The Queen has a Fistula la la la la

[HipHopQueen]

I tried to give it a musical sound with the extra la la la because it does feel like something sorta musical. Had fistula surgery last week. Wheeled in around 7am woke up at 10. It's amazing how they can take you out so quickly and bring you back. Do what needs to be done and return you to this world . The surgery went well, I'm still trying to get use to this feeling in my arm. My arm is very sore on the one side. The incision site looks good.

Do you get use to the thrill? It's like it's own thing. I can hardly describe it, it's a little annoying to be honest. I also have this feeling like when you put alcohol on a scrape. It's a burning of sorts. I am thankful for it and all, but it does take some getting use to. I go to the doctor next week for my follow up.

I've also been working with the transplant center to get all the testing in that they requested. I had an abnormal ekg so I had to then get en echo which was fine, but waiting on the results of all these test stinks.

I'm just plugging a long, the next two weeks are rough on me with school. So much to do. I'm just trying to stay above water at this point. Send more good vibes, prayers, whatever my way.

[LeesKees_NJ]

Glad to hear all went well Queen! I thought the burning in my arm after surgery was going to last forever. But eventually it did stop after a week or two. You arm should not hurt at all after you heal. The fistula will get enlarged as it matures. But it will not hurt, I promise!

[HipHopQueen in reply to LeesKees_NJ]

Do people ice their arms or not usually?

[Juliepkd]

Hi. So pleased it went well for you. I was so surprised that they knocked you out! Here in the UK, they do it under local anesthetic. I had to lay there for 2 and a half hours with my arm out whilst they did it! I had a lot of bruising and it hurt for a few days whilst it healed, but it's now completely painless.I was lucky, like you, they felt the 'thrill' immediately. My poor sister had 3 attempts to get a functioning fistula. Thankfully she has a 'Bracial' (I think that's what it's called) it's right up on the inside of her upper arm, whereas mine is at my wrist. I was told to exercise it by squeezing a rubber ball in my palm as much as I could to help it to mature.

I took a while to get used to it, and even now, if I get in the wrong position to sleep, it sounds loud on my pillow!

My only issue with it is that, as it matures, it gets bigger and looks weird. Mine looks like a wobbly raised worm under my skin going up to my elbow! However, some of the patients at my dialysis unit, whom have been dialysing for years, have some absolute beauties! One lovely old guy says his looks like a string of sausages up his arm! The bottom line though, is this fistula is a our precious connector to allow us to have our dialysis, stay well and live our lives well too. I am so very thankful for mine. Wishing you all the very best.

Julie

[cs65 NKF Ambassador in reply to Juliepkd]

Julie, once I had a fistula gram and balloon angioplasty with just a local anesthetic because I had had a heart issue and they couldn't sedate me. It went well and I just did some deep breathing to get through any scary parts. Funny, I remember joking around with my surgeon during it! Yes, in the U.S. they put us under sedation by IV. I have a brachial fistula in my upper arm (I believe they use the brachial artery and join it to a vein). It is very important to exercise your fistula with a rubber ball - I wasn't told that and had to have a fistula gram and balloon angioplasty before I started dialysis a year later.

[HipHopQueen in reply to cs65]

No one told me about squeezing a ball. How often are you supposed to?

[cs65 NKF Ambassador in reply to HipHopQueen]

Yes, you should squeeze a rubber ball several times almost every day to exercise those muscles in your fistula arm and to help that fistula grow in size. Yes, it'll be ugly, but think of it as your friend! It will help you save your life!

[HipHopQueen in reply to cs65]

This is going to sound dumb, but what kind of ball? No one told me about this.

[cs65 NKF Ambassador in reply to HipHopQueen]

Well I was given a kidney shaped red rubber ball to squeeze, I can't remember where it came from. You could check with your kidney doctor or dialysis clinic. It is printed that it's from US Dept. of Health and Human Services, National Institute of Health, NIDDKI. Or any other soft, squeezable hand sized rubber ball would do.

[LeesKees_NJ]

I did for the first several days, it helped with swelling and pain.

[drmind]

Sending prayers, positive light, good wishes, and the best of everything that the recovery goes well and easy. And, when you or others look at the fistula, see it as a pathway to life and be happy it's available. Let us know how things progress.

[HipHopQueen in reply to drmind]

Thank you so much.

[cs65 NKF Ambassador]

Yes, it's good to ice the fistula for a few days, 10 minutes on, 10 minutes off using an ice pack inside a towel or washcloth. It'll help the hurting feel better and control any swelling. About the thrill - I still have one even though I haven't used my fistula since the transplant a year and 4 months ago. Be glad you can feel the thrill - it means the fistula is working! You're on the right track towards getting onto the transplant list - Congratulations!

[HipHopQueen in reply to cs65]

Thanks. I hope so.

[Darlenia]

Sending you much peace and light your way. Keep marching on towards a transplant. Where there's a will there's a way. You're a very proactive lady - good things will come to you!

[HipHopQueen in reply to Darlenia]

I hope so and I hope good things to you too!

[Aloha49]

Thanks for your post. I am still going back and forth with the decision for PD or Fistula. I am visiting a Dialysis Center this week. My family thinks the PD will be too much for me living alone, too overwhelming and cause too much anxiety. But I am scared of the needles 3 times a week too. I do value my life and want to live as long as possible until I can also receive a donor kidney. I am on 2 transplant lists so far and praying. I got courage from your post. You are very courageous and inspires me. Thx. BB

[HipHopQueen in reply to Aloha49]

Awwe thanks Aloha49. I think all we can do is keep our spirits up and make the best decisions we can and the rest is up to God, the universe or whomever you believe in. I feel that posting here helps me and I hope others. It's been a great community so far. I was thinking about PD myself. I got a fistula incase something went wrong with PD I would have a fistula ready. I'm thinking I won't be able to do PD my living space I don't think it really conducive to that. I live with my folks and I don't think either of them can really help me, plus my mom made a comment that made me think she wouldn't be much help. I know that with in center treatment people would be there that know what they're doing. So I'm leaning that way. Just worried about how it will work with work. We'll see. Anyway good luck with your decision!

[Aloha49 in reply to HipHopQueen]

Hip Hop Queen, thank you for your response and comments. It is encouraging for me. I will be getting the fistula surgery in a week and a half and know this is the right place to start for me. My daughters have a difficult time accepting this decision. But I did not want to end up in the ER and it takes time to heal too so being proactive is good. I am not sure about the recovery time after the surgery and the pain. Are you house-bound for 2 weeks? Will ask the surgeon in the prep. Thank you, BB