This was a status update until I noticed it was forever and a day long! So, here is my medical "update " or should I say my medical cluster @$*!
Ahhh setting up a new everything and finding the right doctors has been torture the past few weeks! I feel like Hospice should have helped me set everything back up when they discharged me, instead of just never seeing or talking to me about anything at all.I feel like the entire hospice care system as I was seen by two different ones just dropped the ball with me all together.
I have yet to speak to, Amedisys Hospice about them discharging me with the actual company. I was informed when I was discharged from Fairmont Regional Hospital by thier social worker that, Amedisys Hospice was not going to pick me back up as a patient.
Due to me not being, "Hospice minded". Which she explained to me just meant that I was still wanting to receive IV antibiotics to maintain my health at this level, instead of just letting my CF progress and worsen. I called hospice after that conversation and was ignored several times. I have still yet to be told by them that I'm no longer a Hospice patient.
♡Keep in mind my health has NOT changed from when the CF team first put me in Hospice Care. I have been able to maintain my level of health only, because of me wanting and getting IV antibiotics when I felt a flair coming on. My goal wasn't to die, I don't think that is anyone's goal! I am sick of being sick and so tired of being tired, however I'm 28 years old! I'm not ready to hang out with my Grandpa just yet! So, yes I'm still fighting to live!
The first issue that came from this BS is having to fix my insurance after being terrified when I was told I no longer had ANY type of insurance. Luckily, it was fixed last Wednesday, five days ago, but not without leaving me medication-less for two weeks.
♡I tried to get an appointment with the doctor that had me as a hospice patient, because he is a PCP in my home town as well as a hospice doctor. I figured it would be so much easier for him to be my actual PCP knowing everything I am going through and that my health is still just as bad as it was 3 month ago. They were setting up an appointment date for me with him and then couldn't be any more rude after I said I was discharged from hospice. With a very quick and snappy reply, "Oh never mind I thought you were still with him in hospice, no he doesn't have any room for a new patient!" Really? Really, no room? Ok!
WV had it as if my primary insurance was still with Amedisys Hospice and WV medicaid was secondary, so they wouldn't pay for anything until Hospice discharged me in writing! Of course the Hospice company was giving me a hard time with not returning phone calls and being unbelievably rude, complicated, and unprofessional when I did get ahold of them. Thankfully the insurance part is now fixed and is under control.
I now need to get an all new PCP, Pain, and GI doctor. I have to re-establish care with the Pulmonary doctors up at WVU Hospital or decide if I want to go to another hospital that specializes in CF near me like John Hopkins or UPMC. I just hate the drive and the fact that I'm rarely visited as is when I'm hospitalized now and WVU hospital is only a 30 minute drive away. Both of those choices are two hours away from home talk about being alone.
♡I have so much on my plate and so little know how when it comes to figuring any of this out. Needless to say tears of frustration is all I've know this past week. I will get through it and get it right, I just hope it's sooner than later.
BUT, I am feeling ok right now and WILL be home for Thanksgiving!!! At this point that is all that matters to me!! I do have a LONG day of running around and making phone calls tomorrow! It seems like I have the world set against me, but this girl will be with her family AT HOME eating yard bird, on a table and not in a hospital bed for the first time in 3 years this Thursday! That is all I need to keep me going at the moment!!
☆♡My entire family have all decided they never want hospice around them when it's their time. I'm not sure what it was or why I was treated or should I say mistreated by the hospice system, but it HAS to be a better experience with other people. Maybe I'm just a terrible patient or something I'm not sure. Maybe it was my age, my looks, my positive personality, my laughter, and smiles. Maybe it was CF and they were confused with it. I'm not sure what it was, but I pray, and I don't pray, that I'm the ONLY person that's ever been treated like this!!!!♡☆
Confused beyond confused,
Sandi
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