New stage 5

[Poly3]

Hi. I am new to the group. New stage 5 and getting a fistula tomorrow. Told it is urgent. I am hoping to have a graft but was told my vessels are too small they would try. I’m 50 kids at home going to college. Still slugging along working. Tired. Itchy(thought I had scabbies, before I was diagnosed😂😂), have headaches, blurred vision and not much tastes good. Told I will feel better when dialysis starts, how do you all balance the symptoms, all the medical appointments & dialysis? Want to cry when I discuss each step. Cause I’m having to go so fast into this. It is what will keep me alive, but when things get worse I guess it’s reasuring I can put a stop on life. Not everyone can do that. Check out when you know it’s time.

[Hidden]

Im a hdf dialysis patient with 8 years and two fistulas. Firstly good luck and be prepared for serious brusing and it may take up to 6 weeks to work. It depends on the skill of staff. In the meantime you will continue using the graft or a line will be needed. My first one was an emergency and only just usable. It blocked up in the end but before that scans were saying theres an issue then the next one for surgeon didnt. My nurse wasnt watching my blood results and it blocked up one weekend as a direct result. The second required a blood vessel to be moved first. To do this I was put out for two and half hours with the op from hell. The most important thing to do other than get the strongest painkillers you can us to make sure your hb does not go over 15 without getting help. It will hurt a lot and they palmed me off with paracetemol. The second time I sneeked morphine in to me. Under local the op was done in an hour and you are fully aware but only feel the initial painkillers going in. Good luck. Try not to watch. A nurse talked with me through the first which helped as it was my first ever op. I was just so glad when it was over. To check its been succesful you are taught to feel for a buzz close to the wound a bit like an electric motor. My partner did this for me as she understood I felt terrible not only because life was progressing downhill but I was so sore and in a mess I was really low. 5 weeks later my kidneys failed.

Im surprised to find you are still working. Most pkd patients and most other patients dont work. I was ordered to stop the year before. Do not expect any improvement in symptoms. The first six weeks can be worse whilst staff sort the settings and do not have a big meal before sessions. Keep eye on fluid intake weight and bp readings. Get to know staff and learn the dialysis process as it releaves boredom and its interesting.

[rabbit01]

Hello and welcome, I am 51 and am in stage five. Sounds like I am right behind you in the line. I had my first visit to the dialysis centre on Wednesday where they explained the two different methods. I have been sent home to have a think and let them know which one I want. I was working full time up until a few weeks ago but then my eGFR hit 12% and I was getting so tired I thought this is crazy, so I have gone off sick. Is this something you could do or reduced hours or working from home? My company have been really supportive and understanding of my kidney problems. You will find this forum really supportive so do stay in touch.

[Poly3 in reply to rabbit01]

Well, my blood vessels were too small for the graft & I got 2nd prize a fistula. Plus grand prize, neuropathy in my left hand. The fistula works & the blood flow ito my hand is good. I had my 1st treatment yesterday. Dialysis made my hand hurt more, where I got poked is a little swollen & tender. I had leg cramps during the night.

[rabbit01 in reply to Poly3]

Thanks very much for the update. I hope things settle down. Keep us updated.

[cs65 NKF Ambassador]

My nephrologist had me get my fistula created about a year before I needed to use it and I still had a problem using it because I didn't exercise my arm by squeezing a rubber ball. Make sure you do that. My fistula didn't grow in size or mature, so I had to have an additional surgery to open it up some more. You will begin to feel better once you've been on dialysis around a couple weeks to a month. The tiredness is from anemia, the itchiness is from having too much phosphorus, headaches and blurred vision can be due to your blood pressure, I'm not sure about the food not tasting good. Your nephrologist can tell a lot from your bloodwork and advise you on diet, fluid intake.

Do you work full-time or part-time? You will need to work some medical appointments into your schedule - they are very important. Personally, I was able to keep working part-time after I started dialysis, but you really have to play it by ear as to how tired you are and if you're still able to drive. On hemodialysis you can work on your off days, but I think it would be extremely difficult to work on dialysis days because you feel wiped out after a treatment. Once you start dialysis, the staff will start you off slowly. They use the smallest diameter needles and just clean your blood at first. Later they will start to pull off fluid once they figure your dry weight (what you normally weigh without excess fluid). It takes a few weeks to get all that figured out, so be patient but make sure to tell the staff how you're feeling every time so you can work it all out together. It helps to take an active part in your care, so pay attention and try to learn all you can about the dialysis process so you can make it work better for you. You'll learn not to drink too much fluid between treatments or you risk cramping and headaches, for example. Living on dialysis is different, but I look at it as a way to keep living as I await a transplant. Good luck to you and let us know how you're doing. We care!

[kidneystories]

Hope it went well!

[Ribbit60]

Hi Polly3,

I have been on dialysis for 17 months. I also was put on it without warning. I had my fistula put in a year before . I was retaining water and was having trouble breathing. I had an appointment with my kidney doctor and started dialysis the next day.

I hope you didn't have any trouble with your fistula. I too have small veins. The doctor had to use another vein because the planned one was too small. Mine is crooked.

You won't feel better right away. You may lose your appetite for awhile. I did for about 2 months. I have diabetes so I had to get used to the effect the treatment had on me. I didn't eat anything in the beginning. I could hardly stand up after my treatment because my sugar was low. Now a get a snack of high protein pretzels while i am there.

I am retired so fitting in the medical appointments is doable for me. My daughter is married so I live alone. You sound so busy!

I am here if you need someone to talk to about all this.

[mingmiley]

How do you do now? Yeh, as dialysis gradually cleans out your toxins, I'm sure you will feeling better.