Greetings from PA

[Chalice]

Hello all. I've been floating around this site for a couple of weeks now, reading posts and seeing what life is like on dialysis. My mother's kidney function has been rapidly declining in the last year (although the docs never explained the lab values to us) and now is at the point of choosing what type of dialysis will keep her alive.

Mom was born with a congenital heart condition known as Tetralogy of Fallot. It is a 4-defect combo in which, back then, most children did not live past their childhood. She was one of the first babies to have corrective open-heart surgery and was the poster-child for the American Heart Association. At age 4, she suffered a stroke that debilitated her right side. At ages 11 and 30 she again had corrective open-heart surgeries. The doctors said at both of those times that she would not live. At 30, she was told to not expect to live past 35. She turned 60 on May 31st. When finding out dialysis was close, she became defensive and did not want to do it, but that great drive has kicked in and she has decided to proceed with it. It is a great worry, being that she also has Type 2 diabetes along with Congestive Heart Failure. It is the severely decompensated heart function that has lead to the kidney failure, the lack of blood flow has occluded the arteries to her kidneys. Her GFR was 21 at last lab time. This is all such an unknown and that is what is so frightening. But, It has been encouraging for me to read all of these posts and know what could lie ahead, be it difficult or be it uplifting.

All this said, we have decided that home PD is the right choice, and I, her daughter, will be her buddy in learning and mastering the procedure. What I've been wondering is, are there any other members that are in Congestive Heart Failure that are on PD? CHF is a condition where fluid gathers, so I'm wondering about the effect of PD on that. I'm hoping that PD will help the CHF, by pulling off extra fluid. We don't see any way that Mom can do HD due to her severe lack of veins....she is an extremely difficult stick (one time in the ER, it took them 16 sticks before they got blood). Her Cardiologist does not want her doing HD.

I am truly amazed at everyone's determination on this site. Life is such a gift. I look forward to posting my journey with my Mom here at this site. Thanks, everyone!

[willowtreewren]

Hi, Chalice,
Your mom sounds like a real fighter! 

And she is fortunate to have you there to help her in this dialysis journey. In my family, I am the one who helps my husband with his dialysis. We also do dialysis at home, but we do HD.

With all the folks here, I hope someone can answer your question about CHF and PD.

I look forward to getting to know you better. Hugs to you and your mom.

 

Aleta

[Romona]

Hi Chalice! I am from the Laurel Highlands Region of Pennsylvania. I am so glad your Mom has you! 

[Rerun]

Chalice your Mom has beat many odds before and I'm sure she will do fine with PD.  That would be my choice if I could do it.  I have too much scar tissue in my abdomen.  Come here to find the facts.  Post often.

                                                 

[Joe Paul]

Welcome Chalice, good to have you aboard.

[Chalice]

Thanks so much! I already feel this is an incredible site for information. Patients and caregivers often know more than doctors. There is a big difference between being schooled in a disease and actually LIVING it. And definitely, my Mom is one incredible lady. She will NOT lay down and die. Her doctors just shake their heads in disbelief.

Romona, I am not too terribly familiar with all parts of PA, even though I've lived here for 4 years. I spent 10 years prior in Arizona. Where is the Laurel Highlands region? I live in Berwick, it is near Wilkes-Barre/Scranton.....

[peleroja]

Welcome to our little corner of the world.  I look forward to reading about mom's journey.

[MandaMe1986]

 

[Romona]

Altoona and Johnstown area. Joe Paul is from PA too. Someday we need to get people from the East coast together!

[Chalice]

Oh, I know where Altoona is. Never been there, but I know where! I agree, it would be nice to have a meet-n-greet out here!

[Hanify]

What an amazing woman your mum is!  And it obviously runs in the blood cos you sound pretty amazing too!  Welcome to IHD.  Ask lots of qiestions.

[monrein]

   Glad your Mom has you and also nice that you've joined this site.  Post often.

[breezysummerday]

 

[willieandwinnie]

  Chalice. Glad you came out of lurking. Your mom is fortunate to have you through this. I can't answer your questions about PD but there are plenty folks here that will chime in. There is tons of information here and so much support anytime of the day and night. We hope to hear more from you and please take some time for yourself. Being a caregiver can be exhausting. 

[Inara]

 

[Wilda]

Hi Chalice,
Good luck with your mom. She sounds like a real fighter. I was on hemo dialysis back when I was on dialysis. I don't know much about PD. But I'm sure this is the place for you to find out info. I will pray for your mom.
Wilda

[Epofriend]

  Chalice,

It's always great to prove the doctors wrong when they are so bold as to tell you how long you have to live. I hope your mom continues to do this for a long time to come. A significant number of our members are on PD and you will find a wealth of information on it, especially in the "Dialysis: Home Dialysis" section but also spread throughout.

Good to have you here and looking forward to your posts.

Epofriend, Moderator

[TeenHatesDialysis]

 

Your mom is lucky to have you to help. 

Being on dialysis can be frustrating, frightening, exhausting and depressing at times. Come here for support, information, positive vibes and lots of ((((( - hugs)))))

Glad that you joined the group.

[Maxridex]