I hate CF and I want to complain (long tirade ensuing)

[wanderlost]

I am going to complain for a moment.

How often does everyone go to the CF clinic?

I have some issues about the Cf foundation's guidlelines as I don't feel that they are individualized at all and rather treat us all as if our illness is exactly the same.

For example, I go the the clinic 2x a year. I used to go once a year but since my son was born I decided to be a little more proactive with my disease. My doc agrees that 2x a year is sufficient. However, because the Cf foundations requirements are 4x a year, the clinic continually makes appointments for me that I have to then cancel and argue with the nurses about. I know what the guidlesines are and I am choosing not to follow them with the agreement of my physician.

Furthermore, why, at 28 years old must I be measured each time I go? I am not growing any taller. I haven't since I was about 13. I am NOt a pediatric patient, I am an adult. Finally I am no longer forced to see the dietician. Luckily my doc is a very resonable person, and can plainly see that at 5'2 120 lbs I am not in any need for help gaining or keeping weight. As well all my blood levels are within normal limits.

Finally, the social workers have visited me numerous times during my visits must not bother to read my chart, as once they gave me some information about planning for my death which angered me because I am not sick, I don't plan on being sick, and forgive me for sticking my head in the sand, I don't want tot hink about dying just yet.
Another time, after my son was born, they gave the the book "Go Lungs Go." If you are familier with this book, it has a lot of great information about CF, but why on earth would I read it to my child when I don't wear a mask to go out, don't have a nebulizer, don't do PT, have never been in the hospital, and I don't have a port-o-cath?

In short, as I am a school teacher and am very familiar with "individualized education plans", and I wish that my clinic and/or the foundation could come up with a plan for more individualized Cf care. We are not all the same. i know that our meds differ and that that much is individual, but my requirements and what I need as a whole are not the same as someone elses. I don't like being treated as through I am "sick" with CF as I am clearly not.

It might take away some of the anger I have at this disease if I were treated with the manner in which I have it - as an annoying thing that with care is under control but is not the essence of who I am.

I apologize for this long tirade, but I am hoping others can relate or perhaps offer suggestions as to how better to deal with all of this. I am so tired of CF.

 

[anonymous]

I am sorry that you are having a rough time right now; but I am glad that you are doing so well health wise. I really don't know what to say because I feel that many times the medical personnel because of legalities and many people being "sue" happy that they tend to go a bit overboard to cover all bases & "cover your butt". I can say this because I am in the medical profession and this is what they push at us these days. Due to the fact that it is recommended that a CFer go to clinic atleast 4x/year this is what your health care team has to advocate and prove they are doing so by setting up the appointments then they document you as refusing or being "no call - no show" to once again "cover their butt". Some people (not you necessarily) would want to sue their doctor if they only went 1-2 times a year and something was overlooked.

As far as the measurements of your height all that I can say is that since the age of 37 I have definitely started shrinking. I have osteoporosis related to my CF and my back has started to curve. The curvature was not noticeable at first but they caught height discrepancies and I started getting bone density scans done and started medication. So once again it is an attempt to be pro-active and look at all basis and potentially catch something before it gets out of hand or is untreatable by the time it is caught.


Good Luck,
Penny

 

[julie]

Patients with CF are continually measured because CFers are at risk for osteoperosis-it makes sense to me. Have you ever had a dexa scan, do you know if you have osteopenia? If not, then measuring you would be a way to see if you are "shrinking" due to osteoperosis.

The CFF guidelines are just that, guidelines. If you are having such problems with the nurses I would "sicc" your doctor on them. If the communication is there between you and your doctor and it is ok with him, I can't understand why he wouild let his nurses harass you like that. I would definately say something to the doctor about it-but that's just me.

I would recommend that as a teacher who is very familiar with individual plans, you might know better than anyone else (especially in your area) how to construct such a plan to distribute and present to your doctors office. I don't have CF but I a SO sick of people who don't know about CF and are just ignorant. Therefore, I am putting together a letter to present to about 6 different TV stations trying to get some air time regarding the disease. If you aren't part of the solution, then by default you are part of the problem.

I realize you are just venting, but I just wanted to point out some things that might help.

 

[anonymous]

She mentioned that the CFF has guidelines of 4X a year, do they help subsidize the CF Clinics?
And as someone else mentioned, they are just being proactive. I remember when I was doing just fine with little to no lung involvement years ago, I didn't feel that going to the doctor at all was important, I guess I was in a type of denial. Kind of the old, don't talk about it and it will go away attitude.
Now I wish I would have gone to the doctor when I got colds if nothing else, because in those years of getting minimal/no care, scar tissue built up and I can never reclaim that lung space that is filled up with scar tissue.
Measuring your height, as patronizing as it seems, takes a whole 10 seconds and you're right, usually there is no change but if there ever is, then some bone scans would probably follow. As for the dietician, social worker, etc visiting, I think that is just protocol for the CF Clinics. The planning for your death thing is probably uncalled for, let's be real, I think we'll all know when that time is drawing close and let tomorrow worry about tomorrow is my view regarding death.
The little "Go Lungs Go" book is kind of cute, I read it to my daughter after I told her I had CF and just told her "Mommy doesn't have to do all of this, does she?" but someday when I do, then she'll know it's normal for CF.
I'm glad that you're doing so well and that you realize how fortunate you are. Have you talked to your doctor about a more individualized care regimen rather than the cookie cutter regimen they use for everyone else?
Tired of CF too<img src="i/expressions/rose.gif" border="0">

 

[wanderlost]

Thank you all for your thoughts. I actually had no idea about the osteoporosis thing. Being that my health is good, I do tend to be in denial about my CF. It is so easy to pretend that it isn't there and yet every clinic visit reminds me that it is. But I don't plan on letting this thing beat me. I don't plan on "when I get sick." Maybe I should, but I refuse to. Just joining this site was a real step for me because for so long I have removed myself from everything CF related, feeling that "I am not like the rest of them." Coming here has started to show me the humanity behind the disease, not just the sickness of the disease. thank you all.

 

[julie]

Wanderlost, I take it (because you weren't aware of the osteoperosis) that you haven't ever had a dexa scan. I would encourage you to, #1 because you are a woman and us women are more prone to thinning bones, and then #2, because CFers are prone to it. I can't believe that the nurses would just measure your height and not explain why, or ask if you knew why they were doing it. It seems like there is a huge disconnect there.

I can't understand first hand "coming to terms" but my husband struggles with admiting his CF and interacting with others who have CF because he hopes and prays that he will live a long, healthy normal life.... so what you are posting is what my husband and I discuss every day. I feel like I am more open about his CF (talking about it on this site, researching medical stuff, infertility, treatments, progress, emotional side of it....) than he is and it's sad to me, and somewhat frustrating. So, from a non-firsthand point of view, I can understand what you are saying.

I applaud you for coming on this site, hey a step forward is a step forward all the same. Welcome!

 

[anonymous]

you sound just like me only i am in denial about my 7 yr old son. he also is very well and was only diagnosed 18 monthes ago. does anyone know how old the oldest person with cf is ?

 

[JazzysMom]

OH Wander......reading your posts is like looking into my history. I never thought I needed a CF forum because I wasnt like "those people". Yes I was diagnosed with CF, but I didnt live a CF life. I didnt have to do my treatments etc. It didnt affect my ability to function. Oh yeah occaisionally I would get admitted, but once I was home things went back to normal. Until 5 years ago. Then I realize I might have to incoorperate a little of the CF into my routine so I started taking my oral meds more regularly. Then in 2002 I was admitted & had to come home on IV. This was a major reality check for me. Such a thing couldnt be happening. That meant I was losing control & CF was winning. In 2003 after a family vacation I was admitted. Now things started sucking because I couldnt do the normal family thing without CF interferring. Then this year I was admitted twice. I came home on IV & Oxygen......I came home better, but not good. I really thought my world was coming to an end. CF had won or so I thought. I realize now that CF is not who I am, but a big part of what I am. I can live a "normal" life with a few adjustments to make it easier. I am like the "others". Yet I am still Melissa. I can still live life without the CF rearing its head. Always....no. Much of my problems are just from getting older in general, much is from denial & not taking care of myself as I should have over the years & much is just going to happen no matter what. I get upset some days & laugh it off others. Complaining for me doesnt do anything except for make me feel worse about something I cant get rid of at this point. So I choose to make the best of things one day at a time!

 

[julie]

a woman in her upper 70's died earlier this year, I am thinking 74, 76 or so.

 

[S]

I don't even go to clinic, just my cf doc. He's been recognized as one of the top doctor's in the U.S for pulmonary and critical care and what he says goes for me.

 

[lungsformary]

I'm 42 and have gone to these clinics the majority of my life. I equate them to a cattle call. I've never been told to make 4 appointments per year. Tell them NO. If you don't need the social worker or the dietician, tell them NO. Every patient has the right to be involved in their care!

I have had many of these same issues and sometimes they don't listen until you get upset with them. I do understand that some of the routine items (diet, bloodwork, height, etc.) are good to do 1x year to catch something early. All of the information is logged with the national foundation and is very useful in the future treatment and understanding of cf.

You may be in the very best health for a long time, but cf is a progressive disease. I did not have any problems until I was 35 and now I'm hoping for a transplant soon. I wish I had done more airway clearance long ago. It snuck up on me and my lungs are horrible now.

If they have not done the DNA testing to tell which mutant you have, I'd do it and find out more about your specific type.

Good luck with your future!!!

 

[anonymous]

How lucky for you to be in good health, Wanderlost... but how unfortunate for you to take that good health, and a proactive healthcare team that clearly is concerned with keeping your health where it stands, for granted.

Some of us with cystic fibrosis do not have the luxury of being in daily denial of our disease. Many of us do have nebulizers, do have ports, do treatments daily and are profoundly affected on a day to day basis.

Those of us who are in this boat are hopefully more thankful of the first class treatment CF clinics, doctors and nurses strive so hard to provide for us.

 

[Emily65Roses]

Hey I'm in that boat. I have a port, a nebulizer, several handfuls of meds, daily treatments, etc. But I can't say that I wouldn't happily deny it if I was able, like wanderlost. *shrug* No point in calling her down for it.

 

[anonymous]

I've been seen at a lot of centers over the years, and I've found the approach at all of them to be quite "individualized." Isn't there a general understanding that CF affects each person differently? Maybe you're just at the wrong place.

Q

 

[wanderlost]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>How lucky for you to be in good health, Wanderlost... but how unfortunate for you to take that good health, and a proactive healthcare team that clearly is concerned with keeping your health where it stands, for granted.



Some of us with cystic fibrosis do not have the luxury of being in daily denial of our disease. Many of us do have nebulizers, do have ports, do treatments daily and are profoundly affected on a day to day basis.



Those of us who are in this boat are hopefully more thankful of the first class treatment CF clinics, doctors and nurses strive so hard to provide for us.<hr></blockquote>


I agree with you, Anonymous, that I do have the luxury of my daily denial of this disease, and quite honestly, I hope I always can. I do not think that the clinic here gives inadequate care to those who need it, nor do I believe that those who need it do not appreciate it. I too appreciate the care I am given, but I would like to be treated as healthy person living with a disease versus as if I am as ill as some of those more afflicted. If it were opposite and the ill were treated just like the healthy, would that be aququate care? There is also a lot that I don't know about CF, which is why I am here. It is time to start learning. For example, why I am measured when I go to the clinic was kindly explained to me in this post. And everyone that I have encounted here has been helpful and kind and ahas lready taught me a lot. As well, it seems that honesty about CF is appreciated and accepted here. I should hope you might understand that I want to talk about how this affects me, good, bad or "ungrateful," and be heard as well as learn from everryone else's experiences.

ps. Thanks Emliy65Roses <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

My name is Destiny and I am a 26 yr. old female.
I just want to say. You may be venting but The reason why you are suppose to go to the clinic every 3 months is because you PFT's need to stay a certain level if they continually go down you may not be able to get them back up. It sounds to me like you want to be treated more like you are better than everyone esle who has CF or you want to avoid the fact that you do have it.
You should be greatful that your CF isn't bad and go to your appointments to make sure you will be around for along time to take care of your child. Sounds to me like maybe you just don't think you want to take the time out of your day to make sure your health stays at that good range.
Trust me if you don't make time to watch your CF you may run out of time to be around your kids.
I am just being honest. I have CF and My brother died when he was 19 from CF, He donated his lungs to research when he died, so they could be closer to finding a cure.

 

[wanderlost]

I am not going to start an argument here and if I have "offended" anyone by being honest about how I feel about this disease, then I apologize.

Destiny, if you'd read through this thread you might see that I admit there is a lot I do not know about Cf and that I do hate having it and would love to pretend that it isn't there.

I do not want to go to the clinic 4x a year as I have to take off work and everything else just to be told over and over that I am doing fine, keep up the good health work, etc. - but if my PFTs did start going down I would go more often to deal with that. I am not a fool about my own health.


But again, I thank everyone here who has taken the time and patience to hear what a "healthy," yet annoyed about CF, person has to say.

 

[wanderlost]

[No message]

 

[wanderlost]

As I was driving home from work I was thinking a lot about this posting and how very unkind it might have seemed. I am lucky and I should be more grateful for that. I don't mean to discredit any of the CF centers that care for people or to come across as trying to be "better" than others. I am proud that I have been lucky enough to be healthy and I think that for a long time I wanted to make myself removed from CF as much as I could. SOme of that sentiment still remains. But in coming to this cite and in starting to more openly admit to having CF, I can feel my acknowledgement and admission towards the disease growing. If my post was unkind, I am sorry. There are so many people who are sick and need the care that I seem to want to shun and I realize that I should be more grateful for the luck that I have in living with this thing. .

 

[Emily65Roses]

I didn't think it was unkind. You'll be where we all are eventually, so for the time being you're enjoying the health you have. I'd do exactly the same thing if I could.