Looking for thoughts and comfort

[RweTHEREyet]

I don’t often post on this Board, only occasionally, but I have come here for some comfort and maybe answers and information. I learned yesterday that my Mom will have to start on kidney dialysis in a few weeks. She is 85 and has numerous health issues, including leukemia, diabetes, Padgett’s, gout, and on and on, so probably not a good candidate for a kidney transplant. She is a feisty 85 year-old that still loves the casinos and travelling,etc. She still lives on her own, in a military widow’s retirement village in Florida, about 14 hours away from me, which means I don’t get to the Dr. with her. She is able to use military medical facilities and receives her medications from them, which would be an issue if she moved closer to me. She also would have a problem with the stairs in my house. So, for right now, it is best that she stay where she is, at least that is my opinion right now but it could change quickly.

I don’t know anyone that has ever had dialysis. I don’t know what to expect or what impact it will have on our lives. She will find out more on her next appointment in early August about how often, just when it will start, etc. I have read that normally dialysis patients have to go 3 times a week and it takes up to 4 hours, is that true? Does that mean you are then confined to where you live and cannot travel? Could she still come for Christmas? What does all this cost? Are there any other side affects related to dialysis? Does this mean that trips to WDW are now out of the picture?

The bottom line is I am scared about all of this. It sounds like things will really be different for us from now on.

If anyone has anything to share about their experience with dialysis for either themselves or a friend or family member, I would love to hear from you.

 

[EsmeraldaX]

no expereince but just wanted to offer a

 

[flaps]

No experience here either, sorry. But a {hug} and a *bump* for your thread in hopes that perhaps someone else will.

 

[mt2]

Boy that is a weight on your shoulders. A big hug to you and your family.

mt2

 

[mommytotwo]

I'm another person that doesn't know about this situation, but hope all goes well for your mom.

 

[NMAmy]

I'm sorry, I'm not much help either but I wanted to bump your post back up and maybe someone else will be able to assist.

My very best wishes for you and your mom.

 

[bananiem]

I'm so sorry about your Mom. My parents are 82 and 86 and only 4 1/2 hours away, but it's so hard to be away when they're ill, isn't it?
Maybe you could contact the doctor's office and ask them some questions. I know that the Privacy Act will make it impossible for them to answer some personal stuff but they should be able to tell you general things. They've probably had similar situations (child living away) and may have some tips for you.

 

[Breezy_Carol]

My FIL has been having dialysis for about 4 years now. He goes 3 times a week for 3 - 4 hours. Usually he drives himself. They live in Maryland half of the year and Florida the rest of the time. He has a dialysis center he uses at each place and switches between them. He considers dialysis a "part time job."

I do home care and have had patients on dialysis. Some are tired right after the treatment but are good the other days. You can skip a few days without feeling ill.

If you can find a center near you, I am sure she could switch between them. Some are national "chains".

Good luck to you and your mom.

 

[Sal]

I also have no personal experience with this, but a gal who works with me has. She loves to travel and was on dialysis. She was able to set up appointments at clinics all over the US for the dialysis. I wish I had more info for you, but I bet something can be set up so she can visit you and maybe travel other places as well.

Someone else can give you better info. Good luck to both of you.

 

[Minnie824]

I'm so sorry to hear about your mom! What you said reminded me so much of my grandmother...she loved casinos, traveling, dancing, etc. She was on dialysis for quite some time as was my grandfather. I was younger, but I do remember going to Disney one year, and going somewhere in Orlando for my grandfather to get dialysis. So, I know it can be done when she comes to visit with you, just try to make arrangements ahead of time. She should still be able to do everything she had been. Although difficult, try not to worry.

 

[avdeane]

Also wanted to say that you and your mom are in my prayers

 

[disneyelaine]

I know alot about dialysis. My mom did hemodialysis for 5 yrs (that's the kind you are talking about, where you go 3 times a week to a center), then she got a transplant. She passed away in 1995 at age 55, mainly due to a heart attack.

Then my dad went on dialysis in 1999 at the age of 63. (Yes one of Life's Lovely Twists...having both parents go thru this!) He is doing hemo at a center 3 times a week. Both parents stayed very active while on dialysis & both drove theirselves to the center which was an hour away. They golfed, traveled, etc. To travel you just tell your Dialysis Center where/when you are traveling & they take care of getting your appts set up for you. My parents went to Disney & I know there is at least 4-5 centers in Orlando. It does take a toll on the body. Both parents need/needed to sleep most of the day they went to dialysis.

Just last year my dad had to go into a nursing home because he now has dementia. He's been doing dialysis for 5 yrs. He never ever wanted to consider a transplant for his own reasons/basically seeing my mom go thru it all.

I don't want to be harsh, but reality of dialysis is not easy. 7 years or so is the average a body can handle it. That is why transplants are much favored if one is in good health otherwise.
But that being said, there is a lady at my dad's center who has been on Dialysis for nearly 20 yrs!!

As far as costs, yes dialysis is very expensive. I think approx 6000.00 per month. Thank god for Insurance & Medicare. And since my parents were both young, they qualifed for Social Security before reaching age 65. Kidney Failure is a automatic approval. Your Mom will be assigned a Social Worker at her Dialysis Center who can answer those questions.

If you don't have this already, get a Power of Attorney for Medical resaons...I think it is called Durable Power of Attorney or something. I have to fax this before anyone will talk to me (ie dr's offices, or insurance company, etc...).

Prayers to you & your family.

 

[RweTHEREyet]

Thanks for all the good thoughts and for the information, disneyelaine. I appreciated all you had to share with me. I knew before you said so that this would not be an easy road for us, but it sounds like it is not the end of the road either. I have cried off and on all day today here at the office as the reality of this has sunk in.

disneyelaine, it sounds as if your family has had more than its share of dealing with this. I hope you have siblings that can help share the load with you. I don't, but even with all of Mom's health problems, she has been very self-sufficient up until now. I am not sure yet just what we will do. There are still too many unanswered questions.

Thanks again everyone. It really means a lot to have someone to talk to.

 

[tiggersmom2]

 

[onecoolmama]