I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Wenchie58 on December 29, 2008, 11:54:43 AM
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I have had kidney "issues" my entire life and the word transplant always loomed on the horizon, where I had hoped it would stay. I can't and won't complain because I have been lucky enough so far to escape the "D machine".
I was listed summer of 2007, a long and trying process, but at least after the approval I knew I was healthy!
On 10/22/08 I was at work and got the call....Vicki, we need to make sure you're available. There's a kidney..keep your cell phone handy, we will call you back. Needless to say...not much work got done after that. It took 8 hours for them to call back and say that a patient with "more need" got the kidney. It was a let down, but I understood the "need" thing and could accept that since I was still functioning.
MUCH to my shock on 10/24 at 5 am I got another call...no standby, no question, "Come to the hospital...we have a kidney for you!"
Anyone who has gotten that call knows the gazillion thoughts that run through your head at that point. I went, they processed me and I went into surgery at 10am. The surgery went well and the new kidney..which I affectionately named "KALVIN"...upped my urine output remarkably!
I was out of bed in 12 hours...moving slowly, but up and moving, with all my wires, tubes and caths. The docs were happy, the family was happy, I was happy. The blood work was not happy. My creatine levels refused to drop, white count went up, potassium levels went WAY up. The doctor came to me the morning of 10/30 and said...we need to biopsy the new kidney, something isn't right.
The biopsy showed rejection...now I know NOTHING about different types of rejection, but the doc said...most everyone has a one kind of rejection, you have both. Your antibodies are beating the hell out of the new kidney. Poor KALVIN! October 31st I had my first session of plasma pheresis (what an interesting lesson in medicine). The nurses in pheresis were the best, explaining everything, answering my questions and generally making me feel comfortable with the process. I had a second biopsy on November 7th...which showed acute rejection still continuing. Which ultimately was a good thing...I ended up having 12 sessions over the next three weeks. Along with the pheresis I had 2 sessions of Ritoxin(sp), 4 units of blood and 11 sessions of Cytogam (IVIG). The meds made me feel a bit crappy, but all worth it in the long run. My creatine dropped to 1.3 after the plasmapheresis and my mean little antibodies were under control. I was at the time visiting the clinic daily and was thankful that my transplant hospital is only an hour away.
Then the creatine crept up...and crept up til it got back up to 2.0. CAT scan time....the scan showed fluid in my abdomen that had no explanation. Suspecting a urine leak I went back into the hospital on December 11th...my third stay in 6 weeks and my belly was tapped to remove and send the fluid to pathology. There were two pockets of fluid...one 260 cc's and one 150 ccs pressing on the new kidney and making it NOT a happy camper. Also, not urine, just fluid that my body wasn't absorbing. The next day creatine dropped to 1.9. My creatine has now settled in at 1.5 as of my clinic appointment and blood work this morning, I can live with that. But the rollercoaster continues....the fluid is back...pressing on poor Calvin again. The rollercoaster continues, BUT I breathe, I pee......I smile.
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Great story and all I feel I can say is KEEP ON, KEEPIN ON!!! Also, I LOVE your quote, very inspiring!!!! :)
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Wow what a rollercoaster ride.
Poor Clavin all squished up like that ;)..
I cant imagine getting that first call and being denied. I would have been thinking well there went my chance will be years now........... Only to be called again two days later :clap; :clap;..
Wishing that all goes well and Calvin gets the room he needs to do his job.
PS. also hope you not in to much pain Wenchie :waving;
P&K
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Hope Calvin hangs in there for you.
Thanks for sharing your experience.
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wishing calvin well
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I hope they can get the fluid retention under control and Kalvin continues to pump away. :cuddle;
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I hope the best for you and Kalvin! :grouphug;
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you had your transplant on b-day! :bestwishes;
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Transplant.....$350,000.00
Plasmapharesis treatments.......$175.000.00
Antibiotics.....$50,000.00
Feeling like crap, peeing , and having a working kidney again....priceless
Lifes Adventures not always brought to you by Master Card.
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Wow that's quite a ride! I hope things settle down and you and Kalvin have a long happy relationship! :cuddle;
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Transplant.....$350,000.00
Plasmapharesis treatments.......$175.000.00
Antibiotics.....$50,000.00
Feeling like crap, peeing , and having a working kidney again....priceless
Lifes Adventures not always brought to you by Master Card.
:rofl; :rofl; You've got that SOOOOO right!!!
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Wishing that all goes well and Calvin gets the room he needs to do his job.
PS. also hope you not in to much pain Wenchie :waving;
P&K
Thanks for the well wishes...and no, there's no pain...I FEEL great! Just want to keep the kidney happy....it's been through a lot! :)
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I'm so glad you've had this gift - eve with the trials and tribulations with it - at least so far you've avoided dialysis which a godsend - hopefully you never have to experience that sort of machine in your life!! Fingers crossed they can get the fluid under control... seems like you've battled through so much already it should be OK!!!
Look forward to further - positive - updates!!! :yahoo;
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The ride continues...I am back in the hospital again. Hell, its only my 6th time in 5 months! Antibody issues once again. I am back on HUGE doses of steroids ( here goes the face again.....bye bye wrinkles!!) Gotta find the silver lining in everything, ya know? I got another "hit" of Rituxan....no high there, but if it will get the kidney in gear I guess I will live with it.
I did get one bit of bad news, kinda sorta by accident. I go to a teaching hospital...so there are always groups coming through. One Young doc says....without even thinking...."with all these antibody issues, you would never be allowed another transplant." Never is such a tough word.
Keeping my chins (yes, dammit, I said chinS) up and hoping for the best. It's nice to have all youse guys out there that understand the ups and downs.
A friend said to me...transplants are sometimes like 10 miles of hard road.....I hope I just passed mile marker 9! :flower;
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Oh Wenchi im so sorry to hear this.
You will be in my thoughts and prayers. Get well soon :bestwishes;
:flower; X12
:cuddle; P&K
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:cuddle; Wenchie, I am so, so sorry. I know about the multiple hospital visits, Len has had the same problems now for months. Washington Hospital Center where Len goes is also a teaching hospital and some of those residents, or whatever they are called need lessons on bedside manners. Hope you aren't kept there long. Please keep us posted. We are all thinking and praying for you. :grouphug;
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Wenchie, I'm so sorry about what is going on. I too know about the multiple hospital stays, and they really suck. But we just have to keep going and keep our heads up. I to went to a teaching hospital, and i told the doctors if the students missed up my new kidney ,that they wold have to give me one of theirs. Of course the Docs. knew i was joking, but the students, Ha Ha. I get those pricking feelings also, man it feels like someone is poking me with a hundred needles. I hope everything gets worked out and you can move on. We are praying for you. God Bless You.
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:grouphug; Wenchie - you made me laff with the wrinkles comment - I hope you keep your sense of humor and get through this quickly.
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Wishing the best for you Wenchie girl and hoping like hell that they can manage to get things under control again. BTW, have I ever told you just how much I hate roller coasters? :grouphug; :cuddle; :grouphug;
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Sorry to hear Wenchie.
The next time you see that practicing doc, give him a piece of your mind, teach him something he'll never forget about talking to patients. :boxing; :Kit n Stik; but just don't tell him to kiss your :sir ken; :rofl; :rofl; I hate those hospital gowns!
Hope all goes well there
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You have been fighting so hard and always keep your humor. "Never" is a tough word. I was told by transplant team originally that I would be on the list for 30 years or until hell freezes over. Thanks for giving me hope! :rofl; If your antibodies are donor kidney specific, wouldn't that make a difference in receiving another kidney? Also, students (and lots of doctors) don't know all they think they do. Flip remarks leave permenant damage on us and that "doc" probably hasn't thought about that remark again. One step at a time. And then another. You give such great support to all of us. We are here for you and surround you with love and hugs :grouphug; I wish I could make Kalvin get his act together!
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Big hugs for you and Kalvin!
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Hi Wenchie...
I'm thinking of, and praying for you and the little guy... My friend calls his kidney, please forgive the naughty word... But he calls it the 'Pistol'... :rofl;
Keeping my chins (yes, dammit, I said chinS) up
I'm with you on the side effects os the steroids... I take them for asthma... I've got more chins than a Chinese telephone directory!... And as for hair???... I look like an ape on occasions... My mum just tells me to '"stop complaining, and comb your face!" :rofl; :rofl; :rofl;...
May this be just a little blip, and hopefully you'll be on the road to full recovery very soon...
May God bless and protect you...
Love...
Darth...
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:grouphug;
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Washington Hospital Center where Len goes is also a teaching hospital and some of those residents, or whatever they are called need lessons on bedside manners.
My favorite quote from a resident...
Now I don't do well with the sight of hubby's blood. I am aware of this, and I go by the rule "The doctors should be concentrating on him. Do not create a second problem in the room." So when I'm overly squicked, I step out. One night while recovering from surgery, the surgical residents came in to change his dressing. He started bleeding...and didn't stop. I stepped into the hall. After five minutes or so, one of the residents came out. I inquired how things were going. She replied cheerily -
"Oh, we have a saying in med school. All bleeders stop eventually!"
I fixed her with my gaze. "Yeah, " I replied. "I'm an engineer. There's a similar saying in aeronautical engineering - 'All planes land eventually!'"
I could see it took her a second to realize that I understood the joke.
I don't know how much I can blame them, though. In residency, I think you're probably hit in the face with the realities of sickness and death for the first time. Any human would need a coping mechanism - and humor is among the best, no matter how dark.
I've also learned that, as someone else noted, I may know more about the topic than they do. So while the careless utterances of residents may stick out in your mind - it's not gospel. Advances are being made all the time, and residents are not necessarily even up on the latest.
So I know how these things ring over and over in your mind, but it's not the last word.
- rocker
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Wenchie,
I am truly sorry you are having to go through all that mess AGAIN and like others have said, I do hope you continue to keep your sense of humor because sometimes that is all we have to keep our sanity! Please remember to keep us updated on the "goings on". :cuddle;
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:cuddle; Hope you get those antibodies under control and Kalvin can get back to doing his job!!
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Aww Wenchie hun you're in my thoughts... sorry to hear about this new ride on the rollercoaster... :cuddle; :cuddle; :cuddle; :cuddle;
All I can say about the resident/intern whatever... it's just an opinion and I don't think he knows all the facts. Yes, it is true, a high PRA is toing to make another transplant (should you ever need it) much more difficult - I grant that... however "never" is a stupid thing to say - not only in terms of saying it in front of you or to your face - how does he know?
Heck in a few years they might come up with some sort of procedure/medication etc to deal with that issue, or make it easier.
So don't take his "never" as bad news... because like James Bond "Never say Never again!"
:grouphug; :grouphug; :grouphug; :grouphug;
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A swift boot in the butt to the idiot resident!
Hang in there, Wenchie!
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:cuddle; Hang in there Wenchie girl. Rollercoasters are meant to fun! :-*
As for the young doctor.... he probably has no idea what he is talking about. :Kit n Stik;
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Just sending some love and support your way :cuddle;
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Sorry I missed your thread Wenchie, been wondering what was going on. I hope things settle down, and your kidney stays with you for a long time :cuddle;
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I am back on HUGE doses of steroids ( here goes the face again.....bye bye wrinkles!!) Gotta find the silver lining in everything, ya know?
Wenchie58, but I LOVE your new photo. You couldn't be cuter. It is amazing how receptive the ears are to steroids! And the hair, definitely cutting edge!
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I did get one bit of bad news, kinda sorta by accident. I go to a teaching hospital...so there are always groups coming through. One Young doc says....without even thinking...."with all these antibody issues, you would never be allowed another transplant." Never is such a tough word.
Don't believe him. A. He's a young doc wannabe, B. Times are always achanging!
A friend said to me...transplants are sometimes like 10 miles of hard road.....I hope I just passed mile marker 9! :flower;
I hope so too. Best wishes to you and Kalvin.
Alene
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How are you doing tonight, wenchie? You are always on my mind --- ;musicalnote; I know, it sounds like a song! Sending you a huge hug :cuddle;
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Thanks to all of you....what a family I have found here!! I am home today...none the worst for wear but also no better. I will go in once a week for four weeks for a nice lil dose of Ritxan. They aren't sure this is going to be the answer...they were honest and told me that I have them stumped. Ritux is the best option they have and it worked on me in the past, so we will try that route again. I keep my attitude positive, have faith in my team and generally hope for the best and prepare for the worst. I am glad I have all of you in my corner....it's like our own lil kidney army...ready to kick ass and take names! :2thumbsup;
<-------- Yikes.....the steroids DID make my ears grow a bit. Why oh why can't it work on boobs? OMG did I type that......it's the drugs I tell ya!! :rofl;
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:rofl; :rofl; :rofl; :rofl; Wenchie.
If only that worked like Viagra for Men. :rofl; :rofl; :rofl; :rofl;
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Don't worry everyone I checked Wenchie's boobs and they are just fine!!!! :rofl; :yahoo; :bow;
stumping them just shows you are unique and wonderful Wenchie!!! :)
:grouphug; :grouphug; :grouphug;
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Great to see you home safely, Wenchie...
Not sure how safe you'll REALLY be with Richard on the prowl, but yell if you need help in keeping him in his place... That vet's appointment can still be arranged, you know, Richard!... :rofl;
Lots of love...
God bless you!...
Darth...
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:boxing; :boxing; Knock that kidney back into shape! Keeping you and Kalvin in my thoughts. :cuddle;
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RM!! Shhhhhhhhhhh some things shouldn't be shared! LOL You're such a nut! :rofl; :rofl; :rofl;
Vet appointment?? Rut roh...that doesn't sound good!
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Yikes.....the steroids DID make my ears grow a bit.
But they've given you a great smile too, Wenchie!... :2thumbsup;
Vet appointment?? Rut roh...that doesn't sound good!
On the plus side, Wenchie... The anaesthetic is pretty good... He won't feel a thing!... :rofl;
Great to see you back!...
God bless...
Darth...
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Wenchie you made me laugh with the "Shut up and go comb your face" comment. I know how THAT is! :rofl; :rofl; :rofl;
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Hi KK...
The 'stop complaining and comb your face' comment came from my mum to me... So typical of her sensitive nature!... :rofl; :rofl; :rofl;...
But the steroids do dreadful things to us... Mine have given me the body of a God... Budda!...
Love...
Darth...
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Sorry Darth, my bad, it was hilarious.
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No apology needed KK...
And you're right, it IS funny... She said that AFTER telling me that I reminded her of someone famous... I said "Who?"... She replied "Osama Bin Laden"... :rofl; :rofl; :rofl;... Oh boy... If I had feelings, I'd be hurt!!!...
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YEah I bet. I had a kid mention my beard the other day. I told him I was on meds and to lay the hell off nicely.
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YEah I bet. I had a kid mention my beard the other day. I told him I was on meds and to lay the hell off nicely.
Ha Ha!!!... What a great story.... Just the kind of thing I get all the time... I had a scratch on my chin ( everything takes much longer to heal and looks much worse when you've EDS, and the dog needs to clip his nails!). Anyway, this precocious little brat yelled at the top of his voice "What happened to that woman's face?". I couldn't resist smiling my sweetest smile and saying "I cut myself shaving!"... The parents were mortified!.... :rofl; :rofl; :rofl;
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I keep sending good thoughts your way, Wenchie--- can you feel them? :cuddle; :cuddle; :cuddle;
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Okay so yeah somehow I have missed this post. Sorry. But I hope your feeling okay. I am worried about you. Yesterday you were trying to stay out of the hospital and today I haven't seen you around. You doing alright? Your in my thoughts. :cuddle;
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Hoping she is doing ok. She has been having a rough time. Chat room isn't the same without Wenchie. :cuddle;
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Sorry guys I have been busy checking Wenchie out... she seems fine to me!!! :rofl; I am sure she will be back on deck soon :)
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Where the heck have I been? I hope things are headed in the right direction by now. :cuddle;
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Thanks for all the good thoughts folks...they SO help! I am receiving Rituxan treatments to treat rejection once again. Pesky Donor Specific Antibodies! Stubborn little SOBs!!
Got a bit of good news and bad news last week. My hemoglobin is down to 7.2...so now I also see a hematologist....guess I am running out of blood.
BUT...........my creat dropped from 3.2 to 2.5....so I know that "lil kidney that could" is still trying to do the job....he had me worried there for a few weeks that he had given up on me!
I am keeping my chins (yes, furry chins) up and hoping for the best! Thanks to all of you. I love ya!!!!
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Sending lots of love, good thoughts, and a couple of prayers your way :cuddle;