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Really Scared

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  • #31
    Re: Really Scared

    There is some discomfort to having needles placed into an access but I never once used any kind of deadening cream and I use 15 gauge needles as big as they use on dialysis . I have had 3,300 treatments and around 6,600 needles placed in my arm in the 21 years on dialysis. I have rarely had blood on me when that happens the bleeding is stopped with pressure on the site. You will feel tired after dialysis but better the next day your off. It is that day off that makes it worth while to me. I have on occassion gotten sick at dialysis but only three times in the last two years. Just make sure your nurse are dialysis tech is aware of how you feel, such as getting light headed are if your ears begin to pop, they can take actions that will improve how you feel pretty fast. Despite all the negatives about dialysis I thank God I have it. It really hasn't been that bad for me. I have lived to see my 11 year old daughter grow to be a wonderful 32 year old woman and I now have a 7 year old grandson. I would go through hell to be with my family and to see my grandson grow up. Yes you may get some blood on your clothes once in a blue moon are not very often but it will wash out. I haven't bled to death yet. My clothes cleaned up and the pain of the needle going in is only for a few seconds. I do feel wiped out after it so I go home and rest watch TV and take a nap until it passes. It will make you hungry after a good treatment sometimes I don't even make it home I have to stop and eat. One day after dialysis I drove on a trip 560 miles from the dailysis parking lot in Fort Smith Ar all the way to Alabama alone. I got there at 3am. oh yes I was tired but see I do things. I felt worse before going on dialysis then I did after being on it and you will live much longer on dialysis, without it you will surely die soon. Maybe you can get a transplant later depending on age and health. Hang in there dialysis is worth it I will pray for you to God gives you both physical strength and peace of mind. Who knows why someof us are dealt this hand but I do what I have to do and pray to God to substain me though this trial


    • #32
      trouble at the center

      I share some of your views , I think its the particular techs that are doing the treatment though , I was dialyzed on 3 / 20 13 , and have always had trouble with this particular tech , she began the procedures and during 3rd hour I started cramping really bad and asked to get off machine , she declared I didn't have long and just hang in there, I said take me off now.. she took me off and did the last blood pressue check , and to no surprise to me my blood pressue was 78 over 45 and my heart rate was 140 , all the numbers were in red. I felt horrible , physically and my mind was all over the place , she offered for me to take a glass of water and sit for 5 minutes. , my numbers just came back to normal today , and naturally I skipped my treatment for 3 / 22 13 we are basically at their whim . Does anyone know how I would rectify this dilemma , so that it wont happen again, this same tech once treated me for 4 hrs on a Friday and managed to remove all of 2 kilos leaving me well above my dw


      • #33
        so I did my lab check online and all my numbers were listed as normal parameters , and nowhere was it noted the adverse readinds of bloodpressue or heartrate , the numbers they had listed were normal , but I m here to declare they lied and manually put in those bogus numbers


        • #34
          Hello newkidneys,

          Your recent experience with in-center hemodialyis is not uncommon. The centers drive to get you through a treatment as soon and as safely as possible seem to be conflicting priorities and the result is too much fluid removed too rapidly, which drops your blood pressure and increases your heart rate, all of which leave you feeling miserable. The dialysis machines in center are designed to do a fast and efficient job and they will take a toll on the dialysis patient depending on how they are run.

          I have been doing home hemodialysis since September 2012 on the NxStage System1 (cycler) with Pureflow SL (dialysate maker), and although I only take off about 1.0 kg per 30 liter treatment, the removal rate is 0.5 kg/hr, which takes the fluid off during the first 2 hours (total 2 hr 45 min treatment) and my body has the remaining 45 min to "assimilate" the fluid loss. Sure, my blood pressures drop near the end of a treatment, but rarely below 110/70.

          I went to my home hemo clinic for a transonic (flow and pressures) test on my fistula, and they ran me on the "big" machine. After about 2 hours of treatment, my BP dropped into the 70's over 40's and I was fading away and feeling miserable. The astute dialysis nurse gave me an intervenous saline bolus through my blood lines, which pumped up my BP and I felt better almost immediately. This is what your dialysis tech/nurse should have done in response to your well below normal BP. The reason why this was not done was most likey a concern about putting back fluid that you "needed" to lose during the treatment.

          The big in-center dialysis machines are well known for being harsh and hard on the body, The NxStage System1 is far more gentle in its dialysis and fluid removal. Additionally, when you treat at home 5 or 6 days per week, your flluid build up between treatments and subsequent amount for fluid removal is less, which permit a shorter and gentler on the body treatment.

          I get done with my normal 30 liter treatment with 1.0 kg fluid removed and I feel energized. That is a bit of a liability when I dialyze mostly at night and have to go to bed immediately afterwards so I can get up and go to work (full time) during the work week. I may be a little tired from the occassional lack of sleep, but I am not drained. If at all possible, explore home hemodialysis for which you will require 4 to 6 weeks of training and a care partner to participate in the training and assist in your at home treatments.


          • #35
            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


            • #36
              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.


              • #37
                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.


                • #38
                  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.


                  • #39
                    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.


                    • #40
                      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.



                      • #41
                        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?


                        • #42
                          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.


                          • #43
                            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.


                            • #44
                              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.


                              • #45
                                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
                       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.