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  • #16
    That is AWESOME news Cassie. Whatever you're doing, keep it up! We'll look forward to hearing even better news in 6 weeks.
    It's not about waiting for the storm to pass, but learning to dance in the rain.


    • #17
      Originally posted by Cassie View Post
      Another update. I went today to the neph and got my twice monthly procrit injection. His office switched this month from Aranesp to Procrit. The Aranesp ran $1439 per inj. and the Procrit is just under $1000; so my insurance company should be happy. LOL!

      But the exciting thing is that my creatinine had dropped to 2.3 and my BUN to 53! Praise the Lord! That brings my GFR back to 22% from 17%! I don't have to go back to see the doc for 6 whole weeks!

      I hope everyone else is doing well also. Have a great evening!

      AMEN! Praise the Lord!
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      • #18
        Wonderful news, Cassie. I hope that you keep on improving. Are you following the renal diet?
        To the stars through difficulty!


        • #19
          No, I'm not following the diet, chefnancy. I'm still at the mercy of this wheelchair. Ed did fix a couple of meals this week--both out of a box. Hamburger Helper and a Homestyle Bake, both with major amounts of sodium. I was concerned but I didn't have any problems with swelling.

          My doc has dropped my lasix to once a day, a second one if I need it. I use that second pill maybe once a week if at all.

          I finally got approved for Vibrant health care to come in, but now they say they don't provide housekeeping and light cooking. When I looked at their website those things were offered. So, I just eat what I'm given or can get to.
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          • #20
            Call the social worker at the dialysis center you were using and ask if there isn't something that can be done to get you some help to get proper meals. I have a feeling that if you could get better nutrition you would heal and be out of that wheelchair in no time since you are doing so well with less than optimal nutrition. I wish I could come there to cook for you, I am that concerned about it.
            To the stars through difficulty!


            • #21
              Cassie, Been reading your posts tonight and can see why you are so happy with your lab reports. Like ChefNancy, I wish there would be a way for you to eat correctly . You are doing so well without the proper foods that you would just have to do even better with a good renal diet. Could the meals on wheels program help you at all? I don't know what qualifies a person for that daily delivery. I know they do provide unsalted meals or at least did for my mother. You may not eat everything they serve, mom used to complain about some of the food, but she always got good salads and vegtables and a small portion of some kind of meat. Even with a little salt, would still be better than a box meal that is huge in sodium. Nancy, I wish you could cook for all of us, we would eat like kings :>)

              Cass, I am going to make some calls tomorrow to see what I can find out for you. Maybe some agency here in MO will have an idea. Nan


              • #22
                Chefnancy, that would be wonderful to be so pampered by you cooking for me! Thank you for the thought and concern. I appreciate it. When a person is 'down' and someone actually thinks of them, shows concern, that makes you feel so good.

                I am not whining about Ed and Katie doing anything for me, they, along with me, get tired of this situation. They work, then have to do everything around the house, so I try not to ask for much.

                When the Vibrant nurse came in I told her why I had originally called them in--because their website offered light cooking and house cleaning. She told me they don't. She also said that Meal-on-Wheels does not operate here any longer and she couldn't think of one resource in our county that offered these services. Sad, isn't it? Our rural county doesn't even offer rides for people who need to go to dialysis or medical visits. I know of one woman who, though quite ambulatory, had to take the ambulance the 35 miles to the dialysis clinic, flat on her back, belted down on the stretcher, because that was the only offering to get her from the nursing home to the center. Once at the center she walked to the scales and chair just fine. We are just a bunch of farmers, coal miners, and hicks (I'm a hick LOL!) around here in this county. Ed has never worked in this county either. He's always driven 30 plus miles to jobs. Which is quite costly now days!

                Today Katie made burritos, chips and cheese, and refried beans. I took 3 Renagel. LOL! Thank you all for caring and being there. You are a blessing!
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                • #23
                  Nanny, I hope you are able to find something for Cassie. I guess I am spoiled by the good treatment of dialysis patients in PA. We can get rides to dialysis, there is a state program to help pay for transplant and dialysis drugs (I get 360 Renagel for $5.60), and there are programs like Meals on Wheels. We are also a redneck county (lots of old oil fields and lumbering), but we do have services. I guess I should thank my lucky stars.
                  To the stars through difficulty!


                  • #24

                    ChefNancy, I just read your note about getting Renagel for $5.60. Can you let me know how you get this for that price? I mentioned in another posting that I may have problems with insurance due to bad advice I received. Hopefully not. But on the off-chance that I won't get coverage I need alternatives when my current meds run out. Thank you!


                    • #25
                      My Renagel co-pay is $50 for a 3 month supply through Ed's insurance. We have to mail in our prescriptions to them. If I bought it at a local pharmacy it would cost $25 per month. I wish it was generic.
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                      • #26
                        Pennsylvania has a special program to help kidney patients pay for their drugs, so I get it through that program. Before I found out about the program through my social worker I was paying a $20 per month co-pay through my Medicare Part D.
                        To the stars through difficulty!


                        • #27
                          Yea Cassie

                          hi cassie! i am so happy for you and now know there is hope. think positive ! and know LIFE IS GOOD!!!! take care
                          LIFE IS GOOOOOD!!!!!


                          • #28
                            figuring this out

                            ahhh haaa i am just figuring things out. everyone is still asleep and i am so happy i woke up breathing so here i go again. i was reading what some of you are paying for meds. when eric first started, before medicare kicked in the cost of his meds were very depressing and discouraging, i would have to make him go to the er just to get meds filled.
                            now with medicare and the supplemental insurance he pays about $8.00 for 90 day supply of phoslo,minoxidil,etc. he is on 6 different meds. i had to borrow money, pawn stuff, and just about anything else(legal) to scrape up money for his caretaking. and so as you all know...LIFE IS GOOD!!!!
                            LIFE IS GOOOOOD!!!!!


                            • #29

                              ya know, Cassie, my labs are good (comparatively speaking) creatinine as of wednesday was at 2.4 and BUN is at 41, I have moved up from kidney failure to 4th stage but my neph refuses to make any changes to my 4 exchanges a day even though the adequacy results are at 4.27. by the numbers, I think I should not have to do dialysis. He does not agree......I get the impression he has a "one size fits all" attitude. don't know if I should push the issue or not....any posts appreciated!
                              CAPD (continuous ambulatory peritoneal dialysis)
                              since 7/13/07 with 4 exchanges a day
                              kidney function improved after 2 years
                              presently at 2 exchanges a day :-)
                              diabetic, not on insulin


                              • #30
                                Originally posted by iamerichenry View Post
                                ahhh haaa i am just figuring things out. everyone is still asleep and i am so happy i woke up breathing so here i go again.
                                You better believe I'm sleeping at 8 a.m.! LOL! I've always been a night owl, even when hubby worked days for 32 years. He is now on nights and as you say, Life is good! LOL! I love to stay up till about 3 a.m. and then sleep till 10:30-11 a.m. It doesn't always work very well with the rest of the world, especially on days we see our doctors. We loose sleep, for sure! LOL!

                                Patty, how are your other tests results? Your BUN, potassium, phosphorus? What about water retention? I hope your doctor is taking all those things into consideration. Do you feel good?

                                When I first stopped dialysis, my creatinine went up to about 3 from 2.4 during dialysis, if I remember right, but in a week or so started back down. Last test was 2.3! I am back to only having monthly lab work now. Twice monthly Pro-crit.

                                My doctor's office tried to get the insurance to deliver the Procrit (insurance refused the Aranesp) to my home so I could give myself the injections rather than driving 35 miles one way to get them. Insurance called this morning. They said it would cost me $90 for an 84 day--6 injections. I said to forget it. In the office I am covered 100% because my deductible was paid in full last January. So I'll keep making the trip. It gets us out, we usually eat out, etc. Have a great day, everyone!
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