The Unofficial Chatterbox Thread! Everyone is Welcome!

[funnygarcia]

ahhh, I get it.

Then she has started dialysis.

E was sickly for a full year, just getting use to dialysis... takes awhile to figure out dry weight and the best mix of medications and dialysate.

It's scary, but as you can see with E.. it's not the end. He's been dialyzing for 10 years now, but he's an odd duck since he does not have any other illnesses. Diabetes tends to make it a bit more complicated.

 

[dizzyami]

ahhh, I get it.

Then she has started dialysis.

E was sickly for a full year, just getting use to dialysis... takes awhile to figure out dry weight and the best mix of medications and dialysate.

It's scary, but as you can see with E.. it's not the end. He's been dialyzing for 10 years now, but he's an odd duck since he does not have any other illnesses. Diabetes tends to make it a bit more complicated.

The diabetes is the part that has me freaked out....she can't handle any kind of fluctuation....so needless to say (as you have noticed) I am slightly (ok, completely and totally, to the point that John came home from work) freaking out!!! I am so worried about her that it isn't even funny! Sorry to hunt you down, but as soon as I found out I thought of you and everything you have gone through

 

[funnygarcia]

Completely understandable.

What would you like to know? and you can call me if you want.. I'm just waiting on E to finish dialysis, had to wait for the storms to run thru- The possibility of losing electricity half way thru and fumbling in the dark was sooooo not appealing.

 

[dizzyami]

Completely understandable.

What would you like to know? and you can call me if you want.. I'm just waiting on E to finish dialysis, had to wait for the storms to run thru- The possibility of losing electricity half way thru and fumbling in the dark was sooooo not appealing.

I really don't know....just somehow talking to you about it would make me feel a little better. I have always had a rocky relationship with her...but she is the only thing on that side of the family that I have.... it just all hit me so suddenly.....and I knew that you would understand....


Good news is John was able to come home (my nephew covered his close shift) it just does not look good for her...she is so strong mentally, but her body is soooooo weak...

 

[dizzyami]

My store decided to give me tomorrow off...so I offered to go see her (and bring the kids)....she would only tell me that she didn't want them to see her weak...too bad she told DH that she wasn't allowed out of bed at all for another week.......add onto that the fact that her DH has not had a job in months...they can't be in a good financial state...she is off work....it has too be too much for her to bear and she won't even tell me about it!!!!

 

[funnygarcia]

The financial aspect is scary... but not hopeless.

Is she old enough to be on Medicare yet?

If not, she will automatically qualify for Medicare, it will start 3 months after diagnosis .

It's also one of the automatic diseases for social security disability.

 

[dizzyami]

The financial aspect is scary... but not hopeless.

Is she old enough to be on Medicare yet?

If not, she will automatically qualify for Medicare, it will start 3 months after diagnosis .

It's also one of the automatic diseases for social security disability.

I saw that when googling "end-stage renal disease". She is 53 right now...not sure where that puts her........I guess I should have seen it coming (she has been diabetic for 20+ years...I diagnosed her....) I guess I never expected the "bad" results of it to happen to her....but here they are

 

[dizzyami]

Her sis is trying to be a donor..but she has 2 years left, and doesn't want her to do it. Even then I am not sure if she will qualify because her health is so bad.

 

[funnygarcia]

Medicare covers 80% of the cost of dialysis (centers try to charge about $35K per month.. note the "try", Medicare will say they only can charge a small portion of that amount...), the remaining 20% is roughly $40 per session (3 sessions per week is average).

Most people get medical aid from the state/county or buy a medigap plan to cover the rest.

She may be tired, weak for a few months. Depends on level of anemia (E got a blood transfusion during his first hospitalization), how long the dialysis was put off , etc.

 

[dizzyami]

Medicare covers 80% of the cost of dialysis (centers try to charge about $35K per month.. note the "try", Medicare will say they only can charge a small portion of that amount...), the remaining 20% is roughly $40 per session (3 sessions per week is average).

Most people get medical aid from the state/county or buy a medigap plan to cover the rest.

She may be tired, weak for a few months. Depends on level of anemia (E got a blood transfusion during his first hospitalization), how long the dialysis was put off , etc.

I will have her look into all of that....I know her job barely pays her insurance cost, and a bit more...not sure how she is affording her mortgage (especially in AZ where housing values have plummeted out of control. I just don't know if her body can handle the weakness...she already has so many issues and any kind of "illness" throws her body into complete rejection and she is "comatose" for a couple of weeks

 

[funnygarcia]

It will take awhile to gain back her strength, docs like to have the person more "balanced" before they transplant... surgery and meds do take a toll.. but thanks to better treatments, transplant is not not the only option.

She is still too new to the process.. but something that I hope her nephrologist suggests is to look into all the options/choices in dialysis...

Peritoneal is a good choice for some people, they put in a cath in the abdomen.. put dialysate fluid in, drain and refill a few times a day or just at night.

Hemodialysis in center -- poorest choice IMO. The bonus is you don't have to "deal with it" , show up and have your blood cleaned for 3-4 hours 3 days a week.

Nocturnal in center -- good choice... go to a center and sleep at night while dialyzing. Slower process,easier for the body to handle. Sucky part-- trying to sleep 3 nights a week in a dialysis chair. UGH!

Home hemodialysis short daily.. 5 to 6 sessions per week , 2 hours each. Frequent dialysis, very good and better for your body. sucky part-- it invades your home and need to learn lots of confusing things.

Home hemo , daily nocturnal--- the extreme best of the best! Your kidneys work for you 24 hours a day, thus the more time you get on dialysis to remove the "gunk" the better. Gentler on the body, slower process, do it at night.. days are free.
Sucky part.. not many centers support this process. again, machine is there in your face all the time.. This is what I would like E to do, it would be perfect for him!

 

[dizzyami]

It will take awhile to gain back her strength, docs like to have the person more "balanced" before they transplant... surgery and meds do take a toll.. but thanks to better treatments, transplant is not not the only option.

She is still too new to the process.. but something that I hope her nephrologist suggests is to look into all the options/choices in dialysis...

Peritoneal is a good choice for some people, they put in a cath in the abdomen.. put dialysate fluid in, drain and refill a few times a day or just at night.

Hemodialysis in center -- poorest choice IMO. The bonus is you don't have to "deal with it" , show up and have your blood cleaned for 3-4 hours 3 days a week.

Nocturnal in center -- good choice... go to a center and sleep at night while dialyzing. Slower process,easier for the body to handle. Sucky part-- trying to sleep 3 nights a week in a dialysis chair. UGH!

Home hemodialysis short daily.. 5 to 6 sessions per week , 2 hours each. Frequent dialysis, very good and better for your body. sucky part-- it invades your home and need to learn lots of confusing things.

Home hemo , daily nocturnal--- the extreme best of the best! Your kidneys work for you 24 hours a day, thus the more time you get on dialysis to remove the "gunk" the better. Gentler on the body, slower process, do it at night.. days are free.
Sucky part.. not many centers support this process. again, machine is there in your face all the time.. This is what I would like E to do, it would be perfect for him!

Her option right now is the in-center 3/hours day. Not sure how this will work. I guess DH had a dream three weeks ago that the only perfect match was her mom (and he had no idea that she needed any kind of transplant) needeless to say things are a bit emotional right now in the dizzy household.

 

[funnygarcia]

I will have her look into all of that....I know her job barely pays her insurance cost, and a bit more...

Her dialysis and hospital social worker will be guiding her in the process to apply for Medicare and Social Security .. they're suppose to offer resources and support in other ways..

Good social workers step up and truly help, we just happen to have a not very good one.
-- our center is "for profit" (just a few are nonprofit), making social workers into billing specialists for the most part.

The other fun to learn.. the renal diet-- yum yum -
E doesn't follow it, naughty guy.
When you visit, dont tempt her with gifts of high potassium fruit, chocolate, dairy, coke (high phosphorus), whole wheat , soy products... it's all white bread and plain looking food. YECK!

 

[funnygarcia]

needeless to say things are a bit emotional right now in the dizzy household.

I totally get that... the first time E came home after in center dialysis I wanted to cry.. he needed me to help him upstairs where he upchucked and then crawled into bed to sleep all day. Big changes that year, people tend to forget that the family and spouse are suffering from this too. The words "end stage" leap out and make you think all sorts of "what ifs".

I tend to push the "what if" dark and dreary to the side.. it doesn't do much good to contemplate that scary place. When we get to that.. then I will deal with it .. for now, one more dialysis session = one more day of life and happiness together for all of us.

 

[Albort]

wow, what a day. on thursday, Eatmypixiedust came to visit me at work and we talked for about 45 mins and bored the crap out of her cousins. She seems well. I hope she gets a lot better soon.

Today is such a weird day. They had Disneyland Dr blocked off for a good 1 hour today in the afternoon. Police and firefighters were all there... very very interesting... :|

 

[funnygarcia]

Hi Albort!

Why was it blocked?? accident?

 

[Albort]

Hi Albort!

Why was it blocked?? accident?

Smoking pizza oven causes fire scare at Disney hotel
Disney’s Grand Californian Hotel was evacuated earlier today after one of the pizza ovens started smoking.

Smoke was first seen about 2 p.m., causing a fire scare. The fire was cleared up within 30 minutes.

“As a precaution we began evacuating the hotel, but it’s really a non-issue,” Disney spokeswoman Suzi Brown said.

The number of people evacuated was not immediately known.

Twitter user @SarahSmudre first wrote about the news of the fire at the hotel on the social-networking site.

“It was just cleared by the fire marshall about five minutes ago. All the guests are back inside, thankfully,” she wrote soon after the fire.

“It’s now relegated from crisis down to interesting anecdote. Now to resume the vacation,” @SarahSmudre ‘tweeted.’

^^ that, but i heard differently... :\

 

[funnygarcia]

It was more that that?? Anything to avoid bad press, not that I blame Disney for sugar coating during this time. Don't want to scare any tourists away!
Sounds like it was taken care of very quickly.

 

[funnygarcia]

Another dialysis run done.

Goodnight..

 

[staley7580]

Her option right now is the in-center 3/hours day. Not sure how this will work. I guess DH had a dream three weeks ago that the only perfect match was her mom (and he had no idea that she needed any kind of transplant) needeless to say things are a bit emotional right now in the dizzy household.

Im so sorry Dizzy.