Greetings to all. This is my first time on website. Posts I have read so far have been enlightening. Quick overview of my story as follows: I was under renal doc for years who seemed to be in ignore mode regarding my kidney function. Creatinine, BUN, and GFR (all indicators to monitor kidney function) had progressively reached critical stage by Feb 2024. My Endocrinology NP couldn't believe Renal doc had not recommended dialysis with a GFR of 7 and critical Hemoglobin drop. Within two days of Endocrinology visit I was in ER in Renal and Respiratory failure. Fortunately I was seen by another doc in the same practice and it was understandable that there would be no more "care" from original doc. New doc was a life saver. I had a chest port placed while in hospital May 2024. Left wrist Fistula June, unsuccessful Fistulagram Oct 2024. Vein did not mature in width. Second Fistula in left upper arm Nov 2024. Within week of surgery hand numb and cold. Second opinion emergency followup and ultrasound revealed blocked blood flow to hand. I was diagnosed with Steal Syndrome. Immediate surgical ligation performed to divert fistula and restore blood flow to hand. Hand saved but still minimal feeling. Now you're up to speed on my story. Coming up on a year with dialysis using original chest catheter. Docs aren't pushing for me to have another fistula try at this time. I'm wondering what are other's experiences with Steal Syndrome and/or long term use of catheter for dialysis? Thank you in advance.
TennKid55: Greetings to all. This is my... - Kidney Dialysis
TennKid55
Taterpig...what a name. Just remember, some one has to graduate last in their med class. So sorry you have been through a lot. Hope it goes better from now on.
Hope my name gave you a chuckle.😀 You're right about there being a lower rung in med classes. I'm a firm believer in that obstacles can strengthen your resilience and make you stronger. Thank you for the positive vibes. Same to you, as well.
Hi. I have had my transplant for many years now, but back when my kidneys were failing, I was resisting getting getting my fistula put in. I finally got it in my left arm. Right after that my kidneys failed The fistula really had not had enough time to mature properly, and so it only worked or about a year. They then put a graft in the same arm. I went home and almost immediately my hand went numb and was incredibly painful if I touched anything. I went back to see the surgeon the next day. When I tried to get up on the exam table, my hand touched the table and my scream must have been heard a mile away. They just rushed me into surgery and tied off the graft. It was cutting off the circulation to my hand. I never knew it was called Steal Syndrome until now. So then they put in a chest catheter. They were not happy because they said it was not great for the heart, but they had no alternative. Luckily, less than a year later a very good match came up for me and I received my transplant.
i’m got another doctor. I had not had luck with fistula got it out in in September never work. So they wanted me to try a graft it was scheduled for January . Didn’t happen during surgery my heart went in a weird sinus rhythm after anesthesia. So I been using my chest port since June 2024 I was doing pd dialysis had to change to hemo . They don’t like you keeping chest port in cause more chance of infection . I haven’t had any infection been blessed there . Reading your story it another thing for me to look out for if I ever get a graft I never heard of that before steal syndrome so thank for educating me I have learn a lot from others on this site right now I’m like why can’t I just keep the chest catheter doc like it not safe but he know if it 1 in a million on something I am going to be that one
My husband was also placed on emergency dialysis with a chest cath some years ago. It's a very wild ride to say the least. His eGFR was 6, Creatinine was 8, and BUN was 114 at the time. He kept the chest cath for a while and, because it's placed close to the heart where infections and embolisms can happen, he was shifted to PD with a lower abdomen cath. Throughout his dialysis experience, my husband never had any infections and so on with either procedure. He did have a situation where he needed to see a vascular surgeon for a leak in the chest cath. If possible, try to hop on the transplant list. One can start that process when eGFR is 20 or below. Some that start that process early can skip dialysis completely. However, my husband made sure to get on the transplant list while on dialysis and completed all the steps within 3 months. (My husband, a diabetic, was 70 at the time, so seniors can qualify too.) He received his transplant within the year - he accepted the offer of a less-than-perfect kidney and it's performing nicely. Your first doctor really dropped the ball. I see that things are going quite well for you right now. May you have many good years ahead of you!
You deserve a break now. Good luck with any new procedures. Sorry I can't help with any of your problems, but you made me more aware of how important it is to keep advocating for ourselves.
Welcome here!
Sorry to hear about your experience, hope things will be better from now on. Getting a fistula is better for long term, catheter will create problems with infection etc. over a period of time. I have been on dialysis for more than 12 years. You can read about my experience here which might help you with answers. medium.com/12-years-and-cou...
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