Freaking out....quitely

[TexanSummer]

I just posted in the "Introduce Yourself" section, so I will make this one short (intro is long...sorry). My husband, Charles, went into ESRD just 3 weeks ago today....oh & that was the first we'd heard of him having any issues with his kidneys at all....total shocker. I am in mager distress right now trying to find any & all assistance avail for us financially. Please read intro post for indepth details. I'm sorry for the blabbering, rambling, etc, but I am just completly lost & scared & trying to keep a level head all at once.

[kellyt]

Long intros are LOVED here, so don't worry about that one bit.  How are you and your husband doing?  Where in Texas are you?  I'm just South of San Antonio.

[TexanSummer]

Charles is doing ok....better on days that he doesn't go to D, not so well when he does go. After some research on my part, I managed to find a way to keep the headaches & nausia after D at bay....he's just so tired....& more emotional than I have ever seen...some days he wants to give up & end it all, others, he's cleaning the apartment & doing laundry or cooking.
Me on the other hand...I am absolutly exhausted....emotionally gone. I am so worried about him, our daughter, & our financial state. We had just gotten back into the green...& we don't even have credit cards!!! We had gotten to the point that we could pay our bills on time for once...& then this.
I don't know how this is going to happen....we're only 3 weeks in so far...this is a lifetime event, I know, but in the here & now.....

[billybags]

TexanSummer, first of all welcome to our family  Wow I have just been reading your intro, you are really, really stressed out poor thing, I can't blame you. Dialysis is so scary to start with, you think the end of the world has come, it just hits you like a bomb shell. It is a new road you have to walk.As well has having all this to content with you have your financial side to sort out. Your husband will feel tired and nauseous to start with but as the dialysis kicks in he will begin to feel better. My husband was on hemo for 3 months before he went back to PD and when he came home he was shattered and had to go to bed, the next day he was OK and then back to hemo and it is like a cycle but it is normal for a lot of people. Have you got a social worker you can talk to? Try to find out as much as you can about this shi**y disease, ask lots of questions on here. We are all in the same boat, talk to us.

[TexanSummer]

He has a worker at the center, but either he's not hearing right & getting his info confused by the time it gets to me, or she's not doing a whole lot. While he was in the hospital, we were told by the soc worker there that he was approved for medicare, ssdi, & ssi....when he got home & started going to the center, none of that was even done....or paperwork even started. He's having issues getting some info from his previous employer about date he started & what he made over the few months he was with them, so some paperwork is at a standstill at this time, then he tells me that he was told that he had to do most all of the paperwork on his own??? I havn't seen any. I don't know what to do at this point & we're about to be with out the only car we have due to the tires & wondering if I can make the next note....I want to be able to take a day off & talk to these "case workers" myself, but being a temp, I'm kinda scared to...I know I am easily replacable, no matter how supportive the job I'm on has been. I'm still trying to grasp all of this in the first place....I can't wrap my head around  the fact that it's still only been 3 weeks......it feels like 3 decades already. I know it'll get easier with time....at least to deal with, but I want it now!!!!!  LOL

[MooseMom]

A couple of thoughts...

You could perhaps contact your ESRD network.  Texas is network 14...
http://www.esrdnetwork.org/      Maybe they can give you some information.

I know you are loathe to take the time off to see the social worker, but think about it because your husband is probably too ill and traumatized to understand what the SW is telling him.  Or, she could just be a bit dopey and not be very good at her job.  I am sure that if you were to approach your boss and explain the situation, s/he would give you a couple of hours off on this one occasion so that you can sort this out.  It's really important to the financial health of your family.  It's really unfair that someone who is so ill also has to worry about the bureaucracy of kidney failure.

Lastly, since money is tight (it is for most of us!), I would think that eventually you'd want your husband to be able to return to work.  I know that right now, that seems impossible, but if there's a way that he could do dialysis at home, he'd probably feel much better and be able to work.  That could help with the money problems.

Also, has anyone thought about transplantation?  Do y'all know any one who might consider being a live donor?

[TexanSummer]

Since this is all still fairly new to us....& I mean NEW....no docs telling us anything over the years until it was to this point....I'm not sure what is going on. I know that while he was in the hospital, either his mom or I was there just about the whole time, so we did talk to the docs a little. The docs did suggest a living donor, but his dialysis didn't even start until 3/1/11....I don't think they have gotten to the paperwork to get started on all the testing I've read about to get him on any lists at this time. We have looked into home hemo, but he has to get the fistula first...still has the cath in his neck/chest area (since 3/1/11). I know that there is a 5-6 week class that he/we will need to go to, but we can't seem to get much info on that right now.

I do have a quick question about the cath site though....the one he has now, where the incision is, it's beginning to redden a bit. We ran into a bit of a problem last Sunday night when he tried to shower...he covered it with the Aquaguard like he did at the hospital, but for some reason it didn't seem to stick as well that night....got the bandage over the site wet & I made a late run to Walgreens to get some fresh bandages, iodine, etc.....no one thought to tell us how to redress it ourselves, they just told us that the center would change it....so when he went in on Monday, he explained what happened to a nurse & got a new dressing (after the one he did the night before) with no instructions on what to do the next time it happened. When he went back in on Wednesday(yesterday) a nurse told him she thought it could be getting infected & he should get the fistula stat.....we have it sched for 4/12...the earliest opening (so we were told anyway). Charles was FINALLY told that he wasn't supposed to change the dressing with out gloves & a mask on & NOT to use iodine at all & that he probably caused the infection (if there is one for sure). The doc will be at the center tomorrow (Friday) & hopefully the doc will check out the cath site.

I found out, tonight, that Charles' health insurance was a lost cause due to the fact that it only covered up to $400/yr?? I don't think that sounds right, but Charles said when he spoke to the financial aid worker, she called the insurance co directly, with the dietion, social worker, & Charles there & they all (except Charles) had to stifle a laugh when they heard the amount covered.

I don't know what to do at this point...I know I need to take a day off & help figure all this out, but sadly that one day could make or break us that week.....But I also know I need to take off work for not just him, but for our little family as well.

[rsudock]

First point of advice don't trust social workers or anyone to help you...people are a**holes. Social workers look at us as a job not people who need help and support...sorry to be so crude about it but I have been through the ringer with my social worker...see my other posts if you like to read up on it.

Anyway here's some REAL advice The American Kidney Fund is also another foundation that will pay for your COBRA premiums. They have a website you can download the form and give it to the social worker to sign. Make sure the social worker gives you a copy of the completed form she sends in.  (Make him or her FAX it in that is the fastest way)

Also you are going to have to take a day off bottom line. You are going to need to go to the social security office and file paperwork for Social security disability and social security supplemental income (SSI). If you are approved for Social security disablity payments there is a 5 MONTH waiting period...in otherwords you will have to wait at least 5 months for a check once you are approved.

Next you need to go to children's and family services office and sign your husband up for medicaid too. Since he is on dialysis that means he already qualifies for medicare. Make sure his medicare paperwork has been put through.

hope this helps...keep on fighting!!

xo,
R

[TexanSummer]

As far as the COBRA goes, hubby told me that the forms to keep his insurance were not sent in because his insurance coverage was so low that it would be pretty much pointless....don't know what happened to that form now (he still has at least the 60 days from the date of that letter which was 2/21/11 to get it sent in....just finding it is the issue at this point).
I will be taking a day off next week to get some of this stuff taken care of that I can't do otherwise...the Medicaid app is in my hands & will be in the mail tomorrow. As for Soc Sec Dis & Sec Supp Income, we don't believe he'd be eligible for much if anything at all due to his not paying in over the last 10 or so years (well....except for the last 4 months while he delivered pizzas....)....that's what he gets for being a sub-contracter & not listening to his mom (then later on me) that he needed to pay his taxes (of course, no one could know that it would come to this point...lucky us!).
I just keep hearing different things from so many differant sources that I dont' know my left from right any more!

I really, REALLY do appreciate everyone's input...I am taking everyone's advice to heart!!!!!!!!!!!!
You all are great!!!!!!!!

[greg10]

Welcome to the forum Summer.  I am sorry to hear about your situation.  You and Charles have to hang on and look for a better tomorrow because there will be new treatments for this awful condition of ESRD and I have no doubt that if you are fairly young you will see the benefits and a brighter future.

Here are some more resources:

http://www.dialysispatients.org/texas

Care of Central Venous catheter (CVC):
www.upmc.com/HealthAtoZ/patienteducation/Documents/CVC.pdf

Korshield, a shield for showering with CVC
http://www.youtube.com/watch?v=Tyf0hG3BniU

[TexanSummer]

Greg10....thank you so much! I am at work right now so I can't watch the video, but as soon as I get home, Charles & I will sit down together & check out the information you gave.

I am so greatfull that I found this site/forum! You all are amazing! I know Charles has been wanting to talk to someone who is/has gone/going through the same (or close to the same) situation so he could have someone to talk to. I am trying to get him to sign up for the forum as well so he can get some questions answered that he may not remember or think about to have me ask. I should have him convinced by the end of this weekend at least!

Again, thanks a bunch!!!!

[MooseMom]

Yes, please do have Charles check us out.  It will be his first step toward regaining some control over his life.  There are so many IHD members who have been through EXACTLY what he is going through now, just as there are many caregivers here who can support you, too.

[Poppylicious]

Hi Summer.  I can't give you much advice regarding your financial issues (I'm in the UK; we don't have to go through the palaver of worrying about insurance) but I do know how you're you're feeling right now.  It was quite sudden with my Blokey too and it is something which completely changes your life.  On the upside, as things settle down and your issues get resolved, it does become 'normal' and things start to fall into place.  You learn to cope with all the kidneykrap which gets thrown in your direction.

With regards the showering: my Blokey (husband) had a chest catheter for eighteen months (he refused to have a fistula for a very long time!)  He was so worried about getting an infection that he point blank refused to use the shower.  Thankfully he kept himself clean in other ways!

Has anybody spoken to you both about PD (peritoneal dialysis) as a home dialysis option?

*huggles* for your little family as you all come to terms with this.

[TexanSummer]

Yeah, I've looked into PD & talked with Charles & his neph's while he was in the hospital. That's not something he's willing to do...he's a major water lover & from what we've been told, submerging & a PD don't work well together. We have thought about doing the home hemo once he gets his fistula & it matures....but he is having a hard time coming to grips with the 6 week long class for it....but thanks for the suggestion!! 

On a lighter note, on his good days, he is CLEANING!!!!!! One day, I came home from work & didn't have to clean, do laundry, or even cook dinner!!! I didn't know what to do with that extra time!   I wound up on Facebook & did some more research online as well....but it was nice!

[MooseMom]

The classes for home hemo don't have to last that long!  It really depends on how quickly the patient absorbs the information.  Some people just need longer before they feel comfortable going home with their new machine.  Anyway, it is worth the investment of time.  He will be able to dialyze at home to suit his own schedule, not a clinic's schedule.  It really is worth thinking about. 

[TexanSummer]

I found out today that it may take a little while before Charles can get his fistula....ran into insurance issues that I'm still not fully sure about it seems. I told him to ask about starting the home hemo classes asap so we could get his Medicare to kick in quicker (medicaid is in the works) & get the fistula done. I don't know though...do you have to have the fistula before you can take the classes?  He won't go back to the center until Monday & I am kind of impatient I guess...I'd like to know sooner   

@Greg10...again thanks for the links....the youtube video however, not quite suited for him due to the fact that he doesn't have a Koreshield...or even where to get one....we're not sure it would be quite right for him at this stage....so we're still trying to figure out how to keep the cath site from getting wet when he showers....we have gotten a hand held shower head...but even with the aquaguards...it still gets wet. We do know now how to change the dressing if/when it does get wet..again, thank you Greg10!!!   

[lmunchkin]

WelcomeTS & you are at the right site. We too were going through life living wonderfully not a worry in the world when in 2004 he was diagnosed ESRD. Our world turned UPSIDE DOWN & INSIDE OUT! We started out on PD (1 wk course) then after a few years in & out of hospital, he went In-Center! I know that In-center is there for a purpose, but He hated it, cause you  are at their mercy. You get there at the time given you, and for whatever reason, they get you late. They do have to rely on alot of water pressure, electrical & maintenance problems, not to mention, techs calling out and so on....He was in-center for 6months.
Finally, our Neph asked why we werent doing Hemo at home. "What"  I didnt know you could do it at home!  Say no more I said sign us up. We did and Im like MooseMom, it was the best investment of our time.  We will be 3 months shy of a year doing Nxstage at home and we couldnt be happier! One thing though, do get the fistula. It too is worth the time.
If you decide to do Home Hemo, just dont get frustrated or overwhelmed (like I did), just visit with IHD and ask anything you like.  We are here to help.   
Hang in there! It aint perfect, but it will get better. And let the Good Lord know what's on your heart!

[TexanSummer]

Well, I had another scare today....he drove himself to D....it's not the 1st time he's done so, but it IS the last....for a while anyway. His BP dropped way low & they wouldn't let him leave. Since we only have the 1 car, his mom picked me up from work & drove me & our daughter to the center to get him....He was really out of it. I'd seen him like that before, but that was before he was diagnosed. Got him home, realized that he was completely out of his PHOS binders (took his last this morning) & we are flat broke with the insurance still up in the air. After I got him & kiddo settled, I went to check the mail & about fainted with relief when I saw the letter saying that he was approved for the KHC & I immediately called the pharm to get that info put on to his scripts....so instead of having to come up with the $80 + for his PHOS & vitamins, it was about $9!!!!! I hadn't been that excited about meds in a long time! Now, we can get that blasted fistula done & then just have to wait till Wed to talk to soc worker to find out why they say he shouldn't continue with the COBRA.....still not sure about that one...keep getting told that the plan he would have is a complete waste of time & $$ we don't have & to let Medicare cover it all when it kicks in....I will be taking off a day next week for the Medicaid appt......hopefully that goes through & I will feel a little better! I haven't had this much happen in less than ONE MONTH in a long time!!!!!!
   PHEW!

[billybags]

I am so pleased for you.

[greg10]

Hey Summer & Charles, looks like things are looking up a little, that's good 
Korshield is not that important as long as Charles can keep the CVC site clean and water proof, but you can check out korshield.com.

The most important parts about dialysis is to get enough of it and keep it mild enough that you don't have episodes of too high or too low a blood pressure.  Most in-clinic patients don't get enough time on dialysis due to the way for profit centers run (get more patients in and out).  The more time you can spend on dialysis, the milder your ultrafiltration rate can be (the rate to which excess fluid is removed from the patient, because you have the luxury of time to slowly remove the fluid in a manner to which the patient's blood pressure does not drop too rapidly.  The more time you spend on dialysis, the more efficient, generally, is the dialysis.  Many find that they can get off phosphate binders completely once they get enough dialysis, however one should still watch phosphate intake.

There is something called the HDP (Hemodialysis product) that is a number representing approximately how well a HD patient is getting dialysis.  Normally an in clinic patient may have 3 hours per session times 3 times a week.  The HDP is then calculated as HDP = 3 hr x (3 squared) or 3 x (3x3)= 27.  HDP of 27 is a low number.  One should try to get to HDP of about 70 or more, that means more hours and/or more frequently.  If you can get nocturnal dialysis of 8 hours, 3 times a week, HDP could be:  HDP = 8 hrs x ( 3 squared) or 8 x (3x3)= 72, which is a good number.

The Hemodialysis Product
Based on published evidence from many sources, we propose a new index of adequacy of hemodialysis, to be called the
Hemodialysis Product (HDP). This new index incorporates dialysis frequency, which is an important variable:

HDP = (hrs/dialysis session) x (sessions/wk)^2

HDP doesn't take into consideration of body weight, but in general, the heavier a patient, the more dialysis is required.

[Poppylicious]

Hi Summer, I'm glad that your freaking out has subsided a little!  What a relief about the approval.  One less thing to worry about now ...

*huggles*

[lmunchkin]

Great news , TS.  Hang in there & remember you are doing the best you can and that is all anyone can ask of you! Thank goodness you are there for your loved one!

[TexanSummer]

Today was not a good day. We are still trying to figure out what is & isn't ok.....over the weekend, Charles had too much salad & pineapple it seems.....& too much to drink (not alcohol). He went to D today & they took off 4L & told him he would need to add Thurs. to his sched. for this week along with Wed. & Fri. He has an appt to meet with the vascular surgeon tomorrow & his mom will take him to that...I hope we can get the fistula in place soon. I don't know how much more of this up & down I can take....not that I will leave him because of it, but it scares the crap out of me each time they have to take off more than 2L of fluid......I don't let him see how much it worries me because I don't want him to freak out more than he already is. He did some "reading" today & found out that 1 in 5 people die with in the first year of starting dialysis. I told him that I didn't think that the way the numbers came about was entirely true....I think it included people older & with more medical issues than he has....it seemed to settle him down a little. He's wanting to try to get life insurance....I think it's too late for that. We're strapped enough as it is & that would cost quite a bit to start....if we could find anywhere to start it....ugh, I hate thinking like this!!! I am so ready for bed right now!

[MooseMom]

Yes, the statistics are skewed because of how many people are on dialysis who also have some other very serious issues that caused the kidney failure in the first place.  It is very good to be educated about renal failure, but you can scare yourself stupid in a very short time, indeed.  Everyone seems to experience ESRD in a different way, and the results you get from dialysis depends on a lot of things, including how well the patient follows his/her treatment regimen.  Your husband will be more likely to die in his first year of D if he skips a session each week, right?

A lot has happened to you both in such a short time.  You don't have to solve every problem right now, this minute.  But I know it is scary.  Let us know how we can help.

[Poppylicious]

This is all still very new for both of you.  It can take a long time to adjust to a renal friendly diet and I know that Blokey really struggled with his fluid intake at first.  I can't imagine not being able to drink whenever I want, for as long as I want; I imagine that if someone suddenly said to me, 'Right, that's it.  You can only have *this much* liquid a day, including soups, sauces and ice-cream!' then I would really struggle too, and I would be very sad. 

At first I used to nag Blokey.  Or I would roll my eyes.  I'm not sure if it helped, or made it worse.  Now I just accept that he's a big boy and he knows his limits.  He also knows the consequences if he 'over-indulges'.  I have to trust him.  Eventually Charles will learn what his body can and can't take and that will give you some peace of mind.  I do know that the 'getting there' is sooo hard though.

*huggles* for both of you.