The Treasure you seek is within...yeah, right!

[Treasure]

Greetings, fellow (dialysis) haters!

I'm Michelle, or  "Treasure"... this is my introduction to the group.

I'm 44, female and I bite-- though, without leaving marks...unless you want me to... :

My kidneys started to fail about 10 years ago. I was feeling a bit tired and went to see one of the campus docs to have everything checked out. I was absolutely stunned to find out that my kidneys were starting to fail-- especially since I had not been sick in over 16 years with anything besides two bouts with strep throat and the having the flu-- twice.  In spite of the diagnosis, my creatinine stayed pretty stable for 8 years. I wasn't feeling my usual peppy self, but since my condition did not interfere with me homeschooling four children, handling my own divorce,  and attending U.C. Berkeley at the same time, I kept doing what I usually do.

Summer of 2004, though, things started to progress (or digress, rather) and my doctor mentioned that the time of dialysis was drawing near. Inwardly I was adamant that I WOULD NOT go on dialysis-- seeing as I have several family members that were willing to donate a kidney. However, I didn't bring up my transplant plans to my doctor as soon as the plans had started percolating in my brain.  I started dialysis in September 2004, and started my workup for a kidney transplant at about the same time

I had a temp catheter installed because both me and my Doctor thought it would be  a short time until my transplant...but the transplanting facility had other ideas. They wanted me lose about 20lbs before they would go any further into my workup. This was very frustrating, because no one ever mentioned the previous months that I would  need to lose weight. Thankfully, I was already  working on losing weight for my personal wellbeing...and had already lost about 30lbs. I was still pissed though, at this setback.  There were a lot of other hurdles to getting the go ahead-- like having a gazillion different tests done (some of them twice..and most of them I would have to pay 20% of...do you know how much a treadmill test costs? sheesh!)

In the meantime, I started in-center dialysis, but hated every minute of it during the incenter time ...and practically every other minute throughout the day. I DO NOT have a "dialysis mentality." I am not the kind of person who likes to sit around in a clinic. I am not the kind of person who likes to receive my medical care in plain sight of others...nor witness other people receiving their care.  I don't work well with paternalistic doctors and the infantalization of patients makes me livid. So, I made it clear that dialysis would have to  be temporary for me...or I would be seeking out a hospice center in some tropical locale. Bermuda, anyone?

I started out in a center near my home...but when my insurance carrier changed, I took advantage of the services of a more patient-friendly dialysis center. That helped me stop from hourly obsessing about walking away from dialysis. At this point, it was more like a daily obsession (hehehe).   

I looked into doing P.D., but my anatomy was uncooperative. But I f found out that there was a center an hour away that supported home hemodialysis, so I made plans to transfer to that modality.

 I started on the NxStage in September 2005, completing my training in a record two weeks. It was rough going those following three months because my partner/husband did not want to help me with my transfers...and I had just gone back to work full-time and spent the entire day working at a stressful job and doing 4 hour dialysis sessions, 6 days a week. 

Thankfully, though, by the the end of the year, it was kidney transplant time...yay!  I went for my final transplant workup on January 6, 2006. That evening I had a scare with my catheter and spent all night in emergency. Between January 6th and the 13th, I had an additional catheter failure, had a temp cath put in my neck...which failed...had another one put in...that also failed.

I was still determined, though, to have my transplant...and I did... on Friday, January 13th. I'm not superstitious...but, damned... things did not go smoothly... I was terribly anemic that day, after all the bleedouts with the four catheter failures...and I had to have two transfusions during the surgery. I survived the surgery, though...as did my donor, my marvelous eldest son Anthony.

My kidney was functioning right off the bat...the only problem I had, though, was wound healing. My wound kept popping open for the next couple of weeks, until we finally got a handle on it.

I took two months off to heal up and returned to work in early March. 10 days after I returned to work, my urine started turning foamy...and my creatinine had started to rise. I went in for a biopsy and we found that I have Focal Segmental Glomerulosclerosis. The FSGS had gone undiscovered by the previous pre-transplant biopsy I had (remind me to tell you about the misdiagnosis sometime...sheesh!)

Over the next six months we tried a couple of experimental treatments to try to arrest the FSGS, but alas, nothing worked for more than a few days. After one of the treatments, I gained 30 lbs of fluid, that wasn't relieved until we all gave up and I returned to in-center dialysis in September 2006. Back to square one again...

It's now mid- November... I still have Anthony's kidney, but its likely I'm rejecting it right now... since I have been off my immunosuppressants for 2.5 weeks now.  There are a few rays of hope...tomorrow I return to the San Jose clinic where I did Nxstage before...and I hope to return to that....until a treatment for FSGS becomes available (I have high hopes...because my doctor is a leading researching in that disease and he's actively seeking a treatment for it...and dammit, I'm the Supreme Goddess Bitch of the Universe and I demand a cure!)

So, that the SHORT version of my introduction. Sorry to bore you with the details...just be thankful I have shared it this way. I intend to put the whole sordid tale in my tell-all autobiography, "Not so much... my life as the Supreme Goddess..." -- you get the picture.

Thanks for having me...

Michelle ~ Treasure. 

[Zach]

Glad to have you here, Michelle!
 

[Epoman]

Welcome Treasure,

Thank you so much for you awesome "introduction" I love to see members take the time to do a huge introduction so we really get to know them. I think you will make a wonderful addition to this site. You have been through so much, so you will be able to help so many with your words.

Be sure to checkout all of our sister-sites:

http://www.dialysischat.com
http://www.ilovenxstage.com
http://www.mykidneygear.com

Also think about becoming a "Premium Member" as it offers many benefits for just $60 annually which is just $5.00 a month and your money helps support the site financially. You can read more about becoming a Premium member at these link:

http://ihatedialysis.com/forum/index.php?topic=1162.0 & http://ihatedialysis.com/forum/index.php?topic=1482.0

Welcome to the site and enjoy your stay. 

- Epoman
Owner/Admin

[anja]

 , Treasure !  I am sure your book will be riviting reading !  Glad you have joined us, sure you will have lots to share along the way.

[Joe Paul]

Welcome Treasure, good to have you aboard.

[angieskidney]

  Treasure!

[alrightstill]

Me likes the way you think!   

I'm new myself, but welcome!! 

[Sluff]

  Michelle cool introduction.

[vandie]

 

[paris]

Also have FSGS and related to alot you said in your post.  I enjoyed reading it. 

[jbeany]

 

[mallory]

Welcome, Treasure!  That was a great first post, look forward to hearing more from you!

[Fighter]

Hi treasure, I'm not the Supreme God of anything, but I also demand a cure...

Welcome to the site! 

[charee]

 

[DeLana]

Welcome, Michelle!

What a story!  You have been through a lot.  You must be so proud of your son Anthony; what an incredible thing for a young man to do. 

Good to have you here.

DeLana   

[boxman55]

welcome Treasure

[Rerun]

What a Treasure!  Glad you found us and Welcome to our site.  I'm glad to finally meet someone else who obsesses over how and when they are going to quit dialysis.  I've been doing that for 20 years!!    

If they couldn't put in a catheter what access do you have?

[goofynina]

Hey Hey Girlfriend,  i like your style,  just wanted to Welcome you to only the best website on the net regarding this matter     Keep on keepin' on girlfriend and remember, we are here for you too 

[Black]

Great intro!!

[Treasure]

Thanks for the warm welcomes, everyone   

Just wanted to  a bit.

Monday, I'm having my nephrectomy-- on my transplanted kidney. Hmmm...maybe I can give it back to my son-- kinda like "regifting" hehehe...


Though I have only been on here a short time, this place feels like home and I will miss all the funny and informative posts.

Well...Happy Thanksgiving to those that celebrate that... and Happy non-Thanksgiving to everyone else...for every other day that isn't Thanksgiving..

now...that should hold things over until Festivus...

<smoochies>

Michelle  ~  Treasure    <~~~~~~ will be purposely letting her ass hang out of her hospital gown because she's HAWT!!!111!1!

[vandie]

Thanks for the warm welcomes, everyone   

Just wanted to  a bit.

Monday, I'm having my nephrectomy-- on my transplanted kidney. Hmmm...maybe I can give it back to my son-- kinda like "regifting" hehehe...


Though I have only been on here a short time, this place feels like home and I will miss all the funny and informative posts.

Well...Happy Thanksgiving to those that celebrate that... and Happy non-Thanksgiving to everyone else...for every other day that isn't Thanksgiving..

now...that should hold things over until Festivus...

<smoochies>

Michelle  ~  Treasure    <~~~~~~ will be purposely letting her ass hang out of her hospital gown because she's HAWT!!!111!1!

Good luck on Monday.  We will be thinking about you.

[anja]

Best of luck, Vandie, on the 'coming out' party on Monday!  Be keeping you in my thoughts!

[vandie]

Best of luck, Vandie, on the 'coming out' party on Monday!  Be keeping you in my thoughts!

I appreciate the good wishes, but it's Treasure that needs them.  She's the one getting the nephrectomy.
 

[angieskidney]

Best of luck, Vandie, on the 'coming out' party on Monday!  Be keeping you in my thoughts!

I appreciate the good wishes, but it's Treasure that needs them.  She's the one getting the nephrectomy.
 

I had a bilateral Nephrectomy. Painful but as long as you don't piggyback any kids like I did right after you should be alright!  Good luck!

[Bajanne]

Hi, sister Michelle. This is certainly just the community for you.  We already have some real characters here and we have space for more.  Like USA Network, 'Characters Welcome'  Looking forward to hearing more from you. This site was a real Godsend to me as I came upon it just as I was reeling from my diagnosis of kidney failure.  It saw me through my first days of dialysis, and I am eternally grateful.