I got the call!!!!

[lou]

    Sooooooooooooooooooooooooooooooooooooooooo happy for you!!!!!!!!!!!!!!!!!!!!!!   

Thats made my day. Keep drinking that water and you will be home before you know it! x x x

[Rerun]

Wonderful news.  Someone's Sunset is your Sunrise and I'm sure they want you to live life.   

You will be home in no time and next month you will be dancing at a wedding!

                  

[BASSMAN]

That is the kind of news I needed to hear.  I am getting really close now! God Bless You!

[Marsh]

Congratuations on your new kidney!!!     

[chook]

All the best, Brianna, and thanks for sharing!

[RichardMEL]

oh Brianna this is so absolutely awesome that you feel so good, are drinking and getting around a bit already. Just what should happen in a normal good transplant! How wonderful to hear! My best best wishes are to you!!! Mucho happiness that another IHD transplant has happened, and to a lovely young lady with everything ahead of you!!!

 

[Brianna!]

Hello everyone! I'm here to update you all again. Well they said I might get out Friday! Only 5 days in the hospital! But I don't think I'm ready to get out that soon. So it'll probably be Monday. They don't like discharging people on weekends. And after I get out of the hospital, I'll have to go for clinics 3 times a week for a month. One hour visits about. Then after that I think it's twice a week for another month? I can shower tomorrow once I get my bag out! I still haven't looked at my incision. I'm nervous. But the doctors said it looks really good. My mom said it's really long, and she didn't think it would be that big, from what she saw in the movies! 

I'm kinda in a lot of pain today. My incision is really stiff. But they said I needed to have a uh, bowel movement. And I just did and I feel a little better. I've been walking a lot. I walked 4 times yesterday, and 3 times so far today. The physical therapist said I'm one of the most active transplant people she's met! I just wanna get out of here! But I'm so nervous about all the meds. But I know I can do this. I wasn't so sure before, but I'm so so so so grateful for my donor, I don't want to let him down. Whenever I think of him I keep crying. Like right now, I'm bawling. I hate feeling like this so next transplant (unless something better comes along, you know!) I really would like a living donor. I hate feeling like someone HAD to die for me to get a better life. You know what I mean?

I gained 8.something kilos so far. I'm pretty sure it's mostly fluid. Since I haven't been eating that much. I've only had three meals since yesterday. It's weird, I was so looking forward to drinking milk, but now it's like I don't want it! Can transplants change people's taste in food?

I don't really know what else to day. The transplant coordinators are coming tomorrow to explain the meds and fill my box and everything.

Oh yeah! I forgot to add. My creatine is 0.8!!!! Can you believe that?!? The transplant coordinators had to double check when they saw that! Even though the match wasn't so great, this kidney was is perfect shape!!!!

Thank you guys for everything, I don't know what I would do without all of your support. <3
 

[tyefly]

wonderfull news Brianna.......    its a great summer

[okarol]

 

[galvo]

Wonderful news.

[natnnnat]

 
xlent news.  I'm so happy to read this.

[cariad]

Congratulations, Brianna. You are off to a cracking start!

You can absolutely handle the meds. If you can handle dialysis, the meds will seem like a holiday. I think any major medical event can change a person's taste in food and the meds will definitely change your tastes.

I couldn't look at my scar either, and was really afraid to touch it for ages.  Mine is probably 4-5 inches long, but really thin, so that's good. I think it will be hardly noticeable as it fades with time. I'm sure what you've built up in your head is much worse than reality. Go on, take a peek!

I wasn't so sure before, but I'm so so so so grateful for my donor, I don't want to let him down. Whenever I think of him I keep crying. Like right now, I'm bawling. I hate feeling like this so next transplant (unless something better comes along, you know!) I really would like a living donor. I hate feeling like someone HAD to die for me to get a better life. You know what I mean?

I have heard these feelings are really common for recipients. I have never had a deceased donor, but the way I see it, this person was sadly going to die anyway. The fact that he died under the fairly rare circumstances that allow for transplant gives the opportunity to his loved ones to improve someone else's life and lend some meaning to his life and early death. I think that must be a really important source of healing to them, and you are a part of that healing by accepting the gift and contacting the family. Unfortunately, live donation comes with its own set of negative emotions and fears for the future health of the donor.

I'm hoping for many happy and healthy years for you with your new kidney!

[bette1]

I am so happy that everything is working well for you.  It's like a new lease on life.   

[RichardMEL]

wow only 3x/week for labs? that sounds awesome. I was told down here in the land of oz, it's pretty much daily labs for a month, then like 3x/week etc.. so you're getting off lightly. I know you're already sick of the place, but it's a whole lot better than those needle jabs hey?!

I bet you're even not used to drinking when you should be - I've been told longer term dialysis/fluid restrictions means your bladder actually shrinks, and you have to train it up again to grow to hold all the new fluid you can have. Some patients, apparently, are so used to a restricted fluid intake that they find it really hard to drink all they need to do (note to universe: this will NOT be an issue for me!  ). I think all the stress etc you're under will probably change your tastes at the moment.

You may also get some kind of genetic memory from the donor. yeah, that sounds freaky, but it might happen. Don't be scared or anything... all it means is you might find things you'd like that you never liked before etc. That could be fun.. or weird....

re your feelings about the donor. Sounds perfectly normal and reasonable to me to feel that way. That tells us you're a normal feeling person!!! (Sorry to bore you with the fact that you're normal in that regard  ) As dear cariad has said sadly the guy was going to die anyway. It's not like YOU made it happen in any way. This young man made a decision(or his family did) to donate, and he was able to give that gift... something you already know you cherish and will treat with respect and care for every day it cares for you. I am sure, had you got the opportunity to talk to him when he was alive, he'd absolutely want to be helping you this way and knowing that he could do something so positive. I don't know how I will feel when it happens(most likely I will wind up with a deceased donor organ). Already when I hear about an accident or something, irrationally, just for a second, I think "could they get an organ?"(and of course I know it's next to no chance from a car crash, but of course you don't actually hear when some random person is in hospital with a condition that could lead to transplant)... anyway when I think that for a small milisecond I immediately feel so awful, and selfish, for almost wanting that accident or whatever to happen for that small chance to get a kidney. I have to remind myself that I'm not making these people die, and I'm not influencing the decision to donate in any way. I will be the lucky lottery recipient when the numbers come up for me - so I will try to not feel guilty or anything like that. Obviously very sad for the donors family and friends at their loss (I'm not THAT heartless!) but I don't want to feel guilty for accepting a generous gift - that's just bad mannners now, isn't it?! 

Anyway Brianna - my best wishes to you!! How wonderful to be doing so well. That's sensational! 

[Brianna!]

Well I'm home! I got home yesterday afternoon! I'm a little overwhelmed with all the meds. But honestly, I thought there would be a whole lot more. I just feel like I'm on my own now. And if I mess up, I can't blame it on anyone but myself. But so far so good! I have to cath myself every 2 hours for a while. My usual is 3 to 4 hours. They just want to keep my bladder as empty as possible. I'm going to try to take all my meds and cath myself without being reminded. I'm almost an adult, and I just need to feel like I can do this on my own. I'll feel a whole lot better about myself. My phosphourous is LOW! I feel so weird. I have to take this powder stuff to bring it up. I keep wanting to go get my renvela!! 

My creatine is (get ready!) 0.6!!! Can you believe that!? It keeps going down! I'm so happy!! I'm staying at the ronald mcdonald house for a little while. Because we live an hour away from the hospital and that's kinda far to drive three times a week. I saw pictures of it online, and there's like a garden and a game room. And it looks sooo nice! And I can hopefully meet some kids my age, that semi understand what I go through.

I think my donor didn't like soda or something. Because I used to be addicted to Mountain Dew, and now I just don't like it. And that's good, because I should really cut that stuff out! I've had one since my transplant and it tasted weird to me. But I've been drinking a lot of chocolate milk

Richard--I'm having a really hard time adjusting to all this water I have to drink! I'm so picky about my water. I only like ice mountain or pur life water. And out water in town, is kinda gross. They almost wouldn't let me out of the hospital, cause I wasn't drinking enough! But I'm getting there. But they want me to drink 3 litres of fluid instead of the usual 2! So I'm getting in at least 2, I think. And I remember the day after transplant, I was watching the news and I kept thinking "Is that my donor?" when I heard about an accident. And then I felt really bad.

Caraid--I did finally look at my scar! I can only see a little of it, because my stomach is a little bloated. But from what I can see, it looks fantastic! Just like a little line with steri strips! It will probably be my least noticable scar! I don't scar well.

Has anyone here ever written a letter to the donors family? I'm going to, but I need to see like a sample letter. I don't know how to start it off. And I have so many emotions I want to express and I don't know how!

I love how my hospital does the prednozine. They start me off really really really high. And right now, like 9 days after, I"m only on 20mg! So I didn't really gain any of the dreaded weight. At most I gained like 6 pounds.

Thank you guys so much for the best wishes and support. When the transplant team was telling me all the side effects and stuff, I knew all of this from IHD! I've learned so much from this site. I'll be forever grateful that I stumbled upon it.

Love,
Brianna 

[okarol]

  It's great to hear from you and everything sounds wonderful!
 

[galvo]

You're going great!

[Dianejt]

 
So glad to hear how well you are doing. Keep it up girl!!

[Riki]

I don't even know you, Brianna, but reading through this thread, I teared up.  I love hearing about good transplant outcomes.  There's so much excitement involved with a transplant.  This thread kind of reminds me of when I was a kid in the children's hospital.

They had a unit just for the nephrology patients, was a unit full of little brave souls, and I imagine it still is.  When someone got the call, the excitement on the unit was electric.  It was like Christmas morning.  We'd all stand in the hallway, or the doorways of our rooms and watch the lucky recipient go by on the stretcher, being taken downstairs for the surgery.  The nurses were pretty open with us, without breaking ethics protocols, letting us know when the recipient got out of surgery and if they were doing ok.  It was just an amazing time.  It's different in the adult hospital, but then, a lot of things are different in the adult hospital.

Congratulations.  A new kidney is something to celebrate.  My first kidney was named for my donor too.  All I knew about him was that he was from Newfoundland, and died of a head injury.  I named it Newf, which is a common nickname for Newfounlanders who move away from Newfoundland, usually for work, and is the only Newfoundlander around.  I never wrote a letter to the donor's family.  Even though that was 18 years ago now, I regret it.

Whenever October 1st and May 22nd roll around, I think of my 2 donors and their families, knowing that it's probably a day of sorrow for them, and I'm kind of glad that they don't know who I am, because if they knew that the kidneys that were donated to me both failed, I don't think they would be that happy with me.

[natnnnat]

 
its great to read your updates Brianna.   

[lou]

Wonderful news Brianna!!! So glad all is going fantastically.

I wrote a letter to my donor family a little while back. So hard as your right there is so much you want to say. The nurse advised me to keep it short so all i put was a little about myself, what my life what like before and what its like now.

You are doing great - just keep drinking that water!! x xx

[Riki]

hehe.. and have some chocolate milk for me..... I really miss that stuff...

[jennyc]

OH GOSH! that is fantastic. Been MIA for a while so this is fantastic news to come back to. I'm so happy for you! It's a huge change, bet you don't know yourself!

[Poppylicious]

Sorry, I missed this so my CONGRATULATIONS! are a little late!  But, yay!

 

[Brianna!]

Hey guys!
 
It's been about two weeks post transplant. Everything is going fantastic so far! My creatine keeps dropping, still! Today it was 0.48! My transplant coordinator keeps telling me "Oh I don't expect it to go down any lower! She said that at 0.6 and again at 0.5! I was so shocked when they told me how low it was! It was funny looking at the lab print out, and my creatine says low!! 

My phosphorus is finally in normal range. It was low for a while. It's on the low end of normal, but normal. My prograf level is 9.1 as of today. They just called with the results.

They've been having a really hard time getting blood. Last Wednesday which was the first time I had to come in for blood, they poked me 4 times! 3 on my arm, and finally they did a finger poke. So they couldn't get a prograf level that day. But my creatine was good, so they just let me skip it. It's been getting a little better. Only two pokes. They've been having the best luck in my hand, but it always hurts a lot. And I always bruise.

When I got home last Monday, I found this HUGE bruise on my arm. When they did a pic line on me, then nicked an artery. WHICH HURT SO BAD. It felt like someone infiltrated me and my whole arm got numb and cold. So now it's all bruised there. It's really painful.

Two more weeks until I can go out into large crowds again! I can't wait. I'm getting restless.

I'm still in a lot of pain. And my doctor when I saw her last Wednesday said to me "You're still in pain?!"  Um. The surgeon said it was one of the most difficult transplant's he's done, because of all my scar tissue. I think I'm going to be in pain for a little longer than the average person! I got my pain pill perscription refilled. But they only gave me six! I take 2 every four hours. But I've been trying to deal with 2 and night and 2 in the morning. But still! That will MAYBE last me until Wednesday. The doctor who wrote the script was the one who was surprised I was still in pain! UGH. I'm so mad at her right now.

The Ronald McDonald house is so nice! There's a playroom, arcade with a wii, piano, sunroom, a secret garden, art room and so much more! They make dinner for us every night but Sunday. And lunches sometimes. And the beauty school in Milwaukee is offering everything on their "menu" for free for people staying at the Ronald McDonald house! I'm going there once I can go out into public! I'm going to get my hair dyed and my mom is gonna get a mani pedi! I just really love it here. I don't really want to leave! 

So long story short, everything is coming along beautifully! I'm very happy with how everything is going. The meds are doing good. I'm down to 15mg of Prednizone. I can feel the appetite! But I've actually lost weight since Friday! 

Thanks again for being here for me! I really appreciate it.