Another Phone Call

[Romona]

 
Great number!

[KT0930]

Fresenius came and picked up all my supplies and my cycler today!!!!      The driver was super nice, and it took him several trips to get all the boxes from the garage into his truck...he said that every trip he made, my smile got bigger and bigger. He even beeped his horn as he pulled out of our street. Celebrating with us. 

[kimcanada]

Oh thats wonderful!  I can only imagine how exciting that felt!

[okarol]

  Cool!

[Sluff]

Whole lot of habits changing has to feel good. Congratulations.

[kidney4traci]

Whoo Hoo!!!!   

[Joe Paul]

   Had to be a good time for sure!

[boxman55]

has to be a fabulous feeling I am very happy for you...Boxman

[Laurie]

That must have been a great feeling. I'm so happy for you 

[Wattle]

   Wooohoooo

[angela515]

I felt the same way when they got mine.. live it up.

[KT0930]

I keep looking at the corner in my bedroom where the cycler was and thinking, "wow, what am I going to do with all this space??" It was empty before, it'll probably remain that way, but what a great feeling!

My transplant coordinator is still in awe over my creatnine. I spoke to him today, and he said that .6 is better than probably 50% of the US population. Don't worry, I'm taking good care of this!

Also, still having the problems with diarrhea, so instead of lowering my dose of cell cept anymore than they already have, they're trying a different type that has some type of coating on it. Sorry, can't remember the name right now. It should get delivered tomorrow, so hopefully that'll take care of the problem. I've gotten to the point I'm scared to eat and hesitant to take my meds because I know both those things will set it off. (Not giving up either one, though).

[Joe Paul]

Sorry to hear of the diarrhea troubles, I hope they get you sorted out soon 

[KT0930]

Got my staples out today!   

Also, Mom and Dad rent a place in Florida for the month of February each year, and my son has a week off from school the 18th-22nd, and the doc ok'd us driving down there for that week.  He said that by then I should only have clinic twice a month, so if I come in on Monday for labs, then I should be ok until Tuesday a week later for clinic. Yippee!!! The place they rent is right on the beach, and it's been in the 70's and 80's there this week, so while not warm enough to swim, it'll be warm enough for shorts and walking on the beach. I can't wait!!!!

[kellyt]

Enjoy yourselves!  That sounds fun and relaxing!   

[MyssAnne]

YAY!!!!

You deserve a vacation!!! I'm so glad you get to get away, somewhere warm for a while!!

[kellyt]

KT, how long did/do you have to stay away from children post-transplant?  I mean children other than your own.  I thought I read that your son couldn't have his friend(s) in the house and I assumed it was a precaution for you.  Thanks!

[okarol]

  I hope you have a great time! I love the beach!

[kitkatz]

Have a wonderful time. I love the beach.

[KT0930]

KT, how long did/do you have to stay away from children post-transplant?  I mean children other than your own.  I thought I read that your son couldn't have his friend(s) in the house and I assumed it was a precaution for you.  Thanks!

We're trying to keep other kids out of the house for at least the first three months, though we haven't really discussed a time frame yet. We also are trying to keep my son off the school bus, out of the after school program, and out of homes with more than one kid for that same amount of time. We are allowing him to do all his other usual activities, though - sports, chess lessons, and Cub Scouts - just to keep things as "normal" as possible.

[kellyt]

So is that a precaution set in place by the transplant team or just yourself, being that you've been through this before?  I don't have any children in my home, but I have a 1 year-old granddaughter who I've never seen sick and a young niece and nephew who always seem to be sick (allergies).  I want to be able to tell my family how long the kiddos can expect to not see me if necessary.  I meet with my surgeon on Monday.  What questions should I have lined up for him?

Sorry to bombbard you with questions!    I'm really getting excited!  My brother is a blood match and a 3/6 antigen match.  As soon as I get activated on the list he will be admitted for the remainder of his testing.  The "committee" meets on Wednesday!

[ahamner]

Also, still having the problems with diarrhea, so instead of lowering my dose of cell cept anymore than they already have, they're trying a different type that has some type of coating on it. Sorry, can't remember the name right now. It should get delivered tomorrow, so hopefully that'll take care of the problem. I've gotten to the point I'm scared to eat and hesitant to take my meds because I know both those things will set it off. (Not giving up either one, though).

Are you taking Prograf?  Too much of that was the problem causing my diarrhea.  My prograf level was way too high.  After reducing the dosage it went away.

[KT0930]

So is that a precaution set in place by the transplant team or just yourself, being that you've been through this before? I don't have any children in my home, but I have a 1 year-old granddaughter who I've never seen sick and a young niece and nephew who always seem to be sick (allergies). I want to be able to tell my family how long the kiddos can expect to not see me if necessary. I meet with my surgeon on Monday. What questions should I have lined up for him?

Sorry to bombbard you with questions! I'm really getting excited! My brother is a blood match and a 3/6 antigen match. As soon as I get activated on the list he will be admitted for the remainder of his testing. The "committee" meets on Wednesday!

Kelly, we decided about the no kids rule, but it was based on a couple of guidelines from the team. They do not allow anyone under the age of 12 either onto the ward or into the clinic. I believe they use this age, since that's when most kids become aware of personal hygiene, etc. My concern about the grandkids, even the healthy one, is that they put their hands everywhere, then put them in their mouth, on your face, etc (at least that's how my son was at that age.). However, if you are very careful about handwashing and using anti-bacterial gel once they leave your house, you may be ok. This would definately be a question I would ask the surgeon. The questions I had for him really had to do with returning to normal activities like work, driving, etc, since every team I've dealt with has different guidelines for these things. Also ask about their medication protocols and learn what you can now about the meds.

Are you taking Prograf?  Too much of that was the problem causing my diarrhea.  My prograf level was way too high.  After reducing the dosage it went away.

I do take Prograf, along with about three or four other meds that, according to information available, all have the same possible side effect. I don't know why they went straight to adjusting the cell-cept, but I'm going to ask that next week if things aren't better. My prograf levels have ranged from 9.4 - 12.4, and I take 4 mg 2x/day. The doc said they like the level to be around 10, but they would like mine to be just a touch higher since this is my third transplant. It's kind of frustrating that my level bounces around so much, though (and I'm getting the labs drawn 12-13 hours after my last dose, just like they prescribe).

[KT0930]

My magnesium was alarmingly low last week, so they decided today that I'm probably not absorbing the pills for some reason. Stopped those (yay, four less pills per day!), and gave me mag by IV. I only got 100 mg, but it took nearly three hours to get it in, because it can burn the veins, so they have to go VERY slowly. He started me at 38 mg/hour, which I was able to tolerate, but he said a lot of people have to go a lot slower than that.

Because of that, though, we met with my coordinator for a few minutes, and he told us to go get some lunch until the mag came up from the pharmacy. I asked him about sitting in the cafeteria, and he said that after a month, I can begin going out in public again - restaurants, church, etc. Yay!!  We were really expecting that to be another two months, because no one had mentioned it to us. So we went down the street to a Mexican restaurant and had lunch - it was yummy! Then back to clinic.

Very long day today. We got to the clinic at about 7:45 am and were there until nearly 4:00 pm. I'm beat, but my husband then had to take my son to a basketball game that started at 8:00 and is 30 minutes from home! (All those people and especially kids, I'm going to wait another couple of days to go to that kind of thing!)

[okarol]

  Yay a mexican restaurant!
I am glad you got to go out!
I agree about minimizing contact with kids for awhile. My son's 7th grade class has 50% absent this week due to a nasty cold that turns into bronchitis.
Take care!