF patient

6 year Annual Post Transplant evaluation

6 year Annual Post Transplant evaluation took place over a week ago.  The evaluation went well.  Most lung test results were better than expected since there really isn't much data on lung transplant patients with BAC as their pre-condition.  I am still waiting to see if I set a new 6 minute walk record for Baylor (I moved from UTSW) I will have to keep you posted.

7+. Years and counting

It has now been 7+ years since my stage 4 lung cancer diagnosis.  Another year on the books, I am blessed to still be hear and morn the cancer and transplant friends I/we have lost anlong the way.  I go into this new year with change on my mind.  I am starting by switching my post transplant care to Baylor and away from UT Southwestern.  

Almost 5 years

5 years ago today I started getting prep for a lung transplant. I wasn't expecting the call I was preparing for a 5K in San Francisco that was coming up and helping my other BAD lung homies. I got the call while eating dinner at the Spa. Getting the call while already at the Spa was not good because it was laundry night (3 wks worth of clothes built up) and apartment clean-up night too. My wife and mom and friends got to experience my bachelors pad it was a throw back to my undergrad days and time in Rhode Island, No VA, and FTW.... basically my carefree days.

Anyway the five year mark starts now b/c they prepped me starting at about 5pm the surgery started around midnight and went into the early morn hours the next day. I will post more Tuesday in keeping with the spirit of the long life saving procedure I underwent.

WTF (still no results)

February 13th, 2012; Monday and still no results from the CT on 2/8/12 yet. I wonder what the heck is going on, normal CTs that I have had are usually read within a couple of hours. I am a little worried... not so much about the scans but about the fidelity of the people reviewing the diagnostic procedure. Good, bad or ugly lets have my shoulders are big enough to take it. Let's have, are the test good, or bad, do we need another CT. Tell me something.

CT scans yesterday

Got my 3 month CT scans on yesterday following the microwave procedure on my lung on Nov. 7, 2012. We shall see what the results are in a day or so. In this case no news is good news. I hope I fair better than my Tarheels, "come on man" you got beat by a Freshman in the last, the last second of the game.

6+ years and counting

6+ years as a lung cancer patient as of mid day February 1, 2012. Originally diagnosed as a Stage 4 BAC patient before the chemo, transplant, and follow-up surgery. The past 6 years have provided an unexpected journey but I wouldn't trade the experiences for anything. Let's see where the next 6+ years will take us...(Can I say that because I am told by some I am supposed to die within the first year of diagnosis)...

Coach Paterno

Sad day for football fans Joe Paterno passed away this morning. Coach Joe was a class act glad he doesn't have suffer from the difficult situations that he was dealing with.

Happy belated New Year

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Merry Christmas

Merry Christmas.

Today was a good day I stayed out of the hospital which is a good thing since I have sen the inside of a hospital / ER at least 3 days last week. I have been dealing with some kind of cold picked up more than likely at my daughters dance recital a 2 weeks ago. Stupid me I didn't wear a mask the venue is TOO small and yes sick people were out in full force supporting their little dancers. I hope I am on the mend the transplant doctors are running some test and have me on some new temp. antibiotics.

2nd Day back at work.

Yesterday was a bust, I had no energy and limped through the day as I attempted to go back to work after a week off post surgery (11/7/11).

Last week at a glance.
Monday
Surgery, I thought I would be getting an RFA procedure but going in they informed me it could either be RFA/ or / Microwave. When I woke up sore throat and all (incubation) with more IV's than I started off with I found out that the doctors did a Microwave procedure on only one nodule they think the other might be left over scar tissue from the wedge resection of 2009. I went home high as a Kite that night in the dark, in the rain with a nervous chauffeur (thank you morphine).

Tuesday
Sore as if I was still playing football going through preseason (abs and back were really sore), also deep breaths hurt. Lots of naps.

Wednesday
Rested most of the day, soreness decreased, took off bandage on my back (it stayed 12 hours longer than it should have), showered and I can't really see the incision from the Microwave.

Thursday
Resting, soreness lessening, breathing is getting better.

Friday
Repeat of Thursday Saturday Did the DFW lung Cancer walk, I walked the 1 mile course it hurt, I was tired very tired afterward. The event turnout was good...it has more participants each and every year.

microwave instead

No RFA today, I was given a microwave procedure on on of the nodules. We will watch the othe nodule as it is right on the line from the wedge resection I had in 2009. CT scans in 3 months.

I am sore and tire but at home so off to bed my belly is full. to quote Autin Power's "I'm a fat b4st4rd".