Non-compliant CF'ers in the hospital

[farbeyond1]

This is my 10th day admitted again. I guess my lung get recharged for about 2-3 months until needing to be plugged back into the IV's. Fortunately I'm hopeful that I will only have to be admitted 1 more time before I am transplanted. These hospital stay are 2-3 weeks, but they feel like 2-3 months. I deal with this the best I can. For the most part, people here are friendly and keep me company when my girlfriend and family aren't around. As you all know, we never sleep well in the hospital... nothing compares to the comfort and peace of home.

While being admitted, I usually find out many things that are going on in the hospital enviornment. One item that is really bothering me, is how several other CF patients neglect their care. Each time I'm admitted there are usually 2-3 other CF'ers in at the same time. We all know about one another, but don't actually get to meet. This admission has an unusually high amout of CF'ers, probably due to the increasing humidity. There have been 6 other patients here, and I've heard about a few of them being non compliant with their treatments. We even have 1 girl that is admitted pregnant, who still doesn't care for herself as good as she should.

She is someone out of all, that disturbes me the most. This girl tries to portray herself as independant and tough. She has the all too typical thug girlfriend image that has been infesting our society. I don't know this girl personally, but people like this are extremely easy to read... as they're intellect isn't that deep. I don't mean to sound so cold, because I do consider myself to be compassionate. I save my compassion for those that deserve it. Believe me, I also understand what it's like to have a life that isn't so great. Life puts us all through many tests, it's up to us to push through them and become better people. People like this girl shouldn't even be admitted to the hospital, why waste a room if you're not going to conform to what the doctors ask you to do? Their care could be given to someone that wants help, that wants to fight through the illness and feel better. What bothers me more is the fact that someone like her will be non compliant over the next few years and eventually need a lung transplant. At that point, maybe then they'll see the light and follow up with appointments so they can be transplanted. If someone like her was to get listed today in sicker condition, she would be bumped in front of me for a transplant. Here is a person that ultimately caused herself to become ill, and now expect people to compensate for her prior ignorance.

Need I go on? Yes... I do. The main thing above all with this person is the child she is bringing into this world. If someone can neglect their own care, how are they going to care for a newborn properly? Granted, there are times when people like her become enlightened once the child is here, but there are too many times that people like her remain the same.

Truly a disgusting representation of our society today.

 

[thelizardqueen]

Some people deal with illness differently. Some people don't like to admit that they are sick or that something is wrong with them. Maybe she is still in denial of her disease. I know of a few people who have terminal illnesses, but don't take the greatest care, because they are in denial still. Just because she doesn't take the greatest care of her disease, doesn't mean that she doesn't deserve to be admitted to hospital. But then this is just my opinion and thoughts. I'm compassionate for everyone - even my worst enemy.

As for transplant, if she's not complient with her treatments then most like will she even get listed? The transplant team I don't think, would invest time and money into a person who won't even try.

All I can say, is that while this upsets you, and its horrifying to think that there are people out there with illnesses that don't take care of themselves, there's nothing you can do except for get down about it. Maybe there are other issues at work as to why she doesn't take proper care of herself. Who knows.

 

[farbeyond1]

She could be listed, and would remain listed if she decided to change her ways after already causing the damage to herself. That is my main complaint.

It doesn't what the scars from her past are. If you're deciding to have a child GET OVER IT, and learn to care for yourself so you can be there for your child. I can understand your compassion for her, as far as being hospitalized. We can agree to disagree with that, because I do feel that her hospital bed could be going to someone that has more respect for themselves.

For a person to act as she does, it's obvious that there are other underlying issues that have caused her to live life as she does. We've all suffered some form of abuse in life, and we're all here living today together. Those that choose to remain hurt, are failing to see how much better life could be for them. Whatever kind of abuse it is, be it... sexual, physical, mental, or emotional from having an illness... these are all things that can be worked on. We have the freedom to choose whether or not we want to help ourselves, if we choose not to... there will be reprocussions from that such as making the problems worse. These people "in my opinion" should not get the same care as someone that values their own life.

Hypothtically speaking:
Bob was just listed for lung transplant. He is very compliant with his medications, and does what he can to remain healthy for the procedure. During this time, he keeps a positive outlook and mentally prepares for the road ahead.

It has now been two years, and Bob is still awaiting transplant when Tom comes into clinic and gets evaluated. Toms health is worse than Bob, he is in much greater need of the transplant. The clinic lists Tom and he is bumped to the head of the list. Prior to Toms evaluation, he was very non-compliant and took poor care of himself. The clinic is not aware of this, and now has a set of lungs for someone. The lungs come in very shortly after Tom was listed, so the clinic has not had the chance to see that Tom does not care for himself. They proceed to call Tom in for the Transplant before Bob.

This is unacceptable. My compassion goes deeper than Tom just being sicker than Bob. My compassion considers the individual that died to donate their lungs. The recipient of these lungs should be someone that has a value for their own life, someone that will honor the person that died for them. Sometimes life does make it hard for us to progress, we can be put through some pretty harsh situations. People that allow lifes scars to affect them until death will only know what they were missing once it's too late. They're ignorance shouldn't hold back someone else from living longer.

 

[spicyone18]

I understand your frustration with non compliant patients. As I have a friend that has CF and is VERY non compliant. She never does her breathing treatment, she smokes pot and just overall doesn't take care of herself. Then she ends up in the hospital and is always poor pityful me and gets better, then her cycle begins again. But anyway how do you know this person is so non compliant?

 

[anonymous]

Well just like anything else, it's survival of the fittest. It applies even to those who have CF. Don't take care of yourself when you should, you will die much sooner and feel like crap on the way there. Take care of yourself like you should and you will more than likely live longer and almost definitely feel better on the way there. Go a few steps further and put real effort into your care and theres a good chance you could live quite a bit longer and feel a real da*n good on the way there. It's the same thing with anything regarding health, lifestyle, exercise, care, and mindset. The difference with CF is the whole thing is radically accelerated.


It usually takes a real good scare for a CF that is non compliant to change their ways. Most of the time, the damage that has accumulated due to them not taking care of themselves is pretty extensive by then anyways. We all go through rebelious periods in our teens and maybe early 20's, but theres a time to grow up and realize it's better to be alive with and have a quality of life than be miserable and one foot in the grave due to neglecting our care.



Garyhairycheese

 

[EnergyGal]

How do you know that she does not take care of herself? Possibly she puts on an air that she does not for whatever stupid reason? I have met other cf patients who do not disclose how they care for themselves as it is part of a denial issue. I am sure she does something for her cf or else she would be probably not be here. We all know that her life will be shortened if she continues this routine based on what you are saying is true.
I can understand how you feel because I had a transplant. If I were in your shoes, I would not worry about who goes first because the new lungs will go to the person who matches up. There are many factors that go into get a transplant. I do believe that the center will take many other factors into consideration. If she is that much in denial she will probably not want a transplant and if she does agree, she will probably not answer the phone when the call comes in. No worries. I hope you get your transplant soon. It is not good to think of thoughts like this as it is not going to help you. I have found that stressful topics of any kind even when I feel well weakens your body.

 

[Jane]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>farbeyond1</b></i>


While being admitted, I usually find out many things that are going on in the hospital enviornment. One item that is really bothering me, is how several other CF patients neglect their care. Each time I'm admitted there are usually 2-3 other CF'ers in at the same time. We all know about one another, but don't actually get to meet.

.</end quote></div>

This is interesting. My question is, How do you find all this out about the other patients? What about the privacy act? When my boys are in the hospital I am always curious about who is there on the same floor but no one can ever tell us. In fact today, I recognized the name of a girl whose family I know. I asked the nurse if it was her so I could say hi to her dad and the nurse refused to tell me. I think its important to know who is around you for network and support reasons.

Anyway I was just curious.

 

[anonymous]

Oh, vee have vays of making you talk....

 

[anonymous]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

Oh, vee have vays of making you talk....</end quote></div>



I will keep your guantanamoesque torture techniques in my thoughts and prayers!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!




Garyhairycheese

 

[Emily65Roses]

If we're just looking at noncompliance alone, most of us go through a period. While I was in high school, roughly ages 16-17, I was less than compliant. I skipped a neb maybe once a week, never took enzymes, and smoked pot. It was only maybe... twice a month, and that's when it was at the very worst. But I had that period. Now that I have a fiance and crap to live for, I'm very careful. I do all my nebs, all my meds, therapy, enzymes, the whole bit.

If she's young and is having her "noncompliant" time, then hell. Not much you can do it about, and a lot of us have that stage and then grow out of it.

However, I do agree that she doesn't really have the place to be irresponsible. Everyone has these periods, but was I a mother when I was 17? No, so it was only my problem, and I dealt with it. She's pregnant and bringing a child into the world, she's going to be a mother. That should push her to be far more responsible with her health, in my opinion. Course, she's in a tougher position. There are irresponsible women EVERYWHERE becoming mothers <b>every day</b> and there's jack we can do about it. This girl just happens to have <i>more</i> responsiblity, so her lack of taking care of business (so to speak) has a bigger impact.

I don't know what I'm saying. It would bother me too. But it more bothers me because of the fact that she's pregnant and being so careless with her health, than just because she has CF.

 

[Emily65Roses]

Oh and as for the transplant scenario. I am, of course, not telling you what you should and shouldn't be worried about. But as for me personally... I would be far more irritated about smokers that are getting lungs than careless CFers getting lungs. They still didn't ask for CF. Smokers pretty much signed a form that said "yes, please give me cancer." It has always bothered me that people like that get lungs before people who didn't do anything to warrant their sh*tty health. Kay I'm done now. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[kybert]

id like to say dont believe rumours about patients, they are usually wrong. thankyou.

 

[anonymous]

I totally agree Emily, that's really not cool about the smokers getting new lungs. As for this "non-compliant girl" I still don't see how anyone would know how compliant or not another person they have never met is. Take me for example, my entire life I religiously did my therapies and treatments, took enzymes and had to visit the hospital for my first clean-out when I was 16. But, because I was always healthy and did everything the docs told me to, I was SO VERY angry, upset, frustrated and very non-complient about IV's and being in the hospital. I guess I never thought it would happen to me so soon if I took extra good care of myself. I NEVER smoked anything, never drank anything...100% health nut. I continued to take very good care of myself even after that visit and still to this very day and even began to exercise more. To this day I can get pretty non-compliant in the hospital, because I hate being there even when I know that I need it, simply because I work so hard to stay healthy and it frustrates me when things go down hill. I am now 24 and about every 2-3 years since I was 16 I have had to be in the hospital or have IV's started and I get annoyed every time. So, it's not that I do not take care of myself or neglect my CF that makes me non-compliant it's because I DO take care of myself and still have to deal with IV's and hand percussion * shudder*. I guess I still have a little denial about the reality of needing IV's and whatnot related to the CF. Hopefully I will get used to it someday, but I am about to embark on my 4th IV adventure and I am still not happy about it.

But, I agree that its unfair to those waiting to get lungs who were compliant w/ their CF their entire lives should get bummed for someone who was careless and wreckless with their health.

 

[EnergyGal]

There is a new allocation system that sickest goes first and CF's are at the top of the list always now. So smokers never go ahead of people with cf or pulmonary fibrosis or the kind of emphysema you are born with which is called Alpha-1 antitrypsin deficiency

No worries here. CF's are the Champion Fighters on this list. You are number 1

No competition. Believe me the doctors really look at the whole patient and they know. They can see when a person is compliant and if there is any doubt many hands will raise and question.

Be well all

 

[anonymous]

I have been non compliant for years. I would generally skip one neb a day, sometimes would go days without doing airway clearence. I never skipped my enzymes, but regularly skip vitimans and other tablets. But its my choice, its my life and I shall live it whichever way I so wish. Its not a crime if you don't do your treatments and you shouldn't be punished or made feel bad if you skip them here and there. In the last year I have got better at taking the above mentioned but I'm still not perfect. And of other cf people I know, very few would be perfect..

 

[farbeyond1]

I appreciate all your opinions, sometimes I am a little harsh with things. Especially being in the hospital, my weakeness shows through the most. Although I'm trying to make the most of my life, it's sometimes hard for me to look past the faults of others. I guess it's my way of venting from my own frustrations with being here, with feeling like I'm dying just to watch others force themselves to be closer to where I am. I don't mean to sound harsh, nor do I mean to sound ignorant to the phases we all go through.

Personally, I also went through a HEAVY drug and alcohol phase but was fortunate enough to pull away from it. I struggled with smoking pot, lsd and a few other popular choices for too long. I see the damage that it's done to me, both physically and mentally. When I see others going through a similar time, it makes me angry at life, it makes me wish I could let them see all the good in life... instead of focusing on the negative as I once did.

I'm glad to see that this is a touchy subject for you all. Kiel, you're right... it's human nature. We're all prone to being distructive... and I feel that this aspect of life is disgusting. Why do we have to face death to appreciate life? I wish we could all realize that death is watching over us every second, of every day... no matter what our situation is.