night from hell

[The Noob]

i need some help. we have just had 6 hrs from hell.
we started process with no issues. got the needles fine. 3 mins later, alarms started. you name it, it yelled.
we did all we know then called nurse who stayed on phone with us for 40 mins, twice. the A was clotted, the lines as well. we did all she said, no luck. tried the catheter, would not move except for some crud coming out. tried flushing that. no dice.
so per nurse, he kept a small bit of heparin and then saline flushing in and out of needles, while my son and i tore down everything, tossed it and started all over.
it ran for 2 mins, started all over. again called nurse. she is coming out tomorrow to do his treatment, take care of catheter and find out whats wrong.
my husband gets very stressed, yells constantly at me, grabs things out of my hands, yells at me to do one thing when i know its something else needed, it becomes a huge mess.
we finally gave up, nurse said quit for night.
son and i got it all cleaned up and i started crying. first time in a year. i want to give up badly.
my husband is very compulsive and in between all this mess, i am running night and day cleaning up after him and all the crisis he seems to like.
our chimney pipe inside is packed and had to be replaced, he didn't want to do so, insisted burning fire for 3 rd time since yesterday, the downstairs is full of smoke, i have to leave all doors open for hours to get it cleared. i am exhausted out of my mind. i would like to have a drink but i've been sober for almost 12 years. i am crying right now and seriously debating whether i can do this. nurse went through same with him while training. i need some help.my son got a crash course doing some of it because i had to sit down. i hadn't eaten all day, sugar too low, back in bad pain, haven't had a bath in a week. help.

[MooseMom]

Yes, you can do this, but again, your husband needs to help you.  I'm sure he is frustrated and maybe even a bit frightened; I know you've not been home with dialysis for very long, so do you think he is feeling a bit skittish?

I'm glad the nurse is coming out tomorrow; that will be a big help and will give you a chance to breathe.

Dialysis at home is great, but it is a challenge at the best of times.  You are putting in a lot of extra effort into giving him the opportunity to have better health.  You've tried the incenter song and dance, and that didn't work, so now you are trying something different that presents it's own set of challenges.  You know you can do this, but again, just as incenter, your husband isn't helping himself and isn't helping you, either.  Life would be a lot easier if he'd get over creating so much drama.

Just reading your post makes me want to drink, so I can imagine how strong the temptation is for you!  Boy, staying sober against these odds so that you can continue looking after your husband...that's love.

What can we do to help?

[Meinuk]

I have the perspective of distance, so I am offering this advice:

Breathe.  You had a bad night.  There were a few nights when I just stopped, and packed it in for the night to try again the next day.  When everything happens at once, it is over whelming.

Really, I can tell horror stories (and probably have somewhere on the site) but I lived to tell the tale.  You will too.  There has been so much going on in the past month that you have to cut yourself some slack.

Here are some of my "Carrie Moments" and Nightmares...

I never was able to use blunts on my arterial site, I always had to use a sharp, and would often spend so much time spinning needles that I would clot.

The time I didn't tape my return very well, and the needle flew out and sprayed my little apartment with blood like a paint gun.

The time I filled a saline bag with blood (ok, it wasn't filled but it seemed like it)

The time my pureflow flooded my apartment.

The time that just as I got on dialysis in the summer, the machine quit because it was too hot in the house to do a run.

The big stuff usually only happened once, and when I realized that I could do this, they were just annoyances. (I never forgot to tape my return again!)

There are many many more.  Along with at least 6 fistulagrams, an aneurism the size of a peach and a drug addicted mother who would drop her 3 year old in my foyer hoping that she could visit me for hours while went to get high. (I was forced to leave my front door unlocked when on treatment)

I can't even list the alarms, technical issues and delivery nightmares that I had.

But you know what?  I did it.  I did it alone, and I would do it again in a heartbeat.

You can do it.  These are just bumps in the road. Take a deep breath, realize how far you have come, and tomorrow is a new day.

[The Noob]

thank you, i'm laughing as i read your posts. your right. quit and get some sleep. and yes i think he is frustrated and scared. but we must maintain some self control or this ain't gonna work.
i have tried having him set up bags, use flow sheet, but is gets done wrong or he keeps asking me how to do it, etc. his site to use is in his lower arm so he can't bend. he clots fast. i am wondering too if machine is malfunctioning? nurse will be here tomorrow afternoon.

i am concerned that it will then be 3 days no treatment. we took wednesday off. so thats wed/thurs/fri is when she will do his tx. is this ok>

[ToddB0130]

Oh, Noob .... I'm so sorry you had a bad night.  I've read lots of your other posts about your training and everything and it seems you really, really know what you're doing and that you want to help your husband so much.  Please do not give up !  The nurse will help you both straighten this out.  It is all just part of your learning curve and you'll get back on track again quickly.   At some point,  hopefully,  you will look back at this and laugh.  I think it's great that your son is also getting some exposure to this as well.  Hopefully he can be a third pair of hands to support the effort.  DO NOT give up 12 years of sobriety .... THAT is an incredible accomplishment that you must be so proud of.  Your excellent support as a caregiver is another thng to also be extremely proud of too.  Keep up the great work,  shake off the bad day ..... and hey,  maybe give your husband the drink (it might calm him down !)  HA HA.   Be well and TAKE CARE OF YOURSELF as well as your husband.

[cattlekid]

Hello Noob!  I am so sorry that you had that experience.  I don't have much advice to offer that hasn't already been offered.  I agree that with NxStage it might be worthwhile at some points just to call it a night and start again fresh the next day.  Tomorrow is my husband's first day visiting the training center with me - not sure if he will be overwhelmed or what.  It is good that the NxStage manual has pictures, he does better with pictures LOL

take care and 

[lmunchkin]

Noob, not to be ugly, but I had to laugh, because I remember those first few times at home were definately NERVE RACKING.  Just calm down and relax.  The nurse will come tomorrow and will D. him.  Three days is a bit much, but just ask him to be careful on his intakes.  That way he will have build up, but not as much.  Good thing nurse is coming tomorrow, and you might tell him that he may have to be on for awhile.  She may have to use more bags of dialysate to get fluid off, but she will be diligent in doing so, I promise.  "Bet he will behave while she is around".

No, he is not helping much by being too demanding. I know that you know how to stop that.  Next time he gets that way, just tell him you are leaving till he can quit his temper tandrums.  If you say it like you mean it, he will change his tune.  Whether he has ESRD or Not, men are just that way sometimes!  But they also know, that we women can be pretty HOSTILE ourselfs.  In ways that they could never imagine!

But we really don't want to leave and really have no problem caring for our men, but please, stop with the aggravation!

I agree with Meinuk, just settle down. And have a drink!  Help comes in the morning. 
May I put your mind at ease about the Machine, 9 times out of 10, it is not the machine.  It sends alarms (thank God) for a reason.  This is new to you, and I understand that, but it will get better as days go by.  Don't give it up, Noob!  You are going to be fine!  You have had a bad night, and it is not the end of your world.  You have done a great job, its just one of those hiccups that we all go through!

Your decision to do NxStage, was a great one, if you are doubting it!

Hope this helps,
lmunchkin
 

[The Noob]

thank you all! i took 2 OTC sleep tabs and went to bed. i console myself that even the nurse got aggravated with him in training..he is the one that needs to calm down. i keep my cool a very long time. i haven't cried in a year. i need to be able to go to an AA meeting once in awhile. it really helps. i'd like my son to have more to do than just this medical mash at home. forgive me if i sound short, i don't mean to. i'm up getting coffee. trying to wake up.
i think i will just tell DH today he has one last chance. he either settles down or i quit. one more day of the pacing, chronic complaining, every 5 mins discussion of his bowels and dialysis talk, i am going to scream. ok maybe not scream, but i'm going to get that look on my face. and you don't want that look. cause when i get "that look", it means i am at my limit.
now, i am going to get my son and get the chores done. then replace this chimney pipe. and he is going to stay in bed or a chair and not say a word.
when nurse gets here today, around 2, she will do the treatment and fix his catheter. and she, him, and my son and i are going to sit down and have a frank discussion. because i will damned if i will do it all, kill myself doing it all, and i am going to have PEACE in this house. i used to tell my girlfriend, "don't tell me i can't do something, because by God i am going to prove you WRONG!"...LOL..hahahah..and in the words of my dear mother.."sit down and shut up!"...LOL..

[willowtreewren]

You know I'm thinking of you! 

I'm thinking things will go better today with the nurse coming.

Aleta

[boswife]

you know Noob, your 'plight' has probably touched each of us here in different ways.  Makes me want to fight back for you and do what ever it takes to make it better for YOU.  Yes, i do feel for him too, but dang it,  we are the ones offering our help and love and *life* to make things better for them and how i wish for you that he will come to that understanding, and bless you with good nature.  I really think thats all your asking of him.  Well, a hand in the process as well, but honestly, for me, it's the nature of my man that gets me through.  The work is only the minor part (the machine that is,,, )  I would have NEVER been able to continue this process(even as stubborn as i am to do so!)  if it wernt for Bo's encouraging, and trusting ways..(oh, since now im an ole pro, he can or does get testy about a couple things...more like whiney..lol , but still his appreciation is what keeps it all going.)   You have given your all, your strength, your heart and something has to give.  You know, i was sooooooo jealous of your confidence in all this.  I was such a fearful NOT ready to come home with the responsibility 'trainee' that i thrived on hearing how wonderfully you handled the training.  You've hit a bad spot, well, a REALLY bad spot, but that can all be fixed with hubby minding his manners!!!!  I wish you well, your an amazing woman and i so hope he hushes and appreciates it, or you can toss him out to his own devices..  Be well, take care of yourself, dont let yourself overdoo and be harmed by that...       and a few     

[The Noob]

hey, i have to say the nxstage list serve is wonderful, the support has been awesome.

we got the pipe replaced then got our amish neighbor come down and climb up, take chimney cap off. that fixed it, it was all blocked.
nurse came out, she had problems too and thinks he may need some clean out, but we got it working. i have to keep flushing saline every 30 mins. but so far so good. she says she can come tomorrow if we need her. we are blessed with an awesome nurse!
she is calling doc for script for DH for mild antidepressant. thank the lord he agreed.
ok, so all is well, house clean and the earthquake has passed..for tonight. when he is done, i am hitting the sack.
thank you all of you for your support! semper fi!

[boswife]

YES noob, NxStageusers group IS awsome!!  When i just came home with NS, i was a freek of a fearfull wifie, and they just were amazing.  AND fast answers.  I'd be in treatment (ok, hubby would be in treatment,,, geesh, sometimes i forget whos doing what round here) and an issue would come up.  BAM they would have the answer and it just was wonderful to have others so willing to help.  NxStage Tech's have been a favorite as well.  Sooooooo calm and talk you through anything.  LOVE them, use them!!!.
Im so glAD that today was better and hopefully tomorrow will be the beginnings of even better.  Glad ya had your "talk" too.  Wishin you success and peace and happiness with it all... 

[lmunchkin]

Ya know, we have all had "THAT TALK" with our loved ones!  We get frustrated so easily with this because we were placed (willingly) in this position of responsibilty as "helpers".  And over time Noob, it will get better at home with NxStage, and I know that you know that too!  And your husband will see that too, as he begins to feel better!  His health will improve as time goes on, trust me! 

It sounds to me that he may have more issues with his access site, whereas J's was already good when we started NxStage.  Just hang in there little "firecracker", like Boswife, your training experience with NxStage was definately inspiring to those who are contemplating it.

It makes me appreciate Meinuk's post on training.  What an Inspiration!!!!  She is doing this alone, so you know what she goes through.

How long did nurse D him the day after the "Bad Nite"?  If she had probs like you did, not for long would be my guess.

lmunchkin
 

[The Noob]

hey morning! yes, monrein's story of doing this alone makes us stand in AWE..truly..

ok, when nurse was here that day she couldn't unblock catheter at all on A side. very hard on V side but she got it. they got needles in one side. he had a 3.30 hr treatment, she had to get home before he was done but gave us some tips. so if his A pressure went up we flushed with saline, which helped greatly and he had a full treatment.

last night we did it again, and minus a few small issues easily corrected, it went well. he got both needles but then V infiltrated, so we used catheter for that one. A pressure went up, we flushed and flipped needle, went perfect then. another 3.30 hr treatment, feeling good.

nurse is making us appt monday to see surgeon. we have to be in city anyway. i am thinking that catheter is either blocked with clots or needs replaced. none of us want to chance "fixing" it at home. we will try again today and Lord willing it will go well.

we put up a big christmas tree with lights, played soft christmas music and low lights. i gave my DH a shot of cheap whiskey, that helped..LOL
believe me, i have a long fuse. my fear is only of hurting him and stopping him when he gets impulsive.
our talk of this basically encompassed me saying how i could only imagine how he felt about the last 2 years, but that at some point we need to move forward, and discussing medical signs/symptoms of depression, etc and that although we try to use holistic as much as possible, sometimes a little extra is needed.

its funny, i don't know about you all, but when DH has an appt, needs dialysis, has a surgery or problem, it is no longer "him"..it is "us"..LOL

i think we have the bugs worked out though. we learn best by doing, and man is this "hands on"..
with the holidays coming up, we were hoping some of the self involved family members would lessen their grip on the grandkids and let us see them. but they seem to think we are avoiding them out of laziness or disinterest. i have given up trying to explain the last 2 years. at any rate, my one daughter and son in law have a baby coming in april and they have been a great support, as well as enjoying and making sure we are involved with the pregnancy and new baby coming. so we will console ourselves with this new little one, which of course we are hoping for a girl!
like i told my hubby, kick the dust off yer heels and keep moving. when the nurse came out the other day she brought her 5 yr old. this proved to be very good therapy for me. the little one and i went outside and played, fed horses and chickens, played with dogs, picked some crops and had a general grand time! meanwhile nurse tended to DH. i so enjoyed having that little one here and i hope she will bring him again. smart nurse..

ps: one issue we keep having is when its down to the last bag and its getting empty but theres still fluid and treatment going, its alarms. so i propped one side of the warmer up so the rest of the fluid can cascade down.
i hope thats ok. it worked.

[willowtreewren]

Noob, we found that different machines were calibrated somewhat differently. Some left LOTS of dialysate and some needed more at the end of the treatment. We learned to adjust the treatment numbers to accommodate those differences. Tipping up the warmer is a great idea, though!

 

Aleta

[The Noob]

this is a pic they let me take at one of the "Frolics"..aka barn raising. we had a newspaper back then and i took these for it.
i put on the pic: "Instead of pointing a finger, try lending a hand"..

[boswife]

First off Noober,, that pic was amazing and i thank you so much for sharing!  I love seeing that and i love what you wrote to accompany it!  great stuff    And......... about the shortness of dialysate, Well, our first machine (11 months into nxStage and have just recieved our second)
 was on the 'short' side and we eventually had to change paramiter to 19 on the dialysate instead of 20 or we were rolling that last bag around or have issues w/pureflow.  At first we thought they were just short on filling the bags, but not so.  The assured us we were getting the full 20 though so we were ok with that.  Soooo, now, we get our new machine and they had me set IT to the 19 so i am now in the process of finding out just whre this one is calibrated..lol  I am using 19.5 on each treatment for the setting but still having some left so going to up that on next batch..  I LOVE this machine though.  I loved our first one, but even more so this one.  His pressures on the other were beautifully low, but i always worried that they were too low..lol  This one seems just perfect.  Anyway, yep, they each have their special 'getting used to's' but its a great machine for sure. 

oh.... and funny about the saing "we" thing....  I have gotton to whre i have to correct myself even in that.  I get saying....  "I" this and that and almost forget that 'he's" the one getting this or that done,,,not me   

[Trikkechickk]

Here are some of my "Carrie Moments" and Nightmares...

I never was able to use blunts on my arterial site, I always had to use a sharp, and would often spend so much time spinning needles that I would clot.

The time I didn't tape my return very well, and the needle flew out and sprayed my little apartment with blood like a paint gun.

The time I filled a saline bag with blood (ok, it wasn't filled but it seemed like it)

The time my pureflow flooded my apartment.

The time that just as I got on dialysis in the summer, the machine quit because it was too hot in the house to do a run.

Did all those during my first months at home.  Flying needles are exceedingly MESSY!

I hated it at first, now I can never go back to a clinic!

Did all training, etc alone.  I'm tied down w/ dialysis - I refused to add a partner!

[The Noob]

hey thanks! i tried to add some more pics and overloaded it. try again later. gorgeous day, went to do laundry and errands and gonna catch a nap before treatment today.

ok, so i tipped the warmer scale up with a bowl under it, he got 19.9 which is about as close as you can get i think..LOL
i might just set it to 19.9 from here out. every treatment we hold our breath for 3.30 hrs..man..so far so good.
the funny thing about reverting to "we" vs "he" for all this, is that even though its his body, it is definitely a family affair, i hurt for him, but i can be strong and get him through it as its not me on the cot. i am thankful its been quiet for awhile. he may have an outpatient tomorrow to replace cath and/or fistulagram. but we are blessed with a most excellent surgeon.

son in law who wants to donate finishes his stuff Nov 15. maybe hear something after that. they are awful slow, even SW does not recommend them for this reason. once you get in there they are some of the best in country, its the waiting that gets ya.

ok, off to get a nap!

[willowtreewren]

Amazing picture! 

I love seeing all those folks working as a team! Rather inspiring!

Aleta

[tyefly]

 I always used wet needles.....   when I began  I was not using wet needles and I clotted sometimes.... after starting wet needles   I never clotted again.....  just a thought

[The Noob]

whats a wet needle?

[willowtreewren]

Oh, Noob!

You attach a 10-12 cc syringe to the end of each needle line and fill about 1/2 with saline. Then after cannuating you pull some blood up into the syringe and then flush it out. We ALWAYS did that.

 

Ask your nurse about trying it.

Aleta

[lmunchkin]

So that is what thats called!  We do that all the time, as we were trained to do it.  Thanks Tyfly and Aleta, I never knew it was called that.

lmunch
 

[The Noob]

LOL oh i never heard it called that. yes we do this every time too. thats an interesting name for it. i was imagining a dripping needle hanging from my hand..LOL well..
yes we flush with saline and heparin. DH calls it something else. LOL ok silly me..

off to hospital to replace catheter and get on them about fistulagram asap. coffee..please..