They let me sleep (Not really)

It is amazing what 4hours and 26 minutes of sleep will do for you I feel like I have just finished hibernating. The needles have persuaded me to get on up out of the bed, and I also need to reload my IPod so that I can have something to listen to in the ICU (instead of the machines). Finishing up a Sudoku, sending e-mail, and of course paying bills and finalizing some additional tax information (brought some tax law info to read up on..... lots of medical deductions).
Shower time, looks like the operation will access my lungs through my right side and spread the ribs (that hurts your back BTW) and I still anticipate 3 chest tubes. Are scars still fashionable???

Got gummy bears for the girls, and some coloring pictures and homework (math / sitewords) for Raegan to work on when they visit. I guess we will have to do a better job explaining my illness as Raegan is asking more and more questions about why daddy always goes to the hospital.

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Delayed

The surgery has been delayed for a little bit, there was a complication with the surgery before mine. I am hungry, I need food soon. I wonder if the hospital will require me to where a hair net, (i.e I have no hair on my head). 0837 CST

Let try again, attempt number two. 0947 CST

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Cancer Homiee stoped' in on me

A. Marshall came by to see me today, it was good to see her and trade info. about my path to lung transplant and her eventual listing. Thanks for the magazines too.

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Uh it's Thursday

Busy Busy Busy day.....

I had to drop yet another class as I was attempting to get my 4^th Masters.... through this whole round of medical stuff SMU Bobby B. Lyle School of Engineering has been very understanding and accommodating throughout all of this. I did have a hard time doing the right thing in this situation (dropping the class) makes me feel like I am quiting.

If dropping the class was not enough I really really feel bad that I let Ravyn down today. As I was getting the girls ready for school this morning I told her that I would come and watch her at dance class today. When I picked her up she reminded me several times that I didn't come to dance class today. I had a scheduling conflict due to the war on adenocarcinoma.blogspot.com/" title="lung cancer">lung cancer, I was being interviewed by the New York Times which will help break the stigma and raise awareness about adenocarcinoma.blogspot.com/" title="lung cancer">lung cancer, but I sure do feel bad about missing dance class (very rarely do I get a chance to go to Ravyn's dance class). I have already promised to attend next weeks class but I already see a conflict there too, I have all day doctors visits in Dallas.

Soccer practice was good Ravyn is becoming more independent and comfortable being in a new environment.

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Dam April fool's

Still sore, still trying to recover but my wife once again played her yearly April Fool's joke. Since she gets up butt early in the morn to commute to Dallas she called me on my cell phone to say she had a blow-out while she knew I was still sleep. I start telling her to call triple A (AAA) then she blurts out April Fool's....... I throw my phone and go to bed....... pay back is comin'.

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ER visit from hell (Father's Day)

Yesterday I felt really bad and tried to tough it out as long as I could but in the end I had to get a ride to the ER. My wife is still out of town that is why it took me so long to go into the ER, I had to find someone to watch the girls for me. I got my sister-in-law to watch the girls and drop (STRESS the word drop off) at the ER at about 10 PM CST. I could not hold any fluids down, eat anything, or even take my meds; on top of all that I was vomiting all day. The visit to the ER close to my house (Southwest Side of Fort Worth, TX) was horrible:

• They don't take the precautions that should be taken when handling a transplant patient
• Most of the medical professionals I was treated by had never dealt with a lung transplant patient.
• They refused to contact the transplant doctor on call at the hospital where all my post transplant care is given.
• These doctors (loosely used) basically gave me some IV fluids, some anti-nausea meds, then sent me home (discharged at 214 AM CST) Knowing I had no one at home to watch me, not knowing if I could take my meds, and also with the knowledge that I did not have a ride home. When I told them I had no was home at 214 AM they said I could just sit and wait in the waiting room.

After this experience I hope I NEVER HAVE THE MISFORTUNE of Being TREATED at Harris Methodist Southwest's ER staff ever again.

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Can't get the shot, Can't find the shot H1N1???

I seem to be spinning my wheels, wasting my time trying to find the H1N1 shot, and anyone to give it to me. The H1N1 vacine seems to be as illusive as big foot or the Locheness monster. I have asked many if not all the providers that I see and it seems I am getting the party answer, ?if we get it, if we don?t run out, blah blah blah?..?; I am not going to worry about it my H1N1 care will be as it was before when the Type A flu loomed within my household, REACTIVE and 10 times more expensive (time, money, and pain). If I don't get the vacine I will keep staying away from large groups.

UT Southwestern, for instance, requested 157,578 doses. The state shows shipping orders for 12,050 doses. But the hospital has only received 3,500 doses, spokesman John Walls said.

Source: From
http://www.dallasnews.com/sharedcontent/dws/news/localnews/stories/DN-fludoses_10met.ART0.State.Edition1.4b515e9.html

Nov. 10, 2009

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surgery went well

I am sitting in ICU in some pain and discomfort but that was to be expected. I guess I lucked out... I only got two chest tubes. Rhonda and I are just watch TV, I think I might try to walk tonight.

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Saturday one day out

I am one day out from the most painful medical procedure that I have ever undergone. YES this procedure was more painful than the actual lung transplant.

some random Spa pictures

see the arm pit to arm pit scar, chemo port scar, chestube scar(s), countless other scars


eat now!!!!

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I need to potty

Finally out of the ICU (there have not been any rooms free so I had to hangout in the ICU). I drew the third floor, should I curve my enthusiasm about being stuck on this floor. I still can't go potty a result of all the pain meds, a wedge resection is 100% more painful than an actually lung transplant. I am still waiting on pathology results from the surgery.

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Cancer Homiee stoped' in on me

A. Marshall came by to see me today, it was good to see her and trade info. about my path to lung transplant and her eventual listing. Thanks for the magazines too.

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Updates

Well I am looking at a copy of the preliminary report based on the Pathology finding and the frozen results from the biopsy seem to be confirmed. I have Adenocarcinoma with a BAC (Bronchioloaveolar pattern). I am not alarmed with this discovery, a recurrence is always a possibility; I would be numb if it (JACK /JACKASS) was anything other than BAC. I hope if it comes back we do something other than a wedge resection (note) wedge resections hurt so so so bad I would rather go through another transplant rather than have a wedge resection.

My chest tubes are still in but I am a quick draw on the Morphine trigger (self med). I wonder how long it will take me to recover, it took me 2 years to get to this point I hope I don't need another 2 years to recover.

I will post some pictures later (2 years ago Stanford Transplant, 2009 Surgery Pictures, 2009 Surgery scar it is long and ugly).

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Pictures

Pictures from the surgery on Friday, the ugly new scar, chest tubes, and you can see the bruising on my stomach from the heparin shots and insulin shots

Pictures from my transplant at Stanford March 2007

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Still stuck in the Spa (hospital) but getting burned out though....

I am still stuck in the hospital and raising hell (or getting my point across) while ensuring all those that are charged with my care, management, and recovering understand that we are in a partnership. My definition of a partnership for my current spa treatment is as follows:

I am a patient I demand that information be shared with me regardless of which side of the good news / bad news spectrum it falls on. Communication(s) are key to a good strong partnership.

I am not and will never be the textbook cancer, or transplant patient that most standard of care procedures were designed for.

Schedule treatment with me don?t just sashay your Crocs (another word can be substituted in the place of Crocs) into my room for whatever treatment you are there to give. Respect is a two-way street.

I really hoped to be out of the hospital by now, and I certainly never thought my chest-tubes would still be sticking out of my side.

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SleepOver

My Spring Spa retreat lingers on. The chest-tubes are still in and still hurt.

Earlier this week while going to get a sonogram the sonogram person (I don?t know what you call them exactly) almost caused my tubes to be yanked out as she quickly and without any warning tried to lower my head. That crap (replace word if so desired) hurt like hell after about 30+ minutes of cussing I settled down let the procedure take place but come on you have to be kidding me is this how patients are treated everyday.?.?.? That was a story I told my ladies as they are here to visit with me and spend the night. The reason that I told this story to them (TWICE) was because Ravyn seems fascinated with my one remaining chest-tube (I got the other out just a little while ago) she wants to pull on it. Rhonda seems to want to trip over the IV cord hanging from my PICC Line and that is not good. I hope I survive their visit (with my health), like a young child with a pet they are going to love the life out of me.

Lung Surgery

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No more chest-tubes

My ladies have gone, so now I will raise hell in this hospital to mask the vacancy void that exists once again.

My last chest-tube was pulled today. Surprisingly it was not that bad as the previous chest-tubes that I had at other Spa institutions. Apparently they use a different technique here where they place the tubes through the skin and into the lungs in such a manner that the holes are not parallel to one another. No stitches, no pain, just take a deep breath and pull.

I feel bloated since the procedure.

I am now under the care of the post-transplant team and the oncology side of the house; surgery turned me over as they pulled the last tube out. Since the tube was pulled I can taste the rustic taste of blood in my mouth from belches,

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Breaking out of the spa today

I wouldn't feel right if I didn't bend the rules every once in awhile. No more chest tubes, no IV's right now, so I just went for a walk (without borders). I kept walking and walking and walking....

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Smack Down

Not much to do today, I have to go to the hospital and lay the smack down CALMLY explaining to the hospital bean counters that they have made a gross billing error and it shouldn't happen again. Once I have straitened out the hospital billing problem I think I will take a nap or two; by my old calculation for everyday you spend in the Spa it takes you at least a day and a half to recover once you have been paroled.

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Free

They let me go last night (2106 CST)...Free at last

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Uh it's Thursday

Busy Busy Busy day.....

I had to drop yet another class as I was attempting to get my 4^th Masters.... through this whole round of medical stuff SMU Bobby B. Lyle School of Engineering has been very understanding and accommodating throughout all of this. I did have a hard time doing the right thing in this situation (dropping the class) makes me feel like I am quiting.

If dropping the class was not enough I really really feel bad that I let Ravyn down today. As I was getting the girls ready for school this morning I told her that I would come and watch her at dance class today. When I picked her up she reminded me several times that I didn't come to dance class today. I had a scheduling conflict due to the war on adenocarcinoma.blogspot.com/" title="lung cancer">lung cancer, I was being interviewed by the New York Times which will help break the stigma and raise awareness about adenocarcinoma.blogspot.com/" title="lung cancer">lung cancer, but I sure do feel bad about missing dance class (very rarely do I get a chance to go to Ravyn's dance class). I have already promised to attend next weeks class but I already see a conflict there too, I have all day doctors visits in Dallas.

Soccer practice was good Ravyn is becoming more independent and comfortable being in a new environment.

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Double Date

I hope I will have a double date with the girls R² this eve.

Since this most recent surgery and the cancer recurrence my meds have changed slightly. I take Prednisone (steroid) 5mg once per day and Bactrim double strength on Monday and Thursday now.

With the med change I am now walking a tight rope because my doctors and I are in a delicate balancing act. By lowering my Prednisone I will be boosting my immune system yeah fewer viruses GOOD and fighting the cancer (Jack's army, Jack's brothers, Jackass part two....).

With a stronger immune system (NOT GOOD) I increase my chances of rejection, I white blood cells want to aggressively attack foreign objects in the body (i.e. transplanted lungs in my case).

NO ONE SAID IT WOULD BE EASY.

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A star is born

First Soccer Game.... Ravyn had her first soccer game she didn't score any goals but she showed signs of improvement in her confidence and independence; she had fun too. Her team won by the way, they don't officially keep score but I DO.

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Back to the Spa on Friday

Well I guess I have to go back into the Spa on Friday for a bronchoscopy. The transplant doctors want to make sure that I don't have some sort of infection going on. I hope I don't get stuck on the third floor again.

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Free at last (once again)

Free from the hospital once again, they kept me over night after my bronch because of the elephant drugs they use to knock you out during the bronch. I had to check myself out seems when the orders were written for me to be admitted on Friday they forgot to include my transplant meds. Luckily I had enough meds in my truck for Friday but not for Saturday so after missing two doses this morn. I decided it was time to go.

The bronch hurt my joints or the medical staff from the 3 floor must have come in the room during my bronch and pounded on me. My joints haven't hurt this bad in well over a decade trying to get up and function on Sunday after a Saturday football game. I had to ask for some pain meds and several heating pads. Next bronch I think I will wear rib pads and hip pads.

Good news I didn't miss soccer game number 2 soccer game was canceled due to the cold weather in TX.

Looks like I will be burning up the highways between Dallas and Fort Worth next week.

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Rest and More Rest

Resting or trying to rest. My ribs still hurt from the surgery and I need to start trying to do some sort of work out to help break-up all the new scar tissue I have accumulated from this wedge resection (that hurt like hell). Guess I will sleep in the recliner and watch some basketball (if I wagered I would wager on UNC).

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Back to the doctors

Saw my endocrinologist today, it was a pretty good visit. I got a new one touch machine to track my sugars (steroid diabetic) since I need to monitor my vitals more closely since I am going to be more prone to rejection now (kind of like the first year out from transplant).

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