I'm so angry with myself!

[Brianna!]

Hi everyone! It's been just about three months post transplant. And I haven't missed a dose of medicine until today. My mom is in Mexico. She left saturday and she'll be back tomorrow. She usually wakes me up for my meds. But I can do it myself. so I've been using my phone alarm to wake up to take my pills at nine. I didn't hear my alarm for some reason, and I woke up at 2:30, and when I saw the time, I started crying! I'm so upset and angry with myself! And nervous I'll lose this kidney. It's too late to take the morning dose, and I hate this feeling that I'm going a whole 12 hours without meds in my system. I go to an online school (it was easier with dialysis) so I don't have a normal sleep schedule. haha.

My creatine has been soo good! Holding at .5. I'm down to draws once a week. Every other week my doctor. I've been doing so good, I don't need to see the doctor every week! I'm so upset, even though I know it's not my fault I couldn't hear my alarm.

I guess I just needed to let this out, thanks for listening guys.

Oh and I go friday for my draws, what do you guys think will happen? Should I take my night pills a little early tonight?

[okarol]

Jenna's docs said if you miss a dose, and it's been less than 6 hours, go ahead and take it - if more than 6 hours just take the next dose at the regular time.
 

[YLGuy]

Brianna, while your mom is gone would you like one of us to call you to check up and make sure you are awake to take your meds?  You can PM me.  I would be more than happy to. (I know she comes back tomorrow so this is for now and the future)

[Brianna!]

Karol, it's been like 6 hours, so I can't take them now. But thank you! And I thought my doctors said 4 hours, but that seems a little too soon, now that I think about it.

YLGuy- yeah she is coming back tomorrow, but if she's gone in the future, that would be great if someone called me. Thank you so much! I was supposed to go to mexico with her, but it was too soon after transplant. But if she does go away, I will PM you. <3

My phone must have been siting funny, because a couple days ago, I didn't hear my grandma call me to make sure I took my meds or my alarm, but I was up at 9 anyway by chance so I didn't miss them. Of course yesterday, I told my grandma I had it under control, and that she didn't need to call me! Right when I do need someone.

Would I be feeling symptoms of rejection if I missed one dose? Like I know what the symptoms are, but do you think they would show up right away?

I want to tell my mom about this, but I can't call her until tomorrow. I can't text her either. I wanted to tell someone, so I told my cousin. I made him promise not to tell my grandma. she would get very upset with me. And I don't need that right now. I'm already upset with myself.

Thank you guys for your replies.
 

[okarol]

Awww don't worry, no one is perfect. I would not worry missing one dose. Next time try using a regular alarm clock and leave it across the room.
Jenna changed her schedule to noon and midnight and it fits better with her crazy wake/sleep patterns!

[RichardMEL]

Yeah Brianna... I can totally understand the panic you would have had waking up and thinking "oh no!" - have you actually talked to any of your transplant team about this? I am sure 1 miss in 6 months isn't a major disaster. If it was a regular thing, than yeah bad karma, but try not to panic too much - just a wake up call(pun intended) to not rely on just one alarm. Get an alarm clock with a REALLY LOUD AND ANNOYING buzzer.. that might help..

best of luck but try and stay calm. I am sure all will be OK. Probably the increased BP from the stress you're putting yourself through worrying about this (again, I do not blame you one iota!) is probably doing your transplant more harm than missing that one dose.

 

(btw great to hear your creat is so low and you are doing well post-tx!!! We love that!!!  )

[RichardMEL]

btw I would tell your mom. I know you feel gulty and horrible, but it's life ... and not telling her would make you feel even worse in the long run. It's not like you're saying "too hell with my meds I don't need 'em" or something. stuff happens...

[natnnnat]

You'll probably be fine.  Gregory misses a dose from time to time.  You are only human.  Missing doses often, not caring, missing several doses in a row, these things would be a worry.  Gregory new a guy once who wouldn't take his tablets on a Sunday.  He said that was his day off.  Stupid, huh?  And yet bizarrely (and I'm sure he is some kind of special case), that fellow's transplant lasted a long long time (don't try this at home).  So you will probably be fine having accidentally missed one dose in 6 months.  Hope you feel better about the situation soon.  Be kind to yourself, you're doing so well.

[kellyt]

The way it was explained to me in my "medication class" is that Prograf can be taken every 24 hours, but by taking it twice a day your levels are better controlled.  Don't worry.  Karol is right about the times.

Every night when I go to bed I put my next day bill box and a bottle water on my side table so that when my alarm goes off I can just roll over and take my morning dose and go back to bed.  I take my evening dose at 9 p.m.   Once I woke up at about 12:30 a.m. and immediately didn't remember taking my 9 p.m. dose (I though I had fallen asleep and didn't hear the alarm).  I reached over and grabbed my pill box and shook it.  When I heard the pills I freaked out and unloaded the evening dose and took them again - half asleep.  When I realized that I "double dosed" I freaked out.  Some here might remember my posts about it.  I called my on-call transplant nurse right then and woke her up.     And she did a double check for me.  They said not to worry and take my regular dose at 9 a.m.  My concern was that my Prograf level would be too high and that I would freak the kidney out.  It's always something for us.

Now...turn your phone alarm volume UP!!!      

[jbeany]

I think the leeway time must vary from hospital to hospital.  Mine said 4 hours after was the cut-off, too.  Really, the odds that one missed dose in months is going to damage the kidney is crazy small.  It's frustrating, of course, when you've been working so hard at getting it right, but certainly not likely to cause any harm.  Just think of the number of times they adjusted your doses and then didn't recheck levels for a week or two.  If one off dose could do that much damage, they'd have you recheck labs every day every time they tweaked the doses.

I've only missed one, too.  I have my dual alarm watch set, and another alarm in the house set and my clock radio set, and if I think there's any chance at all the power might go out, then I set the alarm on my cell as well.

Don't take pills early - just go back to your regular schedule.  Otherwise, you will be off schedule even further for the lab draws.

And readjust your pill schedule to something that works better for your sleep schedule!  I'm on 9:40 and 9:40 right now, edging back every couple of days in 20 minute increments to 8 and 8 because my schedule is changing and I will have to be up earlier in a few weeks.  As long as you take them 12 hours apart, it doesn't matter what time it is.

[Brianna!]

I didn't take my pills early, last night. Maybe 5 minutes, but not like an hour. I figured it would mess me up even more.

Richard-I'm going to tell my mom, just not my grandma. She would freak out, and probably take me to the emergency room! She always took me to the emergency room when I was little, for every little thing. she's very cautious like that. I would call my mom now, but since she's in Mexico, her phone won't work. She's getting home tonight though. And it's only been 3 months (on the 11th) not 6. And my bp's been low lately. It's not even that low in the numbers (110/over something) but I feel it, like dizzy and sweating a little. So if my BP went a little up from this stress, it probably won't be that bad!

natnnat- Some guy didn't take his meds on sunday? How long did his kidney last!? That's crazy.

jbeany-I didn't even think about it like that, how they adjust the doses so often, and they don't check the levels for like a week. That makes me feel a lot better. Thank you!

kellyt- I didn't know that about the prograf. Thanks!

Karol- noon and midnight! Wow, that seems like it might work for me, but some nights I do get really tired like at 8 and i have to force myself to stay awake until 9 to take my meds.

Some days I want to go to bed before nine. And other days I stay up all night and crash at like 11. So I don't really know what i should do about my med schedule. Like last night I went to bed at 10pm and woke up at 5am. And the other day, I fell asleep at 8am.

I didn't call my transplant center, since I figured it wasn't too big of a deal. I just was upset with myself, and freaked out at first. I will let them know tomorrow though. They always ask if I missed a dose and when I took my meds the night before.

I'm very glad I woke up at 5am today, only because I won't miss my alarm again!

Thanks guys for reassuring me. <3

[cariad]

Oh, Brianna! The stories I could tell you about being a teenager charged with taking transplant drugs....

I would say there is zero chance that this will harm the transplant. I missed a dose around the 3-month mark as well, and I was ticked off at myself, too, but not worried in the least.

Growing up, I had a cavalier attitude toward meds in the extreme, and my transplant lasted 34 years. (Not that I suggest anyone try my methods, that would be dangerous.)

You sound like you are doing marvelously.

[kellyt]

Yes, if your Prograf level is too high or too low for an extended period of time you risk losing your kidney.  Or at the very lease damaging it.

[Brianna!]

Well I had my appointment today. They didn't even really say anything when I told them what happened. But my creatine  is .5. so it's all good!

Two more once a week appointments, and then they said it'll be once a month until the one year mark, then I don't know how often after that. Which I thought was weird, but I don't mind. The doctor's appointments always go fast, since I haven't been having any problems.

[galvo]

Good news.

[kellyt]

.5 is amazing!        I've been hovering at 1.2.  The lowest I got was .9.  Congrats on the good news!!!   

[RichardMEL]

Ah the strength of the young!! Well done Brianna!! 0.5 that's awesome!!!! WOO HOO!!!

 

[okarol]

  WooHooooooo!!

[paris]

Glad to hear the appt went well.