OOOPS! I was supposed to make this my first post but...

[DianaJean6]

Hello, I'm Diana and this is my second post on my very first message board.  Is that what you call this?  Anyway, my first post was to the Dr. who claims to be able to stop kidney disease in diabetics.  I couldn't hold it..sorry.

I have had diabetes since 1995.  In March 1998 I had DKA was in a coma for about a week.  When I came to, the Doctor said "welcome back, you did a fine job of nearly killing yourself."

In September 1998 I had cataracts removed from both eyes.

In 2002, I had my first body part removed - my fourth toe on my left foot.  My first words were - Do you think I can get a 10% discount on my pedicure?

In 2003, I got an ulcer on the bottom of my left foot. It would not heal no matter what we did.  I spent a fortune in bandages.

2004, I got infection in my bones of my right foot.  That was my good foot!!!  I got a blister from some sandals when I went into the hospital to get it cleaned up and ended up with MRSA.  I was put on vancomycn (not in the spell check dictionary)... thus the beginning of the attack on my kidneys.  I ended up with a below the knee amputation of my good leg.

2005, I am put in a wheelchair because the ulcer on my left foot will never heal as long as I walk on it.  Six moths later it finally closes up but within two weeks of walking it is open and as big as it ever was.  I was referred to UCSF and got a skin transplant.  They used a newborn bay's foreskin.  Cool, huh!

2006, ulcer is healed however I developed in infection in my heal.  I don't know how it happened.  By this time I had been in the hospital several times with several courses of vancomycn.  My left leg is amputated below the knee.  Now I am wheelchair dependant. By this time between all of the hardcore antibiotics and the diabetes my kidneys have taken a big hit.  My creatinine is 3 but is bounces back to 1.6 before I go home.

2008 I get sick and can't get my blood sugar undercontrol.  I go in the hospital and find my kidneys are having trouble again.  The creatinine hovers between 2 and 3.  My primary says there is no medicine or diet to help my kidneys we just watch it.

October 2009 I get the Swine Flu.  I go to the hospital and find I have ESKD.  I see my very first Kidney doctor and he tells me I must go on dialysis right now.  My primary was surprised since I still pee a lot and my creatinine in holding at 3.  The thing is all i pee is water.  I have high potassium and phosphates.  I asked the kidney doc how log to I have?  I truly believed with my whole heart I would be dead within 3 years. 

June 2010 I'm having my dialysis treatment when this "B" of a social worker says to me in a condisending voice "What are you doing eating watermelon! It s a high potassium food and you should not be eating it.  Haven't you seen a Dietitian!"  I told her yes I had and she never told me I could not eat watermelon!  The next day I googled the amount of potassium in watermelon so I could throw it across her face.  I also googled "how  much phosphates does Renagel bind."  And here I am.  This web site was in the top ten.  I saw "I Hate Dialysis" in bold letters. Of course, I clicked on it.  The post it directed me to was written by a man who has been on dialysis for 28 years.  Boy, I needed to see that. 

I have been hooked for days.  I read and read and read.  I do nocturnal dialysis so I read all night and had to work the next day.  I read at work too.  So here I am...Diana; age 52; female; from San Francisco.  Thank you.

[monrein]

   to IHD Diana and I look forward to all your input, your experiences and also to you learning whatever you want to from all of us here.  It is a great site as you've already discovered but it's real strength is the members...each and every one of them. 
You've had a really rough time of it and I hope that things get better for you all around.

[billybags]

Welcome DianaJean6, you chose the right site, what took you so long? You sound like you have had a rough time, lets hope things improve for you.Looking forward to reading your posts.

[cariad]

  Diana. You sound like a fighter. We like that around here. I love San Francisco - used to live on Leavenworth and Pacific, worked in theatre in the tenderloin, and went to UCSF for post-transplant clinic for several years.

I hope you find this site as helpful and supportive as I do. And that better days are in store for you.

[MooseMom]

No, thank YOU!  Thanks for joining us and for giving us the opportunity to learn from you.  Each of our members have something to tell.

How are you feeling on a day to day basis?  It sounds like you were quite surprised to have to go on dialysis; were you feeling unwell?  I know D is difficult, but is it improving your life?  Do you do nocturnal each night at home or in a clinic, or how does that work (I'm not that familiar with nocturnal)?

What kind of work do you do?

Do I ask too many questions?

[Rerun]

Diana I'm so glad you found us.  We are here for you.  Great intro.  Yeah, Zach has been on Dialysis for 28+ years and know a lot.  Sounds like you have been through war!  Hang in there.

Rerun, Moderator     

[Bajanne]

Welcome to our community!  What a great intro!!  I see right away that you are an IHD person!  I am so looking forward to hearing more from you.  This site is the place for information, support and even fun.  You will soon discover that this is much more that just a website at the top of the Google list - it is a real genuine family sharing and caring.  Your duty is to take advantage of all the site has to offer.  Keep reading and, PLEASE, keep posting. 





Bajanne, Moderator

[Jean]

Absolutely outstanding intro. So glad you found us. You sure have had a rough time of it and I do hope things improve for you and soon. Good sense of humor tho.   

[galvo]

G'day Diana and . You've come to the right spot.

[DianaJean6]

Cariad: I tried to insert aquote but some how my reply got mixed up with it.

Yes, I love San Francisco, too.  I Lived in the TL for about 4 years.  I also lived in the Mission, Lakeview, Hunter's Point and I grew up in the Sunset.  I work in SF; all of my doctors are in SF; I will be going to UCSF for the transplant thing but my apartment is in Oakland. 

I'm glad I found this sight.  I have never posted or belong to a message board.  I have never done the chat room thing.  I'm hooked on this site though.  when I'm not on it reading it, I'm thinking about it.  thanks for all your welcomes!

[DianaJean6]

How are you feeling on a day to day basis?  It sounds like you were quite surprised to have to go on dialysis; were you feeling unwell?  I know D is difficult, but is it improving your life?  Do you do nocturnal each night at home or in a clinic, or how does that work (I'm not that familiar with nocturnal)?

What kind of work do you do?

Do I ask too many questions?

Hi there,
Day to day I feel good.  certainly way better that before.  Tuesday and Thursday mornings I still go through the nausea and dry heaves.  The docs can't tell me why.  I start feeling good around 11ish.  I do nocturnal at the center.  In October I am supposed to start training for home hemo - if my daughter doesn't flake on me.
 now, I go to the center after work and spend the night there. I'm on the machine for 8 hours.  I go to work from the center because I live across the bay. At first, I would catch the train at 4am and go home before work.  By the time I got home my bed looked so inviting I could not stay out of it.  I would look at my watch and tell myself "only one hour."  RIGHT!!  I ended up at work around 11. So now I go straight to work - I pack my clothes, my medicines, and my food.  The thing is when I'm not at dialysis I am preparing to go to dialysis.

I work for the State Of California as an Accountant 1.  I am a Payroll Specialist.  I am trying to promote to an Accounting Officer but I need one more class.  I have tried taking the class about 4 times.  Every time I get almost half way I get sick and have to drop.  I'm going to try again this fall.  I feel I will succeed this time.

I hope I have answered your questions and no, you don't ask too many.  thank you, Diana

P.S.  I'm looking at all of these smiley guys...what the heck does 'Bump" mean?  I have seen it used in several posts but I have no clue.



EDITED: Fixed quote tag error - Rerun, Moderator

[Des]

"Bump " is used if you want to bring attention to a "dorment" post and have nothing to say. So you open the post and reply with just the "bump" sign to bump up the responses or to remind people of it.

[renalwife]

Welcome, Diane.  I am new, too.  Have not posted very much because I don't do D yet and hope never to have the experience.


We had a small meet in Riverside and I met some really nice people.  When they were talking about their diet, it seemed that the kidneys would improve if we didn't eat at all.  But then there are nutritional diseases to consider, not to mention starvation.

When I was dx five years ago, I was immediately refered to a nephologist and he immediately refered me to a dietition.  I credit that with keeping my kidneys rather stable.

So you are in San Francisco.  You are just up the street from me.  I am in San Diego. 

[aharris2]

  and welcome to the neighborhood! Glad you're enjoying your look around.

First of all, let me pile on and say how much I, too, have enjoyed my (2) visits to San Francisco, the other bay area. (I live in Tampa, FL, the bay area).

Surprisingly (and happily) very few people here on IHD are in a wheelchair. My brother is, having lost one leg to the struggle against wounds. He has had that "baby foreskin" graft used on his remaining foot (Apligraf, if it is the same as yours) and it was quite successful.

  and looking forward to reading your posts.

Alene

[CharmedMist]

   Welcome Diana, so nice to meet you.

You're story is amazing to read and very touching.

My husband had ESRD first and then diabetes came along about 2 years after.
He is now having a wound on his right foot big toe that started 3 weeks ago and isn't healing. In fact it's turning black, it's not "infected' they tell us but not getting proper blood flow. We go to see the surgeon tomorrow to discuss "options."  So thank you for sharing your story, it's nice to not feel alone. That's exactly what this board is about and I'm so glad you joined.

[DianaJean6]

CharmedMist:
Sorry about your husband's toe.  Yes blood supply is a major problem.  I had to have my first amputation reassigned because there was not enough blood flow to heal the incision.  My foot was removed at the ankle and for one whole year the cut never healed.  So they took a little more off at mid calf.  It healed perfectly and I had my prosthesis within 3 weeks.  I'd like to hear what options your surgeon gives you, if you don't mind sharing.  If you get the worst news, I don't know what to say to comfort you.  It was hard, I cried, I was super pissed off, there was nothing I felt anyone could say to make me feel better.  When I called my boyfriend and told him tearfully the doctor said I would end up dying without the amputation, he said firmly "Well cut the damn thing off!"  It was like Duh - no question!  Feel your feelings - eventually you'll get used to it and it will be "no thing."

[CharmedMist]

We saw the surgeon today.

He told us the toe has gangrene for certain, but there is no infection in it. It's just not wanting to heal.

So, we go in on July 6th for an arteriogram to see if we can find the cause.

He did say "it's possible there is good flesh underneath the gangrene that might allow us to keep the toe." Which was more hopeful than I went into the appointment expecting. He also said "you might not lose the whole toe." But the gangrene is all on the underside.

I honestly don't understand, can you lose only the lower half of a toe? Does that not make walking harder than if you lost the entire toe?

It's odd, in some ways, he's very upset about losing the toe, I think almost more upset about that then the fact his kidneys don't work. I know it's emotional, but to me, it's "just a toe" in comparison to losing a foot or leg.

I don't want to seem heartless, because I'm not, but I want what's best for him and if losing a toe keeps his foot healthy, all the better.

I do know that now I'll be looking at his feet every time we do dialysis.

As a result of his toe being this way, he's walking with a limp and sort of "sideway" on the foot, so now he has a small sore on the outside of his foot and I am watching that crazy close.