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    • #27014
      Colleen Steele
      Keymaster

      Hopefully you know what medications you are currently taking, the dosages and what they are for. But just as important is knowing what you have taken in the past and why they were stopped.

      It’s critical that you know what you are allergic to. Do you know what you can take in place of what you are allergic to?

      Don’t just rely on the doctor’s to know your medical history and your options. Taking care of your health should be a team effort. Be your best self-advocate.

      This week my column is about medication compliance and self-advocacy. I would love to hear about your experience and thoughts on the subject.

      Medication Compliance and Patient Advocacy Are Big Pills to Swallow

    • #27035
      Jen Cueva
      Moderator

      Well done, @colleensteele. Tell Cullen that he is so right, we must get over it and down the pills. I love his attitude, hehe.

      I take about 20 pills at this time. I do split them 3 times per day. But, I take the huge potassium alone and then the rest as a big gulp. This is usually my breakfast, not my PH doctor’s best idea, lol.

      That must be horrible to be allergic to nausea meds. I hope that one of them available he can take if needed.

      You make some huge points. Medication compliance is not only what we are taking now but in the past and also if we stopped a med and any. I usually try to remember the old meds, but now I find that I have to note them in my phone or somewhere, in case my hubby does not catch it. I think after 15 years with PH, he now almost knows the names of all of my pills. Some he gets mixed up as he remembers old names. This is why I update my med list in my wallet, on my desk, and in my important papers(hospital bag) every few months.

      Do you find that you update med lists often? Do you keep it all written down, or can you remember? I am sure with all of Cullen’s latest changes; it must have been a bit confusing. How are his headaches and BP?

      Thanks for sharing. I always learn something from your columns. You do a great job of sharing Cullen’s story and helping others.

    • #27044
      Colleen Steele
      Keymaster

      @jenc we have to keep his past meds in a binder because we forget too. He is on so many medications that there is just no way to keep track of what he use to take. The moment he is taken off of something it is out of sight – out of mind, except in the binder. It really is important to have that information on hand because I don’t know how many times a doctor has asked Cullen, “Have you ever taken….”.

      When we returned home after Cullen’s transplant we discovered his PH meds were still in his files. Nurses would go over his meds and we would be like, “NO! NO! He is no longer on any of that, please remove it from his charts.” For some reason his PH history lingered in his chart for a long time. Yes, it’s important to know that he had it but it is also important that he is treated for his new heart and lungs, not his old ones. Just another example that no matter how far back something goes, it’s best to keep that history somewhere in case it pops up again.

      His headaches are easing up and his BP continues at a happier number with the new meds. Thanks for asking.

    • #27062
      Jen Cueva
      Moderator

      I really do like the idea of a binder. I am a bit “old-school” but try to digitalize some notes. I still have a ton of notebooks, etc. I can only imagine how complicated that became after the transplant. I know in my charts, I often go over my meds with the MA, then later see on my patient portal some of those meds still exist.

      What you mention happened to me this year. My pain management doctor is in a group that also shares records with the first pulmonologist that I ever saw. I found so many old things there and had them remove them and update them. It was sad to see some of my old labs and how good my labs were. My kidneys were normal back then.

      This medication updating and compliance can take hours to keep track of. Cullen is fortunate to have such an organized and incredible mom!

    • #27124
      Alfred Gronroos
      Participant

      Hey from too hot Arizona. Pills are really a pain in the throat. I mix and match little and big and take them in three different mouth fulls. You know you read on most- take with a full glass of water – you’d drown if you took that much water. I keep a computerized list of all the prescribed meds and allergies. I keep it current cuz I want it current in case of hospitalation. I just started writing on the bottles what they are for. My wife was always asking what they are for? I had no idea, can’t spell them or pronounce them either. I have seen a pharmacist to go over them to ensure compatability. Side effects bother me with so many pills and so many ills. At times I feel I should quit all and see what happens- I really think I will not die and if I do so what.
      You ladies sound very organized, wish I was -I have stacks of paperwork scattered every where. Most of which is irrelavant. Hopefully I will get thru the mess someday. Oh ya – tomorrow. Be safe -Al Gronroos

    • #27135
      Colleen Steele
      Keymaster

      @alfredjohn trust me when I tell you I’m not as organized with other things in my life as I am with my son’s meds. If you can just keep an up to date list like you have been that is plenty sufficient. I know remembering the names of medications is no easy task. Many times I will pronounce something wrong and the nurse or doctor will correct me. If you can look at a pill and have a general idea of what you take it for, that helps too. It’s good that your wide has an interest in what you are taking. Make sure she knows where you keep an updated list in case she ever needs it to help advocate for you.

      Please, do not stop taking your meds! They are probably helping more than you know. I do sympathize with you though. I watch my son struggle with side-effects and the responsibility of taking his meds 2 times a day. Reach out any time. We are here to support you.

    • #27136
      Colleen Steele
      Keymaster

      @alfredjohn trust me when I tell you I’m not as organized with other things in my life as I am with my son’s meds. If you can just keep an up to date list like you have been that is plenty sufficient. I know remembering the names of medications is no easy task. Many times I will pronounce something wrong and the nurse or doctor will correct me. If you can look at a pill and have a general idea of what you take it for, that helps too. It’s good that your wide has an interest in what you are taking. Make sure she knows where you keep an updated list in case she ever needs it to help advocate for you.

      Please, do not stop taking your meds! They are probably helping more than you know. I do sympathize with you though. I watch my son struggle with side-effects and the responsibility of taking his meds 2 times a day. Reach out any time. We are here to support you.

    • #27146
      Jen Cueva
      Moderator

      Hi @alfredjohn, please do not stop taking your meds. I can empathize with you. So many meds cause side effects. Then we need meds to help those side effects, and ongoing. I, too at times feel like will this cycle ever ease up? I do n]know that my medications are helping and that it is something that I must do to keep going with PH.

      I am grateful that your wife knows your meds. I also write on the lids of my bottles for my hubby. I have an ongoing med list that I print out and keep on me, in my wallet, and at home.

      I am so unorganized when it comes to many things. For example, cleaning out my closet has been on my list for months. I did get it started, hehe.

      Take care and please keep on taking your meds.

      BTW, your drowning comment made me laugh. My doctors want fluid restriction but I take meds, 4 times per day, yeah, right.

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