Kidney — TransplantLyfe



TServoldTransplant Patient
April 12, 2022 in Kidney

What can you all share with me about being on Dialysis? Yes, I have taken all the kidney smart classes, read the material that DaVita shared. I am looking for some first-hand insight. I had labs done today, and even after all my hard work my GFR dropped 5 points putting me very close to needed dialysis. Keeping my fingers crossed we are not there yet, and a transplant is close. I meet with my nephrologist next Tuesday. In November she told me if I kept my GFR above 15 I could avoid dialysis and today it came back at 17.

Yesterday, I had a failed infusion site and the highest blood sugar I have seen in years. I got my blood sugar back down after a couple of hours but, today my labs didn't come back like I had hoped. Everything except the GFR was stable, but that doesn't help. It's weighing on me. I am trying to remain positive, but want to brace myself for what's to come.

1 - 4 of 4 Replies

  • KarinExpert
    Transplant Patient

    Hi! Your gfr is affected by the dehydration the hyperglycemia caused so let this settle in and hydrate and perhaps you will bump back up to closer to 20!

    April 13, 2022
  • Howanitz39Transplant Patient

    Hi I did both pd dialysis and in center dialysis before I got my transplant. With the pd you get a catheter put in your stomach and some of it does hang out of your stomach sorry I do not remember how much. You do keep it covered up with tape that is provided to you. I did my dialysis at night while I slept. With the pd you do get training on how to do it like how to put it together and how to hook it up and how to take it apart and how to keep the spot clean that the catheter is coming from. You can drink as much as you want and you get a long tubing so you can move around some. When you are on pd dialysis they do not want you to swim in a public pool and you can notuse a hot tub at all. You will get a lot of boxes of fluids about 80 the first time you get three different strengths of the fluids and rolls of tape masks and two different types of cleaning solutions that you will be taught how to use all of this will be delivered to you and the driver that brings you your stuff will put the boxes where you want them every month you will get a call to find out what strengths of fluids you need and how many, and if you need any of the other things you need that they give you. The one thing I did not like was that if a alarm went off on the machine I was always worried that I did not do the right thing you will get a book and a number to call to help you day and night. With the center dialysis I had a Vass catheter put in my chest and like the pd catheter it does get covered up when it is not in use you get that put in while you wait for your fistula to heal you can not get the catheter wet so you can not go swimming. You are restricted on how much fluids you take in and that means ice, milk that you put in your coffee and cereal, apple sauce, anything that is a fluid. I could only drink one 16oz of fluids a day. Most people did three days a week for three hours a day but with me I had to do four days a week for four hours. You can sleep while you do it and watch TV, you will get cream to use to numb the area that they stick you with, they will have you put the cream on a hour before you go get your treatment. I did like that I did not have to worry about any alarms going off because your tech will take care of it. I hope this helps you and does not scare you and good luck with what you chose and I hope you get your transplant before you need to go on dialysis. 💚

    April 13, 2022
  • TServoldTransplant Patient

    Thank you both for your feedback, I find them both SO helpful!

    April 15, 2022
  • VegasrailsTransplant Patient

    I went to FMC for dialysis. Just prior to reaching Stage 5 (GFR 15) I went with a Fistula, I had 2 minor surgeries the first was the creation of the Fistula in my right arm. The second was to move the fistula to provide easy access.

    My nephrologist and I after discussions agreed that once reaching GFR 8 I would go on dialysis. I admit I fudged it and allowed my GFR to drop to 4 before going on dialysis.

    Since the fistula was mature over 90 days old (over a year for mine). I had looking back normal problems adopting to dialysis, example pills during or before each meal, limited to one liter of liquid per day, eating habits. It a 180 from my previous lifestyle. There was some minor pain involved during connections. occasionally. Otherwise I got used to the routine starting initially during the first few days at 2 hours moving to 4.5 hours due to my weight 127 Kilo's.

    It did take me almost a year to adopt to the many changes. Coming in heavy (additional water weight) would require an additional treatment. Since you can only take so much liquid off, 4-5 kilo's, during a treatment. To much and you incur cramps or worse, it is a learning experience.

    Once you adopt to the new rules, creating habits, and most of all remaining positive it not bad, in my opinion. It has it's inconveniences but you find work arounds for family outing, long distance trips and daily work. Just educate yourself personally, do not let dialysis stop you from living your life.

    I went into Stage 5 in 2010, dialysis in early 2011 and after a lot of soul searching got on 2 transplant lists and now living on my new kidney since March 5, 2020. Good luck

    April 21, 2022
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