Another baby (or HUGE) step, for me, in the right direction!

After getting my wisdom teeth out yesterday.. I had some fuzzy buddies to help nurse me back to conciousness... they are good sleepers, as was I!  I'm sure nobody likes having invasive procedures done in their mouth, but if it means the difference between life and death.. then it's necessary.  Even just a tiny infection in one's body could trigger something which leads to rejection after a huge operation like a double lung transplant... For the rest of my life, after transplant, I will be a state of subtle to heavy immune suppression so that my body does not reject the "forgeign" bodies they have implanted into my upper torso.  (That is what my system will perceive them as.)  When a virus or infection is contracted in a healthy person's body the immune system goes in to action to irradicate it from the body and return it to a natural, healthy state.  

In my case.... if I didn't take anti rejection pills after transplant, my body would perceive the lungs as a threat and try to kill them.  Any little infection in my body can then be overlooked and unattended...leading to a much more serious infection which could cause acute rejection and possible death.  I did learn that in addition to the anti rejection drugs, I will also be on heavy antibiotics just for this reason... at all times.. They will kill possible infections when they start or first come into my body.... even possibly from my donor lungs as sometimes, certain viruses do not show up in the initial screening and acceptance of the lungs when they test them before implantation. ( CMV...etc.)

So, for now, I am staying put, in Austin... hermiting myself for the time being, staying as healthy as I can be, till I hear about insurance and till I am healed from this surgery  Then, it will be Bon Voyage from my home in Austin to Houston for the duration.  Once I am listed, I cannot come home as it is farther away from the hospital than they allow.  I would love to have a big, send off with all of my dear friends, but crowds and me don't mix right now.  There is too much risk for infection and contagions.  Thank you for your support with all the cards, texts, emails, etc. The power of prayer is working. So far, everything has pretty much gone as planned and in a good direction.... ALMOST there! Please don't give up on me. If I can, I will give it my best shot and be back in the LOOP again soon!  XO Much Love, Trish

Trish is APPROVED as a candidate by the team.....

YAY!!!!! Happy! 

Since the whole week of testing and evaluation, I have been home, in Austin, on pins and needles awaiting a decision from the transplant team in Houston about whether they thought I was a good candidate for the surgery and outcome of this whole, miraculous adventure.  I was notified on Wednesday morning that, indeed, I will be accepted as a Double Lung Transplant Candidate!!!!  The news made me very happy, and a little anxious,as you could imagine.  This means it's REALLY happening.  I think I was in a whirlwind of a tornado from the beginning.... this is truly a reality now.. Feet on the ground..... Ready, set....GO!? 

Well, almost...

A BIG hurdle we have is to wait now for tne insurance company to approve the whole Transplant.  Only the evaluation process was approved up to this point.  I'm sure it's just a lot of paperwork and red tape, but something that may take some time... again.. of waiting!

That's okay though, 'cause I have a few more things to get done before I am placed on the list and a viable candidate waiting for a donor. My team of doctors wanted me to have a few additional things done so that I am in tip-top shape before my whole body is pretty much shut down and  immune suppressed that it could not fight off infection....

#1. I will have to get the dreaded wisdom teeth out and #2. I had to see an ENT (Ear, Nose and Throat) doc yesterday to ensure that everything was all okay in my sinuses.  After enduring ANOTHER painful test of an "Up your nose with a rubber hose" the size of a yard stick, it seemed,  and a comment like: "This might hurt just a little"...ya think?  I am finally cleared in that area, at least.  Nothing to address, at least! WHEW!

After I get my teeth extracted and find a place to live in Houston... even if it is just a temporary stay housing till we find something more permanent,  I will then let my nurse coordinator know so SHE WILL CALL the National Organ Donation Center to make me OFFICIALLY LISTED!

Thanks for sticking with me throughout all of this!  I really appreciate all the love and support I have received and only hope that I can run everyone around in circles after all of this is said and done!  THAT is what I am really looking forward to!  I have the energy in my mind and legs.. just my lungs won't cooperate!

I need to give a special shout out to my "fi-BRO" and comrade whom I've known for over 20 years.  Scott has CF and has been there as a brother and close friend to me for a long time and has helped me through this whole ordeal with his blow-by-blow story of how HIS Double lung transplant went... ALMOST 3 years ago already!  He is my age and is doing great!!!*He even showed me pictures of the ugly, scarred, infected and gaping-holed CF lungs which they removed from his body. They were 8 pounds each and they were filled with mucus and crud from Cystic Fibrosis' devastation!  I so look forward to looking and feeling even half as good as he does!   He is running rings around everyone already and helped me tremendously with the information about the testing and post transplant questions I was dying to know.  My friends Sherri S. and Christy J. E.  also have been super helpful!  Christy got her lungs in just 9 days after being placed on the list and Sherri is still waiting to get her lungs, although she went through the evaluation awhile back and was tabled 'cause she was a little too healthy at the time.  I know she will breathe free again soon, too!

They are blessings to me as ALL of you are ... in each, unique way which you touch my life!!  Spread the word.  We need more organ donors!  Share my blog with whomever you like...and don't you NEED a new T shirt!?   www.oneon1design.com/just-breathe  is where to find the info.   

Happy In Houston!!!

Guess who did the calligraphy? ;o)

Howdy! Trish's cousin Caroline here. Just want to let you all know that Trish made it through this morning's heart catheterization with flying colors! This was the last major test of her evaluation for double lung transplant. HOORAY!!!

This has been a crazy process, filled with meetings with cardiologists, surgeons, social workers, pulmonologists, and others. Yesterday's meeting with the transplant coordinator was pretty scary, because she talked a lot about post-surgical complications that might keep Trish in Houston for longer than the average three months it takes the optimal transplant patient to recover. Today's heart catheterization was the last big test of the week. Afterwards, Trish had to lie on her back for six hours without coughing, which for somebody with CF is a huge challenge. But even as I write this, she's being discharged... and hopefully she'll be home tomorrow afternoon with her darling Kevin and beloved doggies!

Like 95% of other potential transplant patients, Trish will need at least one more test, in addition to all those done in Houston this week. She has a little sinus issue that must be cleared by her ENT, and that will likely be done back in Austin early next week.

The review board, which consists of about 20 doctors and healthcare professionals, will meet next week, probably Tuesday, to discuss her case and test results. At the end of the meeting, they'll contact Trish with one of three decisions:

1. YES: If the board decides that Trish is a viable candidate for transplant, we'll relocate to Houston right away. As soon as we move to Houston, Trish will be listed formally, and she will also receive an allocation number, which designates her position on the list of people who are waiting for lungs.
2. TABLE: The board might decide to table her transplant at this time, for any one of several reasons -- she could need more testing, for example. Or they might decide she's actually too healthy for a transplant, which seems unlikely, but it's possible.
3. NO: Some people are simply rejected as good candidates for lung transplant. Generally, this happens when doctors determine they have serious problems with other organs, or when they're unlikely to survive the transplant surgery or recovery, or to comply with the strict rules for survival that all transplant patients must follow for the rest of their lives. Again, none of this seems to apply to Trish... but it's possible. 

For now, Trish and her doctors are cautiously optimistic. But we won't know anything else till sometime next week. Please stay tuned. Keep your eye on this blog! Over there in the column on the left are several ways to "subscribe" to this blog so you never miss an update. Bookmark it; follow it on Google+; subscribe to posts on Netvibes, Yahoo, or Atom; or (simplest of all) just enter your email address where it says FOLLOW BY EMAIL.

Trish's birthday is May 26. Wouldn't it be terrific if she got a new set of lungs, just in time to celebrate? She says that is her wish! The average wait time for donor lungs is three months, though it could be as long as a year. (Or it could be a matter of DAYS. One of her friends got new lungs just nine days after being listed. Let us all hope and pray that it happens quickly for our Trish!)

One more thing, and it's the most important thing. Trish asked me to THANK YOU, all of you, so many of you, for your thoughts and prayers and kindness and financial donations and offers of lodging, airline mileage, and everything else. If you've mailed her a check or made a donation through her YouCaring website, please remember that she might not respond right away, if at all. That does not mean she is ungrateful -- we all know Trish better than that! It simply means she's trying to stay strong and healthy enough to survive the transplant. (For Trish, just staying healthy is a more time-consuming process than you can imagine.) She's also investigating all that she needs to do and learn before and after the surgery. And oh, yes -- she's also getting ready to move to Houston!  Please forgive her if she doesn't respond, but know that she is humbly grateful for your friendship and support and love.

Much aloha from Caroline

Cousins!!! Caroline on the left, Trish on the right.