Hi from Philly!

[Anitar28]

 Hello everyone. I stumbled along this sight when i typed in the google bar wives of dialysis patients..its been a little over a yr since our lives were completely turned upside down..he was diagnosed last july with esrd.his kidney function is less 10%. We have been doing home hemo for yr now. I was searching for some kind of support group for spouses who have spouses with esrd..when i did a search the bery first story was about a wife whos husband was on dialsysis for 25 yrs. it was very uplifting for me..so i joined so i can read other peoples story..no one can understand what its like unless u nnow someone else who is experiencing the same thing..I look forward to reading more ur stories..

[ToddB0130]

Welcome Anitar28 ---- I'm from your neck of the woods (in Bensalem).   There are a couple other folks on the board from our 'hood.   It's great that you're taking care of your husband,  I'm sure it's been a worldwind.  Is he feeling better in general now that he's on dialysis.  I am still pre-D,  but don't believe I'll be able to do home anything when my time comes,  as I live alone (bummer).  You will love this board.   A LOT of great information and really nice people.    Have you or your husband found support groups in your area ?  I'm trying to find one in the Bucks County area and am coming up empty.  Did your husband do in center ?  If so,  where ??  Again --- WELCOME.

[willowtreewren]

Hi, Anitar28!

 

I'm glad you stumbled upon us because this site is really great for support!

Do you do NxStage? If so, I also recommend the NxStage Users Group. http://www.nxstageusers.com/

If you look on the left side, you will see a link to the forum there. That is a public forum, but there is also a private yahoo group that you can join, too.

Aleta

[Anitar28]

Hello Todd. Glad to meet you.  Yes, you not far at all. I did not know if you lived alone u cannot do home hemo. That is a bummer.sorry. My husband is doing well ( knocking on wood) he started last august in center 3 days a week. It took his body  awhile to adjust to it. I wiuld drop him off at 5am at davita downtown. He is 39. When i would pick him up sometimes the nurses had to bring him out plus he used a cane.. Pennsylvania hospital is where all his drs. Are. It all started with him going to penn hosp for a cardiac catherization.. He has diabetes and hbp.  When they ran all tests thats where the nighhtmare started his creatnine was 9.  We new he was leaking protein in his urine but had no ideA it was that bad. They gave us the news and  in two days he had a cathatar in his chest and was getting diaylsis..right after that he had surgery for a fistula..he did in center for three months which is how long it takes for a fistula to mature..after that it was training for nxstage..you should definitly find out more info on not being able to home dialysis   Because u live alone. If you find any support group  info please let me know.. Sometimes i feel like im crackin like an egg inside.. I was also looking for support group places and this sight is what pop up.. Im glad i joined..im all ears if u need..

[Anitar28]

Hi willow. Thanx very much.. My husband does do nxstage. I will be checking out that forum..thx! 

[texasstyle]

You have come to a great place. The wife of a dialysis patient myself and...from Philly area too! (Don't let the "Texas" thing fool ya lol ) I have learned so much here and I must say the frienships and kidness from everyone has many a time gotten me through some pretty rough struggles. Sure there are god days as well and I share about them. It's not too often you can find someone to talk to about dialysis or even kidney disease. And more so, I've found most don't truly understand what it's really about. Here, everyone does and to fond someone like that rare. I treasure these people. I even think of them when I'm not online. Welcome, I'm sure you'll find the same experience.

[lmunchkin]

Welcome Anitar!  This is a fantastic site and Im so blessed to have found it, in my time of need!  I too am a spouse to one doing D.  We do NxStage at home and all is "great" at the moment!  Just hoping it lasts!  If you have anything you want to talk about, feel free to come here!  Ask away, rant, or just overall talk, this is the right spot for that!

What has Neph prescribed as far as treatment on NxStage?  Do you use PureFlow or hanging bags?  Im always excited about those doing NxStage!  It is a wonderful machine and has made lives more realistic to achieve!  I hope your experiences with it are similar!

Again Welcome & God Bless,
lmunchkin
 

[Anitar28]

THANX EVERYONE FOR THE WELCOME WISHES!! I AM MORE OF A PERSON WHO DOES ALL THE LISTENING AND NOT ONE WHO TALKS ABOUT MYSELF NOR WHAT I GO THROUGH. FRIENDS AND FAMILY KNOW THAT ABOUT ME SO NO ONE EVER REALLY ASKS HOW I AM DOING. PLUS  I WOULD JUST SAY EVERYTHINGS GOOD ANYWAY. I FEEL LIKE MY FRIENDS AND FAMILY WOULDNT UNDERSTAND ANYWAY. HELLO MUNCHKIN. WE USE THE PUREFLOW. HE STARTED OFF WITH 25 LITERS. FF35. I TOLD THE NEPH THAT HE KEEPS VOMITING ALMOST EVERY MORNING SO THE NEPH CHANGED HIM TO 30 LITERS WITH FF38. SHE SAID HIS CREATNINE WAS STILL KINDA HIGH SO MAYB CHAGNING IT TO 30 WILL REMOVE MORE TOXINS AND WILL HELP WITH THE NAUSEA. HE HAS BEEN ALOT BETTER. WE USE 301 SAKS. WE USED TO USE 303. NXSTAGE AT HOME HAS BEEN WONDERFUL. HE DOE IT 6 DAYS A WK. HE HAS HIS GOOD DAYS AND BAD DAYS AS FAR AS DEPRESSION. BUT AS FAR AS BEING IN CENTER AND BEING AT HOME THERE IS NO COMPARISON.  I AM GLAD THINGS ARE GOING WELL FOR YOU.

[lmunchkin]

How much fluid are you having to remove to accomplish Dry Weight?  What BFR do you run?  My J. does 20L, FF:30 to 33, BFR: 350-400, Time varies from 3- 3.5 hrs a session.  As of late, he has done very well on his intake, so I don't have to remove so much, but I want him on no less than 3 hrs.  I tweak things on machine (as long as I am in perimaters of FF) to where I get 3hrs.  Most of the time he reaches his goal in first 2 hrs and remaining time, removes the toxins. 
If he feels strange or cramps, I know to put UF to -0- and just remove toxins.  Cramping and lightheadedness are good indicators of too much fluid being removed.  I am still learning alot about this machine.  Had apprehensions about taking on trips, but recently took 2 week trip and now am excited about the next one!  You really can do alot of things with this "baby".  It has done wonders for our lives since we adopted it (17mths) ago. LOL

lmunchkin
 

[Anitar28]

MY HUBBY DOES 30L FF38-40 AND RUNS AT 450-500. TIME IS ABOUT 3.5 HRS. WHICH HE WAS NOT HAPPY ABOUT A XTRA 15MIN BY CHANGING TO 30L.  WE HAVE TWEAKED AND TWEAKED. HE ALMOST ALWAYS GETS LEG CRAMPS EVEN DURING THE NIGHT HE JUMPS UP FROM CRAMPS. THE NEPH SAID SOMETHING ABOUT ELECTROLYTES.  IN THE BEGINING HE COULDNT EVEN STAND CAUSE HIS BP WAS SO LOW. ITS ALOT BETTER NOW. HES BEEN CLEARING GOOD SO FAR HIS TWO DIGIT NUMBER (CANT THINK OF THE ABBREVIATION)(TIMES BLOOD CIRCULATED) HAS BEEN IN THE 80'S.

WE TOOK OUR FIRST TRIP IN FEB. WENT ON 5 DAY CRUISE. CALLED NXSTAGE AND THEY SHIPPED HANGING BAGS AN ALL OTHER SUPPLIES TO PORT. AND CARNIVAL DELIVERED THEM RIGHT TO OUR CABIN. WE JUST HAD TO BRING BANDAGES AND NEEDLES AND STUFF. WE DROVE DOWN TO FLORIDA. I WAS TERRIFED AT FIRST BUT WE DIDNT HAVE ONE ALARM THE WHOLE FIVE DAYS. 

[ToddB0130]

Anitar28 ....  I've read on this site recently that tonic water can help with the leg cramps.  I haven't yet tried it myself,  but I plan to.  Right now, Pre-D and the leg cramps I get are not that frequent or long lasting (lucky me !!)

[Anitar28]

THANX TODD.. NEXT FOOD SHOPPING TRIP I WILL PICK SUM UP...

[lmunchkin]

Wow, those BFR seem awfully hi to me.  What kind of access does he have?  I bet he does get 80's on BLP given the Hi BFR.  How much fluid is being removed on avg each session?  I know that my husband doesnt necessarily like the time spent on the machine, but he is feeling alot better and doing the right things with his intakes.  He was 6 days a week, but with diligence, he has finally been approved for 3 on and 2 off!

He has really worked hard to achieve this and it is an on going process, of course!  If it hadn't been for NxStage, Im not sure he would have ever realized it, nor I for that matter!

We both know it is never easy for our spouses with this Disease!  And I am so very thankful that we are there for them too!

lmunchkin
 

[Anitar28]

Wow 3 days and 2 off.. My husband would be beside hiself if he were to have that..that is wonderful.. Mayb my husbands kidneys r worse.. He has a fistula!! If he lays his arm near me in the bed it sounds like a motor..it is truly an amazing thing..He is good with his dry weight he only usually takes out 1 sometimes 2..I thought whoever was on nstxage did and automatic 6 days. Wow that is wonderful.. I dont think that is in the cards for hubby as i never heard no one ever mention that At his clinic visits. How long has he been on diaysis?

[Poppylicious]

  Anitar!

When my Blokey became ill with ESRD it was a huge - and very sudden - shock for us.  It can take a while to adjust, can't it?  And I fully understand about the 'being a listener and not really divulging how YOU feel' aspect of this.  This is a fabulous place for support from understanding people; come back often and share EVERYTHING!  We like a good rant now and then ...

 

[Anitar28]

Hello poppy, thanx very much.. For us it was shocking also.. He went in the hospital for one thing and found out he had esrd and testicular cancer.. We spent 31 days in the hospital..it was undescribable..i wish i have found this sight along time ago.. Reading peoples stories has really helped me already..

[Ang]

 

[Anitar28]

Hello Ang!!! Thanx!

[lmunchkin]

J. has been on D. since 2004.  He has not always done what he is suppose to do, until we came home with NxStage over a year ago. We hated doing 6 days too, but after we trained, months later we complained to training nurse about doing it 6 days a week. Nurse totally understood, but told us that if we did it longer and slower and watched his diet, wasnt guaranteed, but it was possible to reduce the days. We were determined to have it do just that!

Anitar, he has really done his part in this!  And I on the other hand do eat more, but I usually hide it from him, if you know what I mean!  But lately, even I have been watching more of what I put into my body.  Hubby feels lots better, his labs have been great, except today we found out his PTH is running higher than they like, so he will be getting med for that soon.  But everything else has been excellent.

Its not so much what he eats that hurts, its the portions and all of the add ons.  Im so proud of him and I let him know it too!  He does have bouts of Depression, especially with upcoming months with the Holidays and all.  But He is not near as Depressed as he use to be, and I m so greatful for that. Alot of that may have been me and my reaction to all of this D., but once I realized how my attitude effects his, I started to be more upbeat and playful with him.  I give him praise when he does things the way he should, but I don't get on him like I use to when he messes up (uses bathroom all over himself or eating something he shouldnt...ect).

Ultimately, I love him and I just realize that nagging him is not accomplishing anything, because he really can not help what has happened to him! I think you and your hubby could very well do 3on & 2off if he cuts back on his intake and you remove fluids with time left to remove toxins.  Over time, he will feel lots better and will know that the less he adds to his intake, the better for you both.  It didnt happen over night with us, it took a little over a year or so, before we were allowed to do 3 on & 2 off.  He doesnt want to go back to more days, but understands that it may be possible he may have to if medically necessary.

No, it is not the norm for 3 on & 2 off, most do it 6 days a week!

Wishing you all the best, Anitar

lmunchkin
 

[Anitar28]

Wow!! I will have to tell him to read ur post..I think he does good with his intake.. But i know he can do better and by him reading ur post mayb it will inspire him.. His pth was a lil high this month also.. We have to double up on his sensipar..besides that everything is good.. Im definitly gonna see what his nurses say about ever having even a possibilty of 3 on 2 off.. The empathy that i feel is  so unbearable at times just seeing him so down in his chair..But i hide it from him and try to make him smile or laugh.. 3 on 2 off sounds like a dream!

[jbeany]

 

I was going to say you can find lots of other caregiver wives on here who understand completely, but I think you already figured that out!  Welcome to IHD.

jbeany, Moderator

[Anitar28]

Thank you jbeany!!