My friend

[Eternal]

I already posted this in the "Teenagers and Young People" forum,
but I'll repost it here too: I'll give you guys
a quick synopsis of my friend. They have cystic fibrosis, and are
currently in failing health. The person is in their mid teens, and
most of thier major organs are failing either due to her disease,
or the fact that they overdosed on pills when they were younger. My
friend has lived an unfairly harsh life due to their family
problems. I do not want to get into it, but they have suffered from
some pretty harsh things. I talked to my
friend earlier today to learn that they were coughing up blood. My
friend coughs a lot, to the point were they get huge migraines, and
even vomiting. However, they usually do not vomit/cough up blood.
I'm also very concerned because for the past month or so, they
cannot hold down any food whatsoever. They cannot get any nutrition
since that they are often times starved of food, and when they do
get some... they just vomit it up. I told them
to go to the hospital, but they flat out refuse. My friend is very
stubborn, something I almost admire about them, when it doesn't get
in the way of their own safety. When I try to convince them to go
to the hospital, they claim that it is just a temporary fix, and is
just slowing down the inevitable. I know that CF will eventually be
their demise, I just don't want it to happen so quickly. I am so
worried about my friend. I told them that it may be just slowing
down CF's effects on their lungs, but all we need is time so that
they can live long enough to get the heart/lung transplant they are
signed up for. They would be getting it in about three years, and
I'm not too sure my friend has that long, especially if they do not
keep proper care of themselves. Then my friend
told me that they do not want the transplant, to my horror. My
friend thinks that just because they over dosed, they do not
deserve it. In reality, I tink they are very deserving of one. I
try to convince them of this, but they just say that they will just
exist until their lung collapses. It is pretty much amazing that
they even made it on the list in the first place, given their other
complications. My friend is selfless, they want a more
"deserving" person, who did not try to take their own
life to have one. I think they are tired of suffering from their
various illnesses. I am a wishful thinker, I
want my friend to live a normal life span. Now to my questions, is
coughing up blood the last sign before things get really bad? Will
it get worse, and worse? Will their condition ever get better? Is
there anything I can do to convince them that they are worth the
transplant?

 

[JazzysMom]

You seem to have many thoughts going thru your head so I will address the two that seem to be of primary concern. The coughing up of blood called Hemoptysis is common among CFers. Now the cause of it can vary. For me it can be anything from dehydration &/or infection to drinking too much caffeine or stress. It sounds like your friend is definitely medically induced since they are not caring for themselves properly. Every CFer (IMHO) goes thru a depressive state of mind & it sounds like your friend is there. It is very hard to think about continuing on with an illness that can be so vicious when things keep happening over & over again. BUT on the same note it doesnt sound like they are putting enough effort into stopping the cycle. If they would feel better physically I bet mentally/emotionally it would make a different. Not all CFers choose to have transplants & the reasons vary so that alone shouldnt be a concern. The concern is the overall appearance of not caring in general. What type of support system (family, friends, doctors) does this person have? Is there someone in addition to you that can talk to them & try to get them help with the depression which would in turn lead to proper medical care? Can you get them to come here & see that there are many,many people like them! I use to think no one else (not even another CFer) could possibly understand what I would feel/think. I found that to be THE most untrue thought I think that ever entered my mind. One more thing....we all make choices that are not the greatest at times. When I split up with my first husband I tried overdosing on my seizure meds. I only realized as the buzz affect was hitting me that I was a stupid idiot because all the years put into keep me alive & healthy with my CF I was going to throw away. Luckily I had a friend who was an EMT & came to my rescue. My point is that I overdosed also & have made other poor decisions, but none of that makes me any less deserving of a transplant. That mind set is just an excuse to justify the neglect & non caring attidude & frame of mind that your friend is in.......Professional help is definitely needed. How you can get that for them I dont know! Good Luck & Let us Know what happens!

 

[Diane]

I couldnt have said it any better than Melissa just did. Hemoptysis is a common problem for those of us with cf. I had hemoptysis before i had any real lung problems which of coarse doesnt much sense. It sounds like your friend is at a point where he/she thinks "i'm doing so badly now there is no turning back, so whats the use in trying" . Please encourage your friend to seek help, they need it desperately. All is not lost , its never too late to start trying. We all make mistakes and bad judgements when we are young in one way or other, but that does NOT make your friend undeserving of a transplant. Look at drinkers who receive liver transplants only to go back to drinking. THAT is a waste . What your friend did in his or her past should not be an issue at this point. Like i said we all make mistakes. Please let us know how your friend is doing............

 

[anonymous]

I too have coughed up blood and usually do so when I have an infection, around my period or if I have been coughing alot or extremely hard. As for coughing till you throw up - I too have had that wonderful experience normally I get that when I am sick because I have to cough so hard to clear my airways.

Reading your post breaks my heart. I have never felt quite as helpless as your friend sounds from your post. I have been on the verge of depression, but managed to snap out of it before it affected my health. I think many CFers have times when they feel there is no use. Before my last hospitalization (1 month ago) I broke down and told my mom there was no use, nothing I did would make me better so why do I even try. I keep doing everything they tell me to do and I keep getting worse (PFTs lowering, weight lowering, O2 sats lowering and so on). I went in the hospital and have seen a great improvement - and now I am able to see a brightside of things again (in regards to my health) and it makes me want to take care of myself again.

I hope you are able to get your friend to talk to someone (a counselor/therapist) because I truly feel their mental state is more than you can handle alone. They need someone to talk to and help them through this in a professional situation - just my opinion. I have been to counseling - I was headed down the road your friend was on my sophomore year of high school. It was embarassing for me because I thought everyone could tell just by looking at me that I was in counseling and at the time I thought only "crazy" people needed to see a "shrink". I am so glad I went because it helped me so much and it made me realize what I have to live for and be happy about.

I hope your friend starts to improve and that they are able to get some help. You are a great friend to be so concerned and come seeking information.

You are in my thoughts,
Lindsey

 

[Mockingbird]

Does your friend like anime? Two of my favorite shows, Trigun, and Rurouni Kenshin, are about people who have done horrible things in the past, but then they changed and devoted their lives to helping people, to atone for the past. The message is that dying doesn't really help anyone, but by living they help a whole lot of people.

Eh, I guess it's a little stupid, bringing up cartoons at a time like this, but I guess my point is maybe you can convince your friend that living can be a lot more selfless than dying. Dying is kinda the easy way out, you know?

 

[Emily65Roses]

She's probably fine. We almost all cough up blood. I'll make it short and sweet for you:
This past February, I (for the very first time) coughed up pure blood. And I still have 70% of my lung function, so I'm in pretty good shape. It just happens.

Her past really shouldn't matter. I'm not sure I've ever said this here before or not, but when I was 17 I overdosed on pills too. Drank charcoal, cleaned myself out, stayed in a psych ward for a while, and I've been fine. I haven't had any major liver troubles or anything (and I had... I think 3-4 different meds, most of which were prescriptions). Any bleeding I had was directly related to the CF. I've had no long term problems because of the overdose. Just embarassment. <img src="i/expressions/face-icon-small-tongue.gif" border="0">

Oh and there are people that are a lot less deserving of organs that get them. Smokers, for instance? I smoked pot in high school, more than once. And I thoroughly intend on getting evaluated for a transplant once I get there. If she doesn't want one, because it's her <u>choice</u>, then I'd say support her. If she doesn't think she <i>deserves</i> one, then try and change her mind. Because that's crap. Kay then. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Lilith]

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

Does your friend like anime? Two of my favorite shows, Trigun, and Rurouni Kenshin, are about people who have done horrible things in the past, but then they changed and devoted their lives to helping people, to atone for the past. The message is that dying doesn't really help anyone, but by living they help a whole lot of people.



Eh, I guess it's a little stupid, bringing up cartoons at a time like this, but I guess my point is maybe you can convince your friend that living can be a lot more selfless than dying. Dying is kinda the easy way out, you know?</end quote></div>

Just to put in my 2 cents on that, I've seen both of those animes, and Trigun is a great example of your point, cartoon or not.

On to the topic at hand, I would be more concerned about your friend not eating than coughing up blood. Not that hemoptysis (sp) is anything to laugh at, but weight issues could be contributing to their lung problems. She needs to seriously watch her appetite leveles.

As far as not deserving a transplant, anyone who's been through the kind of hell that you're describing (or at least what I gather from your post) 'deserves' to be healthy and happy. I suggest having a long, hard (and maybe harsh) talk with your friend to bring her to her senses. We all need a swift kick in the pants now and then to remind us of what we have to live for despite it all. Good luck to you, and I hope your friend gets well soon!

 

[Landy]

If your friend(s) are minor children you could consider turning their parents in for neglect? That may sound harsh but it sounds as if they need some proper care & now.
Also, if they would happen to be hospitilized for CF by SRS, then they could get help with other areas of their lives such as drug counseling, regular counseling, etc. while in the hospital.

As for making them feel better, I'm sure you already have, but you could remind them that we all make mistakes....no one's perfect. Try to convince them to not beat themselves up so much over decisions they've made in the past.
Sorry I couldn't help more and it's good that you're such a good, concerned friend to them<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[thelizardqueen]

Just copying and pasting what I said in the teen section when you posted this question there:

First of all, welcome to the site. I'm sure that you'll find a lot of help and support on here. The fact that you're on here for your friend is great too, it just shows how much you love him/her. Ok - so the blood thing could be many things, and not necessarily the beginning of the end. Some of us cough up blood due to stress on our lungs i.e. coughing fits, broken vessels from repeat infections, etc. It could be caused by a med he/she is on like Pulmozyme, or TOBI, or Hypertonic Saline (pretty much any kind of inhaled med). It could also be caused by infection as well. Some of us women can cough up blood simply by laying down or having our periods (not sure if your friend is male or female). I should mention that while it is scary to see and handle, it gets easier with time. I'm 24 years old, and coughed up blood for the first time about 3 years ago. It was a very serious episode that lasted for 2 months. I would cough up cups and cups of blood for no reason. My doc eventually gave me a pulmonary embolization (where they put a coil in the vien that's bleeding in your lungs. Its a fairly easy procedure).

As for the transplant, there are some people on here who just decide for whatever personal reasons they have, that they do not want a transplant. And no amount of convincing will change their mind. You can offer advice, etc but in the end it is their decision. Heck, I don't even know if I will ever want a transplant yet. I would agree though that if your friend can't keep food down, isn't gaining weight, and is always sick, will they even be a good candidate for a transplant? According to what I know, you have to be at a certain weight, you have to be taking care of yourself and doing everything possible to maintain yourself for the list to get a transplant. I don't think they'll transplant someone that doesn't care about their health. I would just keep trying to encourage your friend to go to clinic (he/she does go to an accredited CF centre for treatment right?), to keep up with treatments, and to try and eat as much as possible. What does your friends doctor think of this?

I'd like to think that (and this is only if your friend isn't TOO far off) if he/she takes care of themselves, eats nutritious food, does the prescribed treatments, etc, that they can improve themselves. To how much I'm not sure, as you haven't stated what the FEV1 is, what lung function is like, how long has he/she been on the list. Is your friend even on the list yet?

All I can say is keep trying. There's only so much pushing you can do. After that its all dependent on your friend. Has your friend thought of counseling? Seeing a CF counselor would be a good step in order to talk to someone about her/his problems. I know a lot of us CFers go through anxiety and depression, and seeing someone about that would be a great step forward.

I hope that you get the answers you're looking for and need from here! My thoughts will be with you and your friend!

EDITED TO ADD: You may want to try posting this in the adult section. You may get a few more responses there.