Better late than never?

[WishIKnew]

Hi all!

I've been here for a few months but realize I never introduced myself, I just dove right in - kinda tells you a little about me right there!

So, I'm 47.  When I was in college I tried to do one of those high protein diets and was told I could not because I had a kidney problem.  I started seeing me nephrologist and he monitored the slow progression of my disease every year, then every six months for over 20 years.  He diagnoses Focal Segmental Sclerosis.   We always hoped that I'd retire before I needed dialysis.  This all meant NOTHING to me.  I took my meds and changed my diet (low protein, no extra salt, etc) as he instructed and went on with my life.  The only time it ever was a problem was when I was denied life insurance...

So, when I was 37ish my hearing started to go...  found out it's related to the kidneys.  I needed hearing aids and within 2 years the hearing loss was so severe I had to quite teaching.  I went on State Teachers Retirement System Disability 7 years ago, I was 39 and finishing my 18th year of teaching.  After I quite teaching the hearing loss slowed down - it's still progressing but at a slower rate.

Three years after I stopped teaching my GFR dropped blow 20 and I tried to get listed for transplant.  They said I wasn't bad enough yet.  I started PD a year and a half later when my GFR had dropped to 8.  I was eventually listed for transplant in April of 2008 with University Hospital in Cleveland.

I did great on PD  for the first 2 years, but the blood work is not what it used to be and my emotional health has taken a real dive over the last year.  I had a friend who was cleared for transplant last April and then just disappeared - won't return any phone class or respond in any way to me or the transplant center.  VERY painful.  Obviously she changed her mind, wish she's have said so...  That was a turning point for me emotionally.  I also had a friend who got a transplant last May and died in April form transplant complications.  So sad and scarey!

So now I wait.  I love PD.  I have a very understanding husband and a great 13 year old son.  I miss teaching!  I am my own caregiver.  I do EVERYTHING on my own except carry boxes of solution to the bedroom - that's one of my son's chiores.

So, here I am.  Loving this site and waiting for my transplant!  So glad I found you all!

Diane - WishIKnew

[rsudock]

Hello Diane!
 I know you and I have PM'd each other but WELCOME again!!! You forgot to mention that you have a brother too that deals with kidney disease!!! I always remember that about you b/c me and my bro are two peas in a pod when it comes to kidney disease!!! We will have to do a kidney walk together this summer!! What kind of complication did your friend have from her transplant?

xoxo,
R

[MooseMom]

Hiya!  I have slow progressing fsgs, too...diagnosed in 1992 and now with an egfr of 15-18.  I am very surprised that you were not listed once your egfr went below 20 as that is the usual cut off.

I was denied life insurance years ago, and that was a real blow.  I remember being very upset about that.

Would you mind telling me more about your hearing loss?  I have developed tinnitus and wouldn't be surprised if it is the beginning of something more sinister.  I am not aware of many people on IHD who have experienced hearing loss, but I think some have. 

I'm really glad you are here, and I hope you are feeling well-supported both at home and here on IHD.

[peleroja]

Welcome to the group, Diane.  Lots of good information and friends here.  I loved my PD too until they mistakenly removed my catheter and then couldn't give me another one  so now I'm on hemo.  Hate hemo.  Glad you found us!

[WishIKnew]

Oh, yes, my brother (two years older than me) has the same problems - hearing loss and kidney failure.  He was originally diagnosed with glamarial nephritis.  Now, with our current situations, it is believed that we have Alports.  Alports sufferers generally have deafness and kidney failure and sometimes vision problems as well.  Alport is a genetic disease.  We have no history of it in our family.  We have been advised not to have the genetic testing to confirm the diagnosis because our children will then not be able to get insurance. (I know with health care reform that may no longer be true, but we are still told not to risk it.)  So far our children, my brother's 2 and my 1, have no signs of kidney or hearing problems.

I never really had tintinitus, just started noticing that everyone was mumbling all the time  . Finally realized the problem was me and not them.   Had a hearing test and was told I had a moderate loss and needed hearing aids.  Within two years I'd lost another 10 decibels and was  at a severe loss.  I'm still in that category now.  Hearing aids help a lot and I do pretty well in controlled environments.  Love message boards, no need to listen! 

Honestly, the hearing loss has been much harder to deal with for me and my family.  I pretty much "take care" of  the kidney crap.  Other than worrying, it does not affect their day to day.  The hearing loss is something my husband and my son have to deal with all the time.  Whoever is with my is my ears.  For example, I'm at the drivethrough and I order.  They ask me a question.  I look at whoever is in the car with me.  They tell me what the question was.  I answer.  Stuff like that ALL the time.  My son has to tell all of his friends to look at me when they are talking.  All phone calls are taken by one of them and relayed to me.  I never know when someone is at the door.  My alarm clock is loud enough to wake the whole house.  Close caption on the TV all the time.  That kind of stuff.   I'm sure it gets old for them.  So, that's my hearing stuff.

[WishIKnew]

On a positive note with the hearing loss, when my machine makes pumping noises at night I don't hear a thing!

[Rerun]

Hello WishIKnew and welcome.  It is one of my jobs to make sure people intorduce themselves.  I guess you slipped through the radar.  Thank you for doing it.   

I'm glad with all that has happened to you, you seem to be hanging in there.  I'll have to go read your other posts now.

   

Rerun, Moderator 

[WishIKnew]

rsudock - thanks for reminding me to add the info about my brother!

You asked about my friend, Jane, who died last May from transplant complications.  Everything went wrong for her.  I don't have all of the details but she had major problems adjusting to the meds - vomitting all the time, etc.  Then there were the infections.  Horrible uncontrolled urinary tract infections.  And then another infection which caused the skin on her feet and then legs swell and then to turn black and die.  She could not walk for the last month or so because of the leg problems, which were very painful.  If they cranked up the meds to fight the infections then the kidney, which never worked very well anyway, was in danger of rejecting.  Anyway, things just seemed to get worse and worse.  Her transplant was in early May and she died in late September.  During that time she was only home for a couple of weeks.  Very sad and NOT typical situation!!!!!  She was in a skilled nursing floor of a hospital when she vomitted and chooked on her own vomit which caused her death.  She was my age.  We graduated from HS together.   Very hard thing to deal with all the way around!

[chook]

What a story, WishIKnew. Love that you can find humour in your situation - like not hearing the machine pumping.
Jane's story is so sad - certainly not what would have been expected from a transplant. That must have been hard for you too.

[rsudock]

Diane thank you for sharing the details about your friend...what a painful way to go. I hope she is in a better place now.

xo,
R

[PreciousJeni]

i have the same thing. does pd hurt?

[WishIKnew]

PreciousJeni - no PD does not hurt.  Really.  The initial operation to have the catheter put in place was painful for a week or two.  Sometimes when the solution is draingin there is a little cramping, but I just roll over or pull my knees up and it passes very quickly.  I am a total wimp when it comes to pain and I can tell you that  PD is not painful!