Ups and Downs

[looneytunes]

It seems like we have had a lot of UPS since April when we started using NxStage at home.  Yes, there have been frustrations and some bumps but overall hubby has felt so much better that all the bumps were small things.  But I guess after so long, the DOWNS have to come too.  So, here we are.  I haven't posted in a while because with hubby doing better, we have been out and about a lot.  The NxStage travels real well (at least by car) and we have been on the go.  But things started sliding last week and I can say they hit a real DOWN this week. 

Grab a cuppa...this may be a long one.

To start with, the plan all along has been for him to learn to stick himself when his fistula matured and was ready for use. That was a long road but finally in July we got the official blessing to use it.  We traveled to a clinic 60 miles from home 2 x a week to be "trained".  And that was a battle in itself.  It seems that one branch of Fresenius does not always play well with other branches.  But, to their credit, they worked it out and off we went.  After the 2nd attempt by hubby to do the sticking, it became pretty apparent to everyone that his vision was not good enough and so...trypanophobic me (that means I am terrified of needles) had to grit my teeth and suck it up.  Over the next 2 weeks, I made myself do it and do it well.  After 7 weeks of doing it almost daily, I still HATE doing it and everytime my guts are shaking, I feel like throwing up, I break out in a cold sweat, and if he acts like it is hurting him at all....well, I have burst into tears.  But, so far, (knock on wood) I have not infiltrated him and have had a successful run every time (at least as far as the needles and lines are concerned).   

Hubby was not getting adequate clearance on 25 liters so his medical team bumped him to 30.  Well......that added about 30 minutes of time to his run changing it from 3:15 to 3:45.  With hook up time and arterial alarms, etc, it got to the point that he was sitting in the chair at least 4:30 and sometimes up to 5 hours 6 days a week.  And that made him very grumpy.  We all know who the target is when that comes around.  So...one day, we ended up in a very heated exchange that had nothing to do with the real problem (dialysis).  It was one of those where since he was miserable, I had to be too and he found one of those "buttons" to push and it worked.  That was over a week ago and I am still fuming over that subject.  But...life goes on. 

After finally convincing him that the arterial alarms can be avoided if he will maintain his arm in a steady position (which I realize is tough to do for 3+ hours) and configuring a device to assure that he does, his time is back down to the 3:45 plus the additional 15 minutes it takes to hook up and take him off.  But he was extremely grumpy during this learning process and that contributes to my current state of mind.   It took me telling him that it's his choice how long he sits there over the 3:45 and he is making that decision every time he decides to move his arm.  And pointing out to him that since he can not correct the alarms himself, it was frustrating to me to have to stop what I was doing and rush back to the machine every time he decided to move.  One day, we had over 30 alarms.  And I'm fed up.  To the point that I wish I had not encouraged him to try NxStage at home.  At least at the clinic, I was not running my a$$ off and didn't have a bullseye on my forehead. 

Then, to top all this off, yesterday he developed a high fever, we had to go to the supporting clinic (2 hour drive one way) to get an IV of Vanco (where I had to place the IV line because the nurse couldn't get it) and today we make the same drive for his chest catheter to be removed.  He threw up all over my car on the way home yesterday and then after I cleaned all that up, he threw up all over the floor in the house.  I know he is very sick but like I said, I'm just fed up and every little thing right now is a BIG thing. 

I am glad he is feeling better, just wish he would quit firing at the messenger.  I would love to turn all of his care (dealing with the medical bills, insurance company, Medicare, ordering supplies, taking inventory, packing everything for us to go on a road trip, cleaning the machine, sticking himself, picking up meds, making sure his labs are drawn and processed and shipped on time, etc...etc...etc...) over to him but I feel fairly sure that in a short time, he would decide it's not worth it and would either end up back at the clinic 3 x weekly and feeling like sh%# or just quit treatment all together.  Either way would not be a good thing. 

So, now that I have ranted at all my IHD friends, I hope I feel better. Thanks for listening (reading). 

[paris]

Ah, Looney,  I am sorry.  This just stinks!  I wish I could spend the afternoon with you.  We could sit and complain together!  Sending you lots of hugs      and good thoughts. 

[Sunny]

I never realized how hard home dialysis is on the partner. Especially if the diaylis patient doesn't do the work himself.
I am so sorry things are this difficult right now. Do you think it will get better with practice? Can you discuss the alarm issues and position of arm issues with the dialysis nurse or nephrologist to see if there is a better solution to make it easier?

[Dianejt]

  sorry these things are happening to you guys. I'm sure as time goes by & adjustments are made things will smooth out. It is such hard work loving & caring for these guys.

[Jean]

God Bless you caregivers. A life like that is just bound to suck sometimes. Hope it gets better for you  and soon!!! 

[looneytunes]

Thanks everyone and Paris, I also wish you could spend the afternoon with me...come on over ANYTIME!  But, man..oh..man..what a b@$ch fest that might be!      

The upshot of today is that hubby was admitted to the hospital as septic.  We went through this same ordeal back in June with almost a week's stay in the hospital and they were not able to conclusively say the infection was from his catheter since the blood cultures came back negative and they did not really look for any other source.  He finished a round of Vanco and then oral Leviquin by mid-July and here we are again 6 weeks later. 

Today, they pulled his catheter (which really we don't need anymore) and found no signs of infection in it, on it, around it, etc.  So we are waiting now for blood cultures while they treat him with antibiotics and lots of saline and Zofran.  He is very weak, dehydrated and a little disoriented but at least no elevated temp as of now.  BP still very low. 

Wish us luck.

 

[Yvonne]

I wish you all the luck in the world, and hope everything sorts it's self out, it must be so hard on you, and I can understand every thing you are going through. lot's of 

[Sunny]

Get better soon. I hope the hospital stay will resolve the infection issues.

[thegrammalady]

heres hoping alll will soon be resolved. be sure to take some time for yourself. you need it and deserve it.

[Poppylicious]

I thoroughly enjoyed (in the nicest possible way) reading your rant, and I can fully sympathise.  Would it be okay if I borrow this in the future if Blokey ever decides to give it a go at home?  I think it's only fair that he gets to see how it could affect me, and this post if the perfect way for him to find out. 

Can you manage some well deserved Me Time whilst he's in hospital?  Candles, bubbles, a good book and a large glass of wine (and a sexy young chap to give you a massage ... yum) would do you the world of good.

And I hope everything works out for hubby.

Many *huggles* ...

[paris]

Sending lots of prayers your way.  And hugs for you       

[looneytunes]

You guys make me smile and that's good for ME!  I am driving back and forth to the hospital every day because we have chores that have to be done daily (feeding calves and such) and no one here close that we can ask.  So, I am getting a little ME time on the drive.   In between phone calls and grabbing a sandwich to eat on the way.  (but I don't text while driving....)   

This morning I got to the hospital around 9:45 only to find out he was already in the dialysis unit and though I had asked and it was duly noted in the chart last night that they not stick him in the buttonholes we are trying to create, guess what....they DID!  I was livid.  And to top that, when they returned him to the room at 10:45, the nurses had forgotten that he had not finished his IV of antibiotics before he was taken to dialysis and until I asked the 2nd time at 4:00 about it, no one looked into it and so finally hooked him back up to it to finish it.  He was feeling a little better this morning but by 2:30 he was not good at all.   But, I talked to him just about 30 minutes ago and he sounded a little stronger. 

I truly was not aware of the symptoms and prognosis of Sepsis until tonight when I had a little time to Google it.  The symptoms of low BP that Saline wouldn't help, rapid heart rate, disoriented, confused, high fever, lightheaded...he had all of those.    The blood cultures came back today with gram positive but we won't know what the bug is until they grow them more.  So for now, it's lots of broad spectrum antibiotics. 

Poppy, you can use my lines anytime you want.  Feel free to improve on them, but DO share with me, I can use all the help I can get!       The tub time would be great but no time for that right now.  Maybe when he gets back home. 

Thanks again to all of you for your support.  I know this is one place that we all understand each other. 

[boswife]

Dang........within this one thread, so much has been spoke for all of us and our "downs"    Geesh!!  im remembering how tough those "downs" are and oh so much dont want them comming my way again anytime soon.  Im so sorry that any of us have to go through them, and i wish/pray for yours to head to the UPside real soon.  Do your best to catch some rest somewhere...   Im really praying for some strength to get ya through..  Bless ya for all you do........   

[okarol]

  Best wishes that hubby is better soon. He is lucky to have you. Come and rant any time!

[MooseMom]

This thread really frightens me.  I'm not on dialysis yet, but my husband and I have investigated NxStage and have planned to go this route when the time comes.  Up to now, I have worked REALLY HARD to shield him from the effects of my renal disease.  Ever since my first neph appt 6 years ago, I do everything kidney related by myself.  I make/attend all lab/neph appts alone.  I've NEVER asked him to accompany me, even though those damned appts terrify me.  I handle all of my prescription needs myself; I keep all the records and keep track of EVERYTHING.  I've told him how to access this information during an emergency.  As for my pretransplant workup, I again made/went to all of the procedures by myself.  The only things I have asked him to do was to accompany me to the evaluation (figured it would look better) and to give me a ride to/from the hospital whenever I needed surgery.  Now, I'm sure he would do anything I asked within reason, but the point is I don't EVER ask, nor would I want to.  I don't want to burden him.  But when the time for D comes, my fear is that although he is willing NOW, he truly has no idea of what's ahead.  If he were to read this thread, he would somehow compartmentalize it into the "that's not going to happen to me" area of his brain.  I cannot begin to stress how I hate the prospect of dragging him down the dialysis black hole with me, making him feel like the other caregivers in this forum.  I think I've protected him pretty well up to now, but there WILL be a time when I won't be able to do that any more, and I really don't know how to prepare him.  I have asked him so many times to REALLY think about NxStage and whether or not he REALLY wants to do this with me.  Any suggestions from you caregivers who are fed up with us patients?

[boswife]

Aww MooseMom, dont worry.  We do have our "downs"  but they smooth out, and life is good :-)   It's during those down times though that we need our venting.  Yes, it's wearing, but most of all, on our hearts..  The physical stuff drains you for sure, but for some reason, it's "just what we do" and come to accept.  Dont let it scare you.. You'll see that for the most part, it just becomes routein.  I do think that doing the home dialysis is a tough road to get started.  We chose in center because fortunatly, we are only minuts away from ours.  A few people there said they have done both home, and in center, and felt that the home dialysis consumed their whole lifes and that of their partner so now are back to going to the center to get their treatment.  I dont want to sound selfish, but for us, it gives me a needed break and i know he is in safe hands.  I do go with him, set him up, and tuck him in before leaving. (oh, and now my job is running to McDonalds to get coffie etc.. for other patients there..)  Anyway, what ever you choose (and i know otheres LOVE their nxStage), you too will work it out, AND espacially because you are aware of what is needed from partner, you will prob be much *easier* on him than some others get from their partners.  My hubby is SUPER helpful with all his 'care' now, but oh boy, do i understand the depths of when they dont hellp.  It was awful!!!  So, dont fret, take care of what ya got,All will be fine...

[looneytunes]

Oh Moosemom, I'm so sorry that this frightened you.  The NxStage is really not the issue here.  Even when he was on PD, I was doing all of his care for him (mostly because of his poor vision).  Right now the issue was the frustration he was feeling over his time being increased due to inadequte clearance and taking it out on me.  I know you would never do that to your partner.   The NxStage process, while it is time consuming for both of us, has allowed him to have his life back (except for the time he is hooked up) and he feels SO much better than he did on clinical hemo or PD.    In fact, that was part of the problem.  His expectation was based on how much better he felt so he didn't agree that more time per treatment was necessary.  And his anger at the situation got directed toward me.  This whole week was just another bump in the road.  I was venting my frustration because it helps to let it out rather than keep it bottled up.  Please don't take this as typical life on NxStage. 

For an update, he was released from the hospital this evening but with a stipulation that he has to be given continuing rounds of IV Vanco for the next week and lots of rest.  He is pretty weak right now so I don't think he'll be itching to get on the tractor anytime real soon.  We now know the bug is Staph but not the particular strain which they say will take a couple more days of growing the cultures before we find out.  Just hoping it's not one of the "mega-bugs" that they can't kill. 

[MooseMom]

I just really worry that my husband is not prepared for what's ahead.  He is VERY supportive emotionally, but practically...well, he hasn't had to deal with any of the effects of kidney disease.  He works hard, and I appreciate that, but when he comes home, dinner is prepared, the house is clean, his clothes are clean, the shopping is done, etc.  And NO, I am not some female throwback chained to the house!   This is just the division of labor that works for us at this moment in time.  But what's going to happen when I'm too sick to do all this stuff?  I don't WANT him to be a "caregiver".  I resent being a patient, and I wouldn't blame him if he wound up resenting being a "caregiver".  Neither of us asked for this.  We both are keen to do NxStage because we believe that it is worth the hassle to make sure I get the best clinical results from dialysis so that I can remain healthy for transplantation, but I also realize that sometimes you have to reassess and change your strategy.  It may NOT be worth the hassle...I don't know, but I'm worried that he might decide it is all too much and I might therefore have to go in-clinic, and what will happen if I have to do that and it isn't as good as NxStage?  Will I resent his weenieness?

Once again, I'm over thinking this, I know...it's a stream of consciousness thing.

[boswife]

"Will I resent his weenieness?"   MooseMom....Ya got me laughing on this one...

[RichardMEL]

I wonder MM, and this is just me musing "aloud" rather than suggesting anything, but in your wish to not burden him have you perhaps set up the situation where he isn't prepared for what is ahead? By shielding him as much as possible (and in a very loving way) it may well make coping with the reality of it that much harder when that time comes. It might well be time to start to include him more - NOT to burden him, but so he has an understanding, and also so not everything hits him at once. Doesn't mean he has to help picking up your meds, or come to see the neph or whatever, but more stuff like explaining how you are doing, what the future likely holds.. the sorts of things you understand will be issues down the track etc. Let him get his head around this stuff rather than waiting for it to hit. I don't think any loving and supportive partner would ever consider it a burden for their loved one to share such important stuff wih them.

[looneytunes]

MM, I agree 100% with RichardMel.  It will be a little overwhelming for both of you when that day comes, it might be best to start preparing him now so his "weenieness" will be lessened.   Most patients report that the NxStage does allow them to feel better than in-center hemo and for that reason alone, my time and hassle is worth it.  Other than the infections that have caused hubby to be hospitalized, he has felt better since April of this year than he had since early 2007.  He is out and about every day, working on the farm. 

So, if you start now to allow him a peek at the road ahead, it may lessen any resentment he may have to being put into the caregiver role.  Also you will be giving him an opportunity to show you how much he loves and appreciates you.   

And BTW...RM, I love the new pic! 

[RichardMEL]

thank you

 

[MooseMom]

Yeah, RichardMEL, that new photo is superb!
I understand very well that it can be a fine line between protecting someone and keeping them unprepared.  Believe me, I share my feelings about all of this with him along with information that he might need were I in a car accident and couldn't explain my situation.  While he doesn't order my meds, he knows where I keep all of my medical info and could therefore inform emergency personnel of my medical needs.  He was the one that initially contacted NxStage, and we have watched the DVD together and have discussed how we plan to proceed.  But to him (and to anyone, really, in his position), all of this is just theoretical, and his philosophy is to not worry about things until they happen.  Well, that's fine if it is not YOU who has to go on dialysis and whose life will change dramatically, but frankly, I can't afford to be so complacent.

I worry about the practical things.  I worry about what's going to happen once I get too sick to do the shopping and the laundry and the cleaning and the cooking, and he's going to come home, tired, from a long day's work and will have to wash his own underwear, then cook dinner, then clear up and then put me on dialysis, day after day after day after day.  When I voice my concerns, he insists he will be able to handle it, and maybe he will.  But maybe he won't, and then what?  He didn't sign up for this.  Neither did I, but he can walk away.  I can't.  I don't want us to start resenting each other.  And to add another wrinkle to the story, he had said that he wanted to donate to me, but we're ABO incompatible, so we talked about trying to get in on a paired donation arrangement, but he will have to lose weight first.  I can tell he will not be able to do that, and I'm certainly not going to nag him about it!  But I worry that guilt might trap him, and resentment will grow.   My husband is a very special person and loves me very much, and there is nothing that I see now that makes me believe he will resent me because of my CKD, but he's never been in this position before, and it is hard to predict how someone will react under this kind of pressure.

I am so sorry, I've hijacked this thread.  But I am sure that I am not the only patient who worries about the emotinoal wellbeing of the person who is going to be the "caregiver."

[del]

Moose mom, I am sure my husband has some of the same fears that you have. He has been on dialysis for 13 years and I have been there every step of the way but I think he still has a fear that I might leave.  Just because you start dialysis doesn't mean that you will be sick. You may have more energy than you have now.  My husband is very active and does all the things he did before he started dialysis.  Hopefully you will be able to use nxstage.  We do nocturnal home hemo.  You get much better treatments with short daily treatments or nocturnal.

RichardMel, you look very distinguished in your photo!!!

[MooseMom]

I don't really believe that my husband will leave, but I worry that he thinks all of this is going to be easier that I suspect it will be.  For instance, today I was on the phone with him when a calll came in from my transplant center (I have call waiting, so I could see who it was).  I told him who was on the other line and that I'd call him back.  I figured they were calling to make sure I had given my first monthly blood sample, but my husband really did believe that they were calling to tell me that there was a kidney for me, despite the fact that I had my first draw just a week ago!  When I tell him there is a 3-5 year wait, he honestly thinks that I won't have to wait that long, and there is nothing on which he bases that belief.  It just makes me nervous that he seems to think it's all going to be so easy peasy lemon squeezy.  I guess you just have to let people come to their own conclusions in their own time in their own way.