2nd Call - It's a GO!!!!

[TeenHatesDialysis]

I am glad to hear that your creatinine is down. GO NEW KIDNEY!!! You'll feel better soon. Yeah! No more dialysis!!!

[rookiegirl]

Rookiegirl I am so happy to hear you are home! I kept wondering if you were ok. Thank God you're doing better - sounds like things will stableize over the next few weeks.
The meds make a lot of people queasy - they gave Jenna something and she still is taking it (Prilosec) but hasn't had any problems.
How often will you get the IVIG?
Best wishes and HUGS - take care and catch up on your sleep!
  

Hi Okarol.  Thank you for the PM.

I'm also taking Prilosec (purple looking capsule).  It's been really hard trying to get the meds down, but I take my time.  Normally takes me between 30-45 minutes.  I'm not sure how often I will get the IVIG.  I had my first dose last Friday and I have another appointment Monday.  I guess all is still new to me and don't know what questions to ask.  They keep throwing these words at me which makes no sense.  Even if I ask, I can't seem to remember anything.  It's like my mind isn't focus yet.  Hopefully, once I start to feel like myself, I will be more alert and well educated.

I do remember the day they called me.  The transplant coordinator told me my PRA was 81%.  I guess PRA has something to do with antibodies?  Words like BUN, what is that?

Last night I didn't sleep.  I tried and I just couldn't sleep.  Could it be the Prednisone?  If so, I take 4 pills in the morning.  Should I tell my doctor if I can take my Ambien that was previously prescribed?

Sorry for all the questions.  I sure can use some advice on the hereafters of transplant.

Thanks,
RG

[rookiegirl]

rookiegirl  Take time to rest and heal. You will have lots of appointments and lab work. Don't forget your mask and wash your hands often. The pain will go away. Please take care and drink, drink, drink. 

Should I always wear mask when I'm out and about?  Especially, going to my appointments?  I asked this question while I was in the hospital and the nurse told me it wasn't necessary.  I don't understand why it's not necessary when my immune system is being severely suppressed.

I wash my hands so much they are drying out.

[pelagia]

I guess all is still new to me and don't know what questions to ask.  They keep throwing these words at me which makes no sense.  Even if I ask, I can't seem to remember anything.

We had a notebook and I wrote everything down, because we couldn't remember much by the time we got home.  It's would be easier for you if someone could go with you and takes the notes.  Can your husband do that?

Words like BUN, what is that?

The labtestsonline.com site is really helpful for explaining the tests.  Just type "labtestsonline.com" and whatever test you want to know more about into the google search bar and the right page should come up.

Last night I didn't sleep.  I tried and I just couldn't sleep.  Could it be the Prednisone?  If so, I take 4 pills in the morning.  Should I tell my doctor if I can take my Ambien that was previously prescribed?

My husband had trouble sleeping after his transplant, but now months later he is over that.  It must relate to the drugs.  You should be able to take Ambien.

Should I always wear mask when I'm out and about?  Especially, going to my appointments?  I asked this question while I was in the hospital and the nurse told me it wasn't necessary.  I don't understand why it's not necessary when my immune system is being severely suppressed.

I wash my hands so much they are drying out.

My husband wore a mask for the first month or so.  After the transplant, the physicians assistant in the hospital told us that the most recent thinking is that the masks don't really do much in terms of protecting us from germs.  On the other hand, I don't think it can hurt and maybe it will help.  My husband still wears a mask when he flies.  I think washing hands is a completely different issue and doing so is very important.  Keep some hand lotion by the sink and use it whenever you wash your hands.  That will help.

Hopefully you are going to be feeling a little better every day and then before you know it you'll be feeling great!
 

[willieandwinnie]

  What pelagia said. 

[paris]

rookiegirl!!     So glad you are home.  You have been in my thoughts and prayers all week.  I hope you keep improving every day.  Rest, take you meds and know we all love you!!   

[Rerun]

WOW a PRA of 84% and you still got a match.  I'm impressed.  Mine is 96% so have decided not to even be listed.

Glad you are home and doing well.

                             

[Sunny]

Yaaay! Glad things went well. I hope things get better and better soon for you.

[RichardMEL]

WOW a PRA of 84% and you still got a match.  I'm impressed.  Mine is 96% so have decided not to even be listed.

Glad you are home and doing well.

                             

ReRun maybe rookiegirl's experience shows you that all hope is not lost and maybe you could get one too???

though I got the impression the PRA test was post transplant -  which would kind of make sense I guess?

[rookiegirl]

This morning I had my first transplant clinic visit.  My creatinine is down from 5.8 to 3.8 since last Friday.  New kidney is showing great signs.  They have me schedule next Monday to have my Tenchoff (PD catheter) surgery remove.   They also scheduled to do a biopsy of the new kidney 2 weeks after that.

Right now, they have me going to the transplant clinic twice a week (Mondays/Thursdays).  I'm still feeling lots of soreness and sleepless nights, all thanks to steroids.

[Darthvadar]

Delighted all's going well, Rookie...

Fantastic news!...

Darth...

[lola]

 

[paris]

Such great news.  Thanks for letting us know how you are doing.  We all worry!!   

[RichardMEL]

Great news! That seems very quick to cut hospital visits down to what.. 2 a week? I was led to believe you had at least a month of daily rounds of bloods and clinic visits before they gave you a breather!

[rookiegirl]

Going back to the hospital Monday to have my PD catheter removed on Tuesday.  Last Thursday clinic visit creatinine went from 3.8 to 3.4

Now the doctors are concern about my Liver and Gall Bladder.  They think it could be the medications.  So when I go into the hospital on Monday, they want to do an ultrasound of my liver and gall bladder.  They discontinue one of my meds that could potentially be the cause.  Anyone out there having problems like mine?  I really hate for them to fix one issue and destroy the other organs in the process.

Still feeling lots of pain and soreness.  My pelvic and groan area feels numb still.  Just feels like its asleep, but once in awhile I can feel little prickly sensation.  Doctors said it could be the nerves trying to reattach, whatever that means.  I read a thread about permanent nerve damage after transplant.  Anyone out there have the same issue?

I pray for no complication of the removal of my catheter.  Another abdominal pain to endure.

[G-Ma]

 

[rookiegirl]

My PD catheter was removed Tuesday morning and I was discharged around 8pm.  The surgery went well except for some soreness in the incision area.  When I arrived in the hospital Monday afternoon, my creatinine was down from 3.4 to 2.8.  This morning I went to the transplant clinic and my creatinine increased back to 3.4.  Now they want to move my kidney biopsy to Monday instead of 4/20/09 as planned.  I don't know if the Sodium bicarbonate had anything to do with my creatinine going up.  They dosed me up with this in the hospital.  I've noticed I also gained weight since I left the hospital about 5lbs more.  I also noticed I'm more swollen.  I'm going back again Monday for a clinic visit and if my creatinine is not down they will go ahead and do the biopsy that day.

I'm so scared.  I've had 2 biopsies in the past before dialysis and they were both painful.  My first one I had complications where I was in the hospital for 5 days.  They hit some blood vessels.  I'm scared because I still have soreness and pain in the tranplant area.

I just wish I can recover soon from all of this.  It's been so crazy and I feel like I'm being tugged left and right and don't know whether I'm coming or going.

[Darthvadar]

Poor Rookie....

As if you haven't been through enough...

Please God this will turn out to be a minor blip on the road to complete recovery...

May God bless and protect you...

God bless...

Darth.....

[okarol]

Hi Rookiegirl,
I have heard of a few patients having toxicity from their anti-rejection meds, and as soon as they were reduced, the creatinine went down again too. Hopefully it's something simple like that. Jenna had a little lidocaine injection before her biopsies - never felt a thing. The first one had no bleeding but the 2nd one bled a lot (freaked us out to see her urine look like red wine) but after pressure and resting quietly for 2 hours she was fine. I hope it goes well for you. As far as the numbness, my sister had that after her cesarean, it never did get better, but she got used to it. Best wishes and HUG coming your way - we will be with you in spirit on Monday! 
   

[paul.karen]

prayers and well wishes RookieGirl.

[paris]

RookieGirl, I hope things settle down soon.  Your body has been through major changes and hopefully, it will all start to get better.  Let us know how the biopsy goes. I am sorry you have to go through all of this.  We are surrounding you with love and prayers   

[kellyt]

I can understand why you're scared.  I would be, too.  But let your body heal and stay calm (that's really the only advice I have and I know it's not good advice - sorry   )

What anti-rejections meds are you on?  Prograf and CellCept?

[pelagia]

I know it's hard not to worry, but try to give yourself a break from that as much as you can.   

[Sluff]

Hopefully this will pass soon and you will be on the road of recovery. Try not to worry, ( easy for someone else to say huh.) but really RG what ever is going to happen tomorrow will happen and all the worry will not change it, it will only stress your situation more.  I will pray for the best.   

[rookiegirl]

I can understand why you're scared.  I would be, too.  But let your body heal and stay calm (that's really the only advice I have and I know it's not good advice - sorry   )

What anti-rejections meds are you on?  Prograf and CellCept?

I'm on Prograf and Myfortic.  They keep changing my Prograf from 4 to 3 to 2 twice a day.  In the hospital they started me on CellCept and change it to Myfortic.  I'm not sure why though.