PKU.com Community Discussion Forum Generation PKU Blood tests gone missing, and food never comes.

Viewing 13 posts - 1 through 13 (of 13 total)
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  • #5458
    Avatar of Maddy
    GotPKU
    Member

    Hiya everyone,
    Since before christmas, i have done 3 blood tests. 2 at home, and one in the hospital. it’s March and i havn’t gotten any results. I have phoned my diatician, she dosent know what hapeened to them, and i phoned the blood lab, they have no record of ever getting my blood. so basically, i am pricking my fingers squeezing blood out, droping it on a piece of paper, and all of that results in sore fingers and no results. is any of this happening to anyone else?
    Also every time i order food, maybe three products come (and it’s never the pie, (it’s allways flour and pasta, and that yucky powder pizza sauce) but i ordered stuff in december, it never came, i ordered in january or feburary, it has never come. i even have to go through a big mess to get my amino’s. Basically the only way i am getting them is by an amazing woman on the end of a phone line who is “working the system” by saying they were a backorder so that i get them in time, otherwise it would take months. and trust me, i have no longer than maybe less than a week.
    Does anyone else get really frustrated with the whole thing? Sometimes i think i should go on a no-protein diet, and when i do for a day or so, it’s not too different. just the food i eat is gross. I hate food, i dont get excited by eating yummy rare occations anymore, it is horrible. when i was little i used half my day allowence for half a baby pot of yougart, i loved it!!! that is the only enjoyable flavor i remember. i tryed doing the same in 7th grade, but i couldn’t it made me feel too sick, my body has become immune to milk products. ni have extreamly classical PKU, and i am very very fed up of it.

    #5460
    Avatar of Breanna
    BreaMarie91
    Member

    Aww, I’m sorry to hear your experiencing problems like this! That really must stink, have you thought of trying to order foods from different companies? Maybe it is just the company your ordering for, plus if things are coming in late I do have that to, it usually takes a month (two tops) so we order way in advance. We’ve never had them forget anything though, except once and then they mailed it to us when we called.
    I hope things get better, hang in there and if worse comes to worse and you don’t have any low protein foods, just try to eat things low in phe like fruits, veggies ect (which I know can be a pain ) nBrenna

    #5469
    Avatar of Maddy
    GotPKU
    Member

    God! us poor kids!!! if worst comes to worst resort to a vegtable!!! how bad does that suck!!! lol, why cant it be chocolate? lol, i wish!!!!

    #5497
    Avatar of Breanna
    BreaMarie91
    Member

    Lol, yeah I guess that would be nice if it was chocolate. But hey, atleast we don’t have something like diabetes! My biology teacher, a kid in my biology class and my great grandma all have diabetes. They have to check there blood all the time, and me hating needles and poking myself I’m glad I only have to do it once a month instead of like 6 or 7 times a day (that’s how many times my great grandmas has to check her blood). nBreanna

    #5509
    Avatar of Amy
    Amy1781
    Member

    Brenna, I have seen that you have ordered food from Cambrooke foods. Have you tried the bagels or those burgers that they have? My husband has tried the foods that the hospital provides and he said they are awful. Just curious if the foods from Cambrooke taste any better?

    #5519
    Avatar of Breanna
    BreaMarie91
    Member

    I liked the bagels alot, they only thing I didn’t like was it was alittle hard to soften them up unless you really heat them up. As for the camburgers, I love them! Me and my sister make sandwiches with them all the time, but I should warn you cambrooke is alittle costly. nBreanna

    #5551

    Actually that did happen to me once. it was the first time I took my bood and it go lost! i can only take my blood on one finger because the others don’t give enough blood. So I had to do that again and on the same finger. It hurt alot because I opened the scab again! Well I geuss it was just an accident.
    latta nKelly

    #5552
    Avatar of Breanna
    BreaMarie91
    Member

    Kelly- nYeah I’ve been trying to use the same finger so far, but my reason is because my dietitian told me if you use the same finger after awhile it will like get harder then the other fingers and won’t hurt as much. I don’t know if that’s true but I’m trying it.
    I haven’t had blood tests get lost but when I was like seven I accidentally cut my finger and did a blood test on my own. I was so proud of myself . So my mom sent it in for me, but they had to reject it because I got blood on all the wrong places. I was so upset nBreanna

    #5731
    Avatar of ottaway
    sarahsmith69
    Member

    In reply to gotpku. I started to do my own blood tests when it got increasing difficult to get an appointment at my local doctors surgery.I found that it was interferring with work to.I sent blood tests in and my dietician didnt have any record of my results and like yourself the lab didnt have any record.It is extremely frustrating when you are pricking your finger and taking blood and it isnt sent to the right place.The nurse at the doctors surgery did a very good job of chasing all the results up and after ringing 2 hospitals managed to get one result at least.So keep on at people some people cant be bothered looking and dont realise how important it is for you to have these results.I also think the post has alot to do with our results not getting to the correct place (there is alot of post that goes missing)not that, that is a comfort to us.

    #5736
    Avatar of Erin
    canolie
    Member

    I’m doing a school research project on PKU and I need to find out how much it would cost to have te disease. If anyone is willing to/can tell me prices of their food or doctors appointments, that would be really helpful. Thanks a lot!

    #5737
    Avatar of Erin
    canolie
    Member

    Wow! All of you are really dealing with this well. I was wondering if any of you have any tricks for how to keep self esteem up.

    #5817
    Avatar of Maddy
    GotPKU
    Member

    hah, oh my gosh, i freek out about it about it atleast once a month!!! the foods are SOOOOOO expensive, but i have GOOD medical ensurance so we dont have to pay for it. nFOR: n1 low pro box of flour, it costs $9.33 n1 box of low pro cookies, $12.77 n1 box of spagetti- $23.50
    now that iv;e been on this diet for 15 years, it is just really normal, and i have trouble thinking of any other way to manage my life. To me, not eating amino acids every mealtime, seems really really weird!!! too easy. BUT it is extreamly emotionally painful!!!

    #5819
    Avatar of Breanna
    BreaMarie91
    Member

    Wow! That’s really expensive! I guess I never realized how expensive our foods really are because in Wisconsin the state pays for alot of those foods and formula. nBreanna

Viewing 13 posts - 1 through 13 (of 13 total)
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