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Thread: Anyone having trouble with their hospital

  1. #11
    Jimmya, so glad you found another center. I know what you mean about the whole environment being different. We had major battles time after time with the center we'd been with since diagnosis of my son at 3.5 months old (he's 13 yrs now). When we finally had been pushed enough and the same crap with advocates just sending a generic letter saying "thanks, everything's taken care of" but nothing was addressed...... I went for a 2nd opinion. We found another center that treats my child as a unique individual. They also treat him with respect and us as parents as well. Hope you get better treatment (medically and personally) for your family. Good for you to go out there and find something new.

  2. #12
    Jimya I completely understand what it is you're going through!!! I'm 18 years old now, but I have had a very rough life with CF. I generally get admitted every three months on my good years, other years are every 1-2 months... I do all my treatments and everything but some other genes obviously effect the severity of said CF. Anyway, I have had to fight tooth & nail to get people to listen and ended up leaving a couple hospitals due to their intolerance and BS. I finally have found a great hospital here in Fort Worth (Cook Children's/THR) where the CF care team actually listens to me and takes my recommendations! (instead of just telling me I'm wrong cause I haven't been to medical school- even though I've lived my whole life with the disease!) I could go on for days with you about the idiocy displayed by some of these "care" teams but I actually want to focus on a smaller point you made about CF patients interacting with one-another... I COMPLETELY AGREE WITH YOU!!! When I was younger I always felt left out at school and what-not because of my CF; not one person really understood me. Whenever I would meet another CF patient who would understand me, I would be so ecstatic to finally find someone I could connect with! Unfortunately, the medical world has decided to isolate and contain CF children as if were "lepers" like you said. My parents are always busy and could never do the whole home IV antibiotic program, so for me every admission was 2-3 weeks in the hospital. It was made worse ten-fold when these asinine isolation protocols were put into effect. I truly hate it.... it depressed me, it was really like torture honestly. On top of dealing with a terminable, chronic illness, I was also to be isolated and contained to one room for weeks on end. Not seeing people's faces, being trapped in a small hospital room, feeling like you are a detriment to society and so must be "contained" lest you possibly catch another bug or give someone else a new bug, is degrading and full of ... words can't describe it. Then being told I can't talk to the one group of people that I could relate to? That I couldn't even see them because of "what if" or "this could possibly happen" finally pushed me down the pit of depression. And you know what? You can give all the medicines and treatments in the world to heal a disease, but it'll do crap when the mind is in total disconnect and in a state of sullen decay. CF patients already have to deal with all the physical symptoms and these idiot paranoid doctors come along and tell us we can't congregate, we can't even leave the room because of "what ifs" and "negative possibilities." That throws our mental state into it's own illness.... If I didn't have my faith and God, I wouldn't have been able to take it. But back to my point: Anything is possible and some things are more likely to happen than others. But putting your kid in a bubble to keep them "safe" actually does the opposite. I've talked to many cystic fibrosis pulmonologists about this and they all thought the isolation protocols went over board. One said to me "we already tried the 'boy in the bubble' experiment and it didn't work out too well..." The question is would you rather live to your 30's able to live life and interact with people and get outside of your room, or would you like to live to your 60's but not be able to be exposed to other people, to people who can relate to you, to run around outside but instead be stuck in your room afraid to be "exposed" to possible infections? I'd rather live a short quality life with people than a long isolated life by myself. I agree with wearing masks around other kids with CF and washing your hands; pretty much all your basic hygiene everyone should have anyway. Being around another cfer isn't going to get you sick (unless you're kissing, directly coughing on one another or sleeping in a tent together for the night) and isolating us from every possible source of infection is impractical, impossible, and just plain stupid. If my mom smothered me and never let me play outside or in the grass for fear of me catching another infection, my life would be empty and meaningless. There are basic precautions that are common sense with CF, but isolating every source of infection, putting your children in a bubble and not allowing them to socialize and be with others like them is only hurting your kids. Truth is that CF kids need to be exposed to common infections, lest they get sick later in life when they can't fight said infection. Our bodies need to be exposed to common bacteria and infections in order to build up our immune system so that we can fight these and other illnesses in the future. If we completely isolate every CF kid, then they will die, just like the boy in the bubble who grew up and had no exposure to pathogens and so died when he finally left the bubble (yes it actually is a true medical experiment/story google it if you don't believe me.) For people who think I am wrong or don't know what i'm talking about, consider this: my father is a neonatologist (Premature baby doctor) who has lived his life with medicine and CF; I have 6 siblings, 4 of which have CF like me homozygous deltf508 in which I am the sickest and am number 4. Even though I'm sick with multi-drug resistant bacteria (pseudomonas A) all of my siblings have their OWN separate strain of bacteria which each have their own individual sensitivities and resistances. So a family of 7, 5 with CF, has lived together our whole lives. One has never been admitted except for overnight sinus surgery recovery and is 13. One was only admitted after reaching adulthood, and the other 2 admitted annually for routine antibiotics. We all have our own individual strain of bacteria, staph included. Not one of us have identical strains. At most my siblings strains are only resistant to two antibiotics and nothing else (the staph is sensitive to everything) yet my strain is only sensitive to 3 antibiotics. We lived in the same rooms, on bunkbeds, shared meals together, for pete's sake when we were younger and lazy we sometimes used the same nebcups (don't worry we don't anymore now that we are older and know better) and used the same tubing. We shared everything! Living in close quarters and never being isolated, yet all of us have our own strain of bacteria and only one of us (me) has severe CF- heck three of the kids don't even look like they have CF! Another thing I wanted to point out was something a doctor explained to me about bacterial strains: he said that the bacteria in my lungs have colonized the area, made it into there own fortress really. If another strain of bacteria is introduced or gets inside me, the likelyhood is it'll die out because it can't compete with the strain already present in my lungs. Think of it as a group of 10 rebels attacking a reinforced Fortress of 100 men head on- the likelyhood is the rebels will lose. I suppose I wanted to write all this to not only agree with the opening post, but to bring awareness to the ineffective and detrimental policy of isolation to CF patients. It doesn't work, it takes the kid away from socializing and makes them think they are a threat to others, it's demeaning, depressing, and it takes out the quality of life in the patient. I don't want to live in a bubble for 60 years!!! Give me 30 years, or even 20 years, if it means I give live a quality life with my family and friends. The healthcare teams for CF need to concentrate on not just prolonging a CFer's life, but also on allowing and helping to support a quality life. For parents that are afraid of their children getting sick, please don't isolate them. Take common sense precautions but let them live their life! There is the possibility that a meteor will strike them, or a car will smash into your house, or a freaking sinkhole will develop on your property. Don't let paranoia prevent your child from being happy and communicating with others like themselves. Isolating them will only destroy them on the inside and leave them alone in despair.... Don't allow that to happen! Let CFer's take some form of control in their lives and live a life of quality rather than just longevity!!!
    "In a time of Universal Deceit, telling the Truth is a Revolutionary Act."
    - George Orwell

    Brother: "Well I guess it's true: Great minds think alike!"
    Myself: "True... or Dumb minds think together!"

  3. #13
    Patti Rowland
    Quote Originally Posted by Jimmya View Post
    Actually the the hospital we have had such trouble with in the past is Texas Children's in Houston.

    Fast forward to today, we left there shortly after another incident that took place over the phone that concerned their refusal to refill his scripts. We are now at Hermann Children's in Houston. Things are much better here, do have issues with infection protocol on occasion but not nearly as much in the past! The staff here all try to the best of their ability to make my son as well as I as comfortable as possible. The environment/layout of this place is so pleasant (not clinical feeling)!
    My daughter and I also were disappointed with the cleanliness and practices at the hospital in Dallas. I finally took her home and administered the IV antibiotics at home. The home health care people came and trained me - it was easy with the new "fusion balls" they give you. Insurance covered everything. I would not let my daughter visit the other rooms but she and her "new" cf friends facebook chatted the whole time and still stay in touch. You have to be your childs advocate because the state of our healthcare is deplorable. When we first entered her hospital room there was dirty kleenex, pills and blood on the floor. I pointed it out and they acted annoyed that i noticed. When the nurse came in to remove her piic line he put on his gloves, then touched the bedrailing, the tv remote and other equipment, then began to approach her arm. I said, new gloves please! They are not on your hands to protect YOUR hands. I was incredulous. Then the non-english speaking lady who came into clean the room started with one rag on the hazmat box, the wastebasket in the bathroom, the toilet, the tub and last the sink and faucets. IN THAT ORDER! When i complained to her she said " You no like my work?" ahhh NO! I did not.
    That all being said, your child will look to you to set the mood. A lot of these conversations must take place out of earshot of your child or they will also become alarmed, angry and eventually even more depressed of their CF.

  4. #14
    Senior Member
    Join Date
    May 2010
    I am struggling with this same problem; Im almost 24 with CF. I was diagnosed at 6 months at the hospital I go to right now but the problems Im having are just getting worse and more frequent. My main doctor has just retired and Im stuck with idiots and mean people. I have reported a couple things but don't see much point in it anymore because no1 listens to me and its the doctors word over mine. Im so torn on what to do. I don't know what the whole process of changing hospitals would be, if its hard or if the original hospital can tell the new hospital bad things about you. I hope you find answers too!! Good Luck!!

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