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.....
Sunday, February 26, 2012
Wednesday, February 1, 2012
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! :)
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! :)
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