Angie got a transplant !!!

[okarol]

From Angie's site as of this morning:

I got good news .. and BAD news ...

which should I give first?

Well, let's give the BAD news first:

My kidney is not working as in not eliminating toxins from the blood so they tell me I will have to continue dialysis but now just twice a week ... maybe once a week but to start .. when I get home I will go twice a week. I am having dialysis for sure today at noon (when my mom is supposed to call and lunch comes and I take pills .. but I won't be in my room .. damn it ..)

They say what I have is called ATN (Didn't get written down what that stands for) or also called "Sleepy Kidney Syndrome"

It has been 3 weeks as of 2 days from now (Sunday) yet even though I pee a lot .. all I am doing is eliminating fluid. I have to give myself Epo / Eprex, and I have to be on a low potassium diet now..

Now for the good news: I am discharged as soon as I go to dialysis today so I must pack up my room. So this is short. Sorry no lab results as they don't have it printed out yet.

All I know is the creatinine went up even more (in the 500's now) and that the blood transfusion finally got my hemoglobin up (90) so I feel more energetic but still tired simply because I didn't sleep well. For some reason after getting the blood (the 2nd unit is when I noticed it) I was itchy for over 24 hrs. I feel better now but want to fit in this post, check email, send my mom a message incase I miss her call (I can't call out .. only receive calls) and message my dad so he is in the loop and also call the lady I will be staying in London with since my mom doesn't want to come get me today just to drive me back to London for clinic visit on Monday again. So this means I will NOT have net access for the WHOLE weekend .. so this is the last post til I am back home!

Hope you all are doing well! Thx Cosmic Kelly for calling me (if I didn't already mention it, I have been rather tired lately and forgetful).

Okay, I am pressed for time! Thx for your well wishes and prayers! Ttyl! Take care!

** So as of noon my phone in my room at the hospital will no longer be me answering but a new patient. **

[Chris]

Not sure what to say. That's good and bad news.
Just hope you feel better soon and that the kidney wakes up.

[Amanda From OZ]

Hey Angie, Hope everything improves soon. I also had a sleepy kidney and it finally woke up! your one will too... it just needs time to recover.

Wishing you all the best.

Amanda
xxoo

[ODAT]

Oh damn things seem to be going down hill again for Angie. Here's the latest:

Creatinine has been steadily going up the last 3 days. My hemoglobin is dropping again. My magnesium is too low so the nurse brought me 2 packets of peanutbutter to eat (What? No bread? Sheesh! lol) and they are saying they want me to do another dialysis tomorrow as the kidney is only removing mainly fluid and not the toxins like it should. They said the biopsy revealed no rejection but did reveal that there is damage to the kidney. Or was it the ultrasound that revealed that last part? I am not sure but they did both the last few days. Still waiting for all results. I am so weak today. After my shower I had to have a nap .. and yet they want me out of here to free up my room for a new patient? I live alone and in the last apartment in a very long hall way so I am worried about how I will manage!

I am a little worried. Please keep me in your prayers!

- Angie

Sounds like you are going home, but I still wanted to let you know of a form they have in hospitals called 'Safe Discharge.' My aunt, who is a nurse, told us about it when they wanted to send my dad home and there was NO WAY we could have cared for him. I'm not sure of all the details of it, but it could be something to look into. Hope you get feeling better soon!

www.worcestershirehealth.nhs.uk/RBPCT_Library/lesleyway/Discharge.doc

Kim   

[Chris]

When they sent me home after my transplant, I was assigned a home health care nurse. It amazes me still how each center works differently.
Best of Health to You Angie!

[MyssAnne]

Angie, all we can do is hope and pray for that sleeping kidney to wake up. 

[okarol]

When they sent me home after my transplant, I was assigned a home health care nurse. It amazes me still how each center works differently.
Best of Health to You Angie!

When Jenna came home on day 3 after the transplant - I was her nurse! I almost felt like what it was like when she was a baby and I would sneak into her room to watch her breathe!

[Chris]

I was in the hospital for a week and a half, then givin the option of staying in the rehabilitation unit or going home and having a home health nurse come check on me and giive IV treatments. Heard to many bad stories of Rehab unit, so I went home. That was the worst ride of my life, dad had a sports car and could feel every little bumb downtown Chicago and then on the highway. Thank goodness they sent me home with a small pillow for my stomach. I guess my tx center has some good qualities after all

[angela515]

First transplant I came home on day 4, needed no help with anything, and was up and about on my own, I kinda took care of my mom, she was my donor, she was worse off.

This transplant I came home on day 8, didn't really need any help again, but I got some with my kids, so that is great.

[Sluff]

Sometimes after being in the hospital I don't feel ready to go home but when I get there I feel better. I don't know about the rest of you but my doctor usually asks if I have help at home otherwise he would keep me another day or two. I've never questioned it because by the time the question comes up I'm so darn ready to get the heck out of the hospital anyway.

I don't blame her for being nervous about it though because the healthcare system stinks and what works for one person doesn't always work for the next person. Angie needs to speak up if she is not ready to go home, if they send her anyway and something happens I would scream malpractice so loud the Prime Minister would hear me.

I'm sure in Angies case Sandman would fly up there to take care of the love of his life, so no worries.

[Rose From OZ]

It's a bit late, But Congratulations Angie, here is to a new kidney! 

[okarol]

Latest news form Angie's website:

OCT. 25:
I have insane itchiness all over that even Benedryl is not helping. I wonder if any other kidney transplant patients ever get this. It is the not the same phosphate itchiness .. this feels like a million hot pricklies .. and gets worse if I rest / sleep ..
Went to clinic visit in London and they said my creatinine went down a tiny bit. That's better than going up. But my hemoglobin went down a bit too.
The doc finally lowered my lasix as he realizes I am getting dehydrated.


OCT. 26:
I am starting to worry about my kidney as I have been throwing up the last 2 days and also was back on Tuesday. 3 times in one week ... makes me worry I might be rejecting but I won't know til Monday.
Also I keep sleeping in and taking my pills late as my sleep was thrown off my the itchiness. I find the benedryl keeps the itchiness away ONLY if I take it BEFORE the itchiness starts .. or else it is useless no matter how much I take.

[Chris]

Hmm, not sure about itchyness, but I remember one IV medication I was given after my release would cause itchyness unless benadryl was taken before treatments.
I am sure, or hope so that Angie told her doctor what has been happening, especially with vomitting. Seems she may need to go back into the hospital to get things under control. Hopefully the kidney is not failing.
Good Luck Angie

[kidney4traci]

I don't know if you are a believer or not, but I just said a prayer for you Angie!  Pray you see this turn around for the better, may it just be a med problem and not rejection.  WAKE UP NEW KIDNEY!!!!!!!!!  There, did that work?

[Sluff]

Hope for the best.

[Razman]

I have been out of the country since Oct 13 and I would like to thank everyone for keeping this post up to-date.  Angie is only a  3-4 hour drive away from me ( thats close when you think about where we all live, and her hospital was only 1.5 hours) .  For that reason I started the post and appreciate that others kept it going.

[okarol]

The lastest news from Angie's website:

Oct 31:

Dr. Jevnikar today sounded like he doesn't have much hope for this kidney. I will have dialysis 3pm today according to the nurse and on Monday back at home according to the doc.

There is so much scar tissue on the kidney that will never heal.

Please pray for me everyone. I am scared. I also mentioned wanting to visit my fiance's family for Christmas in PA and they seem to think that is EXTREMELY unrealistic in my case and that I will definately still be on dialysis at that time...

The surgeon Dr. Yves CauMartin is very caring and interested in my case as he did the surgery. Dr. Jevnikar said I will need dialysis still for sure. He said I can do it at home Next Monday and then come to London ON again on Tuesday for an out patient Biopsy where I will have to lay in the bed for 6 hrs after wards. I might have to take a cab that day as I don't know if either parent can take me that day and I don't think they would want me to drive myself that day.

Then the nurse said I am also having dialysis today at 3pm. I always hear different things from everyone.

..................

Nov 1:

The Neph just said I can go home today. But he verified that I will have dialysis not once a week, not twice a week, but THREE times a week for 3 1/2 hrs exactly like I was before! The ONLY difference is now they don't take me down to the dry weight of 63.5kg but they don't remove any fluid, not even the 400ml saline they use for run back of blood back to my arm and they do blood work before every dialysis to check creatinine and potassium.

So now I am going to message my dad since I can't call out and I will tell him to go ahead and dry the 3 1/2 hrs up to get me and take me home. Then I have another dialysis this Friday back in my city and then again on Monday and then on tuesday I have to be back in London for 8am's biopsy as an outpatient and be in bed for 6 hrs and then go home.

Today my stomach is bothering me but I don't know why. I think it is my bowels. Who knows ..

My BP came down to normal today. Seems it was only on the high side because I needed dialysis (toxins, not edema).

So the kidney is not working. The Neph Dr. Habhab said that even though the creatinine is lower today that it is only because of dialysis.
   

[Sluff]

Damn, I hope this is only temporary for Angie. I really do feel that it is terrible news. If anyone stays in contact with her please give her my well wishes. Lets all hope and pray for better news soon.

[angela515]

I will be keeping you in my thoughts Angie... this is a sucky thing to happen and especially around your birthday! 

[tamara]

So sorry Angie 

Thinkin of ya

xxx ooo

[Wattle]

That SUCKS Angie. Sending {{{{HUGS}}}} to you.   

[okarol]

It does suck. I hope they can get more function for her, but for now she's back on dialysis. Here's her post from the living donor website:

I am not doing so well .. the new kidney is not working hardly at all .. just making pee but not clearing really any toxins. I have to go to dialysis in 3 hrs. And then again on Monday. They Neph today said he thinks I will always need dialysis .. and that I won't be able to visit my fiance's family for Christmas this year after all ..

So much for my life no longer being on hold and me being able to finally work toward marriage ..

I am a little sad today. The kidney is not only sleepy but quite scarred and the Neph said that scarring doesn't go away. He also said I will have to have yet ANOTHER biopsy (4th one in a month) and that if I do start rejecting that he doesn't think my kidney could be saved as it is very weak or something like that. They tell me very little.

The surgeon who did the surgery is very nice and concerned and feels close to the situation. He is a couple years younger than me and I get the impression he feels very badly that I am having such a hard time.

everyone goes into surgery not knowing how the outcome will go. It can always be good or bad. Can never been assumed life will be like healthy people. ... but I was really really hoping! My first transplant didn't go like this .. that is for sure ..

[Chris]

I wish you the best Angie and I with the doctor would tell you more. No matter were in the world we are, there seems to be doctors who do not want to tell patients anything fully.

[Joe Paul]

Man thats rough 

[paddbear0000]

  Angie, I hope that kidney decides to get on the ball soon! You're in my thoughts and prayers girl!