New here...Intro and ongoing challenges

[LostWife]

Someone suggested I post here as well as the spouse forum, so here is a repost of what I posted there.  Thanks.

Hi, I am new here.  My husband went on dialysis in Sept 2008.  I was 5 months pregnant at the time. Since then, our lives have been a nonstop stressball - tons of hospital visits, me having to chose between him and our son, etc.  I just can't do it anymore, I am at the end of my rope.

He does PD and that seems to go well most of the time,  but he can't use the cycler b/c it pulled off too much fluid and made him collapse twice.  So he has to do manual bags five times a day.  Wasn't there supposed to be a newer version of the cycler at some point? b/c that would make life so much better, I think.

Our son is now a toddler, and is in daycare, and is bringing home every bug known to man.  Because of this my husband has been in and out of the ER and had prolonged hospital stays  - he just cannot handle the germs.  We can't afford a nanny (we live in DC and can barely afford our daycare) and I've tried everything I can to boost his immune system but he just can't shake the tiniest thing.  I have tried to boost his immune system with probiotics, anti-oxidants, etc...none of it seems to work.  Short of renting him a separate apt. during cold/flu season I am at a loss! 

This past thanksgiving (3 weeks ago), he got the stomach flu - I did too.  His turned into an ER visit, then 5 days later into pneumonia, and he was in the hospital for 4 days.  Now he has a raging kidney infection and is back in the hospital.   Now he is in the hospital, they said at first it was fluid on his lungs, then a kidney infection, but now all of the labs have come back negative....The right kidney is definitely inflamed and terribly painful, but the drs don't seem to know why.  He's never had this issue before (but then that's the case with most of his problems)

I am petrified he's going to lose his job and his health insurance.  He's on Medicare but I guess it doesn't really kick in until March (I'm clueless about that).  I am so so scared right now.  I feel like I am drowning and I just don't know how to be a new mom and a caregiver and work FT all at the same time.  We have no family in the area and I would move but we can't sell our house in this economy.  I just feel painted into a corner every time I turn around.

On top of the ESRD (which is from IGAN), he has gastroparesis that was diagnosed last year.  It seems to flare up and come and go...but he does have a struggle with it frequently.

He is on the transplant list at Columbia Hospital in NY, UMD Medical Center (which we just found isn't covered by our new insurer    ) and at Georgetown University Hospital.  We'll try for Hopkins next.   

Anyway, I came here to hopefully get some support and hear some words of wisdom.  TIA

[cariad]

  to IHD! I am so glad you've found us.

I can relate to a lot of what you've written, although I was the one who had the renal issues.

Firstly, if your son is anything like (both of) mine, you are currently smack in the middle of the absolute worst stretch of time for a child and germ-carrying. My older son attended preschool from 18 months, my younger son from infancy, and both times, until they reached about 3, I was ill almost non-stop. I contracted strep from my younger son's classroom (not even from my son, just from walking into the room) and viral meningitis most likely came from an outbreak of hand, foot and mouth in my younger son's class. I know does not help you in the least right now, but chances are it will get much, much better if you can just find a way to get him through this winter. Although I was immunosuppressed, I was far from the only one getting sick. Daycares are like that - the infectious disease specialist who acted as my doctor when I had viral meningitis told me that he's seen otherwise healthy individuals totally incapacitated by daycare. Please make sure he receives all his vaccines - flu and pneumovax are crucial.

It is great that he is multi-listed. You sound like you are really on top of those options.

Perhaps home hemo would be a better option if he is really struggling with PD?

We also are stuck where we are due to the housing crash. We would like to move overseas to be closer to family and to leave insurance issues behind. We have looked into options, but since my husband started a new job this morning, we are going to just stick it out here for a while longer. I don't have any advice, just loads of sympathy. 

Being a new mother is terribly stressful, and you have a lot compounding that. Please keep coming here to tell us about your feelings, and to ask any question that pops into your head. Someone here almost always has an answer. Hugs to you in your time of stress! 

[LostWife]

Thanks for your advice and support.  We do try to always wash hands but of course in the hectic day to day sometimes forget.

I wonder if he totally stopped doing any dropoffs/pickups at the daycare if that would help some?  Your line "just from walking in the room" made me wonder that.  If I take over all contact with the center, maybe that would help?

he does have all vaccines but we were told the pneumonia one really only protects against one kind.  This last pneumonia came from the stomach flu -- they think he aspirated some while throwing up.

My husband is absolutely petrified of hemodialysis.  I understand his fear but I do wonder if it would be better - 2 hours at one time vs. 5 times a day?  I do understand it is harder on the body??

We got on all of the lists b/c we are fortunate to have Dr Appel as a consultant, and he told us to do that.  I am AB+ and he's B+ so we are no match.  We thought about trying for a paired exchange but with a young child we are fearful of both being in surgery at the same time (also before that I was pregnant, breastfeeding, etc)  I wish he was my blood type, if only b/c the wait time for AB+ is so much less.

-LostWife

[paul.karen]

  Lostwife

Im glad you found IHD.

I dont have much advice just a welcome for you.

I will say that i also do PD and am interested in if your husband ever set his machine on Tidal?  I imagine the machine would be much easier then doing five manuals a day.  Anyhow with the machine set on tidal you can control how much is taken off.  It will stop taking of fluid at a set amount.  And the less he hooks up and unhooks as you know the less chance for peritonitis.

Stay strong you are doing all you can.
P&K

[monrein]

I want to welcome you to IHD and although I have no specific wisdom or advice about your situation I do want you to know that I understand only too well the enormous stress that can come with this disease.  So many people see and understand the difficulty of the person who's ill but the spouse struggles even more in my opinion and is often not the recipient of the same care and support which is so desperately needed. 
I really wish that you were enjoying the normal stresses of being a new parent and not this awful pressure that you so poignantly describe.  Here at IHD, we do understand things that people who are fortunate enough to be sheltered from chronic illness like ESRD, simply cannot.  I send you as many cyber hugs as possible and hope that you will find some comfort here.   

[cariad]

Thanks for your advice and support.  We do try to always wash hands but of course in the hectic day to day sometimes forget.

I wonder if he totally stopped doing any dropoffs/pickups at the daycare if that would help some?  Your line "just from walking in the room" made me wonder that.  If I take over all contact with the center, maybe that would help?

Yes, I think this could only help. That particular day I went to collect my son, I remember I was in the room only long enough to sign him out, did not have contact with other kids, and yet a teacher and I both came down with a really brutal strep. It took me 3 weeks to recover and my creatinine spiked. Kids at your son's age are so grabby anyhow - I would have kids putting their hands on my bag, my keys, handing me pictures and toys... it is inescapable at that age. Now that my son has graduated to kindergarten, the other kids do not swarm me like they used to.

My husband is absolutely petrified of hemodialysis.  I understand his fear but I do wonder if it would be better - 2 hours at one time vs. 5 times a day?  I do understand it is harder on the body??

Some people do find PD easier to tolerate, but it does not sound like your husband will turn out to be one of them. I can understand his fear, but home hemo is the gold standard of dialysis and should give you the best results long term. But I also think that needs to be up to him.

We got on all of the lists b/c we are fortunate to have Dr Appel as a consultant, and he told us to do that.  I am AB+ and he's B+ so we are no match.  We thought about trying for a paired exchange but with a young child we are fearful of both being in surgery at the same time (also before that I was pregnant, breastfeeding, etc)  I wish he was my blood type, if only b/c the wait time for AB+ is so much less.

My husband donated to me, down in Chicago about two hours from where we live. Our kids were 3 and 7 and my family did not know a thing about it (they were on the West Coast anyhow) and his family are even further afield in the UK. The way we survived it, which needed to include an incredible amount of luck, I grant you, was to start opening up to the people around us. We were not particularly close with any people here - not to the extent that I felt at all comfortable opening up this aspect of my life to them - but once we did, we were absolutely overwhelmed by the response. People offered to take our children, they cooked food for us, they would stop me in the halls after transplant to ask how we were doing, they would ask how they could help. We received spectacular help from one friend who flew in from California (our support person) and eventually my parents found out and flew out to help us. Our recovery was slow and complicated (there are reasons for that that I won't go into now) but here we are, approximately 9 months later and I feel like I never had kidney failure. All this to say, I would suggest you do not totally rule out paired exchange. Would any of your family offer to take your son for a few weeks or even a month? The advantage to having a child so young is that he won't remember the stress and fear of the time. My eight year old remembers vividly and I hear comments from teachers about how he has been affected - nothing horrible, but for example, a teacher mentioned 'Oregon' and he heard 'organ' because that is where his mind is to this day. I don't hear that from my younger son's teachers.

I wish you luck and hope that it helps to see just how many people are behind you now that you've joined IHD. I look forward to getting to know you better!

[LostWife]

RE: Tidal setting.  I have never heard of that.  I do know he tried to figure out how to set the machine to not pull off so much but was unable to do so.  He ended up jumping out of bed and fiddling with it every single time it drained.  Which of course, disturbed both of us multiple times per night.  The two times he collapsed were very severe - he was out for about 5-7 minutes.  It was so scary.

Now he has raging insomnia (can't be touched by Ambien or Lunesta or most other drugs) and I'm afraid he'd go crazy being unable to leave the room where the machine is for 9 hours.

Please tell me more about in home hemo?  I have not looked into any hemo since he has always done PD.  He has a hangup about hemo, mostly b/c his father died of lung cancer and when he sees hemo patients (at the center) it reminds him of his dad's chemotherapy.  Do the patients sleep better on home hemo?  I know I have to participate but in what way?  What are the problems associated with it?  Can he still work?

Cariad, I certainly don't want my son to remember any of this.  I keep thinking that at least if we get a kidney from the list soon, it could last hopefully until he is a teen or longer.  I feel so sorry for him, being born into this situation, this household of uncertainty, never knowing what a day will bring.  On the other hand, he has brought us such joy that I cannot fathom how difficult this all would have been without him.  Last night he made me laugh and that was the only time all day I had done so.

[paul.karen]

Does your husband have bad cramps when doing PD?  That is one of the signs that you are pulling off to much UF.  Also when he was on the machine what color bags was he using?  As for setting the machine to tidal i cant recall from memory how to do it (i dont use tidal)  but your nurse should be able to show you how to do it.  Setting the machine is generally very easy.
I cant imagine how scary it must be for the both of you for him to have passed out like that. 
If he switches to hemo or stays on PD i wish you both the very best.

As for insomnia i think that goes hand in hand with us kidney folk.  I have a nice recliner next to my bed so i can watch TV while hooked up for my nine hours.  I also take a drug to help me sleep.  Atavin it works well which surprised me cause most sleeping pills would get me to sleep but only for a few hours.

I use a Baxter machine.  i do 2 6l bags plus one 2 l bag.  A total of 6 fills a night at 2300ml per fill.  I have to hook up around 8pm so i can unhook at around 5AM to get ready for work.
I use one green and two yellows.  Or if i feel bloated i will use all greens.  Have yet to use a red which pulls off the most liquid.  I pull off about UF 1200 to 1350 ml a night.  I also urinate alot still.
I think i will have to switch to hemo in the future for better clearances, i dread that day but will do what i have to do.

Again wishing you both the best.

[boswife]

hi and welcome to another wife caregiver... You have it much tougher than i do, but there have been times that i felt that i could bear no more   Those are the times where his health is so bad and i had to sit and live in total fear.  VEry hard to do..  We, ok he is now on dialysis for 1 1/2 years and we are just begining stage of learning home hemo.  (just to brag for a second, i did both of his needles today perfectly  )    I had a huge fear as well to get over as i had a needle phobia that i thought would prevent us from doing this.  WEll, guess what, desire over took fear, and i believe this is going to be our answer..  You will find out so much info (if you get the time, i know your very busy, but...) if you just get some moments to read over some of the home D and the NxStage stuff right here on this site.  Great family you found here.. So many experiences will give you such relieve knowing your not in this alone.  All the best...  boswife

[Desert Dancer]

Hi, LostWife and  to IHD. I don't have any words of wisdom but I just wanted to offer you sympathy, support and a great big hug.  It's sounds like you've been through the wringer in the past two years. Also, as cariad said, have you looked into home hemo? It is the gold standard for dialysis and some home hemo modalities have outcomes equal to a cadaveric transplant. Here are a few links to home dialysis information:

http://www.homedialysis.org/
http://www.nocturnaldialysis.org/

Even if he does stay on PD, there are lots of people on this forum who are also on PD and you will find them to be a treasure trove of information. I hope you'll stick around!

[cariad]

LostWife, I agree with Paul, do suggest that your husband try Ativan. It works for insomnia, better than those drugs that are made specifically for insomnia.

I don't know a lot about home hemo, but many here do. Your participation, as far as I can tell, would involve cannulating your husband (unless he wants to do that himself, which most people prefer) and learning how to handle alarms and other emergencies. Primarily, it is just to be there in case something goes wrong with your husband.

How long is the wait for transplant in your area for type B? There is also ABO incompatible to explore, but I would highly recommend doing paired exchange before going that route. ABO is a relatively new procedure and involves extra pain and risk to the recipient.

[LostWife]

Thanks everyone.    He does use Ativan, and while it relaxes him it doesn't keep him asleep.  That seems to be the issue - staying asleep.  He does have Ambien CR which is supposed to help but it does not.

I should also clarify - we no longer have the overnight cycler available to us - they took it when he said he didn't want to do it anymore b/c of the collapse.  Now if we could fix the insomnia, I would probably ask him to try it again and use that tidal setting...

As far as hemo goes, I know he'll be a tough sell. He's really scared of it.  I am petrified of fainting if I had to use a needle on him also.  BUT we have discussed updating our basement bathroom with a shower so we could make that into a living space.  IF we could get that done, I'd try to find a responsible nurse or nursing student and give them a free place to live in exchange for some help. 

He's still in the hospital and they still don't know what is wrong.  They think it might be a kidney stone but they don't know.  His pain has dissipated but he still has some.  I am in a panic b/c it is going to snow today and I have to figure out how to possibly get him home as well as get to my son in daycare on time (b/c ppl are idiot drivers in even a 1 inch snow!!) 

I usually hunker down and power through this type of thing like a linebacker.  I really do.  This week, I am just dissolving into tears nonstop.  I think I am just at a breaking point.

[looneytunes]

Oh Lostwife, I'm so glad you came to IHD.  This ride can be overwhelming for the toughest of us.  Please realize that you are not alone in this and there are a lot of caregivers out here (me included) who can understand your situation and offer you a shoulder to lean on.  My hubby has also had some scary situations and the constant worry that another crisis lurks just around the corner is a heavy weight to carry.   Take things one day (and sometimes one minute) at a time and every day take the time to do one thing for yourself.  It's so important to remind ourselves that we can't take care of someone else unless we keep our own strength up.  I'll be keeping you in my prayers. 

[Poppylicious]

  LostWife. 

Sincere sympathies from another Wife ... being the partner can be tough, eh?  I really don't know how I'd cope with a baby thrown into the equation too.  My Blokey does haemoD.  He tried PD but was one of the unfortunate folk whom it doesn't work for.  He was always adamant that he wouldn't have a fistula, but now he has one and he's actually happier (and possibly healthier) than I've seen him for a while.  He won't even look into home haemo though (I think he thinks I think it'll be a strain, and he's right, but I wish he wasn't).

Being a wife is definitely a constant worry. Has he taken his medication? Has he had too much fluid? Why does he look so tired? Is he even breathing? Are we going to get through the day without anything bad happening? Have I really got to walk all the way to the chemist to pick up that medication?  Is he getting a cold? Oh my, is he going to be sick? Why is he making that weird noise ... oh, he's singing! (< that last one happened just yesterday!)

 

Speaking of babies, I'm hoping to be a donor for Blokey sometime during 2011 (I have the teeniest amount of weight to lose first) and every single time I see the transplant coordinator she says, 'Wouldn't you like to have a baby first? You do know the risks don't you?' All I can think is that having a baby whilst he's on dialysis isn't going to be enjoyable.  I want us to enjoy the pregnancy and the baby; with the situation as it is I don't think I could cope with a pregnancy/baby as well, and I know that he definitely couldn't. *sigh*

You're an amazing woman.  I'm sorry I have no advice for you, but feel free to weep and rant and grumble on here ...

*huggles*

[LostWife]

Thanks all.  I'm back to rolling with it a bit.  Got a plan going for today, I think.

I had a lot of miscarriages before having this child, and about 4 months into the pregnancy I told my husband "I am finally happy, feeling like this one will stick."  The next day we got the call that he was in renal failure.     It was just the worst thing.  Then he had to have the cath placed, and he underestimated how bad the surgery would be and I ended up having to help him in and out of bed at 5 months pg, and he had about 50 pounds on me.  It sucked, there's really no other way to describe it.

We have really really truly been so happy to have a little boy, even if it has been tough.  I can't describe the conflicting emotions I have but he is a light in our lives, when there isn't much light anywhere. 

[Rerun]

TIA you are getting lots of advice here, so I'm just going to step back and welcome you.  I'm glad you joined; you will find lots of support here and if you just need a bitch session come on over.  We are all ears!

Rerun, Moderator        

[LostWife]

Many thanks all.

So my husband was released Friday from the hospital and I just had to drive him back to the ER.  He is having severe lower right abdominal pain - basically right where his appendix would be if he had one (removed 2000).  He was there for 4 days and nights last week and they ended up saying it was  kidney infection.   we just have no clue where this pain is coming from.  It is incredibly difficult to deal with this. 

I honestly don't have a lot of hope right now that they'll actually diagnose it correctly.  I feel like they just bandaid him over and over again.  I don't know what to do.

[boswife]

This is the hardest stuff ever to go through..   we're doing OK right now, but i tell you i understand you pain and exhaustion as others here do too.  I have no answers as to how to get through it except that i pray my way through.  Im very glad you found your way here because at least for me, it brought me so much more hope seeing that these ups and downs dont necessarly mean the end.  Just another thing to get through.  Every hospital visit, every dr apt, i would sink a little further, but these guys just help pick ya up and streighten ya out.  (not what im doing im just feeling bad with you)  I wish you some healing, rest,  and a resolution to this pain of his..  Im sorry and i do hope someone comes on with somethig more uplifting.  Wishing you the best..

[LostWife]

He can't get seen in the ER.  I'm home with the toddler.  I told him to grab a pain pill before we left but he didn't b/c he thought he'd get something there instead.  Now he is in screaming pain and crying and they are all full in the ER.   

I feel sick - there's literally nothing I can do.

[boswife]

Im so sorry for you...  making me sick and sad...  They wont even keep him to wait??  and give him something while he's waiting?  I cant even believe how awful this is..  Call an ambulance and have them take him in.  That may be your only alternitive... im so sorry

[LostWife]

He finally was just called back after 2 hours of waiting.  I begged him to let me just come with a pain pill and he kept saying no.  I sat here and seriously thought about leaving the house while I drove it over there, and just hopping the baby would stay asleep.  How awful.  I'm always having to chose between them (or at least that is how I feel).

I simply cannot believe we're back to square one.  I just can't.  Why is it so difficult to diagnose him?

I'm going to bed.  I have a feeling tomorrow is going to be a bad day.

Thanks all.  g'night

[boswife]

Thank God!!  REst little lady..  nitie nite..

[LostWife]

Thanks again.

He's still in the ER.  He's having trouble even being seen.  He's still in tremendous pain - lower right abdomen.  His nurse just texted him to ask about diverticulitis.  I don't know what to think...I'm just here crying while the toddler plays.

[boswife]

I really hurt for you.  I cant believe how much harder it would be to have a little one too. it's hard enough when you can be with them while they suffer, but when you cant, it would be unbearable.  I hate when i have to finally leave my hubby (i usually actually sleep in the hospital bed with him) and go home to take care of HAVE to's.  Im so afraid somethig will happen and i feel i have to watch.  You dont have that option AND you cant come home and just rest.  I pray that this will turn around quickly and they will find what is wrong!! and fix it!!!!!!!!!!!!!!!!  Pray girl, pray 

[LostWife]

So after a very long day he's been admitted.  They TRIED to release him with just pain meds...isn't that insane? 

Now they are talking kidney stone.  I'm hoping that tomorrow they'll have a urologist perform whatever procedure they perform to look for that.  I am SO hoping it is that and that they can remove it (them) and we can go on with our lives.  He is in tremendous pain.  Morphine 2 mg every 3 hours!

Both CT scans (one with dye and one without) came back negative.   

My sis is flying up tomorrow to help me out.