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ThePillTimer
Member
Username: Evangarrod

Post Number: 1
Registered: 09-2009
Posted on Wednesday, September 09, 2009 - 08:31 pm:   Edit Post Delete Post Print Post

I came across an article that illustrates how renal transplant patients specifically, sometimes do not remember to take their immunosuppressive medications. According to the article, the more complex the medication regimen the more likely an individual is to forget their doses. Also adherence rates tend to decrease as time goes on.

I was wondering what measures individuals who have undergone organ transplant procedures take in order to make sure they properly take their medications as prescribed. I was also wondering if there are individuals who struggle to manage their prescription medications.

Here is the article: http://www.renalandurologynews.com/medication-non-adherence-widespread/article/1 26665/
Happy2Bhere
Forum Leader
Username: Happy2bhere

Post Number: 2932
Registered: 02-2008
Posted on Wednesday, September 09, 2009 - 08:51 pm:   Edit Post Delete Post Print Post

Very, very informative article and a super reminder to take our meds on time each day.

Thanks for posting.

Ol' Bob
Texas Bob
http://www.cafepress.com/Happy2Bhere_2
Heart Transplant
performed Jan 28th 1991
http://www.heartandcoeur.com/story/bob_story.php
WendyLaski
Member
Username: Wendylaski

Post Number: 27
Registered: 08-2009
Posted on Wednesday, September 09, 2009 - 09:30 pm:   Edit Post Delete Post Print Post

I set my cell phone alarm. I always have it with me, so it really helps!

Wendy :-)
CiscoKidney07
Forum Leader
Username: Gregg

Post Number: 2555
Registered: 03-2008
Posted on Thursday, September 10, 2009 - 07:39 am:   Edit Post Delete Post Print Post

I always have my meds with me if I go anywhere. I have not missed by more than about ten minutes with my immunosuppressants since I first came home. I missed once then by a bunch. I do have an alarm, just in case. It is called a wife. God bless her.
Just do what the directions tell you. Take two tylenol and keep away from children
Hostess Rise'
Forum Leader
Username: Risa

Post Number: 10335
Registered: 05-2003
Posted on Wednesday, September 16, 2009 - 06:13 pm:   Edit Post Delete Post Print Post

Cisco- you always make me :-) with your comments.

About me, If I do not have some kind of reminder, I will not be able to take my meds on time. When I was young, I never missed a dose.

I like my Pill timer and it is always helps to be reminded by cell or by email.

My brain is always somewhere else when it is time. I do remember to take my meds but without a reminder system, I will not be able to take them on time.
Contact transplantbuddies@gmail.com

Cystic Fibrosis- dx at 2 years old
2nd double lung tx-05 JMH

Carl
Member
Username: Carlbullen

Post Number: 6
Registered: 01-2012
Posted on Monday, January 02, 2012 - 08:51 pm:   Edit Post Delete Post Print Post

Some of this non adherence, I'm sure, will just be simply because they realise the meds make them sick. Obviously important for the transplanted organs survival but often the rest of the body is what we see suffering - and this is something I find frustrating about my kidney doctors: they treat my kidney (via the numbers on the screen, my reported experience only matters partially) ans neglect the importance of the rest of me.
CiscoKidney07
Forum Leader
Username: Gregg

Post Number: 5211
Registered: 03-2008
Posted on Monday, January 02, 2012 - 09:40 pm:   Edit Post Delete Post Print Post

I don't believe that, necessarily. I have to tell you that sometimes, I just forget. I know what time I am supposed to take them, but I am human. At least the last time I looked, I was. What makes problems with meds bad and worse is that when I do forget, I have to time things to get back on track and sometimes, I forget then because it is not my usual time to take meds! Carl, maybe you need to address this with your doctors. I have not found this to be the case. I have a very good relationship with my post transplant coordinator and that has made a big difference for me.
If you are going through hell, keep going-Winston Churchill

Check out my daily fitness blog postings
sslgot5
Member
Username: Sslgot5

Post Number: 40
Registered: 10-2010
Posted on Monday, January 02, 2012 - 10:07 pm:   Edit Post Delete Post Print Post

I work full time and am constantly forgetting to take my meds (I forget at least once a day, and at least 3 x a week) . Not sure what effect this is having on my kidney. But unfortunately Cisco, there is truth to what Carl is saying.. Not every one is as fortunate as you. I have told my Transplant teams symptoms and concerns and All I keep hearing is.. This is the best combo of meds and its working so... Without too much regard to how I'm feeling. It seems like all they care about is to keep the kidney working.. which is understandable but unfortunate because the patient suffers.
Come celebrate with me that every day something has tried to kill me and failed.
CiscoKidney07
Forum Leader
Username: Gregg

Post Number: 5212
Registered: 03-2008
Posted on Tuesday, January 03, 2012 - 10:02 am:   Edit Post Delete Post Print Post

I apologize if I sound like I don't care, but is there something you could do in order to remember to take your meds on time? Maybe this would make a difference in the way you feel. A watch with an alarm? I believe that this could have a big effect on your kidney. I am not doubting what Carl is saying for a minute. I guess all that can be done at this point is to remember to take our meds on time. Another question is how do your meds make you feel that is different? Also, since you say that the nephrologist is not treating all of you, just how involved is your primary care phyiscian? If you want to treat all of you, it would be a good idea to get them involved. That way, if they see something that they do not agree with, they can talk to the nephrologist. Sorry, I am just trying to provide some sort of a solution to the problem. Good luck to you!
If you are going through hell, keep going-Winston Churchill

Check out my daily fitness blog postings
Carl
Member
Username: Carlbullen

Post Number: 10
Registered: 01-2012
Posted on Tuesday, January 03, 2012 - 06:12 pm:   Edit Post Delete Post Print Post

Hi Cisco,

I would like to have a relationship with two doctors that it sounds like you have. Just a question, what is a 'Primary Care Physician'? I'm from the UK and have never heard of it - I only see a nephrologist.

Sslgot, it sounds we have the same frustration. How long transplanted are you? One side of me wants to warn to adhere a bit more (the immune system DOES get better at attacking the transplant the more chance it gets - and if you read at all about how it works; it literally sends killer cells to destroy your kidney, liver, whatever it is - you'd think it would learn!), but totally understand that the drugs can leave you will so many side effects that reduce quality of life, ability to work, to have fun etc etc.

I'll PM you and we can chat if you like
CiscoKidney07
Forum Leader
Username: Gregg

Post Number: 5215
Registered: 03-2008
Posted on Wednesday, January 04, 2012 - 10:54 am:   Edit Post Delete Post Print Post

A Primary Care Physician is the doctor a person would see just for an annual checkup and that type of thing. A doctor you see if you have come down with something and you are seeking relief. I make sure that when I have blood draws, that all of my doctors know what is going on with me. The place that draws my blood sends copies of the results to all of my doctors--skin doctor, pcp, kidney doctor in St. Louis where I had my transplant and to the local nephrologist who I will see once every six months, so that I do not have to travel to St. Louis except every six months. (They alternate) If there are dental problems, my dentist would be in the loop also.
If you are going through hell, keep going-Winston Churchill

Check out my daily fitness blog postings
Terri
Member
Username: Terri

Post Number: 246
Registered: 09-2007
Posted on Tuesday, January 10, 2012 - 01:16 am:   Edit Post Delete Post Print Post

I always have my meds near me if I am at home and I always have a dose on me when I go somewhere that way I can take it on time.

I've been taking some sort of meds my whole life so it never was an issue of getting used to them or remembering; it was already part of my every day routine.

I had a lot of side effects but I never thought to not take them because of that. When the doc told me I would get sick or possibly die if I didn't take them,I took him at his word.
Terri Lynne - 20 Year Liver Transplant Survivor
"Whatever doesn't kill me had better start running!"
CiscoKidney07
Forum Leader
Username: Gregg

Post Number: 5231
Registered: 03-2008
Posted on Thursday, January 12, 2012 - 09:00 am:   Edit Post Delete Post Print Post

Yes, folks, that is one to remember! Your meds may make you feel lousy, but without them, you won't have to worry about them, but fear of how I would die would keep me from just giving up. I have too many things to live for anyway.
If you are going through hell, keep going-Winston Churchill

Check out my daily fitness blog postings
Terri
Member
Username: Terri

Post Number: 247
Registered: 09-2007
Posted on Thursday, January 12, 2012 - 03:47 pm:   Edit Post Delete Post Print Post

Yeah I know two people now who are in transplant failure because they did not take their meds like they were supposed to. Some centers wont re-list you for that either...something to think about.
Terri Lynne - 20 Year Liver Transplant Survivor
"Whatever doesn't kill me had better start running!"
gladstone7
Member
Username: Gladstone7

Post Number: 6
Registered: 02-2009
Posted on Tuesday, January 24, 2012 - 03:28 pm:   Edit Post Delete Post Print Post

try www.MyMedSchedule.com
It is free and allows you to create a schedule and set up text message reminders...you can update easily--and access from anywhere. You don't need smart phone --just the text capability--but you can also use the free apps with iPhone and Android.
Donna Brooten
CiscoKidney07
Forum Leader
Username: Gregg

Post Number: 5274
Registered: 03-2008
Posted on Tuesday, January 24, 2012 - 05:39 pm:   Edit Post Delete Post Print Post

Gladstone, although I do have a phone, I am technology challenged. I have to rely on the old fashioned ways.
If you are going through hell, keep going-Winston Churchill

Check out my daily fitness blog postings
Holly
Member
Username: Holly

Post Number: 549
Registered: 09-2007
Posted on Wednesday, January 25, 2012 - 08:34 pm:   Edit Post Delete Post Print Post

It was definetly more up front in my mind when I was first transplanted. I think some of these meds mess with our memory. I've turned to a watch with a multi timer since I take my meds at 5 different times during the day. i also have a days worth in my purse and one in my car. I'm amazed how many times I've actually had to use them because I forgot mine at home. Keeps me on schedule! I also have a 7 day pill box with 4 sections/day and then I have a single box for my night time meds. Helps keep me ahead on my refills to. And i only have to think once a week It does take me about 1/2 hour to fill em!
Holly Mulkerin
Medina Ohio
Heart transplant 1/28/09 I have a Happy Heart
Be kind. Remember that everyone you meet is fighting a hard battle. Harry Thompson

DenisePA
Member
Username: Denisepa

Post Number: 7
Registered: 02-2012
Posted on Saturday, June 02, 2012 - 12:56 pm:   Edit Post Delete Post Print Post

I made up some pill packs in small containers. They are in each car as well as in my purse & tote bag. I have missed my meds once in 9 months and will not let it happen again.

Another idea is to take the meds before of after some activity such as brushing your teeth, AM & PM. Alarm clock if necessary.. & your phone could be set to alarm you..

I use the 7 day pill box as well.. I can reorder meds on the internet & my drug supplier ships them out overnight at no added cost.

It's unlike any medication regime.. it's compliance & respect for the gift..
Heart Transplant 8.30.2012
Hahnemann Hosp,Phila,PA


Although we walk all the time, our walking is usually more like running. When we walk like that, we print anxiety and sorrow on the Earth. We have to walk in a way that we only print peace and serenity ...

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