We have been advised for me to bring my own enzymes so I never had to worry about running out since I have a stockpile to start with. Then when I get my supply from the hospital pharmacy I just add them to it. Our hospital pharmacy carries most of not all the brands the CFers use. The hospital is very CF oriented!
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Refrigerate Enzymes?????
- Thread starter LoveShines4Austin
- Start date
LoveShines4Austin
New member
Sunnie,
Bridgette left last year do to some "personal family problems". That's all I was told <img src="i/expressions/face-icon-small-sad.gif" border="0"> Yes, Dr. Jawar is still there but I only saw him maybe once in the past 10 years and that was when Austin was hospitalized for the onset of the diabetes. I'm too angry to even call back and find out about where we are with the vest situation. Maybe Dr. McDonald told Ann she had no right to even tell me she would check into it or something, because she hasn't called me back. Grrrrrrrrr. I'm just frustrated. I'll try again after the holidays.
Bridgette left last year do to some "personal family problems". That's all I was told <img src="i/expressions/face-icon-small-sad.gif" border="0"> Yes, Dr. Jawar is still there but I only saw him maybe once in the past 10 years and that was when Austin was hospitalized for the onset of the diabetes. I'm too angry to even call back and find out about where we are with the vest situation. Maybe Dr. McDonald told Ann she had no right to even tell me she would check into it or something, because she hasn't called me back. Grrrrrrrrr. I'm just frustrated. I'll try again after the holidays.
Dear LoveShinesForAustin,
I know exactly how you feel. I go to UCDMC also. I am 16 years old. Over the past few years I have become VERY, <b>VERY</b> impatienct with the healthcare I have been getting there. I am transferring over to Standford because they have way better ratings and over-all they take way better care of the patients they have. I am not trying to scare you or anything, but people at UCDavis are dying. People are having to have lung transplants and sever abdominal problems... there has been proof that the majority of people that have transferred over to Standford and Oakland have been living longer and don't even NEED a transplant anymore. UCDAVIS is lacking a lot of recent medical breakthroughs. Now tell me this, is it worth the extra 4 hour drive to Standford and have a life saved, or suffer with Davis? This is many of the things I have had to deal with. I don't know if Austin cares about his health, or if he is in the "teenage-rebel" stage. But if he is, you need to take matters into your own hands because our lifes are precious and I would had to see anything happen to the CFers I have came close with in my life. And I do know Austin from grade school, I don't know him personally but we've talked. I know he may be doing good now, but the chances of him going to UCDMC for the rest of his life can slowly bring him downhill. This not only goes for you, but for the others that are dis-satisfied by the progress of the Docs at UCDMC, I know I am <u>NOT</u> the only one who has had these complications.
I hope I helped, please take this into concideration. If you need Standfords number, just call me. 229-1919 I live in Redding too, and I'd be happy to help.
I know exactly how you feel. I go to UCDMC also. I am 16 years old. Over the past few years I have become VERY, <b>VERY</b> impatienct with the healthcare I have been getting there. I am transferring over to Standford because they have way better ratings and over-all they take way better care of the patients they have. I am not trying to scare you or anything, but people at UCDavis are dying. People are having to have lung transplants and sever abdominal problems... there has been proof that the majority of people that have transferred over to Standford and Oakland have been living longer and don't even NEED a transplant anymore. UCDAVIS is lacking a lot of recent medical breakthroughs. Now tell me this, is it worth the extra 4 hour drive to Standford and have a life saved, or suffer with Davis? This is many of the things I have had to deal with. I don't know if Austin cares about his health, or if he is in the "teenage-rebel" stage. But if he is, you need to take matters into your own hands because our lifes are precious and I would had to see anything happen to the CFers I have came close with in my life. And I do know Austin from grade school, I don't know him personally but we've talked. I know he may be doing good now, but the chances of him going to UCDMC for the rest of his life can slowly bring him downhill. This not only goes for you, but for the others that are dis-satisfied by the progress of the Docs at UCDMC, I know I am <u>NOT</u> the only one who has had these complications.
I hope I helped, please take this into concideration. If you need Standfords number, just call me. 229-1919 I live in Redding too, and I'd be happy to help.
littlepinkstar
New member
Oops, I forgot to log in. The last post was by me. (The post about Standford.)
I'm sorry to hear that Bridgette had left. She was pretty nice. Sometimes cowered to much to Dr. McDonald, but overall a nice person. Dr. Jawar is the one who suggested I transfer to adults. He was the only one who tried to help me out. I was in so much physical pain that over the counter stuff wouldn't work and Dr. McDonald kept telling my family and me that it was all in my mind. The nerve of the lady. She also blatantly refused my requests for the Vest. I was heading into college and wanted more independence. Anyways, at Dr. Jawar's suggestion I transferred to the adult clinic and things are much better. They knew exactly what was causing so much pain (I was on prednisone for 17 years it was eating away my bones) and they got that under control. They kept me out of the hospital for two years (before transferring it was every six months if I was lucky). As of right now it's been almost a year and a half since my last hospital stay. They also had the Vest ordered and sent to me shortly after transferring. Every visit the drs. tell about what's new out there for CF and what stage other drugs are on their trials. I like to be informed and they respect that. They also encourage family members to come to appointments. Also upon the first visit I was given a list of phone numbers and ways to contact the doctor if any problems do arise. They are really big on preventing problems before they arise.
I would suggest leaving the peds clinic for the wellfare of your son. Even if it's in Stanford, you might find that else where people are much more helpful and understanding.
If you have any questions I can be reached at sunniehellrazer@hotmail.com
-sunnie
I would suggest leaving the peds clinic for the wellfare of your son. Even if it's in Stanford, you might find that else where people are much more helpful and understanding.
If you have any questions I can be reached at sunniehellrazer@hotmail.com
-sunnie