Want to donate VEST

242wuu

New member
Hi All, Our son was diagnosed w/ CF in 05 at age 5. We have a Hill Rom Vest we would like to give to someone who would put it to good use! Our son no longer needs it...his CF team stopped his treatments because he is well....Crazy!! right? It's a great story, and I am happy to share if you all want to know, but this post is mainly to find a home for the Vest. It's pretty much new, it was Jared's 2nd one and he only used it a couple months at most. Perhaps a family of a child, or someone who has no insurance? If I get a lot of responses, do I flip a coin? Please respond here or contact me directly: Emai: find-a-cure@live.com Hm.
Thanks, Everyone- Angela Janmetty (242WUU)

<em>****Please refraign from posting phone numbers in public spaces. Removed by Administrator****</em>
 

RachelLynne

New member
This is just some advice for you...When I was 12 I went through the exact same thing As you.Dr said I was healthy and stopped my treatments.At the time, my family was in the process of paying off my vest after the insurance paid for half of it.Well we stopped paying and turned my vest in,and now it's 7 years later and my pfts are at 34% and Im fighting to get a vest because the insurance won't help because they already paid for one.I would hold on to it.You never know when you might need it.

Also-Im not really sure if you can just give your vest away due to bacteria and the risk of infection it might have to another Cfer.
 

cf4life

New member
Unless he got a lung transplant, I'd hold on to it. I'd also get a second opinion on stopping all treatments... In the least he is gonna get common colds etc and that would be a good time to pull it out to make sure to keep his lungs clear.
 

becabee

New member
Please do NOT give away your sons vest. CF does NOT GO AWAY. Yea, they may have healthy periods but that doesn't last forever. I can't beleive any CF doctor would tell you not to keep up on his treatments. I highly advise against it. Its great that you would want to help another parent, and there are many who's insurance won't cover the vest, but you may wind up without one for your son when he does need it again. I wish your son all the best.
 

elaneyday

New member
Hi, I hope you will do another posting with your story as to why Jared doesn't need the vest now. Was he misdiagnosed? I think we'll all be curious. I think it's great you want to help another family that may not have access to the vest but I hope you don't have a knucklehead doctor giving your bad advise. Praying you are doing the right thing for Jared!!!

Maggie
 

242wuu

New member
Wow. Thanks for all your advice and support. I wasn't expecting that and I seriously appreciate it. Ok, here is our story: Jared was sick all his life, colds, coughing, bronchitis, infections failure to put on weight, constipation.,his poops were like rabbit pellets. He loved salt so much, he drank pickle juice. He would barely be well enough for pre-school for one day, then home the rest of the week. It continued like that until he was 5 . His pediatrician sucked. I would take him in with green goo coming out his eyes and he wouldn't even give him antibiotics. I took him to an allergist to get tested for allergies, he was positive for dust and pollen. That, I was told, is not uncommon. We were sent for chest x-rays and his lungs were completely clouded/shadowed. The allergist put him on antibiotics for 1 month and the next X-rays showed 0 improvement. This Dr. Sent us for a sweat test which came back 63. I had no clue what a sweat test or CF was. This was all in Palm Springs, CA. Since Desert Hospital is not a credited CF center, we were sent to CHOC. (Children's Hospital of Orange County) . Their sweats came back also at 62 & 63. We chose Loma Linda for our CF Hospital, they are also CF and were 1 hr. from our home. He, at that time wasn't even on the BMI chart. His weight was 39lbs. He was immediately hospitalized for failure to thrive, a Tune-up, bronchoscope, tests, etc. he was there for two weeks and put on a 2 lbs. His treatments included: Pulmozine, xopenex, albu terror, Pulmozine, Creon, Nasonex, hypertonic saline, and two to three, 20min vest sessions, sometimes 4 a day. A couple more hospitalizations and a year later I got his weight up to 52lbs. Then we moved to CT. His new hospital became CCMC. (Connecticut Children's Medical Center. Three years later of pretty much roller coaster health, he was middle of the road enough to be eligible for a clinical study. It could have been Kalydico. He had to know his genetic mutations, so we were tested and none came back. Then we got the $3,000. Full screen ambry genetics test and no mutations. His Pulminologist sent him for a sweat test at Yale and it came back a 10! We were sent on 2 more separate sweat tests, because apparently your sweat test number doesnt change, I was told. It was a 10 & 11. He was pulled off all his treatments cold turkey, (talk about nerves) and we continent CF clinic for one more year and all his tests were normal. (pft's, chest X-rays, sputum cultures, fecal fat, and no harbored infections. It was then we wer told we didn't need to come anymore because there was nothing they could do for him! He was a healthy kid, no more CF. We believe in miracles. He sees aPediatrition when he gets sick. He gets allergies pretty bad out here all spring and even now still. Last week he weighed 95 lbs (75 percentile) and is 5' (95th percentile). He is 11 . So.......what do you all think???
 

JustDucky

New member
There has to be a reason why this kid was so sick besides allergies. Did they look into other reasons? Kids just don't FTT or get as sick as yours did without a good reason. Did they check his entire immunological panel to see if he was deficient in any of his antibodies? Perhaps CF was ruled out, but I wonder if the docs ran other tests on him for completeness sake. Honestly, I wouldn't get rid of his vest either until CF and /or other pulmonary diseases are ruled out. I think it is great that he is doing so well now, and I certainly hope he continues on that road but I would be wondering why he was so ill in the first place if it isn't CF.

Jenn 40 WCF
 

cf4life

New member
Was your old house tested for mold?, etc. Seems like the move changed something, leads me to believe there was something toxic in your old house. I am not sure that explains the sweat test result changes though.
 

Incomudrox

New member
You do not own the right to give away your Vest if the insurance company paid for it. They own it. You do NOT own it. Further more do not post your phone number on public websites.
 

cf4life

New member
You do not own the right to give away your Vest if the insurance company paid for it. They own it. You do NOT own it. Further more do not post your phone number on public websites.

I don't believe that is 100% true. After a certain point of time it is yours. I believe I received a letter in a mail saying mine was finished being paid for by insurance and is mine. It is not rented, like an oxygen concentrator is. I do believe you are correct in that while the insurance company is making payments on it, it is not owned by you yet.
In any case, you technically need a perscription to get one so by law you are not allowed to transfer it, but people do and I think it is a good gensture since some people don't have insurance or can't get them convered even though they qualify for one. I don't see a problem with it as long as the person gettting it knows the risk of bacteria transfer, etc and it is their responsibility to disinfect it. I know many people try to give them away after transplant.
 

lilmac7

New member
This is very interesting to say the least but like pretty much everyone here I would say keep it as you never know. As a youngster I had little lung involvement, mostly just stomach issues of having to take enzymes and all the effects of that like low body weight and such. I had a nebulizer but rarely used it cause I guess my parents were not informed or in disbelief as to how serious it was to keep up with those type of treatments even though as it seemed I was keeping up quite well with "normal" kids around me in activity wise. Looking back at it now however I do recall thinking at times with activity such as swimming or long runs I would get out of breath usually quicker than others but still close enough most of the time for me not to really complain - after all I knew no better. Needless to say when it started to affect me more I think it took more adjusting for me to then have to do all the treatments as it was not the norm for me from young. Nebs I didn't do much and certainly no form of physiotherapy other than riding/running, skating or whatever I did outside around the neighborhood or at school. It also came on me out of nowhere and like a bat out of hell as I hit puberty so be forewarned of that. I remember docs even questioning my CF in my childhood cause I seemed so healthy lung wise though my sweat tests showed it and I had the stomach issues. Looking back now I can't help but think if I was indeed made to adhere to some kind of treatments schedule of nebs and physio for my lung if my decline could've/would've been prolonged and possibly mean I would be allot healthier than I am now but such is life all I can do now is fight with all I have for where I'm at now and work all hell at not getting worse. Bottom line is you never know when these symptoms could come back and it would be a major help for clearing up another episode. Anyway back on topic of symptom free and negative sweat test, I too agree it must've had something to do with moving as from your story it would appear so. I've read allot lately on how microcurrents and magnetic fields can interfere with how cells function. I wonder if either there was something with your previous/current home that he reacts to for some reason that cause his body/cells to function/misfunction and give the CF like symtoms? Just a thought but from all I've come across online lately researching it's surely possible.
 

beautifulsoul

Super Moderator
You do not own the right to give away your Vest if the insurance company paid for it. They own it. You do NOT own it. Further more do not post your phone number on public websites.
I don't believe that is 100% true. After a certain point of time it is yours. I believe I received a letter in a mail saying mine was finished being paid for by insurance and is mine. It is not rented, like an oxygen concentrator is. I do believe you are correct in that while the insurance company is making payments on it, it is not owned by you yet. In any case, you technically need a perscription to get one so by law you are not allowed to transfer it, but people do and I think it is a good gensture since some people don't have insurance or can't get them convered even though they qualify for one. I don't see a problem with it as long as the person gettting it knows the risk of bacteria transfer, etc and it is their responsibility to disinfect it. I know many people try to give them away after transplant. </end quote>
I'm not an expert with insurance companies but I believe you are correct.
I had a transplant in 2007. My vest was sitting in a relative's house in storage years before my parents donated it. I'm assuming the person knew about chances of bacteria transfering.
 

242wuu

New member
RachelLyne, would you please share more? What were your sweat #'s when you were dx, what were they when you Dr. Discontinued your treatment, how was your health during those 7 yrs you were off treatment? How are you today? Cf doesnt go into remission, and for my son, it is no longer in his body. He was not further tested for immune issues. He was not mis diagnosed....I don't think 3 CF centers would misdiagnose him. His case is medically unexplainable. My son BELEIVEs with his whole heart that he had a miracle from God with his sudden healing....I share this with him, but I also don't want to be living on a pink cloud of denial......it's all pretty overwhelming.
 

elaneyday

New member
Angela,

Thanks for taking the time to share your story. Sounds like you have been through a great deal of ups and downs and I can tell by the postings, that the group here is very proctective and compassionate on Jared's behalf. I'm praying for the same miracle and so pleased to hear Jared has trust in God and is confident of His greatness. It's AMAZING, WONDERFUL and AWESOME that Jared doesn't have CF. I love hearing stories like this (I know another family with an intersting story that found out no-CF after years of treating it. We don't want more kids to join the CF club. Maybe we can't explain it all or even understand the medical technicalities of his illness but Praise God, it's not Cystic Fibrosis so celebrate the miracle!!!!! I'm thanking Him for your joy today.

Maggie
 

KAREN95355

New member
I too have a vest that I would like to donate. My son passed away 8 years ago from CF. He was 20yr. old. He never liked his vest, and never used it. It only has a couple of hours logged on it. It's been hanging in the closet for the past 10 years. I called the company and they told me that because it was a prescription item, it couldn't be donated. They wanted me to give it back to them. I guess so that they could resell it. The health insurance company doesn't want it. I hate to see this go to waste. I've been waiting to hear of someone local who might need it, but have yet to find anyone. Any suggestions?
~Karen~
 

Fran

New member
I'm in Australia and we don't have access to vests here :/ Not sure why...........

Hi there, yes we do have access to vests in Australia, we just have to pay for them, not available through insuarance or prescription.
 

242wuu

New member
Karen, I have heard from cf mom's around the globe who want the vest. Email me and I will give you their info.
 

muchlove

New member
KAREN95355 I sent you a message. Were you able to view it? I have sent a few private messages and it doesnt seem to be working. Does anybody know how to fix this? Im not too great at problem solving on computers!!
 
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