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  • Morkal85
    replied
    Do anyone here install some security cameras or have any other devices that really help you when you have any problem with you like attack or any other thing.Because i listen that there is carpet alarm than triggered and the other people know that you fall due to some attack or other reason.Do you use any devices like that?

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  • donleyburge
    replied
    Leslie,
    You 1 are not putting your family through anything. You are the one going through it they will be sharing with you. This is not the end of the world sugar there are so many ways to combat the kidney problems. I have been on PD for two years and have worked the entire time minus the two weeks to get healed up from surgery. Like everyone else has said there is support here in droves.
    Yes it is very scary at first but you can do this Davita will help you do all the filing you need to do the have a great support staff and they will take care of you. You will have to see if you can or want to do Hemo or Pd Either one can be done at home and you can still work so don't worry about that. Your husband will support and help you through all of this.

    Remember you can always talk to us here and This Is Not The End Of The World, It Will Be Alright I Promise...... If you need anything just ask. Keep us up to date on your progress please.

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  • kcramer
    replied
    Hi Speedy
    I love the smell of sheets outside and after last weekends snow and these two beautiful days, I just had to hang the towels and sheets out.
    I had a jacket on but it smelled like spring. Sorry about the snow. YUK we have had enough of that. It is to rain
    today but that is so much better than snow.

    Have a Happy Easter and take something from today that will help you each day. God is so good. This season and Christmas is my favorite
    holidays because of the meaning of each and the food we eat is my favorite.

    Leave a comment:


  • Speedy1wrc
    replied
    I am jealous it's that warm there. It was beautiful day here too but not warn enough to hang laundry outside. We still are expecting snow tomorrow!

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  • kcramer
    replied
    Thanks Stumpr54
    I have both Medicare A under my husband and B under my school retirement insurance. I have to pay into both Insurance and Medicare B each month. (Medicare really isn't all that free like people think). Although my husband is retired, which makes it nice because he goes to the Y with me
    for encouragement and he goes with me to the doctor's , he is a counselor part time since he retired and is a great help.
    He is very healthy and has been eating healthier since my diet has changed so much.

    I also didn't tell you that a year after the surgery, last October, I took a step down the stairs and re injured the Achill's and was put back into the
    cast for 4 weeks and a boot for 2 weeks then going through therapy again for three weeks. By this time I had water weight starting in the ankles making it hard to walk fast and being out of breath from the pressure on the diaphragm makes me walk slower too.
    When I go to do water exercises I walk slower but when in the water, I don't feel that pinching that happens when I just walk nor do I
    get out of breath as much. If I do, I just slow down. When the ankles are bad, I make sure I am moving around the house or outside once each hour. My interests in cross stitching, knitting and crocheting keeps me busy. With three grandbabies being born this year, I have be making a lot of baby things.

    Here it is sunny and finally warm enough to just wear a jacket. I even hung the towels and sheets outside. The difference
    is...my husband puts the laundry basket on something so I don't have to bend over to press against my insides.
    Have a Happy Easter. Tomorrow is early church (our church has 4 services-two tonight and two tomorrow morning) and then to
    my youngest sons for lunch.
    Last edited by kcramer; 03-30-2013, 02:02 PM.

    Leave a comment:


  • stumpr54
    replied
    Hello kcramer,

    Wow, I had no idea that you had faced and addressed such substantial physical challenges. The issues with your left ankle make my double hernia surgery of October 2011 a walk in the park by comparison. I have been fortunate to have not experienced any chronic joint related injury that would prevent me from the brisk walking regimen that my wife and I have taken up since my employer instituted a wellness program back in 2010. I've experienced some gout attacks and bursa sak infections (knee) that hobbled me for a few days at a time before the prednisone or amoxycillin took affect.

    Since embracing the exercise and healthy eating elements of my employer's wellness program, both my wife and I have significantly improved our physical fitness and overall sense of well being - essential for living with a chronic disease and now 5 times per week home hemodialysis. We're incentivized to actively particpate in the program through rewards points that convert into a sizeable monetary contribution to the company's HRA (Health Reimbursement Arrangement). This is a fund that can be used for out of pocket medical expenses, e.g. annual deductible and copay. In spite of healthier living, the affects of my PKD and increasing age, have resulted in both of us reaching the annual out of pocket maximum in at least 3 out of the past 4 years. My employer's HRA contribution does not expire as does my annual FSA contibution, which is now limited to $2500 per year per the Affordable Care Act. My eligibility for Medicare A & B with the start of home hemodialysis in July 2012, allows me to fill a large portion of the out of pocket medical expense gap owed to the $2500 FSA limit for 2013.

    Even before the incentives of my employer's wellness program, both my wife and I made a point to have annual physicals. Thanks to those annual check ups and seeking medical attention when appropriate, we have been able to detect and manage an array of intermittent and chronic medical conditions, in effect we have greatly reduced the aspect of "surprise" in personal health. I too often read and hear about individuals who purposely stay away from doctors only to discover a dangerous medical condition has been present and now requires extraordinary measures to address.

    I have been managing my PKD since its diagnosis in 2002 with annual, semiannual and quarterly and then monthly assessments, either office visits and labs or labs only as the disease has run its course to the start of dialysis. After all, it is my health and who is in the best possible position to manage it?

    When my GFR, BUN and creatinine took their first big turn for the worse back in fall of 2010, I asked my nephrologist if I should get listed for a transplant. He of course said yes, and gave me the necessary referrals to start the listing process. I spent my remaining days of 2010 vacation getting poked, prodded and questioned by the medical staff of my affiliated hospital's kidney transplant program, and by January 2011 I was approved for listing. Regrettably, the waiting time on their list for a Type O cadaver kidney was 3 to 5 years. During the summer of 2012, with dialysis rapidly approaching, my nephrologist recommended that I get listed at another regional medical center, one that is far larger and thus performs a far greater number of kidney transplants and has a shorter wait time. I was able to use much of the testing results from the 2010 listing and had to meet an assortment of other requirements they imposed, but in the end what I started in early summer 2012 I was able to conclude with a successful listing in October 2012. Better yet, their wait time is 2-1/2 years for a Type O kidney and I was able to transfer my list time from the other program to theirs, cutting my time on the new list by nearly 18 months. Waiting another year for a kidney actually seems too short a time period given the waits that most of the folks on this website are facing.

    A big concern is the viability of the donor graft. I was able to specify narrower donor criteria, which would improve that viability. One of the problems of transplantation is the development of antibodies that then narrow the compatibility of other donor kidneys for future transplants. If I am goint to go through the surgery, I would greatly prefer that the kidney would function for five to seven years, or the average for a cadaver kidney. My other option is my wife as donor. I'm not keen on this option as it would disable both of us for a period of weeks, e.g. lifting restrictions, etc. and it may impair her remaining kidney function, which by all measure is more than adequate with two functioning kidneys.

    The reason I'm not desperate for a transplant is that we are making a good go of home hemodialysis, e.g. given the known challenges and limitations, this is not the worst gig in the world. I'm as healthy as I could wish. I am able to continue to work full time and even travel for short periods. In short, I am able to continue living much as I did before beginning home hemodialysis, I just have to schedule and accommodate about 20 hours per week for treatments. It helps that my wife and I are very task oriented and disciplined. Having to do a treatment becomes another task for the day, with the difference being this is a task that we cannot put off for another day.
    Last edited by stumpr54; 03-30-2013, 11:27 AM.

    Leave a comment:


  • kcramer
    replied
    Hi Stumpr54
    Glad it worked out for your trip and thanks for additional information.
    I realize that I can drop real fast since I have lost 10% in a 6 month period.
    That was a bad kidney infection which made my choice to retire two years early. I think because
    I am staying well and have not had an infection since July 2012 and then dropped 3% with that
    infection. I am drinking lost of water to help that not happen again and I keep exercising. My doctor has told me
    I need to keep away from the infection which drops my usage levels. Also, to keep moving and not to sit and do nothing.
    12 days until I see Dr. Lui. Are you on a transplant list? My husband wants me to start the process when I
    see the doctor. This week I have had water on both ankles (not calves although they are cramping a little)
    which has made them stiff and walking hard. Still doing pretty good in the water walks at the Y.
    The left ankle is the one I had surgery on after I retired. The last two years I taught I
    was using a scooter in the halls at school. I had fallen about 10 times in the last three years I taught. I was also
    wearing braces so the surgery was needed. It was a tendon that was hanging on by less than 5% and between those pains
    and the kidney infection, I was pretty sick. The surgery was a biggie (9weeks in a cast) and they had to attach the tendon to the Achilles tendon
    in the back of my foot and another tendon under the arch of my foot. That foot is the one that hurts the worst when
    the water retention happens like it did this week. I took a water pill which I am not to take unless it bothers my walking.
    Sure don't want to fall again or have to use a scooter either. I am so glad I had that surgery because I can exercise. I told you
    this because keeping positive and moving is very important. If other read this I want them to know to keep pressing to a goal,
    staying active and doing anything healthy to stay positive. Your information is helpful too.

    Leave a comment:


  • stumpr54
    replied
    Those are numbers that I was seeking a year or more ago. When my GFR and creatinine started to drop/climb they went pretty fast - the span of a few months, e.g. my April 2012 numbers were stable to improved and May's collapsed. Being well hydrated will improve your numbers. Oddly, I didn't feel any different in May than I did in April. Part of it was the resiliency of overall body to acclimate to the increased toxicity. I had been experiencing intermittent swelling, mostly of the left calf and occassionally ankle and most noticeably at night since 2007. I started wearing a compression stocking to better distribute the fluid.

    Got back from Denver as planned and did a half treatment (15 liters) between 11:30 pm and 1:30 am last night. I didn't want to waste the batch of dialysate that I made on Tuesday morning. The most recent enhancements made to NxStage's Pureflow SL extend batch life to 96 hours. I went into my home hemo clinic this morning for a transonic on my new button hole access and not surprisingly it ran wonderfully in either "push" or "pull". The buttonhole is on the same vessel that contains my original venous button hole. I had that site tested back in late December and it performed very well.

    The new buttonhole site is quite sensitve to needle position but only when used as the arterial access (pulling). I've had to do needle position adjustments early in the treatment to optimize flow and keep pressures in the acceptable range. The flow in this vessel, which is acually a run-off from the original fistula, is nowhere near the volume of my original arterial access, which is closest to the anastomosis or where the artery and vein have be ligated (joined).

    I will be seeing my vascular surgeon this week to see if he can improve the flow to this vessel by tying off other runners that populate the underside of my access arm. Those vessels do me no good because they are located where I cannot get at them with the facility of the vessels on top of my forearm.

    The flow in the new buttonhole access is great as long as my upper arm, or more precisely my elbow remains below the level of my heart. The moment I raise it above that point, my arterial pressure spikes and a #24 (Arterial Pressure High) alarm will trigger. Resetting the alarm and restarting is easy - I just have to make sure I've got my elbow back down below my heart level. The flow in my original arterial access is so tremendous that I can put my access arm in any possible position and the pressures are unaffected. This is what I want my new access to be capable of, giving me more feedom and flexibilty with the arm while I am treating. As you can imagine, with full range of arm motion during a treatment, I am only limited by the proximity I must maintain to be connected to the NxStage System 1 cycler via the blood lines. They are purposely short, but do afford plenty of freedom provided they are routed and properly secured. I utilize a series of three velcro elastic arm bands to secure the lines as they come out at my wrist and then make a U turn up my arm and then across my chest and back toward the cycler. There is little that I cannot do while sitting and "hooked up". Everything I need to access is within reach. Anything beyond that, which I failed to plan for is capably retrieved by my sterling care partner (wife). I'm wrapping up the second 15 liter treatment expend the remainder of Tuesday's 60 liter batch of dialysate, and have a mere 22 minutes left on the treatment. When I do a half treatment, it seems that I'm getting off the machine moments after I just got on. Of course, crafting a post on the DaVita website makes treatment time fly by as well. I'm looking forward to my first Saturday off (no dialysis) in nearly three months - the reward for this week's business travel and some additional treatment scheduling sacrifices made this week.

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  • kcramer
    replied
    Saw reg. doctor. GFR is at 16%, BUN is at 50 down 3, creatine is at 2.98 I just missed the 15%. All other blood work is good. I am relieved in one way and wished I would have recovered a little back. The weight I have gained within last four weeks is water mostly below the ankle and across the foot and back to heel. Also, abdomen. Heart sounds good. Hope you got back from your trip and doing well. How did the new button work?

    Leave a comment:


  • stumpr54
    replied
    Hello kcramer,

    Coming out to the Denver area on business was a boon - for the weather. Although cold in the morning (30's) the afternoons and early evenings in the 50's are a far cry from home in the 20's and 30's, and you can't beat the sunshine. It helps that I treated a lot of days in a row before the trip, even though two of those treatments were 20 liters, instead of my normal 30, though staying on the 150 liters for the week. Most HHD patients are treating 5 days per week but the occasional stretch to 6 days by splitting up (halving the dialysate volume) the normal treatment amount on two of the days seems to really do a great "cleaning" job on the blood. I don't build fluid owed to the polycystic kidney disease, just toxins.

    My labs (nutritional values) have been fabulous, even to the point where my phosphorus has gotten low enough to stop taking phosphorus binders with meals. My anemia (hemoglobin) has improved markedly since starting dialysis and allowed me to reduce my weekly Epogen dose from 5000 IU three times per week at the start (hemoglobin at 9.0) to 2000 IU (hemoglobin between 11.0 and 12.0) once per week.

    One theory for this is that the dialysis is sparing my residual kidney function and allows them to perform as they could not pre-dialysis and dealing with the overall higher toxin levels in my blood. My average post dialysis creatinine, BUN, and GFR levels are where they were back in 2010 nearly 2 years before starting dialysis.

    I wasn't ill before starting HHD, but my health was declining at least from a lab values perspective. While I could have gone for additional months at a steady rate of decline in kidney function, I'm glad I started training and dialysis when I did, especially since it was my choice to do so.

    stumpr54

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  • kcramer
    replied
    Stumpr54
    Let me know how you feel on Sat or Sun. I am going to the regular doctor tomorrow and ask for my blood work report. Therefore, I will have a heads up on my April appointment and I still have two weeks to decide. The day after that appointment I will be going to a dialysis center with the TOPs nurse going over everything with me. Even if my numbers go up (wishful thinking) I will be talking to her about the NxStage System 1 and really looking at their
    in center room where I can go away from home and do it myself. My husband has not given up hope I can do DH. I am thinking that the pressure will be
    too much. I will listen to the doctor but I really feel I am in more control than I was before I started blogging with you. You have been very helpful. I have saved you blogs to refresh my memory before I go to see the doctor. Hope you were able to help your friend and all went well for you. I guess I will learn about dialysate later when I go to the center for that education. Thanks again.
    kcramer

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  • stumpr54
    replied
    Hello kcramer,

    That friend was notified at work this morning that he had to be in Denver tonight. I booked the flights (two non-stop one ways), hotel and rental car. I went home at noon ate lunch, packed, set up the NxStage System 1, tested choloramines on the dialysate (I had started a batch of dialysate at 6:00 am without any knowledge of the trip) treated for nearly 3 hours and then headed for the airport.

    I'm now in Denver and won't fly home until Thursday night. By taking my two off days during the work week, I can support a last minute trip like this and still stay on my 5 times per week (150 liter) treatment schedule. I had planned on taking Wed and Thur off, and now with 30 liters of dialysate potentially going to waste (96 hour life from batch start) left from the 60 liter batch I just made this morning , as I will be treating on Friday at my Home Hemo clinic to run a transonic (flow & pressure test) on the new buttonhole access I created in my fistula, I'm considering a 15 liter treatment (in place of the normal 30) on Thursday when I get home and then another 15 liter on Saturday - 12:00 am, thereby using the remaining 30 liters that I made and opening up a off day on Saturday. It will be two late nights but I'll either be sleeping in (Saturday) or observing the Good Friday holiday and treating in the morning at my clinic. The tough part of the 2 night trip was lining up last minute one way non stop flights heading into the Easter weekend.

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  • kcramer
    replied
    There is a lot of helpful advice on this site and you need to explore. Go into the active streaming and find positive people to
    talk to. If someone has given you good advice and you like what they are saying to encourage you, click on their surname and
    send them a message to become your friend. Don't get negative because you are scared. Find positive things to think about and
    do while you wait. I have three grand daughters being born this year. I hope to get in two more vacations before my dialysis starts and
    I am planning on ways to go places even when I dialysis. Negative self talk is something that will make you feel worse. You don't need
    that. My husband is my supporter. My children and grandchildren know I am not well most of the time but I tell them to keep me in the
    family as if nothing is wrong as much as possible. Yes, I sit a lot but I make sure I am doing something and every hour I try to do some
    type of exercise even if it is to walk around the house. I have heard you can work with PD and I had a friend who was a teacher who
    was on PD with four exchanges a day and did it at school. Others do it at night and have their whole day to do what they normally did.
    My mom was on HD in center years ago but I have found a friend on this site who does HD 5 times a week at home and works. I am retired
    but doing it myself seems to be the best. I pray you will think about positive things and find some friends.

    Leave a comment:


  • Speedy1wrc
    replied
    new..That is a huge problem. My center entered bogus numbers too. They never took standing BP's and never took my temp before or after. Yet every time I went to the Dr for my monthlies, the numbers were always filled in. There never were any notes or comments on day's when I cramped and they had to give me a saline blous either. I'm sure that by the book, the center looked perfect.

    That was one of the many reasons I chose to switch to Home Hemo. During the training(at a different center) I also found how badly they were doing on sterile and sanitary procedures. How they were cannulating was also way off base.

    As many will tell you, follow up on your treatment yourself. Check your flow sheet at the end of treatment if you suspect it's off. Call them out on it and have them explain what the differences are.

    Leave a comment:


  • newkidneys
    replied
    thank you so much for your input , we are using granuflow and nataralite at our center , this quite alarming to me because the day of incident , all of my numbers that ran in the red apparently was not recorded nor noted by the center , they submitted normal numbers for the treatment center for when I checked them they were all listed as normal.bp 110 over 70 , hr 95 . this simply is not accurate. what gives here

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