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Good vibes, Good prayers and Hopeful wishes.

Discussion in 'Personal & Emotional Support' started by ToyComa92, May 10, 2013.

  1. Jun 9, 2013 at 11:20 AM
    #161
    ToyComa92

    ToyComa92 [OP] Write your love, Then your anger.

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    Heated katzskin leather, Black TRD sport wheels, Bilstein 5100s, Toytec 2" Springs, Deaver 2" AAL, Pioneer AVH4400BH, Ultragauge, Weathertechs front/rear,
    Thought i would share my meds lol, So i take a set of pills four times a day i also am currently wearing a continuous IV and also my insulin pump, Hopefully il get ride of the IV on the 13th :D

    IMG_0288_b34af93db5f557df1eced05a32bea05f36fc2afc.jpg

    Just one of four sets.
    IMG_0286_8686de6e55b1d066ea81c6afe22a34ab4f38410f.jpg
     
  2. Jun 9, 2013 at 11:37 AM
    #162
    ImpulseRed008

    ImpulseRed008 Gone But Not Forgotten

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    OEM SS tube steps, Access LE tonneau cover, pop n'lock, AVS in-channel vent visors, stubby antenna, Wet Okole seat covers, bed mat, rear diff breather mod, 4 extra d rings in bed, K&N air filter.
    :eek: That's a lot of pills, but, if it keeps you alive....
     
  3. Jun 9, 2013 at 2:11 PM
    #163
    ToyComa92

    ToyComa92 [OP] Write your love, Then your anger.

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    Heated katzskin leather, Black TRD sport wheels, Bilstein 5100s, Toytec 2" Springs, Deaver 2" AAL, Pioneer AVH4400BH, Ultragauge, Weathertechs front/rear,
    Taking 5 minutes out of my day to be healthy and swallow some pills is literally like going from prison to Malibu Addiction rehab center. I'l gladly swallow some pills to be able to take deep breathes and be without a tether constantly AKA oxygen machine.

    Ive literally slept under eight hours in the last 54 hours just because i hate to waste this wonderful girl.. I literally keep myself occupied 24/7!
     
  4. Jun 9, 2013 at 2:41 PM
    #164
    ImpulseRed008

    ImpulseRed008 Gone But Not Forgotten

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    OEM SS tube steps, Access LE tonneau cover, pop n'lock, AVS in-channel vent visors, stubby antenna, Wet Okole seat covers, bed mat, rear diff breather mod, 4 extra d rings in bed, K&N air filter.
    Don't go too long without sleep... you need your rest so you don't get run down and then have more/other issues.
     
  5. Jun 9, 2013 at 7:39 PM
    #165
    ToyComa92

    ToyComa92 [OP] Write your love, Then your anger.

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    Heated katzskin leather, Black TRD sport wheels, Bilstein 5100s, Toytec 2" Springs, Deaver 2" AAL, Pioneer AVH4400BH, Ultragauge, Weathertechs front/rear,
    Yah im pretty much wore OUT.
     
  6. Jun 9, 2013 at 8:58 PM
    #166
    mommehK

    mommehK Never let your fear decide your fate

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    /mommeh mode ON

    Get some dammit REST then!!!!

    /mommeh mode OFF

    ;)
     
  7. Jun 9, 2013 at 10:37 PM
    #167
    ToyComa92

    ToyComa92 [OP] Write your love, Then your anger.

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    Heated katzskin leather, Black TRD sport wheels, Bilstein 5100s, Toytec 2" Springs, Deaver 2" AAL, Pioneer AVH4400BH, Ultragauge, Weathertechs front/rear,
    My body isnt preparing itself for a full nights sleep... Like i will wake up every two hours... Its either my HIGH blood sugars, A steroid im taking or it could be a minor allergy attack from all the new medications.
     
  8. Jun 10, 2013 at 5:35 AM
    #168
    ToyComa92

    ToyComa92 [OP] Write your love, Then your anger.

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    Heated katzskin leather, Black TRD sport wheels, Bilstein 5100s, Toytec 2" Springs, Deaver 2" AAL, Pioneer AVH4400BH, Ultragauge, Weathertechs front/rear,
    Today at almost exactly three weeks ago to the hour i was sewn back up with my new lungs. All i have to say is, Thank you TW, Thank you god and most of all Thank you to the donor Family. I will be turning in my three page letter to them today so i really hope everything is okay and not to personal, I will probably have my Transplant Team check it over so i dont convey any misunderstood disrespect.

    I will probably keep updating this from time to time, Im pretty stoked because i have a job lined up as soon as i can get the Ok-Ok from the docs. I know the manager of Apple Store and they said if i ever needed a job they would open their doors for me. :D

    So... Job lined up, Staying on top of my health, Trucks looking good, Money is saved up... Something is bout to unfold! haha
     
  9. Jun 10, 2013 at 5:54 AM
    #169
    Nickel

    Nickel Well-Known Member

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    does turning tires to black wall out count? How bout added snug top rebel.
    That's all good news man! Keep getting better!
     
  10. Jun 10, 2013 at 5:59 AM
    #170
    ToyComa92

    ToyComa92 [OP] Write your love, Then your anger.

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    Sometimes good news is just what the doctor ordered :D
     
  11. Jun 10, 2013 at 8:04 PM
    #171
    ToyComa92

    ToyComa92 [OP] Write your love, Then your anger.

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    Heated katzskin leather, Black TRD sport wheels, Bilstein 5100s, Toytec 2" Springs, Deaver 2" AAL, Pioneer AVH4400BH, Ultragauge, Weathertechs front/rear,
    Went to my first outpatient Transplant visit :) Got blood drawn, X-rays done and got to have all the staples and sutures pulled :) Feels so amazing! Unfortunely i am experiencing a lot of pain on the outside of my shin which scares me because my dad has had Varicose Veins quite a bit so i made sure they looked at it.

    My luck? I get this smoking hot ultrasound technician and she has to take her gelled up instrument all the way up right next to Mr. Willy. And this wasn't like, COLD as fuck right off the bat pressure kind of shit. The gel was warm and she was taking her time going up my leg all slow... Like seriously?! Who is getting the bad look when Mr. Willy rises to the occasion!? Either way they did a complete ultrasound of my leg from what she said she didn't see any blood clots which is VERY relieving, im still kind of worried that it might be nerve damage from my high sugars the past two weeks :(!

    I have been having really bad tremors where i have trouble writing or texting... They told me it could be either the steroids or my Anti-Rejection med could be higher then they would like... LOL Turns out the "prograf" level (anti-rejection) was lower then they wanted it so they increased that to 8 pills twice a day instead of 6.

    Damn good thing i have been taking pills since before i could even chew, Doctor said that i could be experiencing the shin pain from my body balancing fluids. Apparently its common to see these kinds of pains. Was told that the itching (WHICH HAS BEEN TERRIBLE) isn't as common and they will probably do some Allergy skin tests on thursday.

    But in awesome news?! my donor lungs look BETTER then they did at transplant! Doctor said if i continue on this path and stay rejection and infection free i could very easily see 31 :) What a great thing to hear but at the same time should be depressing haha.

    Just a little update for everyone who is following, Also turned in my 2000 word letter to the donor, Doctor was VERY surprised i had done so much so quickly... Like i said i can never thank that family enough. Even offered to take there whole family to dinner in honor of there fallen family member.... Guess i will hear soon enough of what they are willing to tell me and how far they are willing to take the relationship between the family and I. Hoping i can meet them at least... Just hugging/ Shaking hands will make me feel a little more deserving of such an AMAZING gift.
     
  12. Jun 10, 2013 at 9:50 PM
    #172
    mommehK

    mommehK Never let your fear decide your fate

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    Tremors & itching could both be because of the steroids...what are you on specifically and how high is the dosage? (I know way too much in this arena...trying to help)
     
  13. Jun 10, 2013 at 10:10 PM
    #173
    ToyComa92

    ToyComa92 [OP] Write your love, Then your anger.

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    Prednisone 15MG x2 a day.

    Thats being decreased on wednesday to 10MG x2 a day. Before transplant i was at 10MG once a day and i was no where NEAR this shaky. If i had to make a educated guess i would say its either the Pain medications or the Anti Rejection meds.
     
  14. Jun 10, 2013 at 11:02 PM
    #174
    mommehK

    mommehK Never let your fear decide your fate

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    Sometimes the shaky jittery bitchy effect of prednisone doesn't rear its ugly head until you start to taper off...to jump from 10mg to 30mg is big, when your body produces enough of it's own corticosteroids.

    Downside of being on multiple meds is the process of elimination to figure out which one is doing what.
     
  15. Jun 10, 2013 at 11:03 PM
    #175
    ToyComa92

    ToyComa92 [OP] Write your love, Then your anger.

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    LOL if we are blaming it on the jumps i think the 150MG Bursts for three days straight and then going to Pill form 30MG/2 times a day might have been a little rough on my kidneys.
     
  16. Jun 11, 2013 at 3:08 AM
    #176
    ToyComa92

    ToyComa92 [OP] Write your love, Then your anger.

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    Heated katzskin leather, Black TRD sport wheels, Bilstein 5100s, Toytec 2" Springs, Deaver 2" AAL, Pioneer AVH4400BH, Ultragauge, Weathertechs front/rear,
    First Night without staples, Feels alot better but damn that is a BIG scar!!!!
    [​IMG]

    See that black dot? From a Sub Q insulin drip.
    [​IMG]

    Oh and those four holes? Chest tubes. :)
    [​IMG]

    In total over the last three weeks i had
    - One Breathing Tube.
    - Feeding Tube through nose.
    - Four Post op Chest tubes.
    - Central Neck Cath.
    - Eight IVS.
    - Two Arterial Lines in wrist.
    - 24 Chest X-rays
    - Mediport was accessed the entire time, Two connections.
    - A PICC/Midline.
    - Two Foley Caths.

    And to top it all off, I was given an Enema "just in case" What great tactics!

    I can tell you that when your body experiences a seizure you WILL NOT REMEMBER shit. You will lose your memory even if you know you were awake 20-30 minutes before the seizure and able to talk and everything, Your brain WILL NOT store memory during that time. Waking up from the surgery was as expected, Couldnt move my muscles but ended up getting off the Ventilator and the next day i said goodbye to two Chest tubes and one of two of the Foley Caths. Worked all week and was finally released last wednesday. Had immense HORRIBLE seizures (4 major ones) before being Airlifted back to the hospital where they just transplanted new lungs into me. Doctors said by my grandma making that choice i could very well be gone. Well. . . Thats my FIFTH Near death experiences.

    Anyways im blahhing, After having major seizures dont plan on thinking straight or seeing things like normal. DONT FREAK it will go away just like it did for me.

    Anyways Im doing great! Lungs look better then they did when they put them in me which is... Really great to hear that.



    [/LIST]
     
    Last edited: Jun 11, 2013
  17. Jun 12, 2013 at 8:54 PM
    #177
    ToyComa92

    ToyComa92 [OP] Write your love, Then your anger.

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    Yesterday i must have really upset my incision area from washing and waxing my truck, Was in immense pain all night last night and finally got it to go away at about 1pm today.

    Weird but im experiencing incredible thirst but my stomach is sooo full and irritated that all i can do is suck on ice cubes!
     
  18. Jun 12, 2013 at 10:04 PM
    #178
    TeamSarcasm

    TeamSarcasm Flawless Escalation to the Ludicrous

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    The better coast
    Careful on the prednisone. I was on it 2 months and gained some weight. I went online to investigate this issue ad read about 2 hours of weight gain woah stories.

    It'll give you the munchies :D I think I gained 10lbs or so...and for reference normally I can't put on dime of weight no matter how much I eat.
     
  19. Jun 12, 2013 at 10:30 PM
    #179
    mommehK

    mommehK Never let your fear decide your fate

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    /mommeh mode on

    DON'T OVERDO IT!!!! New lease on life and all aside, you don't want to put your arse back into the hospital for any reason...be reasonable and smart on how much activity you're pushing yourself to do!

    /mommeh mode off
     
  20. Jun 13, 2013 at 12:11 AM
    #180
    ToyComa92

    ToyComa92 [OP] Write your love, Then your anger.

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    Fortunely im encouraged to gain as much as possible, Losing weight is actually bad for me because it is usually an indicator of infecton or something going on Bad in my body. The cystic Fibrosis tends to use over double the calories then a normal person, Plus i dont process calories well, I only get about 20% of a meal where healthy people get 70-80% so i i have to eat eat eat but with all these different meds and all this newfound energy my body is still figuring out how to reach.

    :D I love it, I leaned that lesson early and painfully which sucks but im just glad i can take it more serious. Its just hard to tell where to much is "too much" and sometimes you dont know the line until you cross it.
     
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