Sunday, October 19, 2008

Red Tape Road to Hell

I changed doctors, to PMA, the last time I was hospitalized (for the blood volcano issue). My thinking scale down from 4 doctors to 3 and maybe the lines of communication would be faster and benefit me in the long run even though I love my pulmonary doctor and have been seeing him since I was 18. I have had major communication problems the last 2-3 year due to my doctor not seeing patients in the hospital anymore so I had to see PMA (the only pulmonary group in Reno) while in the hospital. So now I have PMA, the ID(infectious disease) and my clinic doctors (UCSF is my clinic 5-6 hours away). And now comes the hell road of red tape........

Thursday I went to my first PMA followup visit for my bleeding issue. PMA told me I should have been embolized when I first was admitted and going in now would be a waste of time. Also they said because of the bleeding I now have a pocket in my left lung that a major infection is not only sitting in there but I am just full of infection and need to be on long courses of inhaled and IV and or oral antibiotics different then the ones I am on or have been on since they have not done anything for me. They asked me if UCSF had talked tx with me and said they should be. PMA called ID while I was in the office and they called back as I was checking out. PMA said they would make me an appointment with ID so I could get in asap. I said when I was checking out I can wait and you can just tell me when the appointment is and the barracudas in the office said no we will call you this afternoon to let you know what time and when. No call!!

Friday I called PMA and tried to explain the situation to the receptionist and all she did was transfer me to scheduling which I had to leave a message. They did call back and I explained the situation again and all I got was the run around, well why would you need to see ID and what type of infection are we talking about, I don't have the dictation and won't for another 2 days, I'm sorry you can not speak with the Dr. etc...... So I finally got the phone number, like pulling teeth, and said never mind I will call myself!! So I call ID and OMG the doctor who had received the call from PMA was not in the office and they could page the doctor who was on and I could talk to them and yadda yadda yadda....so I said please have them call. The doctor did call me but big surprise he knew nothing about it and said to me the only way I can treat you is for you to go to the ER and then they would pick up my case and then he was sure someone from PMA would sign on because it was not worth an office visit. WTF!!!!!

Now I know most of you are saying go to UCSF and be admitted there right? Every time I have been to clinic they do tests and more tests and say OK see you in 3 to 4 months. My first visit there they told me on my second visit they did not think they could help me but now they could. They have talked about Tobi but never communicated to others or given me a script for it. The social worker said to my face sorry I can't help you cause you live in Nevada. (That is also what every social worker has said to me here) And why should I have to go 5-6 hours away for something that they can do just as easily here. UCSF said they would help me and work with my doctors and have yet to do so!!!!!!!! I would be all alone and with my laka 02 brain would not know half the time witch way was up.

I am afraid, frustrated and just plain spent!! But I will still continue on the red tape road to hell but any short cuts or advice would be greatly appreciated. Thanks for the read!!

2 comments:

Tina said...

Well I don't have any shortcuts to offer you but I wanted to say don't give up!
Hang in there S.

whatsherface said...

I'm glad I read this - gives me more insight into your struggle with UCSF. You should be able to ask your doctor in NV to rx Tobi for you - I'm not sure what your insurance is, but if they won't cover it (or if you don't have insurance) there is a program that can help pay for it.

My suggestion, since UCSF isn't being very helpful, is to listen to what other cystics are taking/doing and then suggest those meds or therapies to your local doc - tell him/her you want to try xyz and need an rx for it. If he/she is reluctant, we can help you find statistics or whatever that show what other centers are doing for their cf patients. Maybe you're already doing this?