New fistula problems

[Pungo68]

Good afternoon. My husband was diagnosed with ESRD in June of last year., A few weeks ago they began using his fistula for dialysis. On Friday and today Wednesday they were unable to do dialysis because his vein became very swollen and a lot of bleeding happened. They sent him home without his treatment.

My question is this normal? He’s icing and using a heating pad for the pain and swelling, taking Tylenol. Any suggestions? I appreciate all or any responses as we are so new to this and any help is appreciated. Thank you.

[CatsAreTops]

wow! I don’t think he should be going undialysed …. Have they spoken with the vascular surgeon who created it? It may need more surgery to widen it? I had to have a second procedure on mine

[Pungo68 in reply to CatsAreTops]

Thank you for your reply. No one is referring him back to the vascular surgeon but I agree I think he should see him to figure out what’s going on. At least have it checked. How was it after you had the second procedure? Sorry you are going through that. Hope it’s going better for you now.

[CatsAreTops in reply to Pungo68]

You should definitely consult vascular surgeon. They can do a scan on it and see what’s going on.

I’ve been very fortunate and got the call for a kidney and pancreas last July. Sadly the pancreas failed. It was a difficult operation with a few issues. It was then that they decided the fistula needed to be better in case my harvested kidney didn’t “wake up”. It took a while but it finally did. I now have an excellent working fistula but have not needed to use it since pre-op!!

[Pungo68 in reply to CatsAreTops]

So happy to hear your transplanted kidney is doing well, my husband has his first appointment for a transplant program in March, it’s for doing labs and test for an evacuation for the list. Today that were able to run his dialysis treatment. This gives me hope.

[CatsAreTops in reply to Pungo68]

Always maintain the hope and stay positive. I’m so glad your husband had his dialysis. It should never be missed. He will undergo numerous tests for his workup to transplant. I wish you both every success.

[PuggyWuggy in reply to CatsAreTops]

CatsAreTops! I have been worried and wondering how you have been since you told us your kidney transplant had not worked out. Am I wrong in thinking that you also received a pancreas? Is that o.k ? I am hoping you are well in any case!

[CatsAreTops in reply to PuggyWuggy]

Hello! My pancreas was the failure. My kidney took a while but finally got going. I’m doing quite well. It’s difficult being immuno suppressed. Lots of issues can and do arise but I just address them as they do.

How are you?

[Jeshua7777 in reply to CatsAreTops]

Hi.....Greetings I'm starting dialysis soon.....MALTA

[PuggyWuggy in reply to CatsAreTops]

i am so glad to hear you are doing well! Sorry about the pancreas, but I guess if I had to choose, I would pick the kidney. You will most likely get used to being immuno suppressed over time. Just always take those meds (mine are mycophenolate, tacrolimus and prednisone), and be careful around people that are sick. It becomes 2nd nature over time! I am doing great. My labs are terrific and I finally got my potassium numbers down y being sure to hydrate well. Fluids really help your kidney(s) function well. Take good care of yourself. Again, I am happy you are doing well!

[CatsAreTops in reply to PuggyWuggy]

Thank you. I’m on the same immunos. 10 mgs of Prednisone which will stay that way until I’m past 12 months - it may stay longer. I try to drink lots of water - some days not so good but I’m very conscious of doing so. I’m glad you’re doing well. How long post transplant are you?

[PuggyWuggy in reply to CatsAreTops]

Good Sunday morning to you! My transplant date was November 6, 2005! I was told that my organs (kidney & pancreas) came from a young man who "crashed his car into a wall". - I feel so sad about that! Anyhow, I have had very few problems over the years. I have heard lately on this site about many people getting off prednisone. It is bad for your bones, and I have osteoporosis. At this point, I am afraid to change anything since I have done so well on my medical regime. i I just pray Trump doesn't cause me problems by cutting medical coverage.

[Pungo68 in reply to PuggyWuggy]

That’s very reassuring to know that you had a kidney transplant way back in 2005, your posts gives me hope that maybe one day this will happen for my husband. I know it must be difficult to know about the young man whose kidney was transplanted, that’s the hard part for me, but it’s a wonderful blessing that something good can come from such a loss. I’m with you I hope our benefits are not cut so we may continue to have the health care and medication we need. Thank you so much for sharing your story, it really helps to hear from others.

[PuggyWuggy in reply to Pungo68]

What yoju say about the circumstances (tragedy) that brought me my kidney and pancreas is true. That young man's tragedy save or changed several people's lives for the better. I hope hs family was able to take solace in that. I hope your husband gets his miracle soon, too! Stay hopeful!

[CatsAreTops in reply to PuggyWuggy]

Ah yes, I remember you’d previously said - well done. I’m now embarking on islet transplantation - it’s fascinating but with 40% success rate. It’s worth it to reduce or eradicate my diabetes.

Yes, I’m aware about the threat to bone strength and I’m about to start taking a medication to help with this. My bones are good at this point.

I’m Australian. Many of us have a very dim view of Trump!

[PuggyWuggy in reply to CatsAreTops]

I STILL can hardly believe Trump was elected! God help us all! On the positive side, your doctors seem to be progressive in their actions to address your diabetes. That is great! The islet cell transplant is certainly worth a try. You could be part of the 40%. Keep me posted!

[CatsAreTops in reply to PuggyWuggy]

Many of us here can either!!

Yes, I agree - worth a try. And, yes, will keep in touch.

Take care.

[Snowcountry]

No that is not normal at all. It may be a blood clot or some other reason but he needs to get an fistulogram and ultrasound. After determining the cause there are several further surgical solutions. Is the thrill sounding proper? But it needs to be determined and quickly. Because if your husband requires dialysis and they are unable to do so, this is a life threatening critical issue. Please get in touch with his Nephrologist and Surgeon ASAP. Please don't wait to be approached, pursue this actively.

[Pungo68 in reply to Snowcountry]

thank you for your reply, yes I think we definitely need to talk to his nephrologist and nurse at his dialysis tomorrow morning and if they can’t do the dialysis again we will go to the emergency room at the hospital where the vascular surgeon performed the surgery. Not being able to have dialysis is definitely life threatening, thanks your knowledge and experience is very helpful to us as we are new to this situation.

[Pungo68 in reply to Snowcountry]

update to previous reply they successfully performed his dialysis Friday, hopeful for the coming week, the clinic is looking into referral to vascular surgeon. Thank you so much for your help.

[Pungo68]

thank you for your reply, yes I think we definitely need to talk to his nephrologist and nurse at his dialysis tomorrow morning and if they can’t do the dialysis again we will go to the emergency room at the hospital where the vascular surgeon performed the surgery. Not being able to have dialysis is definitely life threatening, thanks your knowledge and experience is very helpful to us as we are new to this situation.

[CatsAreTops in reply to Pungo68]

The dialysis clinic should arrange all this for you. Ask them if they don’t offer. It’s so important.

[Pungo68 in reply to CatsAreTops]

Thank you I asked about it today, they said they may refer him. Today they were able to do dialysis.

[Beachgirl32]

oh I’m surprised the dialysis center didn’t send him over to the hospital . Define,y talk to the vascular surgeon they may have to put in an emergency chest port . My fistula never work try a graft something happen during my surgery no go on that I had the emergency chest port since June

[Pungo68 in reply to Beachgirl32]

oh my goodness I hope you are okay. My husband refuses to let them send him to the emergency room so they just call me to come get him, we live 8 minutes from the dialysis center. Since he was only able to get dialysis on Monday, if they can’t do dialysis tomorrow morning I will have to take him to the emergency room. Thanks for the advice and information on the emergency port. This may be his only option. They started using his fistula 3 weeks ago, it worked fine, now in his 4th week his arm is swelling up and bleeding. Your response is very helpful.

[Pungo68]

oh my goodness I hope you are okay. My husband refuses to let them send him to the emergency room so they just call me to come get him, we live 8 minutes from the dialysis center. Since he was only able to get dialysis on Monday, if they can’t do dialysis tomorrow morning I will have to take him to the emergency room. Thanks for the advice and information on the emergency port. This may be his only option. They started using his fistula 3 weeks ago, it worked fine, now in his 4th week his arm is swelling up and bleeding. Your response is very helpful.

[StillVertical]

a new fistula takes months to fully develop. Do Which means the width of your supervein is tiny. Every time you dialyze the super vein gets bigger and easier to use. So any small miss the needle drags the vein wall or worst they infiltrated. This means need sent in and supervein.

also the can go a fistulagram with balloons of certain size and they widen the access. Beware get put under not just a local it’s quite painful if all they use is lidocaine.

That happens if a tech doesn’t know your arm yet. You arm will swell like a football and most likely have to wait a day for for the swelling to go done.

Be patient it will grow with use. Tell them to try a 17 gauge at first then 16. Fight starting you on a 15 or 14, they will catch the internal wall every time.

Got them to make mine perfect, after creation itvdhorty logged. So the teamed via baloons 3 other times.

[Pungo68 in reply to StillVertical]

Thank you for responding, it’s good to know it will grow in time. Today the lead person was able to get the dialysis done. We talked about maybe referring him back to the vascular surgeon to look at the fistula. The lead tech said exactly what you said the width is small.

[bubbaboo2]

I am so sad for your husbands trouble's. I had a fistula when I was in dialysis in 1994, mine always worked well but my second time around in 2020 I had a chest cathedar put in and had about 5 new ones on and off. I refused to get another fistula , I spent about 6 years total on dialysis and it was so very hard on my body. But what worries me is if his fistula doesn't work he cannot be skipping having his blood cleaned or he could get very sick and even die. You or he need to talk to your nephroligst and make changes so he can have a better dialysis experience. I had a lot of issues with staff because they we not in the situation so please get someone to really listen to your cry for help , your husband cannot live with out his blood being cleaned 3 times per week. God bless you both and my prayers are with you 100%.

Bubbaboo 6 years of dialysis and 2 transplants🐾🐾🐾🐾🐾🐾🐾

[Pungo68 in reply to bubbaboo2]

Thank you for your response, so sorry you had to go through that. Good news today is that they were able to use the fistula and complete his 3 hour dialysis. Unfortunately the experience tech who did the dialysis is leaving, today was her last day. They explained to me today that the fistula vein is small so sometimes the needle may hit the wall of the vein causing it to burst with swelling and bleeding. With time and maturity of the fistula it will get better. We are going to try and get an appointment with the vascular specialist. Thank you again for taking your time to reply, it helps to hear from experience people. Did you have a transplant? Asking because my husband has an evaluation with a transplant program team in March.

[Betnir]

fistula

[Betnir]

my first fistula couldn’t be used because it was in too deep. Luckily my central line was still in place so they went back to using my CVC. Back too the drawing board. The second fistula us put in .. much more longer and very much more painful when it was , as they say, ripening’. Another six week wait then back to using the ‘new and improved’ fistula.’

I was surprised you didn’t still have your central line in just Incase your fistula was a ‘No go’

[Pungo68 in reply to Betnir]

By central line is that the same as a catheter? They left his catheter in for 2 weeks while using the new fistula then decided it was okay, so vascular removed the catheter. It was after the catheter was removed that the fistula started having issues. Today vascular did a fistula gram to identify the problem, they did a balloon procedure to widen the vein. Thank you for your response, I hope all is going well for you.

[Betnir]

Yes the catheter and CVC are one and the same. Your dialysis center did the correct thing to wait to discontinue the catheter until they were certain the fistula was functioning. I myself had one balloon procedure and two stents put in my fistula to keep it open. I go next week yet again to check out the fistula’s flow. It’s an ongoing process.