A short intro as I am very sick

[daybyday]

  I am writing a short intro as I am having such bad issues I can barely type right now.

My name is Victoria, and I am 53 years old with IGa nephropathy that resulted in a kidney transplant in 2001 that lasted 5 years and failed, and was subsequently removed. I am currently on the list, 3 1/2 years now for another transplant but have many things against me, antibodies and need an O blood type. I am losing hope. I am on hemodialysis 3x/week 4 hours each session.

In the meantime, I was fine @ 6 weeks ago, then developed extreme muscle weakness and pain to the point of now barely being able to move.  I can barely wash my hair, go up steps, walk. My leg and arm muscles just give out, shaking with weakness. Even my neck muscles holding up my head are in pain and weak. Typing this hurts very badly.

I have been hospitalized all week with no answers. They finally sent me home with the option of home health aides or a nursing home or just wait to see if something "presents itself." I cannot tell you the frustration and hopelessness I feel. They did test for aluminum poisoning which they said was high, but that dialysis patients generally have a higher reading so they didn't think it was that.

To become this debilitated so fast, and no answers, I am in so much distress and wanted to see if anyone else may have experienced this. Any help will be so appreciated, as I am getting extremely depressed right now.

I will write more as soon as I am able as to a more social post, but am so desperate for help right now.

Nice to meet you all, Victoria

[willieandwinnie]

  Victoria. We are so happy that you found us. Great information and support here. I'm sorry that you lost your transplant and I'll say a pray that another will come along quickly. My husband had his transplant about 20 months ago and has really been on a rollcoaster ride. He is very tired all the time and has no energy for anything, but he has other health problems and we just take one day at a time. I' sorry I don't have any answers for you and I hope they can figure out what is going on. In the mean time, hang around with us as I'm sure you can learn from us and us from you. Please post often and let us know how things are going. 

[valerie52]

Hi Victoria,
My name is Valerie.  I have been on home hemo-dialysis for 34 years.  I can't give you medical advice, but I can tell you what once happened to me.  I couldn't stand up without someone helping me.  I couldn't lift my arms either.  It turned out to be Poly Mialgia Rheumatica (PMR).  Prednisone was the answer.  I'm still on 5 mg a day and can't seem to get off it.  Every time I try, it comes back.  On this dose however, I'm fine.  There is a blood test (sed rate) if you ask your doctor.  Hope this helps.  So sorry you're going through this.  They didn't know what was wrong with me either for some time.
Love, Valerie
 

[David13]

Welcome, Victoria!   

Sorry things are not going well for you.  I am glad you found us.  This is a great site for both information and support.  Please visit as often as you can.  There is always someone who can answer a question or at least offer a shoulder to lean on.   

[kellyt]

Welcom Victoria.  I hope they can find what is causing your severe problems fast and get you back on track to receive a new kidney.  You have found a wonderful place to come and visit, rant, share experiences or whatever!  I hope you're feeling well enough to check in regularly!  It's wonderful to meet you.     

[kimcanada]

Hi Victoria, I find I have the same problem, maybe not so severe though... I have been blaming mine on my low LOW hemoglobin?

I hope you get feeling better as soon as possiable..

Please post as much as you can , I look forward to it.

Kim

[willowtreewren]

Welcome, Victoria!

You have found a place that will provide lots and lots of support. The folks here are wonderful.

I'm so sorry that you are having such difficulties right now. I hope that your mediacl team gets to the bottom of your problem soon.

Post as often as you are able. Welcome to the IHD family. 

Aleta

[petey]

Hi, Victoria!
My husband has some things in common with you -- he's 53, has IgA, had a transplant (in 2000) that lasted three years, and is now back on dialysis.  With his high antibody level (98%) and his O+ type blood, his chances of another transplant are slim, too.  He is on the UNOS list again and is still holding on to a thread of hope that another transplant will come for him...one day...maybe.  Until that time, Marvin is living a busy, active, full life -- day by day (like your name says).  He's on home hemo, and we do his treatments 6 days a week.  Since home hemo, he's been in the best physical and emotional condition since his dialysis journey began 14 years ago.

I hope your doctors can find out what's going on with you and that you can get better.  I'm glad you joined us.

[monrein]

I'm so sorry Victoria that you're having such a struggle at the moment.  I have no advice or suggestions but I was wondering if by any chance you are on any statin medications for high cholesterol?  It is most unlikely really, but these can cause severe muscle weakness sometimes so that's why I ask this.

I'm glad you found this website and hope that we can be of support to you as you navigate these difficult times . 

[G-Ma]

 

[MandaMe1986]

Welcome Victoria sorry your in so much pain. I am glad you found us. Hope to see you around more. 

[Brightsky69]

 

Hi Victoria,

I also have IGA nephropathy. I've only just started PD (again) since Oct, 2008. I am not having the same troubles as you. I hope the docs can find out what is causing you so much trouble. You have found a ton of support here !!

[Joe Paul]

Welcome Victoria, good to have you aboard.