I write this because I believe it is an important lesson to teach others....an issue that most people probably never give a second thought to.

Did you ever think about who gets a handicapped permit? The first thing that most likely comes to your mind is someone in a wheelchair right?....common assumption. Thats what I used to think too...or very old people....people with crutches or walkers....not people who LOOK perfectly healthy....

Its the "but you don't LOOK sick " misconception....allow me to explain.

Tonight I went to Lianna's elementary school for her Big HUGE Halloween Fair....it was PACKED and the cars were lined up for what looked to me like miles and miles and miles down the road. My first thought was to turn round, go back home, lay back down on my couch and shoot Shannon a text to say "maybe next year....."

But then I remembered, Lianna will only be 5 once and I don't want to miss these things. I am smart enough to know that I might not live to see her be six. I WANTED to see her and her friends and buy them some shave ice and cake walk....and take LOTS of pictures! So I did it...the thing I almost NEVER do.

I was given a handicapped permit when my doctor suggested there could be times that I might need to use it.....tonight was one of those nights. I rarely if EVER use this permit. So rarely that I didn't remember I even had it at first. 

As I get sicker and closer to transplant there are many times I am completely exhausted. More times then not I am too tired to go out....to stay awake late...to do most things that other people take for granted, things I miss more then anything.

I parked my car, put the permit on the windshield and as I was getting out of the car I was greeted with a very angry look by someone who must work at the school. She gave me a look like "how dare you park in that spot when you so obviously don't need to??". I WANTED to shout at her something like "are YOU waiting for a transplant? Are YOU too sick to walk a mile to come see YOUR grandaughter at her Halloween fair??"

But I didnt. Because I understood. I dont LOOK sick....and you know what? That is one thing I thank God for every day.....its bad enough that I AM sick, but if I looked sick it would be worse. I decided it was a better plan to come home and write about it...if ONE person is educated I will be happy.

Please always think long and hard before you make  a complete stranger feel bad by your condescending looks. You don't know what that person might be dealing with. Not all sick people are in wheelchairs or using walkers or crutches....some of us are just in end stage liver disease and even walking to the garage to get in our car sometimes wipe us out.

(ps there were four other spots still left unused even when I left so I did not take away anyone else's spot who others might think need it more than me. If I didn't NEED it tonight, i would never have used it. I know my daughters, my mom can vouch for this. They have seen me refuse to use it many many times)

Thank you for taking the time to read this

Evaluation week!

So....right after Cyrca finally approved the insurance for the evaluation it was scheduled! Me and  my girls flew off  to Honolulu! This was a grueling week....lots of tests, injections, meetings, information, more tests, doctor appts....we spent probably 8 hrs a day at Queens Hospital Transplant Center. It was not easy on any of us but the girls made me proud again as they took notes and asked lots of questions, even made jokes when they could tell that was what I needed !

So far I am very impressed with the sincerity,kindness and competence of the entire staff at Queens! They were all very thorough and could tell they were very pleased that the insurance company finally approved this week of testings! They ALL received Mauis Aware bracelets and it was so cool to see them wearing them all week long!

Reck Navarro and his team at Cyrca/SHOTT could not have been more helpful. Jane Lee and the entire staff at Queens Transplant Center made us feel important, welcome and at home the entire time.

Transplant evaluation can be confusing and demanding. All appts are scheduled one after the next.

First day was with the head in patient Psychiatrist, Dr Serghi, who was wonderful and called me an inspiration and told my girls they should be proud of "who their mom is". He had read over my files very carefully and called me the "poster woman for everything that is wrong with insurance in this country today"! He admired the tenacity I have and the advocacy of my own health. He went on to tell us all that "it only needs a liver" (inside joke there!) and told us all I was 100% cleared for transplant from his perspective. He said he could tell during our hour and a half that I had a very clear and realistic grasp for my situation, what is involved and yet to come. He also went on to say he would be sure that the meds I am given at the time will NOT be what they have in the past and make some of the adverse reactions terrible for me, he said the doctors of the past should be ashamed at the drugs they had used and should have known better.
Whew! One down!

Next was Jane Lee , Transplant Coordinator who spent a GREAT deal of time with us going over everything to expect. This woman KNOWS her job and does it well. She provided us with her phone number , email address and assured us we could call or email at any time and she would always get right back to us.

The Cardiologist was really super nice (Dr Terekubo) and ran a bunch of icky tests but cleared me immediately! He took the time to remind the girls to STOP SMOKING!

The Team consists of Tx Financial, Pharmacy, Social Worker, Cryca reps, Dietician....so many people.....the Cyrca Rep, Lisa,  wanted us to know that Reck and Beverly told her "Wait till you meet her...her face lights up when she smiles!" This almost made me cry after giving Reck such a brutal time during the past year. I am now very sure he was doing everything in his power to get things approved but the medical director had the final say, it was NOT in his hands.

We learned soooo much...the costs involved are STAGGERING! Surgery alone is 300K.....Procurement of the organ is another 120K (RECIPIENTS pay NOT the donor or their family), Annual lab and prescriptons for life are approx 41K per year. Evaluation process is a min of 10K, lodging and transport and food is another 3-5k....tests tests tests.....the costs involved are just one after the next...NO ONE could do this without insurance....

We learned once "that call" comes in it is a total of 18 hrs max for the organ to be harvested to the point that it is put in my body. I have ONE hour to answer their calls and make a decision. They have three numbers to reach me. They keep the donor alive for as long as possible to allow patient to get to Center, prep and wheeled into surgery. They no longer do the mercedes cut...now it is more like a c section.

Miranda will not have time to get to Honolulu before i go into surgery but she will be there as soon as I wake up. Shannon will be there with me as they put me under ....Thank God!) I would hate to be alone during this time.

Presently there are 22 ppl on the Hawaii transplant list....two are inactive leaving only 20...of those 20 only approx 8 have same blood type as me. These are good odds.

On to the Heptologist....Dr Tsai is wonderful....he squeezed me in and I am now under his care (THANK GOD!) He changed my meds already and was extremely helpful!

Next was Dental....yuck....two deep cavities and a deep cleaning and I was cleared! No fun....

Ultra sound was not easy to see....it is so obvious even to the untrained eye....always is hard to see.
Cat-scans, stress tests, chest xray, 23 viles of labs drawn from my port.

Finally the last appt was with Dr Linda Wong the transplant surgeon....she was quick, thorough and made it clear that as soon as all the test results come in the team would meet about me and make a decision to list me or not list me. The only thing that would preclude me from being listed is if they find cancer anywhere except my liver.

So on to the colonoscopy and pap here on Maui.....wish me luck....noooooo cancer please nooooo cancer....

More to follow!
Whew!

Change here I come!

Life is funny. So many different kinds of people in this world. I come across a whole wide range of personalities every day.

One of the things I learn on a daily basis is about Karma. I truly believe that what you put out into our universe comes back to you. When you are negative, negative things happen. When you are positive , positive things is your reward.

Im working really hard at staying positive. Some days are easier then others. I try to be kind to people and I try even harder to help as many people as I can. It makes me curious when sometimes the more you do for certain people that the more they expect. And sometimes without any appreciation at all. No one likes to be taken advantage of or taken for granted. And I am learning that I REALLY dislike being treated that way.

If I start to become stricter and more cautious about how I conduct business, it is  to avoid this happening any longer.  Im pretty tired of being a babysitter to so many in my life. Its hard enough managing my own problems and dealing with my own issues that adding on so many others neediness is draining the life out of me. I clean up after so many every day that I wonder who's life am I living here??

I think there are many times that I go WAY over and above the call of duty and then I find myself complaining about it....who is to blame for that? ME! If I continue to allow it, I will never have any type of peace and balance in my life. Helping needy children is one thing and there is great glory and satisfaction in paying it forward...helping people who are just too damn lazy to do it themselves or expect everything to be done for them for free is just obnoxious and stupid.

Now I am not saying that I plan to stop helping and doing for others....I wouldn't be me and I couldn't live a life like that, but I refuse to be taken advantage of any longer. And the time given to me is MINE, not anyone elses. MINE. 

I won't tolerate lying. I CERTAINLYwill not tolerate meanness. Not from my family, friends , coworkers ...no one....I will NOT  be told what to do. ("Ask" all you want, but do NOT demand it or expect it)  I will not cater to the "me, me , me , me , me, me" people of this world anymore! 

I also will not be made to feel guilty anymore. Guilty is a complete waste of energy....especially when you have nothing to be guilty about! 

I WILL begin to put a cap on hours I put in and start taking better care of myself. My grandmother used to always say to me God helps those who help themselves. I guess it is time to start helping myself. I need to eat healthier, exersize, work less, play more, join some type of groups that are not music or health related.....and start making the most out of the time I have here on Earth. 

.

In other words I plan to start showing MYSELF respect! :)

If there is one thing missing from my life its joy.....I want my job and my bliss...and I want to get healthy, have my surgery and get on with the life I was supposed to be living. Sick of being the sick one.  Sick of spending every waking hour working on someone elses bliss! (or rather, 55 other people's bliss!) LOL

Thanks for listening to me ramble as I am knee deep in SXSW crap.....yes I am....its called the last volunteer week of my life! hahaha

Until next time.....

This one is NOT going to be pretty...well most of it anyway!

So today is the big day! The day the Transplant Center gets to resubmit me to Circa....I spoke to them on Tuesday when she said she had ONE form that my pcp needed to sign and fax back to her and as long as she got that she was good to go to fax it all....the insurance has approved me evaluation  and now all I need is for Circa to give it to their medical director to give the green light for my evaluation! Yay right? NOPE! Why you ask???

Cause the dumb-ass that is my PCP on Maui has not filled out, signed nor faxed the form....in fact when I called to check on the status today, his assistant told me she cant even FIND the form! UGH! The incompetence is staggering......

Well, I guess it was my last straw because I yelled at this poor girl and told her to call Shawna at Transplant at Queens TODAY, get that form TODAY, get it filled out signed and faxed TODAY and call me to let me know it is done....she said as quietly as a mouse "ok" I even had to give her the phone number and name to call!

Now do I even remotely believe this will happen today? Of course not! But I can assure you of this much, if it doesn't I will be on the phone with the medical board reporting this and demanding changes! I am so freaking tired of this run around. Dammit Im sick....I need help...I need a transplant....I deserve at LEAST an opportunity to be listed for one dont I??
On a nicer note I received this email yesterday....made me cry.....

(I have bleeped out certain peoples names and work places since that would not be nice to share...)


"Dear Tammy,

Hi!  I just wanted to let you know what an encouragement you have been to me.  You are such an example of strength.  

I met you about a year and a half ago while I worked for a man who had several companies, ______.  At the time, when I visited with you (I worked in an independent contractor capacity as his Office Manager at the time), you peaked my interest about the music industry and your work with it.  I absolutely loved what I did but had thought of the prospect of having my own company.  I loved the fact that you traveled and could still conduct your business in another state (I was born in Hawaii - so that was pretty awesome)!   Anyway, since then, I have opened up a company with 2 other partners, producing fireworks displays and other special effects.  I did say, I absolutely loved the industry that I was working in and never in a million years would I have thought I would be doing this, but I certainly needed to pursue it.

After that, I continued to follow up with what was being done with the Austin Boston concert, ________

Well, the main reason that I am emailing is because I came across your blog and had followed your story for a while.  I have continued to pray for you and wanted to share that whether you know it or not, you have made an impact on people that you probably aren't even aware of and quite possibly in ways that you never figured on.

You were a delight at the time I met you and I believe that you have touched many lives.  Keep on believing!  There is purpose in all that you do.

If I ever come across a band that needs a talent agent, I will send them your way.

Thanks again!

T____ W_____"

Thank so so much for brightening my day! What a wonderful letter.....makes me realize that no matter how hard things seem to get, there ARE people paying attention and in my corner....and to know that I have impacted someones life to make a huge change and take a risk and a chance to find their happiness makes me feel GREAT!

Will let you all know what happens next!

Thanks for listening!

T

Austin Bound!

Well, I decided since things are moving along at a snails pace here on Maui I have no reason not to fly to Austin this Tuesday! Whats the worse thing that can happy? Ill swell up on the plane....ok, I can take my lasix...or......the insurance company  will finally call with good news that an evaluation is finally approved to be  scheduled?

Well GREAT but if they DO,  I have no dilutions  thinking that even if they do call on Wednesday that a full evaluation can be scheduled and planned with in three weeks so I think Im pretty safe coming back March 19th. Not to mention once the insurance company approves the eval, then the state Circa needs to put it before THEIR medical director and that person needs to approve it.....THEN they need to get the approval to my primary care doctor and he needs to contact the tx center with a referral to get the eval scheduled! Im thinking this will take another 4-6 months if Im lucky!

It has been a long wait. And according to Dr. Poreddys calculations in Austin,  I should be dead by now anyway! It was March 2011 that he said I had several months to a year at best without the transplant...now while he was correct in his assuming I would get sicker he has NOT been correct in timing my demise! It is a full year now and as far as Im concerned, I'm still alive! I think I might be just too mean to die! Or too stubborn anyway! Nno one will tell me when its over until Im ready to say its over and Im not! I have WAY too much to do here!

I have Lianna whom I adore that needs me to be in her life as long as possible! I have my daughters who I love so much and make me proud every day that I want to spend as much time with as possible! I have a business that I love that needs me....AND the latest news is I have just had a meeting with a company who has asked me to partner with them to put on BIG concerts here in Hawaii! Maui needs some great entertainment and I love doing those! So, there is a lot to live for.
Not to mention that soulmate is out there just waiting for me to get healthy so we can find each other! LOLOLOL

So, it is off to Austin to spend time with Miranda and jeff! And see my sisters! And go to SXSW and Cody Jasper's Cd Release at Antone's! And Chuggin' Monkey's 10 year anniversary party!

But I tell you this...Im not afraid to die....I know when I do there are so many people that I will be seeing! Like Jeremy! One day ....one day.....just not today.....

The latest...its been a while...

It's been a long time since I blogged about anything. A lot has happened since. First the Transplant Center in Hawaii closed it;s doors along with the entire hospital.

This news threw me into quite a depression. What would I do NOW? Still no approval for Transplant evaluation , still jumping through hoops with the insurance companies.....argh...and now no transplant center anyway....

Fast forward to this past week. I had planned a trip to Austin but got pretty sick so the flight was cancelled and instead a trip to Honolulu to Dr. Linda Wong was booked. She is a transplant surgeon here in Hawaii. So this past Friday I went...alone , which sucked, but I went.....her news was not great.

She told me that while they were doing everything in their power to get this pushed through, that the insurance company simply does not want to pay and that they were looking for any reason to deny me. She said the transplant fund that I was told to raise might very well count against me with the insurance since the only insurance I qualified for was state insurance. She went on to say that if I was homeless, or in jail it would be approved immediately but since I am a productive, working citizen who earns her own living, pays her bills and her taxes I might not only be deinied yet again for an evaluation but they might completely cancel my insurance! What will I do THEN? Dr. Wong told me that 45 pages of medical records and labs were sent off to the state once again on the 23rd and we needed to wait to hear from them because without an approval, her hands are tied. She ordered more labs.

So Saturday morning I get my mail and low and behold,  there are my recertification papers for the state insurance. I copied my bank statements and mailed it off with a letter pleading with them not to drop me due to the transplant fund that I will need post tranpslant in order to help pay out of pocket expenses.

On MOnday I went for lab work. I had to go to two different clinics and after 7 pokes and 6 technicians they STILL could not complete all of my lab work, they said my veins are just gone.....so they suggested a picc line be inserted up to my heart.

On Tuesday my results come in....Dr. Wong called and said I have gone from a MELD score of 13/14 to a 16/17 and that my bili rubin is 4.1 which is higher then it ever has been and my amonia level is still almost 100. She agreed that it is time to insert that porta cath and said to tell Dr Granada to be sure to send these most recent labs to the state.

10 min later Dr Granada calls. he had gotten my labs. To make a long story short he put in a referral for the picc line, is calling Dr. Wong about doing another liver biopsy, added some more drugs, and SAYS he is sending off the latest labs to the state. Now this man has most times NOT done the things he said and was supposed to do so I guess it will again be my job to push him....call and remind....Leslie in his office and I have become quite close at this point!

I might have made a few mistakes....I called the Governer's office, Congresswoman's office, insurance company and my case worker at the state to beg them to help keep my insurance in tact. I am thinking today that maybe I should not have rocked the boat that maybe the case worker would read my note and push through the insurance anyway, but I guess i will be finding out.

The ABC show The Revolution wants to do a show on me, my case, my cause.....Miranda had written to them a while back and they called her yesterday a few times.....apparently they might even come to Maui....not sure if I am up for something like this but spreading the word is very important on Organ Donor Awareness and the poor health care in this country....also Fran and Anton Cosmo (Of the band Boston) are willing to come on the show too to speak about it since Fran's brother Ralph had a lung transplant and is doing great!

Shannon has decided to put her  Hair Salon apprenticeship on hold to help me (and spend more time with Lianna) saying she never again wants me to fly to Honolulu alone,  and Miranda is willing to fly here at any time to come stay with me to help. This makes me feel so loved. I hate being a burden on my kids. I wish I could blink my eyes and have this all behind me (and them).

I started juicing after Shan encouraged me and I went to her herbalist Jackie from Maui Herbs......it cant hurt right? I bought the Jack LaLane Juicer......its a pain to clean it all after you juice but Im getting used to it and once a day I go to Rodeo Store and buy one of theirs.....for me everything tastes better when someone else prepares it! LOL

MY spirits have not been broken yet. I am a fighter and while I get down in the dumps at times I ALWAYS get back up and forge ahead! I WILL beat this thing.....or die trying! :)