This topic contains 24 replies, has 7 voices, and was last updated by  Jen Cueva 2 months, 3 weeks ago.

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  • #18091
     Colleen Steele 
    Keymaster

    I remember the 1st time I started the process of selecting a medical ID bracelet for my son. There are a lot of options out there and it was overwhelming deciding on what would be best for him. What was even more challenging was deciding what medical information was most important to go on the tag and how on earth was I going to fit it all? I tried many different kinds over the years but what I valued the most was the USB medical bracelet where I could really go into detail about my son’s medical history. I looped this onto his Flolan backpack but still had him wear the traditional medical ID bracelet on his wrist with all the important quick glance information that medical staff would need in an emergency.

    Here is a very thorough guide on selecting a medical bracelet and how to make the most use of the space available for your medical information. I think you will find it very helpful.

    https://www.medicalidfashions.com/beginners-medical-id-bracelets

  • #18107
     Jen Cueva 
    Participant

    Thanks for that information, Colleen. I know that many PHriends do have Medical ID brackets. I’ve looked at a few through the years, but honestly, never ordered one.

    I do think that they can be important to have, but I tend to think that since I’m on all oral meds, maybe I don’t need one. ( I know, I know )

    I’m wondering in the forums, how many have them or plan to get them in the future. I’m hoping that others will comment so I can see if I’m The only one who thinks this or not.

  • #18292
     Rayetta 
    Participant

    I ordered a medicalert bracelet last week. I just put two of my most important medical issues which were Congestive heart failure and pulmonary hypertension. I also put the three most critical medications I take. I chose the basic plan which allows whoever needs to, to call and get my allergies, medications and medical information. I wanted to be able to put an emergency contact with all of that, but I would have to go to another plan and there was quite a price jump. I can’t understand why something so important isn’t on the basic plan. It was $20 more to get the next plan that would allow me to do that. I didn’t think that it was worth paying an extra $20 to get the wandering information and the emergency contact. I should be getting my bracelet this upcoming week.

    • #18306
       Brittany Foster 
      Keymaster

      Hi Rayetta,
      Something that has really helped me a lot (because there is no way I can fit everything on a medical bracelet), is keeping a copy of a write up from my doctor’s office primary care office. She listed all of my conditions, a brief explanation of the rare conditions I have, all medications and dosage, and a list of all my major medical doctors that are specialists along with their contact info. I have made several copies of this and it helps to have on hand especially because it is coming straight from the doctor and can’t be argued with. Also it helps in emergencies when others may not know all my major history.

      • #18317
         Jen Cueva 
        Participant

        Great idea, Brittany, as you mention there are less likely questions when your lost is updated by a doctor.

        Ryaetta, I hope you will find your medical bracelet handy. I’ve heard they can get expensive. I hope that you update us when you receive it.

    • #18327
       Colleen Steele 
      Keymaster

      Rayetta, they sure can be expensive. My son was a kid when he had PH and had the habit of playing with it and then sometimes losing it. Brittany’s suggestions are what we also do. To be honest, since his transplant my son doesn’t wear a medical bracelet, but I think he should especially since when he’s not with me, he doesn’t have all the documentation that I keep in my purse and glove compartment of our car.

      I think as much information as you can carry without it being a hassle is wise. I’m glad to hear you have a bracelet on the way. The added sense of security will hopefully be worth the cost to you.

  • #18675
     Libby 
    Participant

    To me it’s a catch 22 with medical bracelets or something that goes in your wallet. Since the installation of my Melody Valve, my doctor gave me a plastic card (looks like a credit card) that apparently a medic/doctor could scan and get info, but since it’s in my wallet, I don’t forsee anyone being smart enough during an emergency to find my purse and dig for my wallet. so then I thought maybe a medical bracelet, but as others have said, which info do I put on it? I almost feel like my obvious open-heart surgery scar is plenty info enough 😛

    • #18681
       Brittany Foster 
      Keymaster

      I feel like it’s hard with CHD too especially because like PH you can’t just put PH without explaining the underlying condition/conditions that are contributing to it. I also can’t just put down my heart defects and expect that they know what they even are. It’s scary because you really have to have the right people advocating for you in these situations. I think it’s better to have an emergency contact listed that is someone who knows your medical needs or even the contact to your doctor that they can call immediately in case of emergency.

    • #18688
       Colleen Steele 
      Keymaster

      Libby, maybe this is a dumb suggestion but what if you had a bracelet that simply reads, “Check my wallet for medical card,” or something like that?

      • #18696
         Jen Cueva 
        Participant

        Great tip, Colleen! I wonder if anyone has one that reads that. Interesting .

      • #18701
         Kathleen Sheffer 
        Participant

        Last time I had a bracelet it came with a code or something to link to a webpage with more information on me. But I think you had to pay to stay in their system so there are definitely more economical solutions. I remember I tried getting cute bracelets with beads, but they kept breaking.

        I haven’t considered getting a bracelet post-transplant because nothing ever seems as emergent as it did while on intravenous medication. Pretty sure my old bracelets mainly said “DO NOT STOP PUMP” with a phone number to call Accredo. So glad I can be more relaxed now!

      • #18705
         Brittany Foster 
        Keymaster

        Kathleen,
        That must have been a huge relief. I feel like if I had a cental line in or a pump of some sort I would just be on edge all the time. They were actually debating on putting one in me soon for electrolytes and proper hydration because of all the throwing up I’ve been doing with eating etc. Just is definitely taking a toll on my body and its hydration and nutrients. More of like a PICC line I think would be placed, something more temporary hopefully! Not sure how often those need to be changed. I remember going home with a PICC line IV for medications after a bad infection I had as a kid. I would need medicine through it a few times a day and hydration/ potassium.

      • #18708
         Jen Cueva 
        Participant

        Oh, Kathleen, it must be ” freeing” and as you mention, you can relax now. I have had a few PICC/Midlines, for up to a month or so. I was so relieved to get those out and ” give it back” as I would say.

        Kudos to those on IV meds, who carry them and own it like nothing!

      • #18717
         Colleen Steele 
        Keymaster

        Ditto on what you said Kathleen! Cullen hasn’t worn one since transplant either. If he did I guess it would be something like, “Heart and lung transplant patient. Make sure I get my meds!” LOL. When he had PH there were a number of things on him most of the time, a medical bracelet, laminated information in his backpack, a USB drive with detailed information. If something happened to him when I wasn’t with him I felt like there was plenty of information on his person for medics to be able to help him. Not that I didn’t still worry.

      • #18724
         Jen Cueva 
        Participant

        Colleen, it sounds like Cullen was prepared for anything, I know he must appreciate all of mom’s love and support. I imagine the worry never stopped. Do you feel like you can ” relax” more now? I know Kathleen mentioned that, too.

        I know that a transplant comes with its own set of issues and concerns. Maybe you should write about the differences. I think others would benefit m who may be pre or post transplant.

      • #18704
         Brittany Foster 
        Keymaster

        Really good suggestion Colleen! I actually never thought of doing something like this. Mine would be like “Call my mom, she knows everything” LOL! But seriously though!

      • #18710
         Jen Cueva 
        Participant

        LOL Brittany, thanks for the laugh first thing this morning, hehe

        Your mom sounds like an amazing and fun woman.

        Mine would have to say, ” Call Boo” lol

      • #18715
         Brittany Foster 
        Keymaster

        Jen LOL! Imagine them seeing that message though!? hahahah! Now you have me laughing while drinking my coffee this morning and it burns my nose LOL thanks for that! But seriously, I can only picture their faces. I almost want a tattoo that says “call mom” right near my heart scar because that’s usually the first place people look. I have heard of people actually tattooing certain things about their medical conditions on their body In case of emergency and it’s pretty awesome what people come up with for designs ! One girl I know that has CHD actually has an anatomical tattoo of her heart and how all the vessels are. It’s AMAZING but something I wouldn’t do for myself, but still SUPER COOL!

      • #18718
         Colleen Steele 
        Keymaster

        LOL Brittany, “Call mom…” Yeah, my son could do the same. I’ve even had doctors look to me for guidance when he had PH.

  • #18727
     Colleen Steele 
    Keymaster

    Jen, for the most part I am more relaxed and definitely sleep better at night. However, I think I have some PTSD because I still find myself to always be on alert and listening for distress. Just can’t seem to shake that. My boys and my husband play on-line games and they get a little over excited at times and will let out a shout and it scares the crap out of me every time! If I don’t know they are playing a game I’ll go running to the other room to make sure they are ok. It’s crazy!

    • #18731
       Jen Cueva 
      Participant

      Oh, I bet the PTSD you deal with will always be with you. I think you relax in certain areas but you’re worried about different issues.

      I’m sure the PTSD affects your entire family. Do you feel it has made your family stronger and more closely knit? Maybe another topic for the forums or your column.

  • #18733
     Libby 
    Participant

    LOL not a bad suggestion Colleen 😀

  • #18734
     Kimberly 
    Participant

    Hi everyone I use RoadID it is recognized by all EMS, Fire, Police and Hospital staff. When you purchase a RoadID medical bracelet you can choose to enter all your medical into their system; then when emergency personnel see your bracelet they call RoadID and they are giving all your conditions, allergies, medical warnings, any info you provide they get. Then on your medical ID I list my name, my spouses number, a “do not give nitro” warning and a bible verse that helps me daily. When in an accident I don’t want them to think I had a heart attack or something and administer Nitro before contacting RoadID, since I’m on Sildenafil Nitro is a no no the two will react instantly and can cause death

    • #18739
       Brittany Foster 
      Keymaster

      Kimberly,
      This is really good information to know about the interactions between these two medications. Thank you for sharing that with us. I really like what you put on your medical bracelet, something to help the EMT in case of an emergency and also just something to remind you of your strength and to help you get through the day when you look at it. I have a few tattoos on my body that are visual reminders of what I have overcome, as well as the “real tattoos” aka my scars. I am glad that you received the information about the nitro interaction though because that is really important to know and to make other people aware of!

    • #18784
       Jen Cueva 
      Participant

      Great information, Kimberly. I, too am unable to take Nitro. I have still had hospital situations where they STILL want to I’ve me Nitro for chest pain.

      This happened just within the last few days. I was questioned again about this. The nurse said she needed to give it for chest pains. Myself and my hubby had the nurse call my PH doctor, who was not happy about this. He educated them once again and reminded them that the no Nitro was all over my hospital chart.That being said, please continue to be aware of what the hospital staff are giving you and advocate that you’re receiving the correct medications. I don’t know if a medical ID bracelet would have helped here, unfortunately.

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