? about post-transplant meds...

[kellyt]

Did any of you work out a system before having your transplant to get you prepaired for the post-transplant medication schedule?  Not necessarily the AMOUNT of meds you take, but the schedule in which you take them.  Do you wear a watch with an alarm?  Do you carry your meds with you at all times?  etc.

I'm just thinking ahead...   

[vandie]

I use my alarm on my cell.  I have a 7-day pill organizer with 3 sections for each day.  I carry an extra days' worth of meds in my purse in case of an emergency. 
This was all worked out post transplant.  I took so many pills pre transplant, it was an easy transition.

[okarol]

Jenna's transplant coordinator brought all the prescriptions, a 7 day pill case and a printed schedule to Jenna's hospital room the day of her release. She did a training session with her and went over each med as she filled the first couple of days dosages in the pill case. It was really helpful. There was enough meds given to her to last 30 days, and over the next couple of days we made contact with the pharmacy that was recommended by the hospital. They are down in San Diego, about 2 hours drive, but they are so efficient and reliable that we still use them. They ship via fedex and call to check on current dosages before they send out the monthly prescriptions.
Jenna sometimes needs reminding by me or her dad, but has gotten pretty good about refilling the pill box and taking her meds on schedule.

[Jill D.]

I use my alarm on my cell.  I have a 7-day pill organizer with 3 sections for each day.  I carry an extra days' worth of meds in my purse in case of an emergency. 
This was all worked out post transplant.  I took so many pills pre transplant, it was an easy transition.

I do the same thing  as Vandie - I use the alarm on my cell phone. I have a 7-day pill organizer and each day's "compartment" pops out of the organizer, so I can put it in my purse. I am now only taking meds at 8am and 8pm so it is soooo much easier than pretransplant when I had to take binders with each meal and many more meds than I do now.

[kellyt]

Thanks ya'll.  I, too, take a lot of meds now so when my time comes I should be able to make the transition.  However, my meds are currently  divided into a.m. and p.m. with nothing in between.  I'm going to start spreading them out - the ones  can anyway - to get use to taking pills morning, noon and night.  I just want to be prepaired.

I have a 7 day pill organizer, but where do you get one that the compartments "pop out"?

[angela515]

I am the same as vandie and Jill... I set my alarm on my cell phone, I take mine at 9am and 9pm. I also have a 7-day pill organizer where the compartments pop out.. mine is from Valcyte. It was part of my post-transplant gift bag from my transplant center. 

[kellyt]

Also, do they tell you what times or do you pick the time that best for you?  Example:  one of you said 8 a.m and 8 p.m. and Angela said 9 a.m. and 9 p.m.?  Does the time matter as long as you take them every day at the same time?

 

[okarol]

Also, do they tell you what times or do you pick the time that best for you?  Example:  one of you said 8 a.m and 8 p.m. and Angela said 9 a.m. and 9 p.m.?  Does the time matter as long as you take them every day at the same time?

 

For immunosuppressants it's every 12 hours - you choose when.
Jenna is 9:30 AM/PM

[angela515]

Well.. I don't know about anyone else... but here is why for me.

1) Prograf has to be taken 12 hours apart.

2) I chose 9 and 9, because when I go to get my drug levels done, I get them done at 8:30am, and your supposed to get your drug level blood drawn 30 minutes before your normal time you take your pills.

[Jill D.]

Yes - 12 hours apart.

[Roxy]

The transplant team chose my pill schedule. My Cyclosporin is twelve hours apart, for me its 9am and 9pm, then my cellcept is four times a day 9,1,6,9....but now since daylight savings i have adjusted them accordingly. I carry my pills plus a few extra everywhere I go, just because you never know what will come up and if you will get stuck somewhere and then can't take the pills ontime.

[Chris]

Thanks ya'll.  I, too, take a lot of meds now so when my time comes I should be able to make the transition.  However, my meds are currently  divided into a.m. and p.m. with nothing in between.  I'm going to start spreading them out - the ones  can anyway - to get use to taking pills morning, noon and night.  I just want to be prepaired.

I have a 7 day pill organizer, but where do you get one that the compartments "pop out"?

The first one I got came with the prescription service the hospital suggested. I then got another from the National Kidney Foundation for joining to be a member and it was a little larger. Both had  compartments for Morning, Noon, Dinner, and Bedtime and are able to be pulled out for each day. I did see them for sale on a pharmacy website that had different size containers. I have my cellphone reminder function set to go off and my alarm on my watch to remind me while I am in class. My schedule is 10 am, 10 pm but was told to take my blood test with the Prograf level within the 12 hour period. A little different from Angelas, but still works the same.

[Chris]

I just got another 4 container weekly pill dispenser today for free from the maker of Prograf for signing up to Transplant Experience at www.transplantexperience.com. The direct page for the info and to see the pill container and what info is sent and how to sign up is http://www.transplantexperience.com/900.php.

[livecam]

Did any of you work out a system before having your transplant to get you prepaired for the post-transplant medication schedule?  Not necessarily the AMOUNT of meds you take, but the schedule in which you take them.  Do you wear a watch with an alarm?  Do you carry your meds with you at all times?  etc.

I'm just thinking ahead...   

Nope because my transplant was cadaveric so there was no preplanning possible.  The only med that is time critical for me is Prograf and that is only because when bloodwork is done they like to sample you just before you take your next dose.  For me that works out to about 5:40AM and 5:40PM which also works well with getting ready in the morning and dinner time at night.  I just keep the bottles organized in my bathroom and draw from them unless I'm out and about somewhere.  I keep a 4-5 day supply of all meds with me "just in case".  I have them arranged in zip lock bags, one bag=a day's meds. They also work well for when I'm too lazy to run upstairs at the end of the day.

[tamara]

Livecam, thought I would let you know  :

Safely Storing Your Medications
Storing your medication correctly is very important; doing so will help protect its effectiveness and safety. Follow the tips, outlined below, for to keep your medication working its best, and to prevent potential dangerous situations.


Read storage instructions as soon as you get your medication. Certain medicines may have special storage instructions such as keeping them in the refrigerator).
Remove cotton plugs from all medication containers, they attract moisture.
Always keep all medications in their original containers. Original containers are labeled for correct use and will help prevent the possibility of taking the wrong medication or taking the wrong dose.
If you take multiple medications, it may be helpful to use a daily reminder pack, or pill box, however only fill it each day or each week.
Moisture, heat, and light may be bad for your medications. Unless instructed otherwise, keep them in a cool, dry place such as your bedroom.
Don’t store medication in the bathroom or kitchen, and don’t carry medication in your pocket
Ask your pharmacist if the pills or capsules you take can be placed side by side. Some chemicals in your medications may react when near others

Never store medications near a hazardous substance as they may be taken by mistake
Keep your storage area locked away from pets and children
Never take medicine that has changed color, has an unusual odor, or seems, in any way, suspicious
Always replace tops to medication containers after each use
Always discard expired medications
Ask your pharmacist for tips on the best way to get rid of medicines — do not throw them away in toilet or trash as this can pollute landfills, endanger animals, and contaminate ground water

[frankieb]

I just got another 4 container weekly pill dispenser today for free from the maker of Prograf for signing up to Transplant Experience at www.transplantexperience.com. The direct page for the info and to see the pill container and what info is sent and how to sign up is http://www.transplantexperience.com/900.php.

Hey Kelly,    Before long you'll have more pill organizers than you need. You'll be looking to re-gift them.     But seriously as was said in previous posts, you'll most probably get a goodie bag from your transplant coordinator the day of or before getting discharged from the hospital.  I'd tell you what you'll get but I don't want to spoil your surprise.   As for the time when to take your drugs, that was covered by Angela, after you get your bloods drawn.  This is because they take levels of your anti-rejection meds so if needed your dosage could be adjusted.   Good Luck.  Peace, 
                                                      frankieb    9 weeks post transplant today ... but who's counting?