New list member from Atlanta

[dlady64]

Hi all,

How to start?  I'm a 43yo wife, mom, and (sometime) commercial business writer in Atlanta, GA.  I'm so glad to have found IHD because I feel like I'm going to bust with all these emotions I don't know how to express.  Including feeling stupid.

I had HSP, an autoimmune disease when I was 4.   1% of children who get HSP may have kidney problems.  I'm so special.  At 10, I had an "episode" and we discovered that my kidneys had been damaged.  While my family didn't write the book on denial, we studied the manual closely.  I did go to the nephrologist twice a year, but I had no concept of what kidney disease really meant.

At 16, I left home and struck out on my own.  Of course, there was a guy involved.  I continued to go to the nephrologist until at 19, I happened to mention to the doc during a visit, that I wanted children.  I think he tried to impress upon me the gravity of the situation, but bottom line, he scared the hell out of me.  I never went back.

In fact, due to some of the invasive procedures I suffered as a child, I mistrusted and despised the whole medical scene.  I did finally have a baby at 24--a planned home birth--because I didn't want doctors to get involved and make my pregnancy a medical crisis, as I suspected they would.  My son was born healthy, I was fine, and it was a marvelous experience.

About 10 years ago, I signed up for life insurance.  I was worried that they'd ding me because I'd quit smoking recently but instead they were worried about the protein in my urine.  I simply explained the +2 protein was normal for me and signed the papers, albeit at a higher rate.

In 2003, I visited the ob-gyn for a physical, complete with blood work and UA.  They called the next day to schedule me for an appointment because my cholesterol was so high.  When I got to the doc's, they completely ignored the cholesterol and freaked out because my blood pressure was 190/110. 

Sorry so long, almost done.

For the last 4 years, I've been diagnosed with glomerulonephritis.  I changed the way I ate, quite drinking any alcohol and blithely continued on with my life.  Alas to no avail.  I'm now at Stage 5, with a GFR of 9.

Good news--I was accepted to the transplant list at Emory this week and have three possible living donors.
Bad news--I can't wait any longer and I'm scheduled Monday to have a catheter placed for PD.

I've had 40-odd years to prepare for kidney failure and I simply ignored it.  I thought I'd somehow "beaten" the odds.  I know lots of you good people are living very happy lives.  But I feel as though life, as I've known it, is over.  This is not realistic, I know, but it is how I feel.  That's why I'm here.  This "going it alone" thing isn't working for me at all.

Thanks for reading,

[petey]

welcome, dlady64 !  You've come to the right place.

Your life is going to be different -- but you sound like you can handle it.  And, you are not alone when you're at IHD; you're among family.  We're here for you.  Look forward to hearing from you soon.

[willieandwinnie]

dlady64. You are not alone anymore. We are family here and all of us understand what your going through. Take care and come here often and let us know how you are doing. I'll keep you in my prayers. 

[Wattle]

  Welcome and I am glad you found us.   

I don't think any amount of time prepares you for dialysis. I am sure you will do well on PD. Just give yourself time to adjust to the "new" you.

[Romona]

 

[bolta72]

Welcome, there are many here who can help you along and keep the faith.

[ODAT]

 

My mom is in the pre-dialysis mode right now. She knows it's coming but it does feel unreal. When you don't feel ill other than being tired, you do tend to think there's nothing wrong and nothing will change. She is at GFR of 13. Waiting a few months before fistula surgery (due to Plavix).

I agree with you that it is going to be a whole new life, not just for you but everyone close to you as well.

Congratulations on having a healthy baby and quitting smoking! 

Come here often for support. Lots of caring and sharing going on! 

[xtrememoosetrax]

Hi dlady, and  . Great intro! I'm glad you found your way here to IHD; it's a great resource for information and support. There's just no need to go it alone; whether you're feeling sad, mad, stupid, or anything else, there's always someone here who can relate. So keep coming back, and keep reading and posting. I think you'll like it here.

[Sluff]

Welcome to IHD Dlady64,

Congratulations on a successful pregnancy at 24 yrs old, your son is 19 and I hope he still healthy. I too am glad you found your way to this website because there is a wealth of information here. You will develop many strong relationships here as well. We share the good times as well as the rough times, in fact that's exactly what we are here for, a place to rant when necessary.

Sluff/ Admin

[MyssAnne]

Welcome, Dlady!!!  I've been in the same situation, denial, etc.  You're facing it now, and doing something. THAT"S what matters!!

Good for you!!!  And congratulations on your healthy son, albeit some 19 years late!!  I too have a 19yr old son, shouldn't have had him,
but I did and am so glad I did!!

 

[paris]

   We all have some denial and think we will be different and beat the odds.  Even when I am most realistic, I will think that I can just hang on like this forever.  Life does change, but you will find that IHD can be a huge help in those changes. I am no longer afraid of the future because there are wonderful people here who have paved the way for me.  So glad you are here. Looking forward to hearing more from you. 

[Psim]

Welcome dlady! Great intro -- I like your writing! I too am pre-dialysis, and being able to tap into the incredible amount of experience and wisdom here has been such a blessing. It's scary to contemplate all the changes -- known and unknown -- that we face, but there are great people here who have been there, done that, and are willing to help us up and dust us off when life knocks us on our butts.

[livecam]

Its good to have you here DL.  You've certainly been dealing with this for a long long time.  I'll bet you are sick and tired of it.  Welcome!

[KR Cincy]

   Dlady, I'm awfully glad you found this place. I hate that you need it (hell, I hate that I need it!) but you're part of a pretty exclusive club now. Just so you know, I, too, thought my life was pretty much over when I lost my second kidney to cancer and had to start dialysis. But it's not...heck, I'm goofing off at work right this minute, writing to you! Much is possible, but it depends on your attitude, your support system, your new friends in the medical profession (some of that are VERY good, I promise you), and some decisions you will need to make (type of dialysis, where, when, etc. etc.) But know this...you CAN do this and you CAN have a fulfilling life.

Keep in touch and know that we're all here for you

[rose1999]

You can ask anything you like here and no one makes you feel stupid - I know cos I've asked some daft questions!

[rookiegirl]

  to the family.  You come to the right place.  Here you will find people with the same concerns, issues, problems, etc.... Feel free to share everything and anything.  We are here to listen and support you.  I look forward to reading more of your post.

By the way, I use to live in Kennesaw for almost 2yrs.  How I miss ATL.

[Ohio Buckeye]

Welcome dLady to the IHD Family!
I'm on PD and happy with my choice.

[Joe Paul]

Welcome dlady64, good to have you aboard.

[Sunny]

Welcome. You sound like a strong person and will find the strength to do this as well.

[Ang]

  aboard

[okarol]

  Hi dlady!
The bad news: You've got renal failure
The good news: You are in awesome company

Welcome to IHD - thanks for sharing your story - I hope you can get that transplant, but in the meantime I hope the PD will have you feeling better soon. Best of luck to you!

[kellyt]

I so now how you're feeling.  I, too, have glomerulonephritis and I'm pre-dialysis.  I had my access created at the end of Oct.  I have an AV fistula.  If I have to start dialysis I'll do in-center hemo.  I have possible living donors as well (3) - two brothers and my husband.  At least those are the one who have stepped up and offered.  One of my brothers has just completed his testing.  We're waiting for the final result.

ESRD is hard.  I was in denial like you for many, many years.  (I'll be 40 in March)  I still feel healthy, except for just being tired.  However, when they started me on the EPO shots and iron supplements I have more energy.  So now I feel perfectly healthy.  I don't want to run a marathon, but then again I never did! 

I can't remember how I found this site.  All I know is that I am grateful I did.  It has answered so many questions.  When I had my consult with the transplant surgeon he was really impressed with my questions and how much I already knew.  He said "Wow!  You're going to make a great transplant patient."

Good Luck on Monday.  Check in with us as soon as you feel up to it.  I can't stress how much you will love it here!!!   

[Bajanne]

Welcome to our community!  I loved your intro.  It is the kind that our founder Epoman adored. As the others have already told you, this is the place to be.  Here you are free to rant, vent, rage.  Here is a group of people who REALLY understand what you are going through.  It is also a good place for information. And on top of all of that, this is place for real support - a shoulder when you need it.  And if you read our posts you will see that some members have even physically been able to offer their shoulders to one another in the time of need.  This is really a lovely family, with family members all over the globe (I am in the Caribbean!)  So welcome to the IHD family 


Bajanne, Moderator

[kidney4traci]

Welcome Dlady64!  I loved your intro, very well said.  I am sure you will find comfort here - this is a wonderful place to explore past threads to answer questions and just to go ahead and rant when you feel like it.  You are not alone, there always feels like support here.  Even when those closest to you don't understand what you are going through, we will.  When you need to let go because you are tired of putting on the strong front for your family, we are here.  When you are confused about a process the doctors have you on, we will be here.  So relax a bit and know that we all go through trials but God doesn't put you through one not to leave you there but to help you grow from it and see you to the other side.  Sometimes carrying you if needed. 

I am 41 years old, and have a similar experience to yours.  Even down to your phobia of doctors because of tramic visits when I was young.  I was in the hospital when I was 7 and felt so alone.  My mom recently said it was only two days, for over 30years I always thought it was a week as that's how isolated I felt.  My mom was not always there and I vividly remember them asking me to be naked and pee on a table in front of them.  ... I had more problems, but from all that I too knew I had grown to avoid the doctor.  At least you kept up your annual visits, I didn't.  Of course I was told I was only a carrier and what I have only effects males, blah blah blah.  Anyway, enough blabbering.  I just want to let you know that I was devestated when three years ago I just got sick and then finally went to a doctor and they freaked out over my blood pressure too.  The next day I had some neph telling me I needed a transplant.    Blew me away.  I thought my life was over too, my only impression of dialysis was my dad in our old basement in the 70's with a huge machine that looked like a washing machine.  He was on that thing for about 8 - 10 hours a night!!!  Thankfully, I learned that times have changed.  I do my dialysis at home too now (was incenter for 2.5 years) but only a little over two hours at a time, five times a week.  I feel fine now, heathy as ever.  To look at me (well, with long sleeves on ha ha)  I look fine.  Like Kelly, there aren't any marathons in my future, but I do rollerblade every day.  I have three kids and they keep me going. 

Enough again about me, this is about you.  I never post this long, you must have stuck a chord with me! Welcome to the site, please post as much as you feel comfortable.  With your intro style, I look forward to reading more. 

[Slywalker]

  dlady to the community.  As mentioned previously you will find lots of support and help here on this forum.  I did hemo dialysis then PD.  I was much happier and felt much better on PD - but it really is a personal choice.

Take care

Sandyb