I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: KT0930 on January 09, 2008, 02:25:36 PM
-
Hey all, I got a phone call last night that there was a 6 out of 6 antigen match kidney available for me. I'm currently sitting in the hospital, waiting for the results of the cross-match. They should have that in about two hours, and if all is good, I'll be in surgery hopefully sometime tonight. :yahoo;
That's as excited as I'm going to get until I'm in the recovery room, though. I went through this a month ago and it didn't pan out, but maybe things will be different this time around. Keep me and the donor's family in your prayers. I'll let you know more as soon as I can. Thanks, guys!
Katie
-
Wishing you the very best!!
-
Katie,
:yahoo; I'll pray real hard. Good Luck and let us know when you feel up to it. Hopefully, you'll get your life back. :cuddle;
-
good luck hope its perfect!!
-
OOOOOH This is so exciting!!!!
Good Luck! :wine;
Kim :canadaflag;
-
:yahoo;
Keeping fingers crossed.
-
Yes, I remember what happened last month, but it's still hard not to be excited !! I'll be pulling for you all the way. Best of luck. :thumbup; :cuddle;
-
:yahoo;
-
:bandance; Yeah Katie! I have my eyes, fingers and toes crossed for you. :cuddle;
-
Hoping and Praying that this is the call.
Good Luck :grouphug;
-
Praying for you and wishing for the best.
-
:bandance; :bandance; :bandance;
I'm looking forward to reading your successful transplant story.
-
Best of luck.
-
Keep us informed KT. Best of luck :2thumbsup; :cuddle;
-
Wow :yahoo; Great news Katie , hope it works out for you.
-
Fingers and toes are crossed! :2thumbsup; I hope this is the night for you, KT! May God Bless You!
-
OMG, Yeah!!! I truly hope this is it, woohooo! What a great New Year's gift this would be! :bandance;
-
good luck hope this time is your turn :yahoo;
-
good luck kt. sending prayers your way. :grouphug;
-
YEA! Good luck and a speedy recovery!!!!
Beth
-
*crossing fingers* Sending good thoughts and prayers your way KT, good luck and Godspeed :cuddle;
-
Sending only the best of thoughts your way. Good luck!
-
Beings that she didn't reply yet, are we assuming that this was her kidney???
-
Good luck hope it works out. :2thumbsup;
-
All crossables crossed for you KT!!! I'm hoping that no news is the very best news :yahoo;
-
How exciting! :yahoo; :bandance; :yahoo; Goodluck!
-
Wow, Katie! Hope to hear great news............. :) !
kelli
-
:popcorn; Oh I hope she got a transplant!
Thinking of you Katie! :cuddle;
-
Hoping this kidney worked out, best wishes :thumbup;
-
:bandance;
Hope this is the one!
-
The suspense is killing me. :o
-
I'm with you Romona. I've thought about katie all day today. I wish someone would let us know. I HATE WAITING.
-
I hope by now she is peeing all over the place :P ;)
-
I'll bet she is peeing! :bandance;
-
I hope by now she is peeing all over the place :P ;)
Ya-hooooo!
-
I hope by now she is peeing all over the place :P ;)
Yes bring on the bag with the golden stuff ;)
Thinkin of ya
Tamara xxx ooo :cuddle; :grouphug; :cuddle; :waving; :grouphug;
-
I am hoping all is going great now and your recovering from a new transplant and a working kidney is doing a great job right now. :grouphug; :cuddle;
-
Great way to start the new year! We are so glad for you. I think we are all hoping that no news is good news. We love you!!
-
:popcorn; Pins and needles......
-
:wine; Best wishes.
-
I hope all is going well and her creatinine is going through the floor. Best of luck and Happy New Year!
Oh, yes and prayers to the doner and his/her family.
-
No news must be good news Katie and the kidney was a go!!!! :bandance;
I hope all is going smoothly and you are able to update us soon. Thinking of you. :cuddle;
-
sorry I did not write sooner my laptop pooped out. I GOT THE KIDNEY! WOO HOO! I'm doing this on my phone. I'll tell more when i have a computer again.
-
Wow this is cool news. Waiting for more info...Boxman
-
:bandance; :bandance; :bandance;
OMG!!! Wonderful news! Congratulations!
Looking forward to hearing more about it; in the meantime, just rest and take good care of yourself. We're all so happy for you. :grouphug;
-
How WONDERFUL!!! Congrats!!!!
Beth
-
Katie--I am so excited for you. Take care, get rest and enjoy peeing!! We love you and will keep you in our prayers. First one in 2008 for our IHD family!! Who is next?
-
Happy New Year to you!!!!!!!! Congratulations! :bandance; :bandance; :clap; :clap; :2thumbsup; :2thumbsup;
-
WOOOHOOOO this is great news! Soooo happy for you! Rest up and let us know how you are doing. :bandance; :beer1;
-
:yahoo; Woooo Yeah baby! So very happy for you Katie! :yahoo;
-
Congratulations!!!!! Hope this kidney lasts for a very long time.
-
:yahoo; Congratulations. What a great way to start 2008. I can't wait to hear all about it. :grouphug;
-
:yahoo; :bandance; OMG I'm so happy for you what a way to start 2008. Who will be next :bow;
-
:yahoo; :yahoo; :yahoo; I KNEW IT. Congratulations Katie. Can't wait to hear all about it. :grouphug;
-
Yessssssss!!!!
Is this the first of the New Year? :clap; :clap; :clap;
-
Yay!!!! The longer it went without hearing from you the more likely it seemed that you had really got it this time. But now that we know for sure I can stop holding my breathe and start cheering :yahoo; :yahoo; :yahoo; Tell us **everything**!
-
Congratulations!! So glad to hear you got it. :thumbup;
-
Yahoo!!!!! I hope you're feeling great and can tell us about it soon! :bandance; :bandance; :bandance;
-
So, so happy to hear this wonderful news! :bestwishes; :bestwishes;
I hope you are feeling well, and peeing like crazy!!!!
Anne :thumbup; :thumbup; :thumbup; :yahoo; :yahoo; :yahoo;
-
congratulations katie. :bandance; i'm glad to hear that you got your kidney. get lots of rest and keep on peeing. :beer1;
-
Great News !!! :clap; :yahoo; :yahoo; :thumbup; :2thumbsup; :bandance; :bandance;
-
:yahoo; Great News Katie :yahoo;
-
Congrats!!!!!!!!!!!!!!!!!!!!!! :yahoo; :yahoo;
-
YOU GO GIRL!!! :yahoo; What a way to start the New Year, i hope we have twice as many transplants this year than we did last year :2thumbsup; Gonna add you to our list now :) :) Godspeeeeeed :wine; :wine;
-
OH I had that feeling! Congratulations Kate, I look forward to hearing all about it!
:bestwishes; :wine; :2thumbsup; :clap; :beer1; :grouphug; :popcorn;
Kim
-
hey katie,
marvellous news,good luck with it all, hope you get plenty years of good service.
have a drink or 10 for those who can't drink a great deal.
:yahoo; :beer1; :beer1; :yahoo; :2thumbsup; :bandance; :bandance;
-
:yahoo; :yahoo; Wooohooooo Katie. I am doing a Happy Dance down here for you :bandance; :bandance;
What a wonderful way to start the year! Wishing you a speedy smooth recovery. Wooohoooooo :cuddle; :cuddle;
:waving; Sally
-
Congratulations ! :yahoo; :clap; :yahoo; :bandance; :bandance; :bandance; :waving; :cuddle;
-
Creatnine was 1.1 today! This was an absolutely PERFECT match! Talking about sending me home tomorrow or Monday.
-
Creatnine was 1.1 today! This was an absolutely PERFECT match! Talking about sending me home tomorrow or Monday.
Wow!!! So so happy to see that you and your new kidney are doing so well!
:2thumbsup; :2thumbsup; :2thumbsup; :2thumbsup; :2thumbsup; :2thumbsup;
Hope you are making a lot of liquid gold!!!!
Anne
-
I am AMAZED that you would be sent home so soon. You would still have to go in everyday for your meds though wouldn't you?
-
1.1 OMG Katie that's AWSOME :bandance; :bandance;
-
That's just excellent! I can't wait to hear your entire story!
-
:thumbup; Good for you Katie. Rest, walk, drink a lot and pee. Hope to hear from you soon.
-
Awesome numbers Katie!
Take it easy when you get home!
-
Jenna stayed 3 days in the hospital - they say the nasty hospital germs are the reason to leave as soon as you're able!
Great to hear your creatinine is so good Katie! :bandance;
-
That is terrific news KT. :) Hope your feeling well too :2thumbsup;
-
wow! I am so happy for you!! :2thumbsup;
-
:yahoo;
So happy for you Katie!!!!!!!!! Please keep us posted!!! :2thumbsup;
Lori/Indiana
-
:clap; :2thumbsup; :yahoo; :bandance; and all that stuff. i'm so glad to hear everything is going so well. what a wonderful way to start the new year.
-
Hurray! :yahoo; :yahoo; :yahoo; :bestwishes; :bestwishes; :bandance; :bandance; :bandance;
-
:bandance; :bandance; Yeaaaaa!!!! Congrats!!!!!! :bandance; :bandance;
-
Awesome!!!!!!! Good Luck!
Love, Mimi
-
**Warning, LONG!**
Hey guys, thanks for all the great thoughts and congrats! I'm home, and a little stiff from that awful bed in the hospital, but had a white pizza for dinner tonight (well, 2 slices, anyway) and am sipping a caffeine free diet coke (physician assistant's orders, phos is LOW!). Ok, here's the story as best I can tell it.
At about 9:30 pm on Tuesday night, my HUSBAND'S cell phone rang, and it was a transplant coordinator I had never spoken to. Anyway, she said that they had been offered a kidney in Oklahoma, and if they decided to take it, I was the first one up for it on their list. She said they were scheduled to go into recover the organs around midnight (Oklahoma time), and she would call me as soon as they knew something. I made myself go to sleep around 11:00, and woke up around 5:00, wondering why I hadn't heard anything. I dozed for about another hour and a half before she called again, just to say she still didn't know anything. She told me to go about my usual morning routine, and even go on into work, because obviously nothing was happening fast.
So I got to work a little late, because OF COURSE my cycler screwed up that night and I didn't finish until late, then I had to pack my bag, "just in case", etc, etc. I got into work about an hour late, but had called one of the managers the night before and explained what was going on, so they were ok with it. The transplant coordinator called me back around 9:45 a.m. and told me to plan on getting to the hospital around noon. That was the perfect amount of time to get my work done and catch up the guy who's going to be covering my job for the next three months.
Got to the hospital at noon, and it was hurry up and wait, because the final cross-match can take up to three hours or more to get the results back, and they weren't even expecting the kidney to get to Atlanta until around 2:00 or 3:00. Thankfully, I had a fabulous nurse who loved hanging out with me and my husband and kept us up-to-date on absolutely any news he got.
Finally at 7:30, the nurse came in and said we had to drain my PD fluid because we were going to surgery. In the confusion, she didn't have the proper Fresenius-to-Baxter adapter, and the surgeon, being a typical surgeon, was impatient, and said that he'd take care of it in the OR. I was on a gurney and on my way to pre-op at 7:35. I even called my son on my way to pre-op. (He was running around my parents' house, yelling "She's getting a kidney!!!" at the top of his lungs. I'm not sure, but I think he was excited!)
I was wheeled into the OR at about 8:00, but had not yet been given anything for sleeping, so I looked over in the corner, and there's a guy in full surgical garb, cutting "extra" stuff off MY KIDNEY! Wow, I even got to see it, that was COOL!
As best as I understand it, the surgery started right around 9:00 p.m., and ended around 1:00 a.m. I stayed in post-op for a couple of hours and got back to my room about 3:00 a.m. I spent most of that day sleeping, thanks to getting morphine injections in my IV once an hour, but then they figured out that I wasn't using my button at all and cut out the once an hour stuff, so I still had the button, but could only get it that way. I actually did not use much. I think I used three or four shots after they turned it off, and that was for coughing, doing the breathing exercises, and moving to a different position in bed. I haven't had anything for pain since probably Thursday night or maybe Friday morning.
The surgeon was ready for me to go home yesterday, but my Hematorcrit was only 7.9 and my Hemoglobin was 23, and the marker to indicate that I'll produce more of those (allucrit) was normal, so they wanted to give me another intravenous iron treatment. Today the allucrit was up, so they were happy to send me home on my pre-transplant dose of epogen (thankfully I still have enough left!).
Right now I'm on Prograf, cell-cept, prednisone, Nexium, valcyte (I've had CMV in the past), Dapsone (to prevent bacterial infections), aspirin, a multi-vitamin and K Phos.
I feel great, my thoughts are clear, I'm remembering things in conversations that I wouldn't have a week ago, and I get to sleep in my own bed tonight without being connected to a dialysis machine. LIFE IS GOOD!
Thanks everyone for all the support and encouragement and friendship I've found here. Y'all are a great group, and I'm here to stay, so don't think you'll get rid of me that easily! Here's to many more transplants in 2008 for the IHD family!!!
-
I am so happy for you! Each time I read someone's transplant story I feel I am reliving mine. :)
You are not a large amount of drugs. Make sure you rest. :grouphug;
-
Katie, this is so amazing. Thank you for sharing everything with us. It is incredible how well you are doing. You are such an inspiration to all of us who are waiting. Get lots of rest and enjoy your new kidney. We love you! :grouphug;
-
Wow Katie, you are one tough cookie. reading your story just makes me so very happy for you. Please take care and keep us posted...Boxman
-
I am just thrilled for you!! :wine; here to continued health!!! :bestwishes;
-
wow sorry this is late, but this is fabulous news.!!!
Congratulations!! i am so happy for you.
Hope you feel better every day.
Amanda
xxoo
-
:thumbup; Good for you Katie. Rest, walk, drink a lot and pee. Hope to hear from you soon.
eew! I read too fast and read " Rest, walk, drink a lot of pee". yuk! ;)
What an amazing story! I'm so glad you're home and doing well. How exciting......... :2thumbsup;
-
Amazingly good news. Can't believe you are already home. I am so happy for you, and I'll bet your family is ecstatic.
-
Welcome Home KT, thank you for sharing your story with us, you just keep getting all the rest you need so you can feel back to 100% in no time ;) Looking forward to hearing more positive updates :clap;
-
:2thumbsup; That's awesome news! Glad to hear you are doing so well!! :clap;
-
:yahoo; :yahoo; :yahoo;
Home sweet home!
-
:cuddle; Katie that was a great update!! Welcome home super patient! Are you still going in daily for bloods?
All we need now is some :pics; ;D
-
Welcome home Katie :clap;
-
Congratulations Katie ! WOOHOO :clap; :2thumbsup; :bandance; :clap; :2thumbsup; :bandance; :grouphug;
-
Congrats, Katie!!!
I can only imagine how good it must feel
to be home! Enjoy your own bed, and that
new kidney! Keep everyone posted on how
all is going. :thumbup; :thumbup; :clap; :clap; :thumbup; :thumbup;
Anne
-
Congratulations Katie. Glad to see you are home already.
-
Yeah Katie, wooohoo!!! Congrats girl!!!! :2thumbsup; :yahoo;
-
Glad everything is going so good for you Katie :bandance; :bandance; :yahoo; :yahoo;
-
So glad to hear you're doing well. And thanks much for sharing all the details, which are so fascinating and helpful to those who may be facing this in the future. I'm wishing you tons of good "mileage" with this kidney, and I am very happy for you. :grouphug;
-
Resting, but still not sleeping much, due to 20 mg/day of prednisone. I will be weaned off 5 mg/week until I stabilize at 5 mg for the life of the transplant (hopefully many, many years).
I have today off from blood work, but I'll go tomorrow for labs then Thursday for clinic. I find that interesting, since both my previous transplants, I started out at 3x/week clinic. But this team NEVER releases you from their care, and I will continue to have monthly labs for the life of the transplant. Thankfully, in a month or two I'll be able to move those to a lab closer to home...the hospital is a 45 minute drive without traffic (and we'd be in morning rush hour traffic going toward downtown Atlanta, notoriously some of the longest commutes in the country).
Got to spread the news a little further this morning, since Fresenius called for my order. I got to tell them that I needed my stuff picked up instead of the usual delivery. They'll do that on the 28th, and my husband is taking the machine apart today. :yahoo; Then I just have to count cases of fluid and tubing. Uggh.
-
:yahoo; :yahoo; :yahoo; Katie, I'm so happy to hear your home. Thank you so much for sharing your story. I'll continue to say prayers. TAKE CARE.
-
I hope you take it easy and keep up the fluids - so glad you're doing well - thanks for the update!
-
Congratulations! I am so very excited to hear when anyone gets a transplant, but espeically an IHD member, makes my heart jump for joy!!! :clap; :2thumbsup; :yahoo;
-
Yay Katie!!!! Thanks for all the details... so cool that you got to see your new kidney. Hope all continues smooth for many many years to come.
-
I'm so happy for you. :yahoo;
Kind of a weird question, but I'm curious....
Did you shower before you went in? I've always had to shower with medicinal soap and refrain from using deodorant or lotions before the surgeries I've had. And how soon after surgery are you able to shower?
-
I'm so happy for you. :yahoo;
Kind of a weird question, but I'm curious....
Did you shower before you went in? I've always had to shower with medicinal soap and refrain from using deodorant or lotions before the surgeries I've had. And how soon after surgery are you able to shower?
I can kind of answer this for myself. First transplant, was pre-scheduled but was never told to take a shower before hand, b/c it dont matter how good you shower they still do their medical stuff the same and rub you down the same. As for my second transplant, it was a call in, which was funny b/c I was *IN* the bath taking a bath when they called, lmao. And I was able to shower as soon as I was able to get out of bed and get the iv's out.
-
I'm so happy for you. :yahoo;
Kind of a weird question, but I'm curious....
Did you shower before you went in? I've always had to shower with medicinal soap and refrain from using deodorant or lotions before the surgeries I've had. And how soon after surgery are you able to shower?
Well, I was a donor but I can answer this because BOTH myself and my recipient were told to shower the night before AND that morning when we woke up. We had to be at the hospital at 5:45am. The coordinator said they wanted out bodies extremely clean.
1/8/08 live donor - hand assisted laporascopic left kidney
-
I was given special medical soap to clean my abdomen with really well several hours before the surgery started. Then after the surgery, I had a central line for meds and bloodwork. That came out about two days after surgery, and I was able to shower from the neck down about 15 minutes later. They had a bandage on it, and I couldn't saturate that or take it off for 24 hours. I was home by that time, so I got to shower and wash my hair that afternoon. Woo hoo!
-
When I had my first shower after my cath was removed , I stood in the shower and cried :urcrazy;
I had been 5 months with no shower...
Kate you are doing so well, I am very happy for you :)
-
Kim, you just reminded me, I can SWIM this summer! :yahoo; (no more PD cath!)
-
How ya fairing KT?
-
Feeling kind of weak today. One of the side effects of almost every single med I'm taking is diarrhea, and it's taking it's toll today. I've just called the transplant team to see if there's something I can take for it. I was already weak because my H & H is still low, so I really didn't need anything more added to the reasons for that. I've just gotten out of the shower and am just letting my hair (shoulder length and very thick) air dry because I can't face standing there holding the hair dryer for that long.
I'll probably grab my book in a few minutes and crawl back into bed. This seems to be my daily routine so far: get up around 9:00, watch some TV, have a light breakfast, shower, hop on IHD for a few minutes, then back to bed til dinner time. Thank goodness the parents in my son's scout pack are providing dinner for us so my husband doesn't have to do EVERYTHING!
Also adding to the weakness is that the prednisone appetite has not kicked in. I ate a chicken thigh and half a red potato last night for dinner and was full (not stuffed, but satisfied). I'm not really complaining though, because I really don't need any more weight to take off once my energy does return!
Sorry this is not as positive as the others, but gotta tell it like it is, right? :)
-
Katie, those of us "waiting" are so eager to read every word of your experience. I think you are amazing and have such an incredible spirit. You always seem to see the best of every situation and of people. Let others do all they can for you. You deserve it. I keep you in my prayers and hope some of the side effects of the meds improve. :cuddle;
-
Katie, I love reading your story, you telling it like it is because it's nice to read someone else's post that isn't all positive. A transplant is not a walk in the park and all the medications can wreck your body. Len is 4 months out and still just having a hell of a time with meds. He is still weak and takes naps daily. Please take care of yourself and make sure you drink lots because your losing so many fluids with the diarrhea. (I know I don't need to tell you this), just a gentle reminder. Keep us updated. :cuddle;
-
Katie, PLEASE keep telling it exactly like it is -- good, bad, or in between! Hang in there; hope you feel better soon.
-
Thank you for telling it like it is. I'm happy you take time out of your recovery to update the site. This gives us all insight into how things go with transplants. I learn so much from people here. Sounds like things are going like they should and you are very fortunate. Here's to a speedy recovery.
-
I have been so busy that I haven't checked the site much lately....what an awesome news to read!!! I'm so happy for you Katie and glad to hear the surgery went smoothly! Stay away from sick people, crowds and small children for now if you can!!! :) :bandance; :yahoo; :2thumbsup; :clap; :beer1; :cuddle;
-
KT, dont worry about not being "positive" as you can tell, we appreciate your honesty and thank you for keeping us in the real ;) You just keep relaxing, take advantage of any rest you can get cuz i am sure when your feeling better your going to be busy busy busy :) Keep on keepin' on my friend :waving;
-
Thanks all!
As you can tell from the time of this post, the prednisone's doing it's job of keeping me awake through the night well...and of course, I have my first clinic appointment in about 6 hours. That is, if I can make it - we have snow and ice here tonight. About an inch of snow, and sleet on top of that. Did I mention we live in GEORGIA?? We'll make it if we can, but if not, I'll just have to reschedule for Friday. If we go today (Thursday), my son will have to go with us, because just found out schools are closed here tomorrow. He'll just have to wait out in the hall with my husband, since kids under 12 aren't allowed in clinic. They do kidneys and livers there, go figure!
As for staying away from kids...my son's 9. He's not allowed to have any friends over, and can only play outside with his best friend because he (the friend) has four or five brothers and sisters. Thankfully, my son is really good about it and the handwashing and all the stuff we have to do, but I know he's getting frustrated with it already. Poor kid.
On a bright note, I think I mentioned that some of the parents from the Scout Pack are arranging to bring us dinners, and we figured that if they could get us through Monday of this coming week, we'd be good to go. We just got an email tonight from one of the organizers, and we have volunteers until February 1! Including one of our neighbors who has a girl, so has nothing to do with Cub Scouts...not sure how he got the word, but not going to complain! And by the way, one of the organizers and her husband are both PA's and have assisted with transplants, so got the word out about how thoroughly cooked and cleaned everything has to be and if someone has the sniffles, they're to trade for a different day. The lady who brought it tonight (our den leader), was helping make dinners for a year for a family whose son had had a bone marrow transplant, so she gets it!
As for the diarrhea, the transplant team called back, and I was able to take some Immodium, thank goodness! That's helped, and I've just kept a glass of water beside me ever since taking it (except for the Coke Zero I had with dinner...maybe it's the caffeine keeping me up??).
As for keeping it honest, I know postings like that helped me feel a lot more confident going in, so I'll try to keep it up for ya. Even though I had been through two previous transplants, it's completely different when you're on the list and it's not a sure thing. (When you get The Call, take a book, puzzle books, cards, anything to pass the time at the hospital. You'll probably have several hours to pass.)
-
I am glad you are feeling better Katie. :cuddle;
Does it normally snow in Georgia? Is that a blonde question? lol :urcrazy; I hope you make it to clinic!
The meals are great. My girlfriends did the same for me when I first started dialysis. It was such a big help, even though I didn't feel like eating, my husband and two kids had life as normal. You have some wonderful friends and neighbours.
And as for being up at night on the computer...... LAP it up........ you are NOT attached to the cycler anymore!!!! Woooohooooo :bandance;
-
Katie..belated congratulations on your transplant. It seems like you were talking about PD exchanges at work just a short time ago. There will be no more of that! Enjoy your new kidney and freedom!
Jeff
-
Katie, I am so glad it's going so well for you!!! Having meals is going to be such a big help for you and your family!
Hopefully you get to the appt. even with all the snow!!!
:clap; :clap; :2thumbsup; :2thumbsup;
-
How was your day, Katie? What did your loving friends bring for dinner? And how is your son dealing with everything? I think about you all day and hope you know how much we all care. :cuddle;
-
Tonight was semi-homemade Chinese. Not even very salty, so that was great!
We made it to clinic with no problems. The sleet had changed to rain sometime overnight, so the roads were just wet by the time we left the house. Clinic went well. I had labs drawn on Tuesday, and my creatnine was .9!!! The lowest it has ever been in my life was 1.2, I believe. Just incredible! They've lowered my dose of cell-cept to try and help with the diarrhea, and I start that lower dose tonight, so we'll see how it goes. I left the hospital on a twice daily schedule of K Phos because my potassium and phosphorous were so low. Well today, the quadrupled my dosage, because my phos was .7. That's after having 2 diet cokes, pizza, some kind of chocolate, cheese and nuts everyday! I know, y'all hate me right now. I think part of it is my appetite is so small that I'm just not getting a great amount of anything.
The swelling in my tummy is way down, and I've lost about 5 pounds since Sunday. When I got the transplant, I constantly had a big belly from PD fluid, and with that gone and the swelling gone, I almost have a shape again (other than round, that is!) Give me a few months of being able to exercise, and maybe I'll be able to fit in my skinny jeans again.
Wattle, snow in Georgia depends on where you are. If you look at a map of the US, we're the state just north of Florida, which is where most people go for "escape the winter" vacations. However, our landscape varies from swamps to mountains. The mountains just north of where I live normally get a few (1-3) inches of snow year, and my parents, who live about an hour north of us, normally get snowed in about once a year. However, we're still in the foothills where we live, and only get measurable snowfall about every 5-10 years. Everything comes to a standstill, because no one knows how to deal with it.
Livecam, I switched to the cycler in May or June, I believe, so I had stopped doing exchanges at work then, but several times had to call in late because of alarms overnight, so my treatment ran late, and that made me late for work. I know my boss will appreciate not getting those calls anymore!
-
I just thought of something that came up at clinic today and was curious what others would say. Of course, they always ask you what's the date of your transplant? Well, my surgery began on January 9 at 9:00 pm and finished on January 10 at 1:00 am. Which day did I actually receive the transplant? I'm voting for the 9th, and the doctor seemed to go for that, but I'm curious what you all would say?
-
I say the 9th too. I'm glad you're doing better. I gave away all my skinny jeans. I couldn't bear to look at the clothes I couldn't wear anymore. Even though I'm dry during the day, my body has changed so much with PD.
After I get my call, I can't wait to go shoppin. ;D
-
I just thought of something that came up at clinic today and was curious what others would say. Of course, they always ask you what's the date of your transplant? Well, my surgery began on January 9 at 9:00 pm and finished on January 10 at 1:00 am. Which day did I actually receive the transplant? I'm voting for the 9th, and the doctor seemed to go for that, but I'm curious what you all would say?
Yes i say the 9th - because you were already in surgery and the kidney was already promised to you.
-
I had to spend a couple of hours last night in the ER. Nothing serious. I noticed Thursday evening that two of my staples looked like they weren't quite holding on one side, and my husband confirmed that for me Friday morning. I called the transplant team, and they said to put steri-strips on it, and if it started to weep, be red, I got a fever or any of that, to come see them or go to the ER if it was after hours. Of course it started to weep at about 5:45 on Friday night. Grrr!
We got there, and my husband and I both had masks on, and told the girl at check-in that I was immuno-suppressed and please get us in as soon as possible. She said, "well, just tell the nurse when you get called back. Go wait in the waiting room." We chose to stand in the hall instead, and a minute later, a nurse walks by and tells us to wait in the waiting room. My husband explained the situation, and less than five minutes later, the nurse had us in triage and as soon as we were done there, she got us a room. Whew!
The doctor tried steri-strips, but just like the ones I tried, it just didn't work, so he ended up taking out the two staples that weren't working and replacing them with three. I'm a little sore today, but not really enough for a tylenol, even. Just moving a little slower than I was a couple of days ago. We were in and out of the ER in about 4.5 hours...a new record for a Friday night in downtown Atlanta, I believe!
This brought up a conversation on the way home, and my husband thought I should ask you all. Every transplant I've had, they use staples rather than stitches, but every other surgery seems to have been stitches. Is there just less risk of infection with staples due to them being less porous than the material used for stitches? It seems to us that stitches would hold more securely than staples. Any thoughts or knowledge on this?
-
You have had quite an adventure Katie. I am surprised you were told to wait in the waiting room. My experiences with ER for myself and when I have taken kids has been wonderful. I am put in a separate area and assessed right away. Even for my kids they move to the front of the line and they try to get us out ASAP. Especially since your transplant was so recent.
-
Katie, glad your home and healing. Rest today! I have always had staples for surgeries. It seems like if the scar doesn't show, they just staple. Must be easier for them! Hope your weekend is very uneventfull :thumbup;
-
Glad to see all is good katie. :cuddle;
They used staples on all the transplant patients at RPA.
Keep up the good recovery.
Amanda :2thumbsup;
xxoo
-
My creatnine was down to .7 yesterday, and I got asked AGAIN if I knew what a good match I got. I'm beginning to understand! My cellcept is down to 500 mg 2x/day, prednisone is down to 10 mg/day, and prograf is holding steady at 4 mg 2x/day.
-
:yahoo; Yay!
-
Yay!!! :yahoo; :clap; :clap;
-
So happy for ya, Katie!!!!! :2thumbsup; :2thumbsup;
Keep up the good work, girl!
Anne
-
:clap; Woohoo Katie :yahoo;
-
Good on ya Katie :yahoo; :clap; :yahoo;
-
My %^&**()_ computer!! :banghead;
I am so ashamed at all that has happened without my knowing. I had to read the entire thread one time. But it is such great news! :yahoo; :yahoo; :yahoo; :yahoo; Seems that match was worth waiting for!
Told you guys January was a special month!! Last year January was a good month for transplants too.
I am very pleased at how things are going for you, Katie. Keep on keeping on, girlfriend! You have a whole international family there rooting for you!
:cuddle;
-
My creatnine yesterday was 0.6! My coordinator's exact words were, "Wow, I didn't know it could get that low!" :yahoo;
-
:yahoo;
-
Wow. That's just beautiful.
-
thats absolutely great kt. i didn't know it could get that low either. :beer1;
-
Fantastic! You sound like you are doing so well. I am so happy for your good results.
-
AWESOME!!!!!
Blessings to U.
Love, MIMI
-
My creatnine yesterday was 0.6! My coordinator's exact words were, "Wow, I didn't know it could get that low!" :yahoo;
:yahoo; O.K Perfect pee..er. We need some :pics; now!! ;D Just to show us how good you look! :cuddle;
-
I am so happy for you!!!!!!!!!!!!! Sorry I missed this thread completely but just read all of it. God's timing!!!!!!! Be Blessed! :bestwishes;
-
Thats fantastic Katie.. you are a tough cookie!
:cuddle;
-
:yahoo;
Great number!
-
Fresenius came and picked up all my supplies and my cycler today!!!! :yahoo; :bandance; 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. :2thumbsup;
-
Oh thats wonderful! I can only imagine how exciting that felt!
-
:bandance; Cool!
-
Whole lot of habits changing has to feel good. Congratulations.
-
Whoo Hoo!!!! :bandance;
-
:thumbup; Had to be a good time for sure!
-
has to be a fabulous feeling I am very happy for you...Boxman
-
That must have been a great feeling. I'm so happy for you :2thumbsup;
-
:bandance; Wooohoooo
-
I felt the same way when they got mine.. live it up. :grouphug;
-
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).
-
Sorry to hear of the diarrhea troubles, I hope they get you sorted out soon :thumbup;
-
Got my staples out today! :yahoo; :yahoo;
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. :yahoo; 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!!!!
-
Enjoy yourselves! That sounds fun and relaxing! :clap;
-
YAY!!!!
You deserve a vacation!!! I'm so glad you get to get away, somewhere warm for a while!!
-
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!
-
:clap; I hope you have a great time! I love the beach!
-
Have a wonderful time. I love the beach.
-
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.
-
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!
-
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.
-
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).
-
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!! :yahoo; 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!)
-
:2thumbsup; 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!
-
About a year ago I went to pick my son up from school, and the secretary was telling me about a girl who had just told her, "You won't believe this, but the doctor told me yesterday I have strep throat. That's the third time this year!" You know if it was yesterday she had not been on antibiotics for 24 hours yet!! :banghead;
-
KT,
Sorry, I'm just now catching up with your thread. I'm so happy for your success transplant. I pray all stays well. You are truly blessed.
-
Mmmmm! Mexican food sounds good.
Glad you are finally able to get out. Hope things continue to go well for you.
-
Started working from home this week. What a relief to finally have something to do! They've passed a lot of my responsibilities on to other people, so I just hope they give me enough work to keep me busy!
-
Go Girl ! :yahoo; :clap; :yahoo;
-
:bandance; Keep dancing!
-
I'm putting this in my cubicle when I go back to work!
-
I love that! It is so perfect!!!! I am so happy to hear when you are well. When do you go back to work? Are you still workingat home a little?
-
:2thumbsup; You look great heheheh!
-
Quick update:
Yesterday was my three month anniversary! I had a clinic visit on Tuesday, and everything looks great. I don't have to go back for clinic OR labs for a month WOO-HOO!
Creatnine is hanging out between 0.7 and 0.9; phosphorous and potassium and magnesium are getting closer to the normal range, but I still have to drink a diet coke or two day and have a handful of nuts with it (gee, darn!). I'm still a bit anemic, but my last transplant, it took nearly six months for that to get back to normal.
Took my son to the zoo on Tuesday afternoon, and aside from my feet hurting (6 hours), I didn't feel any ill effects from it. I also asked about getting a cat, and my coordinator said to wait three more months, and to wear a mask and gloves when dealing with the litter box, but it's not a problem :yahoo; I think that's the best news I've gotten since January 9!
-
KT, I'm so happy for you. :yahoo; Cat and all. I sure wish Len would start feeling better. He stays so tired all the time. That's another rant. Keep doing what your doing and have patience with getting a kitten. Don't want to take any chances. Take Care. :cuddle;
-
:yahoo; I am happy for you too!!!!!!!!!!!! Way to go!!!
-
:yahoo;
So happy for you hun!!!!
-
:2thumbsup;
-
Quick update:
Yesterday was my three month anniversary! I had a clinic visit on Tuesday, and everything looks great. I don't have to go back for clinic OR labs for a month WOO-HOO!
Creatnine is hanging out between 0.7 and 0.9; phosphorous and potassium and magnesium are getting closer to the normal range, but I still have to drink a diet coke or two day and have a handful of nuts with it (gee, darn!). I'm still a bit anemic, but my last transplant, it took nearly six months for that to get back to normal.
KT are you going to get a biopsy on your new kidney soon? I know mine will be done three months after transplant.
I know you were on peritoneal dialysis so I don't know how your diet restrictions were, but it's so weird now after transplant that my phosphorus is low and they're telling me to eat all the foods I haven't been able to indulge in-in years to get my phosphorus up, I'm actually on pills for it. I still don't drink as much as I could be. I'm not drinking anything with caffeine for a while until I can get my bladder under control, because you know, caffeine is a diuretic and it'll make me go every 5 minutes. I'm still going every hour or more often if I drink more.
Happy Three Months! :yahoo;
-
KT are you going to get a biopsy on your new kidney soon? I know mine will be done three months after transplant.
I know you were on peritoneal dialysis so I don't know how your diet restrictions were, but it's so weird now after transplant that my phosphorus is low and they're telling me to eat all the foods I haven't been able to indulge in-in years to get my phosphorus up, I'm actually on pills for it. I still don't drink as much as I could be. I'm not drinking anything with caffeine for a while until I can get my bladder under control, because you know, caffeine is a diuretic and it'll make me go every 5 minutes. I'm still going every hour or more often if I drink more.
Happy Three Months! :yahoo;
No one has mentioned a biopsy to me, and I'm not going to question it! I hate them, and I have heard from Karol and others that it can be risky to the kidney...with this being my third, I'm not taking any chances!
it's not unusual for phosphorous, potassium and magnesium to be low for a bit following a transplant. You're so used to restricting those foods, and the kidney suddenly swoops in and starts taking it out faster than you can put it in. I was on supplements for all three following my second and third transplants. I was taken off them about a month and a half ago because they were upsetting my stomach, and though my levels still aren't in the "normal" range, they're getting there.
As for the fluid intake, I bought a couple of really nice Camelback bottles (similar to the Nalgene bottles that were popular a couple of years ago), one in 32 oz size and one in 24 oz. I ALWAYS have one with me, and am going to start keeping one on my desk at work. It makes it easy to be sure I'm getting my minimum daily amount of water, and they're fairly easy to carry. I have found them at Sports Authority and Dick's Sporting Goods.
Best of luck with your's, and I hope your bladder is doing better!
-
Hi,
So, so great to read that you are doing and feeling
so well. :yahoo;
I love the cartoon you plan to bring back to work with
you :rofl; :rofl;
Enjoy those "phos foods" and post a pic of the kitty when
you bring he/she home!
Anne
-
My hematocrit is finally normal. It was 36.4 on Thursday of this week! :yahoo; I'm not cold, tired, or having trouble breathing...what an amazing feeling!!!
-
I got so excited for you reading this update. They only did biopsies on my kidney when I began to have trouble with it and that took about 20 years. Ultrasounds were routine.
-
*ONE YEAR ANNIVERSARY UPDATE*
Yesterday was the one year anniversary of my transplant, and everything is still going great! Creatnine has not been above .9 since the week of surgery, and people who have met me since would never suspect I had ever been sick. Things are just the way they should be. :)
We're going camping next weekend with my son's scout pack, and it'll be about the fourth or fifth time I've been camping since the surgery - I was on PD, so camping wasn't an option. We've been to Orlando and not had to rent an electric scooter for me in order to make it through the day; been able to stay out at night and not worry about getting home in time to connect to the cycler; and as part of my celebration yesterday I got to have a chocolate wave (big hunk of chocolate cake with chocolate chips melted on instead of icing and vanilla ice cream) at Red Lobster.
I have clinic on Monday, so we'll see how labs look, but since they're checked every month, I'm not expecting any surprises. As for ultrasounds and biopsies, no one has mentioned them to me, so I guess my team is much like Monrein's, they don't do them unless lab values seem to warrant it.
I hope everyone is feeling well and all who are waiting get their call very soon!
-
:yahoo; Happy Kidneyversary KT!! :yahoo;
:bandance; I am so happy to hear you're doing well - may you have many more years of health! :cheer:
-
Great news KT! Glad life is moving forward and you are doing so well. :cuddle;
-
:2thumbsup; So wonderful to hear KT. Thanks for keeping us updated. :cuddle;
-
Hurray for KT and the new kidney! :cheer: :cheer: :flower; :flower; :cheer: :cheer:
-
:bandance; :bandance; :birthday; :yahoo; :yahoo;
-
Happy kidneyversary, KT
May you have many many years and years
with your new kidney! :yahoo; :yahoo; :yahoo; :clap; :clap; :yahoo; :yahoo; :yahoo;
Anne
-
Yeah!! Here's to your continued good health!!!
-
Woo hooo!!! :bandance; :bandance; :bandance; :bandance; :bandance;
-
:guitar: Happy Kidneyversary KT :guitar:
-
Congratulations KT :thumbup; I pray you have that kidney for the rest of your life!!
-
:cheer: :cheer: :cheer: :cheer: Wooohoooo Katie!!!
I am so happy for you. I hope this kidney lasts and lasts and lasts.
Enjoy the camping. :cuddle; :cuddle;
-
Congratulations, KT! :2thumbsup;
Here's to continued good health and success! :flower;