Hospice Hell

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

For more of my story or information about CF please like me on Facebook!

CFer isn't a bad term.

Ok, every other day I see someone complaining that when people use the term "CFer" that they are offended by the term. As I use the word often I feel the need to explain why and the reason behind the usage for me.

☆Keep in mind these are my thoughts and do not depict others ideas or thoughts but my own.

I have seen arguments such as, "You don't call someone with Cancer a Cancer'er. Why call a Cystic Fibrosis patient a CFer?" 

      •First off Canc'er' already has the er. They are also known as either a survivor or a fighter. 

    
Sorry, but we as Cystic's, also an unliked term, are not survivors. Yes, we are fighters, but sadly have not survived anything as of yet. Until a cure is actually found or they can cut CF out of us or they somehow change our gene mutations we have not survived anything. We are not going to be CF free as those Cancer Survivors, are now thankfully cancer free.

Another argument, "Adding an ER doesn't make sense to me." Let me break it down.
       •Nouns ending in -er
☆This ending is the most common. It's usually added to verbs to make nouns with the meaning ‘a person or thing that does something’, for example: builder, farmer, sprinkler, or beeper. The -er ending can also be used to form nouns meaning: ‘a person belonging to a particular place or group’, e.g. foreigner, biker, or racer. ☆

We as a community or a group if you will, fall under that category. CF is simply short hand for Cystic Fibrosis, which we all know. Adding the "er" makes the statement that we are a community of people with a bond no one can ever have with us, but with one another.

It isn't a title or a branding on any of us by saying "CFer's". It doesn't take away from any of your accomplishments or who you are outside of being a CF patient. To me saying CFer or Cystic is simply more personal to say than the formal version, Cystic Fibrosis Patient. I feel like that is too technical and robot like.

Last argument is that the "er" is supposed to represent the word "sufferer". I disagree with this 100%. I don't believe that any of us are sufferers of our disease. I believe we are fighters and making strides even if it hurts and is a bumpy road.

☆We are amazing, women and men, CF is only part of you not all of you. How you interpret things is all on you, but if it is always in a negative light and always being offended in someway it will only make this journey harder for you in the long run. 

Focus on the good things and not on such a silly thing like a word grouping all CF patients together as a group. A strong, beautiful, amazing, and inspirational group of people.

It also isn't saying you are the disease first and you second. I'm not sure where that idea came from either. When speaking about a wide group of people we are all grouped by a phrase or word, no matter who that group may be. There is really no other way of addressing a large group without using the titles we have at hand.

To say that a simple short hand version of your disease is insulting is absurd to me. I am sorry if you disagree, but hopefully this blog may have helped to understand it a little more as to why it is used.

Lets all just be mutants and form the new X-Men,
    Sandi

Follow me for more insight, my journey, and randomness of CF on Facebook

Let's talk about Death!

Terminal, life threatening, premature death, slowly dying, and end stage all mean the same thing, your life and disease are slowly getting worse and death is a lot closer for you than say a "healthy" person. The other thing they all have in common, is no one ever wants to openly talk about it. Time to change that!!!

☆I wrote a similar blog a year or so ago about my thoughts on Death and CF in the way I view it for myself. This one is more geared towards the idea of not letting the death conversation be put on hold out of fear or sadness. 

In life we are promised one thing and that is, death! You may never get to see love, children, happily ever after, or a white picket fence with a dog and kids in the yard. Sometimes you get a glimpse of life and it's over. Sadly, there is nothing that can even be done about that. No parent should have to bury their child, but with diseases like CF they make that a little more complicated and heartbreaking.

☆When I was growing up, Cystic Fibrosis was considered and to me still is a terminal disease. It was for the longest time a death sentence to children with "salty skin", which is NO longer the case thankfully. Now, the debate is out there on terminal or not and I don't feel like getting into it, so for this blog and my personal sake, let's just say I am terminal.

When I was growing up I was never misinformed or deprived of what CF really was and what could and would happen. My parents told me what was going on with my lungs and my life and never held anything back. For that I am so thankful for the parents I am blessed with. Honestly they explained death and how it worked. I sadly saw it first hand when my grandfather passed and one of my cousins with CF who died after her lung transplant. So, from a YOUNG age I was ready and aware of death.

☆I had my funeral arrangements in mind, since I was roughly 8 years old. The songs to be played, the way I want to go, the people who will be there, I want a guest list. I knew it was going to happen and wanted my last goodbye to be perfect. And I still do!

As an 8 year old child that is something you should never plan, think, or know about, however, I did know about it as it was and is my life. To me that made the world a whole lot more understandable. Growing up fast is something a Cystic has to do, sadly no matter the age you learn quickly that life isn't something to mess around with and you should never take it or the people in your life for granted.

☆I am sure we've all heard the "you have ten years" "6 months", "don't get attached or make plans". That is all a bunch of smoke and doesn't have any relevance to any of us, especially now in 2015. Although the reality of death is still very possible and real.

I can't say I don't think about it once a day or even more, because I do. I constantly lay my head on my pillow at night and think, "will I wake up?", "will I get to say goodbye?". I can't help but think these things and I am sure I am not alone in the CF community along with all of those who have terminal diseases. I guess you could say I am just not "afraid to die" or am I scared of death, which I have been asked alot throughout the years.

We all die, I can go tomorrow in a car wreak. This is reality. However, having it as a reminder everytime a coughing fit hits either one or more times a day it becomes an eye opener.

☆I took a class in college that was called, "Death and Dying", terrifying class actually. However, it hit a lot of things right one the head about this topic and how people are squirmish to talk about death. It shouldn't be like that.

I think it is somethig we should openly speak about, sick or not this topic shouldn't be so taboo. Will it hurt when I go, I don't know and I hope not. Will my loved ones be upset, I'd like to think so. That doesn't change that it should be talked about as naturally as anything else. Talk to your loved ones about what you want and ask questions about death. Tell them how you want to say goodbye for the last time. Be open about it and it honestly will make it easier on everyone involved.

☆Me, I want a Kings/Vikings Burial and in most states it is illegal, although I have found a loop hole. Which is why when the song, "If I Die Young", by the Band Perry, was released I got cold chills and to this day cry every time I hear it. I swear she read my journals growing up. I want to be surrounded in roses, sent into the sea with a love song, that my friend Ashley sings for everyone to hear, and then set on fire to become one with the earth. I believe and know in my heart, I will come back as rainbows and butterflies to prove to my loved ones I am watching them and I am ok.

 

Never hide the truth of death and the facts from your little CFer's. As hard as it is for you they can't be blind sided by the topic later on. By no means do I think you should harp on it and talk about it all the time. Only make small gestures at an appropriate age to see where their mind set is on the topic. Then brush up on it once a year or maybe 6 months until they understand 100%. Don't terrify them with the topic and make them afraid of anything about dying or CF. It is just more difficult to swallow and cope with when you don't mention it until it's too late and they are at that point and have no idea what's going on.

☆Hopefully, with all of these new drugs for CF we will be living even longer now than before. I have faith that CF will one day be controlled by these new drugs and treatments and will help to prolong lives. Just remember everyone one is different and these new drugs are mutation specific at the moment and not everyone qualifies, so the death talk does still need to happen.

The truth hurts sometimes but it's needed,
  Sandi

Please follow my FB for more information on CF, life, and my story!!