Our Introduction

[MeatwadsKidneyCar]

Hello, we are MeatwadsKidneyCar!  Actually, we are two brothers who love Aqua Teen Hunger Force and are now dealing with dialysis!  I (John) have been my brother's Home Health Aid now for fourteen years.  This past year my brother (Joe) has had to go on dialysis.  He is now on a Baxter Home Choice Pro PD Machine.

I'll normally be the one posting here for Joe has a hard time manipulating his Kindle for the internet.  But he always has a lot of questions!  So, first I should tell everyone why we are here.  Joe was diagnosed with ankylosing spondylitis.  He has been living with it since his teenage years.  Sadly, as the disease progressed it attacked various organs and joints since it is an autoimmune arthritic disease.  It has confined him to bed and he has had both hips replaced, most recently, both legs removed above the knee due to bone fusing.

His eyes, back, joints, and now his kidneys have taken a big hit.  Dialysis is new to us.  And quite stressful and scary.  We have a good team behind us though at the Dialysis Center.  I hope to talk to many of you, swap some tales, and perhaps forge a few online friendships.  And that is why we are here. 

Thank you.

[Charlie B53]

Welcome to IHD, we're glad to have you both, but sad that you have to be here.  Joe has been through a lot, fortunately PD at home other than taking so much time to be connected, is the least intrusive as far as diet and fluid restrictions as there are virtually no restrictions.  Whereas with Hemo Joe would have to be very careful what he eats and how much fluids he drinks, constantly being aware of the fluid contained in most all foods.  That can add up far quicker than most realize.

PD has none of those limits.  The daily/nightly treatments can handle fluid removal far more comfortably than the Hemo machine pulling a lot of fluid within a few hours and causing muscle cramping.

Joe also is very fortunate to have such a caring Brother.

Keep an eye on his Labs.  PD can take out a lot of potassium, far more than Hemo does.  If Joe's potassium level begins to fall you will have to ask his team hwhat are safe levels and increase potassium in his diet.  More bananas, tomatoes, potatoes.  Mine dropped so far I had to take a potassium supplement every day.  Just stay aware what his run.

Take Care,

Charlie B53

[MeatwadsKidneyCar]

Thank you for the kind words and advice.  Unfortunately, Joe's potassium is ridiculously high.  So are his phosphorous levels.  Both issues are caused by his AS. Right now he is on Sensipar and Binders to control his parathyroid and high levels.  He's also on a restricted diet too.  Essentially he is on a protein heavy diet.  Everything seems to be backward, upside down, and crisscross with Joe's case!  Oh well, not much you can do eh?  Thank you for the welcome and I hope to see you around.

[iolaire]

Welcome to the group.

Re parathyroid - I just had a Parathyroidectomy and was surprised at how easy it was it was, it could have been outpatient but they wanted to make sure the calcium did not crash down into dangerous levels.  It seems to be helping especially on the PTH side.  The Parathyroidectomy was done because my calcium was high and they worried that high calcium might hurt my transplanted kidney.  Being post transplant it was not to fix potassium and phosphorous.  Here is my story on that - http://ihatedialysis.com/forum/index.php?topic=34720


But then like most things each unique person can have a different experience like this person who had two parathyroid surgeries and still has high PTH - http://ihatedialysis.com/forum/index.php?topic=33599 .

[Paul]

 
Hello MeatwadsKidneyCar, welcome to the site.

My sympathies and good wishes to your brother for his many problems. And also to you, it cannot have been easy being his carer for all these years, and it must have been even harder watching these things happen to someone you love.

[kickingandscreaming]

As Charlie said, we're glad to have you but sorry you have to be here.  I, too, am on PD, so I can maybe answer some of your questions.  Once you get into the swing of PD, it really isn't too bad.  It's just another task to do.  But it does do a good job of clearing toxins and managing fluids.  I hope it works well for your brother.  He is indeed very lucky to have your help. Take good care.

[cassandra]

Hi MeatwadsKidneyCar


 


Take care to the both of you, Cas

[MeatwadsKidneyCar]

Thank you, to all of you.  We appreciate all the support.   

Iolaire - Thank you for the information.  Joe's doctor has been tracking it now for just about six months.  So far this is the first medication alteration.  She had tried something the first time, but levels rose, and then they rose again and she tried the new medication.  I guess come October (He gets blood work monthly.   He also gets a special blood, urine, and a PD fluid test every three months) we shall see if there needs to be yet another change.  So fingers crossed!