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|Posted By : palmer1 - 4/6/2004 2:46 PM|
|im wondering why, if all these doctors are such experts, and these CF centers are so great...why arent psychosocial issues addressed more often? in the CF clinic I go to, they'll occasionally hand me some shabby pamphlet "CF and your Future", where for the first 100 of the 110 pages it talks about medical problems, complications, issues that may be present with cf patients as they get older...with one or two pages briefly mentioning the personal worries and issues we have: i.e. finding a mate, raising a family, having kids, having a positive outlook on future with the presence of a major chronic life-shortening illness, and numerous others *note:they are just mentioned, no suggestions about how to cope,except see a therapist)...last 8 or 9 pages being reserved for sources info. what good is that going to do for me? i mean, crap, these are the issues that keep me up at night, not "oh, gee, what shade of green is my mucus today?. If the placebo is such a strong influence on physical well-being, and the connection between positive mental attitude and physical well-being has been proven over and over again, than wouldnt it make sense that Dr.'s help patients in this respect also? instead of shying away from the tough questions and refering me to some therapist who knows nothing of the issues specific to CF? seems like a medical cop-out. everytime i go in to the cf clinic, im tempted to ask why theres such a big difference in the number of CF kids, vs the CF adults. (6 times as many kids)..im hesitant..|
Tell me Doc., are they dead? look, it may not be what you people want to hear, but these issues are critical to my mental -and obviously physical-well-being, and probably yours as well. why dont we all start by sharing our common worries in this regard, and if any one has any ideas on how to cope, ..lets start a forum.
Post Edited By Moderator (Admin) : 4/12/2005 1:19:59 PM (GMT-6)
|Posted By : Hopey's mom - 5/16/2004 9:58 PM|
|From what my daughter's CF center/doctors tell me, CF in adulthood is a fairly new field. CF used to be only a children's disease and the life expectancy was much shorter (5-teens).|
Personally, I think alot of doctors are learning right along with you. There are many issues (like those you've mentioned) that will face most of the CF pediatric population.
I'm sure if you've done research on the disease, you are aware that the average life expectancy is 33 years of age. There are those that fall above, below and at that age. Since pediatric medicine covers ages 0-18 years of age, that would account for the large age category for peds vs. adults.
I think teaming up with other adult CF patients would help you tremendously. I've been amazed with the CF Community and the caring and hope for a cure.
God bless you. I hope you find all the answers that you are seeking and peace in your life.
|Posted By : Citty - 6/13/2004 8:42 PM|
|I have had the same worries, and still have the worries. That is one of the reasons I am trying to join CF groups. To help find answers and how other people have coped with every day "normal" life activities. Like, when you go for job interviews, do you tell them upfront? do you wait until that ER visit comes up? |
Unfortunately as great as the doctor's are and as they try to help us as much as possible, they don't have all the answers to normal life adventures. CF adulthood, is a relatively new thing still, so we all just have to learn together. and help each other out
|Posted By : glsanchez - 7/8/2004 9:40 PM|
|I have run into the same problems if not worse in the fact that I can't get my docs to tell me hardly anything. If I ask about specific things I get a vague "your not that sick yet" or a "I'm sorry that this is happening to your body but it is just the way cf works" never any reason why or any advice on how to cope. I do not think this cf center is very good at patient relations. I have had docs in the past who were great at letting you know what to expect and explain what was going on. Unfortunatlly I am no longer in that state and am much sicker now and actually could use the direction. This center does not let the cfs talk or see each other. I really need another cf to talk to. Good luck finding this information and if you do please let me know about it.|
|Posted By : TheGirlFriend - 3/17/2005 12:23 PM|
The psychosocial issues related to living with a chronic illness affect both the people who actually have the illness and those who love them. I think that it is very important that coping skills be taught early to kids with CF, especially now that they are living longer lives and having to cope with adult issues on top of dealing with a life shortening illness.
Here is a list of copying skills that I wish my boyfriend had been taught early, instead of trying to learn now.
1) Positive self talk (I.E.: I am a bright and wonderful person, I bring good things to this world and good things come my way)
2) Relaxation techniques (deep breathing exercises, use of imagery and meditative/prayer activities)
3) Knowledge that asking for help is okay, seeking information from others is okay, and being proactive in health management is empowering.
4) Living a full and rich life is a right of all people including those with chronic disease. It is not cruel to let people love you just because you don't want them to have to 'watch you suffer and die'. Individuals will make their own choices about what they can/can't handle and adult relationships may cause heartbreak, but that is part of living a quality life no matter who you are.
5) More detailed information regarding reproduction, genetic counseling, communication skills, and knowledge about the grief process and ways to navigate it.
I hope that this information is helpful to you. There are numerous books and web sites that give more detailed information about some of the skills I mentioned above.
|Posted By : Anna Banana - 4/11/2005 10:50 PM|
Hi - "Thegirlfriend" i think you had great points - go you! Your boyfriend is a really REALLY lucky guy.
I'm new to the CF thing...I explained my weird situation on another post...the ultimate irony: I start med school, learn about genetic diseases, see odd similarities between myself and the CF cases we learned about, my husband and I get genetic testing in preparation to get pregnant, and I'm told "Oh, you were told you were asthmatic but actually you have two CF mutations..." Let me tell you - that was NOT a sentence I expected to hear, especially as a 25 year old almost doctor! BUT I wanted to reply to this one post as a medical student. In med school we are bombarded with hard sciences which most do fairly well in becasue it is what medical students are used to: black and white answers, and understanding that comes from sheer memorization. The classes that give people the hardest time are not the biochem or the pathology, but the behavioral science ones...where med students have to interact and understand their patients. I have never had this problem (biochem was quite a battle for me but i aced my social psych classes!!) and find it amusing how my scarilly smart friends who can practically recite the entire pharmacology text freak out when they have to bond with a patient. After seeing patients, the most typical thing most med students (and even our physician mentors) say is that we are not mind readers, and wish the patients would just tell us what they feel/need. So my point is this: doctors don't have all the answers by FAR. Docs are people too and we really dont get much training in bedside manner or what patients need psychosocially. Most docs have had their noses stuck in hard science books for so long that psychosocial issues don't even occur to them. Not that there are not good, caring physicians out there - there are (and I hope to be one!!) but a lot of docs really don't know what people need emotionally. SO if you have an idea, you really should not hesitate to suggest it to your doctor. Most docs are open to patients' thoughts and will welcome your imput. Most likely you will reap a benefit and so will others becasue your doctor may be able to help someone else through your idea. I'm not sure if this perspective will help anyone...I really see doctors differently now that I'm in medical school myself.
All the best to you all! - Anna
|Posted By : cfnana - 4/12/2005 12:06 AM|
|I'm 46 and haave been fortunate enough to have 2 children and now 1 grandaughter. When I was younger I used to ask the same questions, some gave me answers that ended up not being correct. I've out-lived the time frame they gave me. I just got my first adult CF Dr. about 6 or 7 years ago. I asked him the same questions but he refused to give me the answers I was seeking. I think that with all the new meds. and treatments along with better transplant success, they really don't know the answers. If you ever read some of the adult stories of people in their 50"s and even 60's it may encourage you. It's not easy, you have to live your life different than the average person. Sometimes you even get hurt because of it. My ex-husband left me about 10 years ago because of the financial costs and the fact he just couldn't handle having someone less than perfect. I feel it's his loss, I'm a good person who just happens to have a disease. I deal with it, I'm living aloneand sometimes probably shouldn't be. Sometimes I"m so sick I can't even fix myself something to eat. I've had 2 pics and 1 port and 5 hospitalizations in the past 14 months but I'm still here so I'm thankful for every day. My brother who was only 4 years older than me just passed away with cancer, he suffered alot. I'd rather have CF than to have what he had. I guess I've always felt that God gave me this because he knew I could handle it. You will too. My daughters fiance died in a car accident at 18, I'm still here and believe me I would have traded places with someone so young. I know it's hard but try to look at the positive things in yur life, someone is always worse off than we are. Maybe you think it's easy for me to say theese things because I am older but I was young at one time and had the same fears, I just refused to let them get the best of me. I was determined to prove the Dr's wrong. I am still refusing to believe that I won't live another 10 or 20 years. I know being in hospitals and around sick children all your life you've seen the poor kids strapped in wheelchairs, they can't feed themselvels, go to the bathroom themselves, play or do anything. Look, you are smart and have had a chance to do things some never get to do. I hope you try to look at life different. Every day they make new strides in the care for people with CF, our future is so much more promising than it used to be. Take care of yourself, do your treatments ( believe me there are some days I feel like rebelling and stop taking meds. and treatments, I get so tired of everything but I can't do that to my family and neither can you), I wish you the best, try not to worry so much about what may or may not happen in the time expected and enjoy every day you do have. God bless you|