My name is Karen. I am my husband, Rich', care partner. We live in northern Lake County, Illinois. He is 46 and started hemo 2 weeks ago. He has PKD. We started home hemo training with NxStage this past Monday ! It's been a wild, crazy time for us. We have not been able to use his fistula yet because of stenosis discovered the first week it was accessed for hemo .( It is only 3 months old) :( He had an angioplasty to open it up last week and had a central line placed for use right now.

I am an ER nurse and "all things renal" were not my favorite subject in nursing school. Karma is funny, isn't it ? My husband has taken to the machine set up like a duck to water ! Every day I think he is napping in the recliner during treatment, but he knows everything that's going on ! I am probably more panic stricken about the whole process than he is ! (especially with this long holiday weekend coming up and no hemo til Tuesday - I feel like we've lost our umbilical cord !)

His dad and grandfather died in their early 60s after about 2 years into their in-center dialysis "career".My husband was sure this would be his fate also. He is an avid outdoorsman ( hunting, fishing, canoeing, camping), and kept concentrating on how much he would not be able to do. We have an awesome, extremely patient, nephrologist who told us about NxStage several months ago. I started finding all of the stories about Harvey Wells, and the NxStage Users cruise...and the upcoming Vegas trip ! and shared them with him. I think he has renewed hope that this is a new beginning, instead of the beginning of the end !

Hi everybody, I'm Vickie from NJ, I am my husband Christopher's partner. Chris is 46 and I am 45. He Stated in center dialysis September 2009 and NxStage training in November 2009. We were trying so hard to finish training so we could join you all on the Freedom Cruise but my husband suffered some health problems and was hospitalized in December. When he was released he went back in center for a while so they could finish training another couple. We came home in February 2010. My husband is always worried that doing home hemo is to much on me, but what he does not realize is that I much rather do it then have him go in center. To them it is just a job, to me it is important, I care. I think the only way I will give up doing NxStage is when my husband finally gets a working kidney:o We were sad that we missed the Freedom Cruise, and I really hope there will be another one planned in the future. My husband and I will be leaving in a little over a week on our second cruise sense starting NxStage. Glad there is a place to ask other users question!

Hello, all. My name is Annette and I have been using NxStage for a year now. I did peritoneal dialysis for ten years before that. I resisted changing to home hemo because I knew it would mean needles and I am needle phobic. It took me a year to finally surrender to the fact that I would have to give up peritoneal. I actually had to see a hypnotherapist before I started to help me handle the fear. The surgery to establish my fistura was in May 2009 and in October my husband and I started training on NxStage which lasted for nine weeks. We were trying to establish buttonholes and it took a couple of tries. We went home in October and switched to nocturnal in December. I was so happy to have my days back. In January I joined the study. Boy, was every other night a wonderful thing. Unfortunately, my buttonholes became problematic. We tried establishing new ones but it seems I develop scar tissue and they are only good for a few weeks before they become very difficult to cannulate. In May the latest set gave out. We switched to sharps but after a while had trouble with sticks and couldn't dialyze. In mid-June I was put on a perm-cath and two weeks later had surgery to relocate and raise my fistula. There is a stenosis which will have to be corrected before I can start cannulating again. I'll see my surgeon on Tuesday and he should schedule the angioplasty then. I never thought I'd say it but I'll be so happy to be back to needles and rid of this perm-cath. My husband has been a great caregiver. He is a general contractor and runs his own business so the time commitment, especially with short daily treatments, has been a real inconvenience for him but he never complains. He is truly my partner in this. Well, I've babbled on enough. I'm really happy I found this forum and I'm hoping to be at the conference in October and meet some of you face to face.

Hello all. I'm a care giver for my husband who is on here already (sawyerrt10). I thought it would be a good idea if you all could tell us one from the other. He has been doing in-center hemo since the end of July; about 3 weeks, and this Wednesday we will start training on the home hemo unit from NxStage. I'm trying hard not to stress out about this, but frankly I'm a little scared. I guess it will get better with practice. We will be the first NxStage users from this dialysis center, so that should be interesting.:eek:

I am interested in nutritional information, easy and quick meals, seasonings that are good to use versus those which are not, that sort of thing. Also, any insight about what to expect would be helpful. Mostly from the point of view of how much responsibility I need to take for all this versus what he should be able to do for himself. I'm a take-charge kind of perosn, but I don't want him to feel helpless, or like I'm treating him like a child...if that makes any sense.:confused:

hey all,

I am a 42 year old male diagnosed with Juvinile diabetes at age 6. I was diagnosed with ESRD in 2000 and had my first dialysis treatment May 19th 2006. I was approached by my centers admistrator in the spring of 2007 about home hemodialysis. My wife was busy with nursing clinicals at the time so my eldest son Gage, who was 16 at the time, drove the hour and a half for training everyday for 3 weeks. On June 1st 2007 we ran our first treatment at home. I will ssay that the first 4 or 5 months at home were pretty nerve racking on all of us. I have had some health issues over the last 3 years but would under no circustanses go back to in-center treatment. My wife is my partner, my son is a medic in the armynow, and I worry about her. Being a nurse she usualy works 10 hour shifts full time on the 11pm to 7am shift. She comes home sleeps about six hours gets up fixes supper most of the time and starts dialysis again. She is my angel and I love her dearly. I have had some access problems and infections lately, but I plan on being healthy when my son comes home on leave in September.

Ray

Hi

I am Ray and hve been a member of this site on a different computer ans e-mail address.
I have been on dialysis since mid May of 2006. I started home hemo on June 1st 2007 and would not go back to in-center for treatment period. My kidney failure is due to 36 years of diabetes. I was on the kidney/pancreas transplant list until my yearly stress test last september showed I had a heart attack. After a quadruple bypass surgery, November 6, 2009, my right mid arm a/v fistulla failed. The next day I had a permacath placed in the left chest area. This cath ran fine and on January 4th 2010 I had a new fistulla placed in my left wrist. I have since had 3 procedures to help develope fistulla including rerouting it. My dialysis team ans I have abandoned the fistulla because it would not mature. On July 7th I had to have my chest catheter removed due to infection and had a new one placed in the left side of my chest. We had some difficulty running the cath. and could usually run it backwards and get a 500 blood flow. July 30th was my last full dialysis treatment due to the infection that apparently never went away. I was admitted to the hospital July 31st. aaaaaaaathey pulled the infected catheter 2 days later and started me on several iv antibiotics. On the 9th day of my hospital stay the Infection specialist okayed placement of another chest cath. It was placed Monday August 9th and i was sent home to dialize, along with orders to go to a local hospital for iv antibiotics every 48 hours til September 1st. As soon as I got home we set up my nxstage cycler and got ready to run dialysis. After hooking up to the machine my blood never even reached the cycler because the arterial pressure was over 400. We tried 6 more time over the next couple of days with the same results. On Sunday the 15th of August we were able to run for 1hour 14 minutes at a blood flow of 150 until my blood clotted. I will say that during this week at home my dialysis nurse was trying to get me into the hospital for a catheter replacement , but theey would not return his calls. Monday the 16th I went to my nephrologist office and he got on the phone and literally tore into the hospital staff who told me to get there right away to fix the problem. I had a replacement catheter in the same place within 2 hours and it was filled with alcavia(?) We went home and set up the cycler to run. I am only getting a 310 blood flow with this new catheter even after 2 treatments. My wife thins the diameter of cath tubes into chest are smaller than my earlier catheters. I am used to running dialysis for 2 hours and 20 minutes with a 500 blood flow. Currently My dialysis time is almost four hours.
I need to know if it just takes several treatments to get catheter flowing better or if the smaller diameter cath will only run in the 300+ ml/min blood flows. Does anyone out there have experience with this? My Nephrologist said Thank God you still put out 1000 liters of urine a day. I am scheduled to have a new midarm fistulla placed in left arm on August 27th (god willing and infection gone) Someone please share your knowledge about this problem with me. I am feeling very ill and anxiouse and would appreciate any advice and or prayers.

ray harris

Hey everybody. As the title suggests, my name is Ben and live in Boston. I am 24 and have been on dialysis of one type or another for 14 years. NxStage is by far the best, and I'm thrilled with the improvement I've felt in my health and happiness. I'm working on transitioning to nocturnal NxStage, currently figuring out the logistics, and am really looking forward to getting my day time hours back. I'll be sure and relay my nocturnal related questions as I stumble upon them.

Outside of dialysis, I will be student teaching in a high school biology classroom this fall. I'm really looking forward to it, but am definitely a little nervous. Hope everyone has had a nice summer.

Glad to be a part of this group.
-Ben