DISCLAIMER: Please understand this particular blog is my personal experience with an independent hospice agency in my area. Not all and I hope not many experiences are like mine. This blog is only to show others what I went through and how to make sure it doesn't happen to you or your loved ones!
☆As promised here is the scoop on my experience with Hospice care. Please understand this is a month and a half of events I am trying to put in this blog. It is long!!
When you hear the word "Hospice" you can't help but feel a little terrified and scared. I was put on Hospice on June 10th 2015 due to my health getting worse by the day, the fact that I am NOT going to do a transplant, and my will to be home longer than two weeks.
☆Keep in mind I have literally been admitted once a month for the past year and a half. Watching life pass by and only seeing things with and about my loved ones via Facebook.
The first night I was admitted went very well which gave me great hope. The nurse was amazing and I automatically clicked with her. I was very upset when I found out she would not be my primary nurse, but I was under the impression that my primary nurse would have the same bedside manner and attitude as the on call nurse. Jokes on me!!
The next day when my primary came she was older and was put off by many things. My age, my hair, and my tattoos as she made vague comments about all three. She mentioned what happened with me and the infusion company before being on hospice, I explained that situation in the CF, Drugs, & Rock and Roll blog.
♥ From that moment on she would continually talk about the only CF patient she knew from her home town and was admitted into rehab for drug addiction and that she hopes that isn't the path I'm going down.
She then follows with- "I do not know anything about your disease and what your needs are. I'm going to have to do some research evenutally. Your a mystery to me." Right there was the last straw with this nurse. I was done in my mind. I called and requested a different primary nurse and was ignored.
So, she continued to come out for the first two weeks. I started feeling sick with what felt like a CF flair. Knowing what was going on I needed IV meds and informed the nurse of that and my symptoms. Shortness of breath, coughing blood, lower oxygen stats than normal, low grade fevers, and massive pain. So I asked for IV antibiotics by name and she told me I didn't need IV's she'd have the doctor order me oral antibiotics and to just "do an extra treatment". Not only did she have a doctor that I have yet to meet or talk to order me oral antibiotics, but it was the smallest dose possible.
☆One of my personal CF issues is malabsorbtion!! Oral anything does not work for me unless the dosage is through the roof. However, I went along with it to comply so I could be able to say, "I tried it your way now can I get IV antibiotics?".
I finished the pills and surprise I wasn't feeling better only worse. At this time we were having some issues with my pain management and where to hook my pain pump to. Either subcutaneous injection in my stomach or using my port. I did not want to do the subq what so ever because, yet again absorbing issues. She then tells me on a Thursday, the last time I'd see a nurse until Monday, to go ahead and connect my pain pump to my port and we would sort it all out Monday and that is what I did.
☆I was yelled at by, who I'm guessing is woman in charge of everything, I still do not know her title or role and to be honest I don't care to. For using my pump with my port. When I told her I only did it because the nurse told me to do it that way in order to get the pain medication through the weekend. The nurse denied telling me to do so!!!!!! Making me look bad and like a liar when I was doing what I was told.
Still sick with fevers and everything I asked again for IV antibiotics and was told she would order them. She never did instead she ordered a low dose of Levaquin to take orally. I got irritated and even more so when she asked, "Why doesn't oral pain medication work for you, but oral antibiotics do?" I kid you not those were here exact words. My response was simple, "They don't! That's why I am getting worse and begging you for IV antibiotics!" She didn't say anything else.
☆The nurse would come and count every pill I had. Not just the narcotics but even Claritin and my Creon. Making me feel like a horrible person all the time. Treating me like a drug addict making me terrified to take anything without thier ok.
My pain was also so high that I was not getting relief at all. I was thinking I had built a tolerance until I realized I was only getting .01 of diludid subq every hour. Basically I was really only getting HALF of that. So, I took the subq out and said screw it I can deal with pain, it's whatever. I put the pain pump, pain medications, and purse I carried them in up and didn't touch it for 3 days.
For what little medication I was getting I started to have a small withdraw so I thought WTH lets connect me back up. I called the nurse and had her come out to redo the subq and connect the pain pump. When SHE pulled the med bag out of my purse it was leaking and had a needle mark in the bag. I quickly examined my purse and found garbage from when I was out last. There was a the empty syringe, needle, empty benadryl vial, and saline syringes from when I was drawing up my Benadryl last. All still inside the purse that my pain meds and pump were in. I can only think I was rushing through everything that I didn't click the lid on the needle hard enough to close it. Tada hole in a bag.
☆Yes, another only can happen to Sandi situation. She saw the needle along with the garbage and everything that showed it wasn't tampered with, it was just stupidity on my part. She failed to inform the infusion team of that. She went into another room of my house and told them it was a needle mark and all of the meds were leaking out of the bag. Last strike for me and the infustion agency. They pulled me from their services and 5 minutes later came and took everything I had medical wise and will never let me use that service again. Not for IV antibiotics, PORT changing supplies, or IV related items.
She decided to have a "heart to heart" with me after the infusion company left. She yet again brings up the Cystic she knows who was in rehab and then says something that made my jaw hit the floor.
"Someone is trying to take your pain medication it's obvious. It could be you, your husband or your mother. If it is one of them you have to ask yourself, how much do they really love you? They must not love you at all if they are poking holes in your bag and taking away from you."
☆Now, I know for a fact that, that is 100% bull shit, however IF it were true not a single person I KNOW would be that stupid as to poke a hole IN the bag and basically throw away the medication as it was all in the lining of my purse. They would be smart enough to draw it from the port at the bottom of the bag. I don't know a single person who is "wanting narcotics" that would just throw it away! Defeats that whole idea. You can't take or use something that is now soaked into a purse lining.
They decided to put me on a pain patch after that I told them that it doesn't work and only makes me high, takes away my voice and vision, and makes it to where I have NO balance. They told me other than oral meds that's all we could do so I caved and said I'd try it.
☆Oral pain medication scares me to do at home because the dose has to be a very LARGE amount for me to benefit and it scares the hell out of me.
At this point it has been a few weeks and I was having mental breakdowns, anxiety attacks, and panic attacks nightly. I felt so neglected, mistreated and scared for my health. I was having to call the on call nurse every night just to get an "OK" to take a Xanax for fear of getting yelled at.
☆I wasn't sleeping, because of the pain, my anxiety, and just being scared for my health that they told me to start taking .5mg of liquid Haldol twice a night. Along with 1mg of liquid oxy fast for pain at the same times. It wasn't long until I was running into thing with this medication mixture plus a pain patch. I was seeing the most scary pictures in my mind when I would close my eyes, yet not seeing anything when they were opened. Nothing I said made any sense to anyone, not even me. Then it brought on an episode of Tardive Dyskinesia. This went on for two days until I stopped everything myself.
To top it off I ran out of oxygen tanks and needed more ordered so I asked not once, not twice but three times and never got them. I was basically a prisoner of my house because I didn't have oxygen. Finally MY HUSBAND ordered them and it still took 3 days for them to get to me.
I finally got to the point that coughing dime sized amounts of blood, being over drugged, made to feel like a horrible person, and ignored I said screw it I'm going to the ER. I was diagnosed with psuedo and a severe exacerbation. I have one more week of IV antibiotics for the full three week stay. Which could have easily be avoided and fixed in the beginning if she would have listened to me.
I can keep going but this is already so long and really it is just more of the same about neglect, unprofessional actions, and ignorant behavior.
Please, speak up if you or a loved one are being abused or ignored by your health care team, hospital, or hospice agency. It should have been easy and comfortable. It should have been making my life easier when instead it made my life a living nightmare.
Deeply Disappointed,
Sandi
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