I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: donnia on June 06, 2008, 04:26:56 PM

Title: HELLOOOO from my new kidney!
Post by: donnia on June 06, 2008, 04:26:56 PM
:yahoo; :yahoo; :yahoo;  I feel superfantastic!  Everything went smoothly.  As karol told y'all, the kidney started working immediately.  My creat was 4.9 pre - op (Thursday am) and at 6am it was 1.9 praise God!  It is amazing how good I feel. Juan got lots of pictures that I will try to send a little later.  My doctor took pictures of my new kidney while it was still in Joyce then out of Joyce then inside me!!!  I will see how they look before I send them :) Everyone here has been great! The cafeteria is lacking bigtime compared to Juan's cooking.... but that will come soon enough. :yahoo; :yahoo; :yahoo; 

Okay, I'm getting tired so I will update more when I am not so tired.
Title: Re: HELLOOOO from my new kidney!
Post by: monrein on June 06, 2008, 04:32:56 PM
Donnia...It's so fantastic.  I'm beyond excited for you and your family and what a great friend you have in Joyce.  Keep up the good work and continue feeling better and better.   WOOOO HOOOO :grouphug;
Title: Re: HELLOOOO from my new kidney!
Post by: Sunny on June 06, 2008, 04:37:37 PM
Wonderful news. What a difference it makes for you. Hope you have a quick recovery.
Title: Re: HELLOOOO from my new kidney!
Post by: charee on June 06, 2008, 04:42:00 PM
what fantastic news, so happy thats its all going so well for you :yahoo;
Title: Re: HELLOOOO from my new kidney!
Post by: kimcanada on June 06, 2008, 04:45:38 PM
OH congrats!!!!

I am very VERY happy for you Donna!
Title: Re: HELLOOOO from my new kidney!
Post by: lola on June 06, 2008, 04:52:14 PM
 :bandance; :bandance; :yahoo; :yahoo; :grouphug;
Title: Re: HELLOOOO from my new kidney!
Post by: vandie on June 06, 2008, 05:10:24 PM
Wonderful news.    :yahoo;
Title: Re: HELLOOOO from my new kidney!
Post by: paris on June 06, 2008, 05:16:28 PM
So glad to hear you are doing good.  Looking forward to seeing pictures.  A new kidney---how fantastic :2thumbsup;
Title: Re: HELLOOOO from my new kidney!
Post by: okarol on June 06, 2008, 06:38:50 PM

I spoke on the phone with Donnia earlier today and she sounded great! She was very upbeat and it sounds like everything is working perfectly (except I think she said she hadn't slept since the surgery!)
Her donor already went home - a 2 1/2 hour drive - and with NO narcotics! Wow!

I hope you both have a speedy recovery!  :cuddle;
Title: Re: HELLOOOO from my new kidney!
Post by: kimcanada on June 06, 2008, 06:42:30 PM
OMG the donor already went home???? my god thats fast isn't it?>
Title: Re: HELLOOOO from my new kidney!
Post by: st789 on June 06, 2008, 06:47:04 PM
Congratulations!!!!
Title: Re: HELLOOOO from my new kidney!
Post by: okarol on June 06, 2008, 06:49:20 PM
Quote from: kimcanada on June 06, 2008, 06:42:30 PM
OMG the donor already went home???? my god thats fast isn't it?>

It is fast. Her donor had planned to stay a couple days in a hotel, but decided she and her family would be more comfortable at home.
 Jenna's donor was 2 days in the hospital.
Title: Re: HELLOOOO from my new kidney!
Post by: kimcanada on June 06, 2008, 06:58:29 PM
wow i never would have thought that fast, I am super glad everything is going so well 
Title: Re: HELLOOOO from my new kidney!
Post by: stauffenberg on June 06, 2008, 07:27:03 PM
Keep us posted on the creatinine level.  Drink lots of fluids and then the kidney should wake up get the creatinine down to the 0.8 to 1.3 range.
Title: Re: HELLOOOO from my new kidney!
Post by: jbeany on June 06, 2008, 07:56:03 PM
Hurray!  Wonderful news!
Title: Re: HELLOOOO from my new kidney!
Post by: Lori1851 on June 06, 2008, 08:05:53 PM
  :2thumbsup; Thank you Lord!!!!!!! I am so excited for you!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! :yahoo;
Lori/Indiana :beer1;
Title: Re: HELLOOOO from my new kidney!
Post by: xtrememoosetrax on June 06, 2008, 08:46:49 PM
 :yahoo; Great news, Donnia!! Wishing you the very best!  :clap;
Title: Re: HELLOOOO from my new kidney!
Post by: tamara on June 06, 2008, 08:49:03 PM
Congratulations, so happy for ya  :clap;  :clap;  :clap;   :yahoo;  :yahoo;  :yahoo;   :grouphug;  :grouphug;  :grouphug;  :cuddle; :cuddle; :cuddle;
Title: Re: HELLOOOO from my new kidney!
Post by: rose1999 on June 06, 2008, 11:18:34 PM
:yahoo; Fantastic news, glad it went so wellfor both of you - great to have a good news story, may your new kidney go from strength to strength  :grouphug;
Title: Re: HELLOOOO from my new kidney!
Post by: donnia on June 07, 2008, 08:10:04 AM
Yes, my doinor went home yesterday, by choice.  she is one tough cookie.   

Real quick update:   creat is down to 1.3
Title: Re: HELLOOOO from my new kidney!
Post by: kimcanada on June 07, 2008, 08:16:54 AM
:bandance; to say I am excited for you Donna is todays understatement!!!!   :bandance;
Title: Re: HELLOOOO from my new kidney!
Post by: Psim on June 07, 2008, 09:25:47 AM
This is so great! I'm glad you're doing so well -- and your donor too. I guess your new kidney will be tough like your donor!
Title: Re: HELLOOOO from my new kidney!
Post by: Sluff on June 07, 2008, 09:40:20 AM
Congratulations!! hope it lasts a lifetime.
Title: Re: HELLOOOO from my new kidney!
Post by: David13 on June 07, 2008, 10:30:54 AM
What incredibly wonderful news! 
Title: Re: HELLOOOO from my new kidney!
Post by: Ohio Buckeye on June 07, 2008, 11:47:19 AM
Wow, I'm glad you and your donor are doing so well.
Congratulations.   :clap;  :clap;  :bandance;  :bandance;
Title: Re: HELLOOOO from my new kidney!
Post by: KR Cincy on June 07, 2008, 12:20:11 PM
Such happy news!!  Congrats & take care!!
 :clap;
Title: Re: HELLOOOO from my new kidney!
Post by: kellyt on June 07, 2008, 02:23:41 PM
 :clap; :clap; :clap; :clap; :clap; :clap; :clap; :clap; :clap; :clap; :clap; :clap; :clap; :clap;

I am super excited for you!  God Bless Joyce!!!!        I hope this is your first and last transplant!!!!!!    :beer1;
Title: Re: HELLOOOO from my new kidney!
Post by: Romona on June 07, 2008, 02:42:44 PM
 :bandance; :yahoo;
Title: Re: HELLOOOO from my new kidney!
Post by: cambonesegirl on June 07, 2008, 02:50:29 PM
Congratulations! :bandance;
Title: Re: HELLOOOO from my new kidney!
Post by: 2_DallasCowboys on June 07, 2008, 04:15:13 PM
So so glad for you donnia!!   

It is wonderful to read everything went
so well for ya, girl!  And your donor, also,
God bless her

Anne
Title: Re: HELLOOOO from my new kidney!
Post by: kitkatz on June 07, 2008, 04:15:30 PM
Great! Congrats on the new kidney. May it work long and hard for you!  :bandance;
Title: Re: HELLOOOO from my new kidney!
Post by: MyRenalRomance on June 07, 2008, 06:43:03 PM
 :bandance; :bandance; :bandance;  Hello Donnia's NEW KIDNEY! *WELCOME*  :bandance; :bandance; :bandance;

I'm sooooo happy for you Donnia!  Congratulations and best wishes for a speedy recovery.
Please keep us updated.  (I'll be receiving my kidney on June 20th, so I'll be looking forward to hearing about your recovery.)

 :yahoo; :yahoo;  HURRAY FOR DONNIA, HER DONOR & DONNIA'S NEW KIDNEY!  :yahoo; :yahoo;
Title: Re: HELLOOOO from my new kidney!
Post by: thegrammalady on June 07, 2008, 08:38:07 PM
 :clap; super, super, super fantastic
Title: Re: HELLOOOO from my new kidney!
Post by: Mimi on June 07, 2008, 08:55:40 PM
Hello, Donnia's new kidney.  You are so welcome to our group.

Love, Mimi
Title: Re: HELLOOOO from my new kidney!
Post by: okarol on June 07, 2008, 09:55:19 PM

 :yahoo;
Here is a link to Donnia's transplant photo album. You can click on "slideshow" for the show with larger photos.
Go to --> http://picasaweb.google.com/donniaj/DonniaTransplant?authkey=RI5sN0HVDNI
Please let me know if you have trouble viewing it.
Thanks for sharing these Donnia!
Title: Re: HELLOOOO from my new kidney!
Post by: monrein on June 08, 2008, 03:42:16 AM
 :thumbup;  :2thumbsup; :thumbup;
Title: Re: HELLOOOO from my new kidney!
Post by: kellyt on June 08, 2008, 05:04:46 AM
 :thx;   :thumbup;


I forgot to mention how calm they both look!  Like real pros!     :clap;
Title: Re: HELLOOOO from my new kidney!
Post by: xtrememoosetrax on June 08, 2008, 10:04:37 AM
Great pix! Thanks for sharing!  :thumbup;
Title: Re: HELLOOOO from my new kidney!
Post by: 2_DallasCowboys on June 08, 2008, 10:17:15 AM
Thanks for the wonderful pics!

Again, so happy that all went so well for ya! :clap;

Anne
Title: Re: HELLOOOO from my new kidney!
Post by: Ginger on June 08, 2008, 01:36:26 PM
Wonderful photos.  Congratulations and many happy and healthy years with your new kidney.
Title: Re: HELLOOOO from my new kidney!
Post by: skyedogrocks on June 10, 2008, 05:16:42 AM
CONGRATS Donnia!!!!  That is awesome news!  I LOVE hearing great stories like this.  You go girl!!!!  :bow; :bandance;
Title: Re: HELLOOOO from my new kidney!
Post by: Sunny on June 10, 2008, 02:19:37 PM
Thank you for sharing your experience with great pictures.
Good to hear you are both doing well.
Title: Re: HELLOOOO from my new kidney!
Post by: pelagia on June 11, 2008, 08:22:15 AM
Thanks for sharing the great pictures Donnia!  Hope you and Joyce are both feeling well and healing quickly.
Title: Re: HELLOOOO from my new kidney!
Post by: MyRenalRomance on June 11, 2008, 09:08:29 AM
Thanks for sharing the photos!!  :clap;
Title: Re: HELLOOOO from my new kidney!
Post by: kidney4traci on June 11, 2008, 11:58:43 AM
Congrats!!  Great photo album!  Thanks for sharing and here's to a long healthy life with your new kidney!! :clap; :clap; :beer1;(water not beer!!!)
Title: Re: HELLOOOO from my new kidney!
Post by: donnia on June 11, 2008, 06:34:25 PM
Whew!  Thank you everyone!  I am going to go back and read everyone's transplant stories.... today I had a pretty bad day.  I am going to post my update that  I emailed to people.  

Please, if anyone has words of wisdom, I could use them now! 


I had a pretty bad night.  Couldn't sleep well.  My breathing really bothers me, but I continue to use the lung exerciser thing.  My temperature has fluctuated between 100.3 and normal.  My donor tested positive for a cold virus in the past and I tested negative.  So to prevent me from getting this virus I need a medication called Valcyte, I believe.  Well, the social worker is working on getting me assistance with this because after insurance pays I still owe over $550.  I will need to take it for 3 months!  That is besides all the other medications, hotel, food and medical bills that are mounting!    The social worker did get me one weeks worth for now (thank God for great social workers!), and hoping the pharmaceutical company will assist with it.  I don't see how they wouldn't.  I haven't even received one disability check  yet and when i do it will be under $700 per month.  Juan has a great job with a great company, Robert Madden Ind.,  (who by the way has been WONDERFUL!  I can not thank them enough for letting Juan come back to Lubbock to be with me and for everything else they are doing for us!!!), but he just celebrated his 1 year anniversary and is still at the bottom of the totem pole, so to say.  Sooo... that does look good for us. 

Anyways, my point is, I had a bad night and a pretty bad day too.  They think it is because I need this medicine,  I should get it within the hour so hopefully that will help.  ( I did get it but I don't really know if it is helping yet... lol).  The great news of this email is, my husband is back here with me and it makes  all the difference in the world. The great - great news is that my creatinine level is still 1.1 so Joyce's kidney is working great.

 

I am taking 40 of Lasix for the next 3 days, as I still have quite a bit of fluids on me.  Hopefully when we get that off it will help my breathing.

 

Sorry this is kinda a bummer of an update, but I do feel better getting all that off my chest.  They told me I would have bad days, I guess this is one of them.

 

Please say a prayer that the new medication they are trying to get me will come through and it will make me feel better.  (Heard from the pharmaceutical co. and it appears that we qualify... just got to get our $$$  records to them)

 

Especially say a prayer for a speedy recovery for Joyce, my donor, my hero.  I heard from her today and she is feeling better by the day.

 

We thank each and every one of you who have been helping and especially praying.   

 

Title: Re: HELLOOOO from my new kidney!
Post by: okarol on June 11, 2008, 07:01:11 PM
ValcyteŽ (valganciclovir) is an oral antiviral agent that is highly active against human herpesvirus 5, also known as cytomegalovirus (CMV).

Valcyte is used in immunocompromised patients to prevent CMV disease in kidney, heart and kidney-pancreas solid organ transplant (SOT) recipients at high risk.

Jenna and her donor both tested negative for CMV, but Jenna was still given Valcyte as a precaution (standard protocol at her center.) They started it immediately following the surgery.

I hope the financial stuff gets handled. It seems like the social worker should have helped prepare more for this.

Do they say the cause of your fever? How are your labs?

Sending you lots of LOVE and prayers Donnia!  :cuddle;
Title: Re: HELLOOOO from my new kidney!
Post by: pelagia on June 11, 2008, 07:10:09 PM
So sorry to hear that you had a bad day and night.  You are dealing with many things and trying to heal.  It's more than a full plate.  I hope you have a better night tonight  :cuddle;



 
Title: Re: HELLOOOO from my new kidney!
Post by: donnia on June 11, 2008, 07:29:40 PM
Quote from: okarol on June 11, 2008, 07:01:11 PM
ValcyteŽ (valganciclovir) is an oral antiviral agent that is highly active against human herpesvirus 5, also known as cytomegalovirus (CMV).

Valcyte is used in immunocompromised patients to prevent CMV disease in kidney, heart and kidney-pancreas solid organ transplant (SOT) recipients at high risk.

Jenna and her donor both tested negative for CMV, but Jenna was still given Valcyte as a precaution (standard protocol at her center.) They started it immediately following the surgery.

I hope the financial stuff gets handled. It seems like the social worker should have helped prepare more for this.

Do they say the cause of your fever? How are your labs?

Sending you lots of LOVE and prayers Donnia!  :cuddle;

Thanks so much for this!!! 

My creatinine is 1.1 .  My WBC is elevated at 15.  My social worker did get me 1 week at no cost.  I talked to the pharmaceutical company and it looks like I will qualify for help.  How long did Jenna have to take the Valcyte?
Title: Re: HELLOOOO from my new kidney!
Post by: pelagia on June 11, 2008, 08:09:36 PM
My husband also tested CMV negative while his donor is CMV positive, so he is has been taking Valcyte (first month after transplant).  He will stay on for 3 months. Apparently it's one of the only drugs they have that is really effective against CMV infections, but if you stay on longer than 3 months you develop resistance (or tolerance, I can't remember for sure which it is).  I read an article on the web that said they are seeing more CMV infections at 5 or 6 months now that patients are taking Valcyte during first 3 months.  :banghead;.  This is not something the transplant clinic discussed with us in any detail before the surgery, so we are still learning.  In fact, my husband had more than one matching donor and we don't even know how the other donor tested for CMV. 
Title: Re: HELLOOOO from my new kidney!
Post by: Laurie on June 11, 2008, 08:37:12 PM
I'm sorry you're having a bad day. I had the same problem with Valcyte. They told me my co-pay would be $623.00 a month. My social worker had me apply for a grant from the American Kidney Fund and Southwest Transplant Foundation. So far I have received $250.00 from the Southwest Transplant Foundation.
I have since found out that my insurance company considers Valcyte to be a specialty drug and requires it to be filled with a specialty pharmacy, so if I use their pharmacy the cost will be $100.00 per month. (Thank goodness).
Maybe you could check with your insurance company.
I hope you have a better day tomorrow and you get assistance with you meds.  :grouphug;
Title: Re: HELLOOOO from my new kidney!
Post by: okarol on June 11, 2008, 08:45:56 PM

Jenna was on Valcyte for 3 months.

Roche has a patient assistance program for CellCept and Valcyte too.

I found out about it here: http://www.needymeds.com/generic_list.taf?_function=name&name=valganciclovir
which leads you to the program site here:
http://www.rocheusa.com/programs/patientassist.asp

You should contact them right away.
Title: Re: HELLOOOO from my new kidney!
Post by: kidney4traci on June 11, 2008, 09:14:02 PM
Donnia, good to hear from you, and sorry you are stressed over meds and insurance.  Karol, you are just an angel, and so helpful with your experience and knowledge.  I hope you get this all worked out - the hospital staff should have prepared you more for what meds might you need and the coverage you had,etc.  Seems they were slacking off.   Glad to hear the new kidney is working!!  Are you drinking lots of water yet?
Title: Re: HELLOOOO from my new kidney!
Post by: donnia on June 12, 2008, 04:40:52 AM
I am drinking quite  a bit of water, but because of my fluids that I still have on from surgery ( about 8 lbs worth now) I try not to go too far.  They have me on 40 of Lasix to draw those fluids off.  I think when we get that off, I  will feel more comfortable drinking,
Title: Re: HELLOOOO from my new kidney!
Post by: twirl on June 12, 2008, 04:50:11 AM
please drink a big glass of water for me
so happy for you
hang in there
God bless you and your donor
 ;D
Title: Re: HELLOOOO from my new kidney!
Post by: Bajanne on June 12, 2008, 06:13:37 AM
Belated congratulations on your new kidney!! :yahoo; :yahoo; :yahoo;

So sorry that you had a bad day, but I am glad that you can share it with us and so our caring thoughts and prayers are with you all the way.

I am praying that everything works out well for you.  I appreciate your donor very much - what a wonderful person!!!

Keep on keeping on!!   :cuddle;
Title: Re: HELLOOOO from my new kidney!
Post by: MyssAnne on June 12, 2008, 06:56:03 AM
Definitely, my congrats on a good transplant, but sucks to the medical community for loading you with the pressure of medical bills!!
Duh!!!

Twits.  Listen to Karol, she knows whereof she speaks, as do a lot of people on here.  Apply everywhere you can, or have your SW do it for you!!! SHE'S not recuperating!!!!
Title: Re: HELLOOOO from my new kidney!
Post by: monrein on June 17, 2008, 08:33:19 AM
I hope things are looking up a bit Donnia, that the fluid is coming off, the creatinine staying down and the financial situation getting sorted out.  There are so many factors that it can be overwhelming.  Hugs to you and of course to Joyce.
Title: Re: HELLOOOO from my new kidney!
Post by: angela515 on June 17, 2008, 10:46:37 AM
I don't know why they troubled you by telling you about the cost of the medicine because my social worker told me before hand Valcyte pays for everything 100% if your insurance don't, and you take it for 3 months post transplant.

Anyways, glad your creatnine is doing good, and yes, you will have good and bad days as is life. Congrats!  :grouphug;
Title: Re: HELLOOOO from my new kidney!
Post by: donnia on June 17, 2008, 03:01:04 PM
Things are going much better.  I got the funding for the Valcyte, so that stress is gone... labs are looking great!  Just got word my creatinine has gone down from 1.1 to 1.0   :yahoo;
Title: Re: HELLOOOO from my new kidney!
Post by: pelagia on June 17, 2008, 03:09:26 PM
great news Donnia, about the Valcyte and the creatinine  :2thumbsup;
Title: Re: HELLOOOO from my new kidney!
Post by: donnia on June 20, 2008, 03:28:01 PM
Well, I am finally home and loving it.  I never realized exactly how comfortable my bed is!!  I guess it was worth the $$$$  I spent for it  :2thumbsup;

I am feeling good, but tired... took a 2 hour nap today at lunch.  I talked to my transplant coordinator and she said my Phosphorus level is still a little low but going up.... I think it was 2.1 today.

My WBC count on Wednesday was high at 16 so we were watching that closely... today it was 9.9 I think.  My creatinine is up from 1.0 to 1.1 .... which freaked me out, but my TC said that is normal, it could be just what I ate yesterday.

I am starting to have cramps in my hands and feet.   I will talk to my TC about that on Monday.

Title: Re: HELLOOOO from my new kidney!
Post by: pelagia on June 20, 2008, 03:45:22 PM
So happy to hear that you are home.  :2thumbsup;

My husband has been having cramps in his hands and feet too.  He's going to ask about it when he has blood drawn on Monday.  Maybe we can compare.
Title: Re: HELLOOOO from my new kidney!
Post by: waitlisted on June 20, 2008, 08:24:39 PM
Late congratulations on the new Kidney!!!  :yahoo;
Title: Re: HELLOOOO from my new kidney!
Post by: pelagia on December 06, 2008, 09:28:15 AM
:flower; :flower; Happy 6 month Kidneyversary Donnia  :flower; :flower;
 :cheer: :cheer: :cheer: :cheer: :cheer: :cheer: :cheer: :cheer: :cheer:
 :bandance; :bandance; :bandance; :bandance; :bandance; :bandance;
 :yahoo; :yahoo; :yahoo; :yahoo; :yahoo; :yahoo; :yahoo; :yahoo;
Title: Re: HELLOOOO from my new kidney!
Post by: donnia on December 15, 2008, 07:17:00 PM
AAAWWWWW!  Thank you so much!!!  It is so hard to believe it has already been 6 months.  I went to my tx doctor on Nov. 22 and they did blood work.  My Cylex level was high (701).  They like it between 250-500.  They said under 250 you have too much risk of infection and over 500 you have too much risk of rejection.  I have to go back this month to redo the labs.  They did say that most of the Cylex labs were high so they think it is lab error.  I am pretty nervous about it.
Title: Re: HELLOOOO from my new kidney!
Post by: kellyt on December 15, 2008, 08:01:53 PM
I hope it was a lab error!  I'll be thinking of you!