Saturday, December 29, 2012

Out of hospital

I'm officially at a motel for 10 days. The hospital has released me based on my refusal to commence radiation and chemotherapy immediately, which they claim is "refusing treatment". Funny thing is I do believe, people with normal medical insurance get to make those choices. So why wouldn't I?

At present I am horribly uncomfortable, the bronchitis is coming back since I got off the antibiotics too soon. Dr. Fratkin of hospice care at St Joes said (only 2 days ago) that he would continue to work with me but when I called yesterday to ask if the antibiotics could be continued, he said I wil have to go to the Emergency Room or make an appointment at the local clinic for further treatment.

I don't know what's up with this corporation hospital but I do know that they released me without any true concern for my well being.  Clear where their concern is at, its on something other than my Heath status. I can't drive, I can barely walk. I need daily care. I had to have my son come to get me. I can't even make a meal to eat.

 The lymphedema and bronchitis needs to be taken care of before slamming my body with anything else. Why is that not obvious?

There is one certified lymphedema doctor in Eureka, she's on vacation until the 7th. Julian's calling to make the appointment. The lymphedema is worse than its ever been, extremely uncomfortable. There is no money for out of the area trips, I have to wait until she gets back. I have no idea whether Medi-cal will pay for lymphedema treatment. I've heard that its minimal treatment with Medi-cal insurance,  or maybe none at all. I'm praying I can get that treatment. The lymph swelling is so bad it's affecting everything, my back is looking like scoliosis and I can barely get around because of the weight on the side, pulling. I'm miserable.

The bronchitis is coming back, congestion, coughing up stuff. I feel so sick. Dear God, please help me.

Wednesday, December 26, 2012

Pathology Reports

I was told that I don't need to see or review my pathology reports in order to make a decision regarding an aggressive course of treatment. (Radiation & Chemotherapy) In fact, I was ridiculed at some length by social worker Jeanette, and told that it was an unusual request, "since most patients simply trust their Doctor". I was asked in an antagonistic voice whether I thought that "we're just going to treat you for cancer you don't have"?  I was initially told that if I wanted to see my pathology reports, I could go down to the basement records dept and get them myself. (Ok, I will) This woman was more than a little pissed at the mere idea that I would question them.  But, the n
ext day a manila envelope was shoved under my Evergreen room door, inside were pathology reports. I think. Since there was no cover letter saying "here are your pathology reports" nor an indication of how they arrived. Two of the reports says I am a "post mastectomy" patient. Not accurate. I have not had a mastectomy.

The social worker at The Evergreen, Jeanette, was clearly surprised and then outraged that I would request to review and get copies of my pathology reports. She expressed her outrage with increasing contempt and disrespect, literally shouting at me in the family room area "I need to know what your plan is !!" 3 times in a row, followed with "I can call the security guards and have you thrown out of here right now, if you don't want to tell me what your plan is, right now!!!" (Stamping her foot and pounding her fist for emphasis)  I  was having some sort of panic attack by that point so I had to sit down and was gasping for air, scary. But at that point I realized that the shortness of breath I had been experiencing was from an anxiety attack not because the cancer was causing my lungs to fill with fluid as I was told. The shortness of breath stopped within minutes of using a calming breath technique. Which is a good thing to know since otherwise I might've had a heart attack right there. Wow. I finally managed to get out inbetween gasping for air that my plan is, as I already told them, to review my pathology reports before making a decision, to which Jeanette responded by yelling " and you got the reports this morning.. !! Her last words to me as I left the room was shouting " ya, well, all I know is, you BETTER Be in radiation or chemotherapy BY Friday, OR, you're OUT OF HERE!"! Delivered in a nasty tone as if she were a bouncer in a bar or a warden in a prison.

Man these people are serious about rounding up their radiation/ chemotherapy patients. ( Maybe they'll get the stun guns and sneakers out next ? One can only wonder...!

12-26-12: Wednesday : I spent Christmas day with my son and his girlfriend and stayed overnight.. a voice message  from Dr. Fratkin at St. Joseph this morning at 10:30 am. saying that the lock to my room at the Evergreen has been changed and my personal things were "secured for me" to pick up . No notice... Big surprise. Seems a bit of Kami-Kazi action going on here. I wonder why. I called St. Joe's medical records department this morning and was told my medical records will be ready to pick up in a few days, after they are signed off by the doctor.

I just signed a Hipaa release ( a few days ago) to allow the North Coast Journal to review all my hospital records at St. Joseph's. Maybe that's what's causing all the angst and snappy decisions. I wonder what it is they don't want found in my records? Must be interesting .., all this strange paranoid reaction... Locking me out of my room with no notice, strongly discouraging and then refusing to provide pathology reports, verbal attack & intimidation, general nastiness and a distinct lack of respect or compassion.

Tuesday, December 25, 2012

St. Joseph's Hospital

I ended up at the ER on 12-5-12 due to a severe bronchial infection. My roommate had it for a month before I finally caught it so I guess my immune system did the best it could to fight it off. But it got so bad I was having trouble breathing and had to go to the hospital. They gave me some antibiotics and sent me home. Two nights later I was back in, this time by ambulance. My left breast ruptured and my saline implant actually fell/ slipped out, which was really weird and frightening. I have no idea why that happened. But there is now an open wound where the implant came out, I don't know if it will heal as it is, Dr. Mahoney said it probably won't heal by itself, and she advises that getting radiation for 4-6 weeks will help it to heal. She also says that Radiation treatment will reduce the lymphedema and decrease my back pain. I find nothing online to support that theory, in fact I find
lots of evidence to the contrary;  radiation treatment inhibits wound healing and aggravates lymphedema.

My primary overall impression of St. Joseph's is not good. I've had zero wound care,they didn't even clean the wound, and the hospital bed was so bad that after only 3 days I
now have the beginnings of a bed sore on my tailbone. They have these weird inflatable beds that are supposed to prevent that, but in reality none of the nurses knew how to work the bed and I ended up with my tailbone sitting on the metal frame.

Other than that; death, death, more death. I've been told I'm going to die over and over and over. That place reeks of death. At the end of 3 days,  they were about to release me onto the street (with a referral to a night shelter) with an open wound that had not been cleaned and severe bronchitis. But since I could'nt return to my room rental due to my roommates severe (contagious)  bacterial bronchitis and, I was so sick I couldn't stand up by myself, so they decided to allow me to stay at The Evergreen Lodge, it's in the St. Joseph's compound. Dr Mahoney arranged for me to stay there "while being treated." The next day, at the Evergreen Lodge, Dr Magoney and Jeanette ( they said they work  together) I was told by these two women that if I would agree to radiation therapy "it would be a good excuse to stay at the Evergreen for 3 weeks and therefore " have a roof over my head." Lovely exploitation of the poor, it never stops. I didn't agree, and I was too sick to say much.

Horrified. Depressed. Discouraged. That's how "modern" medicine makes me feel. In one weeks time I was told over and over and over that this illness will kill me, and I can only hope to die comfortably in no pain. ( But they havent staged me) Which by the way is incredibly difficult to believe since I was in St. Joes then the lodge for an entire week in miserable pain until they finally sent the palliative care doctor over (dr. Fratkin) to prescribe some painkillers and a program of pain control. For an entire week I was allowed to suffer and told that going into immediate radiation treatments would  solve all my physical problems including the constant pain. Dr Mahoney says the open wound will probably not heal, however, it looks to me like its already healing.

What's this hospital up to? It's clear to me that they tried to exploit my position by offering " a roof over my head" in exchange for my agreement to get treated with Radiation and chemotherapy. Well that certainly is an expensive roof for Medi-cal to pay for. Wonder what other deals they have over there today? Wonder also how many homeless and or disconnected people have been exploited like this, told they don't need to see their records, intimidated into a "treatment plan", yelled at and threatened. Makes a person wonder.