Hi! I'm Melissa

[melshell]

(*cheesy grin* lol! <-I like that!!  ) First, let me say thanks for allowing me to join! I happened across the link to IHD.com on NKF's general discussion board for patients and families, and spent hours last night devouring the posts in the Intro. section. I was eager to get started last night and a bit dismayed that I couldn't post immediately, so much so that you would've thought I won the lottery when I checked my mail this pm and discovered that I'd been accepted! 

I am a 35 y.o. female from GA. I'm married to my highschool sweetheart, and an LPN by trade. I was diagnosed with FSGS in '91 via kidney biopsy due to consistent elevated protein in my urine. (4+) Other than the protein, and mild hypertension that I assumed was hereditary, I was asymptomatic. I vaguely remember the initial diagnosis after the usual buffet of labs, including a 24 hour urine, and biopsy confirmation. I remember thinking: o.k...I'm spilling protein, so my first thought was: "Fantastic!, now I suppose he (my neph.) is gonna tell me that I can't eat meat and I'm going to be expected to become some kind of vegetarian!!" (give me a break! I was a NEW Nurse at the time! lol!!) Thankfully, a factual and intellectual conversation ensued about FSGS, and I didn't make an ass outta myself by going into a tirade about how I wasn't gonna give up beef!! *whew* I left his office that day telling myself that it was no big deal; I didn't feel any different,  I certainly wasn't "sick", so my kidneys were functioning at 95%, surely nobody's are 100%! I can live with a reduced sodium diet, maybe try to eat a little healthier, take better care of myself, maybe even lose a little weight, and quit smoking... I was started on Accupril, and given a follow up appointment in 6mo.-1yr. Ahhhhhh, what it'd be like to be that ignorant again!!

Hubby and I planned to start a family after we'd been married for atleast 3 years, so when that time rolled around, we discussed it with the neph. My function was stable, he switched me to Aldomet, and gave us his blessing. To make a long story short, infertility reared it's ugly head, then we suffered loss after heartwrenching loss, and in a space of 10 years and 3 pregnancies we were still childless and my function had decreased to 40%. With each successive pregnancy I'd lost 15-20% function, but I was desperate to have a child of my own. The sad part is, that I would have continued to try to conceive, and to carry a child if my neph. hadn't spilled the beans to hubby! What can I say, it's one of those women things! (If I knew then what I know now...)

It's only been in the last two years that the proverbial "sugar turned to shit". Even when I got down to 40%, I was still pretty much asymptomatic-infact, more pissed that I was barren than that I'd sacrificed precious kidney function. At or about the 40% mark, it was determined that more aggressive therapy was indicated to preserve function and I was started on cyclosporine, and large doses of steroids that threw me into insulin dependent diabetes. My lipids started to climb; my cholesterol was suddenly 300-400, my triglycerides were 1,000 and my potassium and phosphorous were off the charts. At one point, I was taking 40 pills/day for all the different maladies, convinced that the combination would either cure cancer or create a new weapon of mass destruction, and I spent an entire year as sick as any one person could be! There were days that I couldn't walk, couldn't even get outta bed! I ached and hurt all over, my previous boundless energy level and outgoing personality were non-existent, and every time I mentioned a possible side effect from the meds, or a new complaint, medication was changed or ADDED.  I decided to take matters into my own hands, and I quit everything except the B/P medicine--cold turkey!! My neph. met me halfway, cut my daily pills down to around 10, and I had a couple of "good" months, maybe a year. My lipids steadily continued to climb, but I didn't "feel bad". I learned to power through the bad days, and lavish the good...I had a pretty good thing going, then I got into a car wreck. [Hubby hit a deer, both air bags deployed, and I ended up in the E.R.-as luck would have it, I was misdiagnosed with a UTI (protein and WBC's in the urine-although completely asymptomatic!!) and was PRESCRIBED, AND TOOK too high of a dose of a too strong antibiotic and ended up in the hospital with uremia. 

Long story short, my kidneys bottomed out, down to 12%, and never rebounded. My neph.'s offices' lab couldn't calculate my triglycerides, and my cholesterol was 1200. Everything he tried to treat me with either didn't help, or made me worse, so he referred me to another specialist and an endocrinologist. (I just thought I was sick before!!) I had a pancreatitis scare, thankfully that wasn't the case, and was put back on insulin. It's been effective in bringing my lipids down considerably: cholesterol is back down to 275, triglycerides are down from 14,000 to 950. I will continue to follow up with the endo. monthly, probably indefinitely, and as for the kidneys: dialysis is the plan. I'll soon be 3 wks. post tenkhoff cath. insertion, and am slated to begin training for at home PD via a cycler. (1st flush/manual exchange 12/6/06, training 12/15-manual exchanges at home 12/16-12/18, resume training 12/19-12/22).  Hopefully for a short time, until transplant...

It's a shame that as a Nurse, knowing that I've had a chronic kidney condition that would probably result in dialysis/transplant, I have avoided learning anything to do with dialysis/transplant both personally and professionally until I have been smacked in the face with it!! To add insult to injury, it seems that I'm having difficulty absorbing the mounds of information I've subjected myself to since learning that my worst fear (dialysis) was not only a distinct possibility, but that it was eminent!
...what?...huh?...but I don't even remember getting on the roller coaster?!! LOL!!....

It's been tough so far, and I keep looking for that gap in the clouds of what has been a seemingly endless perpetual shit storm, then it occurs to me that I don't even have an umbrella!! IHD has ALREADY been a ray of sunshine, and I look forward to learning everything I can from each of you, as well as surrounding myself with folks that are going through the same thing.  (What a joy it will be to not have to try to help someone understand how truly bad you feel sometimes when "you are the picture of health!" to the average Joe!)

Thanks again! If you've read through to the bottom, you're a real trooper!! I didn't mean to write a novel!!
huggs-Melissa
sqzagapeach@yahoo.com

 

[charee]

Melissa This sure is a great site , looking forward to your posts.

[goofynina]

Melissa,  first of all let me begin by saying EXCELLENT INTRO...  Welcome to our website/support group.  I look forward to hearing more from you and please, by all means, post any questions, comments and concerns of your own, we are all in this together and here for each other always....

[kitkatz]

Great to have a sense of humor aboard!   

[Fox_nc]

Woo Hoo!  Another southern woman!  I haven't heard the phrase "sugar to s***" in years!  (I peed just a little) Wonderful intro!  We're all glad that you're here.  Please make sure and check out the Home Dialysis section. I'm starting PD this month too and found tons of wonderful information in there.  Look forward to your thoughts, questions, and experiences!

 

[Bajanne]

WOW, Melissa, welcome on board!!  What an intro!  Just the other day, I was wondering how it would be for a nurse if she developed renal failure (actually, I was thinking specifically about dialysis nurses), and here you come.  I think it is going to be interesting to hear your spin on things (in fact, it IS already interesting!)  You have come to the exactly right place.  We have lots to offer and you have loads to offer too.  PLease let us hear from you very often in the various fora (plural of 'forum' for the unititiated).
 

[Sluff]

Welcome IHD Melissa, what a introduction. I too have been diagnosed with FSGS aren't we special. Like you it's hard to believe that we can have such a nasty disease with no real symptoms and I think it's hard to acknowledge the disease, that is until they put you on the medications, then it's HELLO.   

[nextnoel]

Holy Toledo, Melissa, what a wild ride you've had!     Welcome to IHD  - your first post was tremendous, and I'm looking forward to hearing from you further.  You seem to have a very good take on things, from both a patient and professional perspective, and I love your sense of humor.

[Epoman]

Welcome aboard and thank you for the long "Intro" I love to see long, detailed intros. I hope you post often and I am glad you found your way here to IHD, be sure to check out the FULL family of IHD sites. Just look in my signature line. 

Again welcome

- Epoman
Owner/Admin

[anja]

   Melissa~  What a detailed memory you posess along with maintaining your sense of humor through all the emotional and physical turmoil!  I share your trade but also knew very little about dialysis until 6 years ago when my father was thrust into it in order to withstand bypass surgery.  I have been on PD for 1.5 years and were it not for this site, I would have been started on hemo. instead.  I am glad I knew from IHD that I had a choice!  Glad you have joined us.

[Joe Paul]

Welcome Melissa. good to have you aboard.

[del]

   Welcome Melissa.  My husband has been on dialysis for 9.5 years now.  He was on PD.  It stopped working so he went on in center hemo.  Just started doing nocturnal hemo.  He is doing fine.  Does everything that he wants to do.  I think everybody at the beginning goes through a period of denial.  I know we did.  He was sick for aabout a year and would not accept it and go on dialysis.  All kinds of symptoms but always blamed it on something else rather than dialysis.  Welcome aboard.

[jedimaster]

 

[mcjane]

Hi Melissa, I was an LPN, now an RN, got my AD.  I knew what dialysis was, what it did & what it was for. But, actually I knew nothing until I came here. What an education, WOW. This is the place & the only place where they really tell it like it is.

My husband is the one on dialysis, he doesn't say much, but IHD is where I learned just how much he is going through.  IHD has helped me help him.

Your intro was great. You will love it here.

Welcome.

[angieskidney]

  you are around my age and have already been through so much!

[mallory]

Melissa,  Great introduction!  Looking forward to hearing more from you!   

[Fighter]

Hi Melissa, welcome aboard! 

[Zach]

Good to have you with us.