May 13, 2020 at 6:44 am #25083
Most of us with PH have a ton of medications to take. I am thankful that I only have oral medications. But, some manage oral, intravenous, subcutaneous, and inhaled treatments. PH alone has enough meds, but what if you add in other coexisting illnesses?
For years, I relied only on my iPhone alarms that went off 3 times per day. Several years ago, I started using a pillbox. This helps me because I now have 4 alarms and, I have more pills. I was so against this after my team and family suggested this after a tough hospitalization. But it helps.
I usually fill my box for 5-7 days at a time. This helps me not to scramble for bottles when my alarms go off. I also have a habit of snoozing or silencing my alarms and forgetting.
When I am going out, I have mini pillboxes that I take for the ones that I may need before I get back home. This works for me, what have y’all found that works for y’all? Do you just use the bottles?
May 13, 2020 at 9:32 am #25087ValerieParticipant
I also used to often use reminders in my mobile phone, then I got used to taking medication myself.
I have a simple pillbox that has seven compartments for each day of the week.
For the past few weeks, I’ve only been drinking sildenafil regularly. Accepting it is a kind of ritual. After Breakfast and after dinner, I go to the table out of habit and open the pillbox. But sometimes something distracts me (I often try to think about all the things in the world at once) and I forget to take sildenafil, which makes me terribly upset (because it jokes with the blood vessels of the brain, and these jokes do not make me laugh). The rest of the pills I’ve been taking lately are random because my stomach is very unhappy with all these medications right now. But I also used to put these medications in a pillbox and almost always remembered to take them in time.
Once I spread out some solid vitamins in the pillbox, and they began to bleed some juice and spoil other pills! Since then, I have been carefully putting new pills in the pillbox.
Very rarely do I have to take medications in liquid form (for example, I took l-carnitine, a bottle of this should be stored in the refrigerator). That’s when I could not do without phone notifications!
May 14, 2020 at 12:40 pm #25162Colleen SteeleKeymaster
Cullen, my husband and I all have our cells set to alarm when it’s time for Cullen’s meds. This was most necessary when he was younger but he rarely needs us to remind him anymore. I use a 7 day (morning and evening) pillbox for him with deep pockets because he takes a lot of medication. I refill it every Sunday night. When he is out and about he puts his pills for the day in one of those small see through plastic condiment containers. On the lid in sharpee he writes the day and time for taking. We found this works better than ziplock bags or even pill cases that can open or damage the contents.
@valeriekv I experienced the same nightmare of a pill bleeding liquid onto other pills. This particular pill is a specialty med that comes individually wrapped and the packaging is hard to open. I use a corn holder to open them. Don’t ask me what made me think of using it but it works great. I keep one with his medical equipment.
One day I accidentally poked the pill and didn’t realize it until my son went for meds that day and all his pills were stuck together. I still use the corn holder and place all the pills in one container, but am more cautious about it.
May 14, 2020 at 2:09 pm #25167Nancy McSweeneyParticipant
Yes, I use two pill boxes for the specialty medications that are in pill form: one for am and one for pm. A couple of medications are to be inhaled -one is once a day and the other is twice a day. Those I sometimes have trouble remembering if I have used them or not.
May 14, 2020 at 6:53 pm #25171
Hi @valerie, I can easily see how you get distracted and forget to take your Revatio. That is why I still set my phone alarms while using the pillbox. It has helped me a ton. I do get how you may think certain pills could “bleed” on others. I have not had that issue with anything yet.
I do take liquid fish oil and that stays in the fridge. That, I often forget on purpose, the taste and smell remind me of sardines. I would not suggest this one to anyone-hehe.
May 14, 2020 at 7:00 pm #25172
@colleensteele, I do not know what I would do without my phone alarms. I use mine for meds and calls. I also use a 7-day pillbox. But mine has 5 slots per day. I only use 4. I do like your idea of the container and the sharpie. I bought some tiny bill Ziploc-like bags last year for travel. Containers work better. I have a small med box in my backpack with my oxygen when I go out.
I am just picturing the corn holder -Hehe. Oops, you poking the pill was something easily that happens.
May 14, 2020 at 7:04 pm #25173
Hi @Nancy, could you maybe set med reminder alarms to do your inhaled meds? I know others who do that. I am happy to hear that your other 2 pillboxes are working for you. How are you doing this week?
May 14, 2020 at 7:51 pm #25178Nancy McSweeneyParticipant
Hi Jen – Believe it or not, I do not have a Smart Phone, only a TracPhone; not sure if you can set alarms on that or not. I try to do the morning inhalations before my shower and the evening ones before bed. That usually works. This week has been going relatively well. Taking the Uptravi an hour or two after taking the other pulmonary hypertension medications seems to be helping with the leg aches. Thanks for mentioning that.
May 15, 2020 at 4:29 am #25186Carol alexanderParticipant
I use my cell phone for reminders
May 15, 2020 at 7:16 pm #25198
@nancy-mcsweeney, it sounds like you have your routine down this week, anyway. I am happy that the pain has decreased some for you by taking the Uptravi separately.
As far as your phone, m,y Dad has a TracFone, and it has slams, I think it is LG. I am not sure. Depending on the brand, you should be able to google how to set alarms if you want to try this.
May 15, 2020 at 7:18 pm #25199
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