(WARNING: MEDICALLY GRAPHIC CONTENT)
When your body consumes food and water, whatever it no longer needs comes out through urine and bowel movement. The kidneys create urine which consists of excess electrolytes such potassium, sodium, phosphate and more. Dialysis treatment is utilized when the kidneys fail to have the ability to create enough urine to release from naturally occurring wastes and toxins from the body. When one has to do dialysis treatment, there are a many ways in which it can be done, however for the purpose of this article, the focus will be on hemodialysis.
Hemodialysis is a method in which these excess toxins in the body are removed from the blood. It can be done at home or in a dialysis center through a dialysis machine. Most dialysis patients who go in-center go 3 times a week (Mon, Wed, Fri or Tues, Thurs, Sat). There are 3 ways a patient can get hemodialysis:
Catheter: In the US, many individuals start with a catheter (sometimes called permcath) on the upper right side of the chest. It has a line that goes directly to the heart. Despite its name, it is meant to be a short-term solution or for those who may regain kidney function within time or to switch over to a long-term form of dialysis.
Graft: A stent is put into a vein, normally in the upper, non-dominant arm of the patient. This is to keep the vein wide enough so that it can handle the fast flow of blood from the dialysis machine.
Arterial/Venous Fistula (aka A/V Fistula): A surgery done to connect an arterial and venous vein together in order to create a strong fast flow to handle the strong blood flow through the dialysis machine. This is normally done on the strongest vein area on your non-dominant arm.
There are complications for each form of dialysis. For example with hemodialysis you can risk having blood clots in the A/V fistula/catheter. This can be due to the blood flow being too slow or other reasons. An A/V fistula can also grow too big or even infiltrate during needle sticks (needle goes through vein into outer tissue) which can cause bruising and excessive pain.
The focus of this post will be on how I had to deal with the complication of an A/V Fistula which was that it grew way too big.
THE FOLLOWING STORY CONTAINS PICS WITH MEDICALLY GRAPHIC CONTENT
Putting in the A/V Fistula (History)
Before I was ready to leave the hospital after the diagnosis of End Stage Renal Disease, the doctors asked me if I’d like to get the A/V Fistula surgery. To be honest, I wish I had known all about it. I admit the team I have worked with does not truly educate you unless you are like me and ask tons of questions. However, at the time, I was so drugged up and I had so many instances of crying to release built up emotions that even though it may have seemed I was cool and alert that day I really didn’t KNOW KNOW much besides what the doctors told me. They said it is a stronger and longer-term form of getting good dialysis treatments. Since I had accepted the diagnosis, I agreed to it.
They proceeded to put a plastic band on my arm making sure nurses and other staff don’t check my blood pressure on that arm. This is to ensure the veins, arteries and capillaries are not stressed out or broken so that the surgeon can perform the surgery correctly.
The day I was to go in for the surgery was quite interesting. Minutes before I was to be taken to the Operating Room (OR) waiting room there were two young doctors going back and forth arguing in my presence amongst each other as to what type of surgery it was. I was laying there like what the hell, y’all don’t even know?! At the time I was so sick and low in energy I really couldn’t tell them to just shut up and go someplace else and argue until you know what the hell is going on. Talk about a lack of bedside manner! Who needs that type of negativity when in a state of illness?!
Later on, as I was in the OR Waiting. I got to meet the surgeon. He was real cool and very understanding about me being nervous for surgery. We spoke a bit as he felt my arm for a good vein to do the surgery. By the end of the day, the surgery was complete and after a few more days of healing from other aspects of my condition I was free to go home.
Complication Resulting In A/V Fistula Reduction
After getting the fistula installed, the nephrologist (kidney doctor), nurses and dialysis technicians tell you to exercise your hand so that the fistula will grow. Usually an exercise involves repeatedly squeezing something in your hand to help increase the blood flow. The unusual thing with me is that I hardly did the exercises. The blood flow was so strong, even when you could barely see it and when the nephrologist put his stethoscope on it to listen, he would constantly be surprised at how good the flow is.
When I tell you this thing grew, it GREW. Not only did it grow because of the strong blood flow in my body but the constant needle sticks in certain areas on it. Within about 2-3yrs I started noticing that the fistula grew all the way up to my collar bone despite never being stuck more than a few inches above the surgical incision site. I have never seen that on anyone. I would try to follow the path of the fistula with my finger and I would give up because not only would it grow upward, but it would zig zag and dip. I would joke that it has hills and valleys.
Around 5 years I noticed that the skin was beginning to get too thin. I would be covering it with gauze even on off days (non-dialysis days). It got really bad within the year prior and I noticed it was getting harder to heal between needle sticks.
Pre-Surgery Discussing Options
About 6 years, after the initial surgery, I finally had the charge nurse (Nurse in charge of dialysis techs and patients in clinic) make my appointment to meet with the same surgeon who put the A/V fistula in to discuss how it was going to be done. I asked every question that I could think of while discussing my options with the surgeon. I told him how I wanted it to be cut and look when the procedure was done. I didn’t feel comfortable with his suggestion of a stent to be put in where the vein was narrowing by my collarbone to keep it open. I honestly don’t like things in me. So he said he will try to put a balloon in that area and widen it to encourage it to stay open during the surgery in hopes it will stay like that after. This is called an angioplasty. I really appreciate how he was cool and open to what I want because I like to be educated in what’s going on. The only thing I did not know was that an incision would be made close to the armpit on the inside of my arm (shown in photos below) if the vein did not stay open. I wish he mentioned that as I like to know EVERYTHING so I was disappointed about that.
Night Before Surgery
Basic instructions prior to having surgery was not to eat/drink after midnight. You know damn well I ate and drink until the last minute. I was supposed to get a call the day before to know the exact time for my surgery, according to them. I never got the call.
I had to make sure to take a shower using antibacterial soap. They also ask you to not put lotion/deodorant on ANYWHERE. For those of us with darker skin, no lotion/oils/butters after bathing is an absolute no-no because you can see when the skin is dry/ashy. Lol I hated it but it wasn’t so bad as long as I went straight to the Pre-Operation waiting room. The reason being is just to ensure that you are clean and free of any chemicals that may interfere with and get directly into places they must do incision.
I got into the room where there were a bunch of privacy curtains and a tray table with my folder and an I/V (Intravenous port) ready. A package with the gown, pants, bonnet and socks was on the bed for me to change into. A bag with my name and DOB sticker with “Patient Belongings” was available. I needed 2 because I had so much with me, of course. lol
Whenever I’ve been in a setting like this, I like to crack jokes and have fun with the nurses, doctors, surgeons and attendants who deal with me. I’m sure they see so many sad things, it’s good to make them smile or laugh to brighten their day.
One of the assistants came in and marked my arm with “yes” and his initials and then placed a red band with the words “RESTRICTED EXTREMITY” in black on it.
When the anesthesiologist came in to introduce himself, I, of course, expressed my concerns of nervousness despite going through 2 surgeries prior but it’s been so long since the last one. He was real cool and discussed his years of experience. He had a very positive demeanor and energy about him.
The surgeon was a bit late so I didn’t get to see him until I was in the OR. I crawled onto the operating table and I had seen the arm rest was already pulled out for me. Tools, prepared, etc. All the assistants got me prepared. They put on these intermittent pneumatic compression device on my lower legs so that it helps to keep the blood flow to prevent any blood clotting (I think that’s standard procedure for most going through surgery). They fill with air and gently squeeze your legs every few seconds. It felt like a massage to me. I was kind of surprised when they strapped my legs down because I didn’t remember that with surgeries before. I was also given a blanket with a fan attached at the foot that kept me warm.
The anesthesiologist, knowing I was a bit nervous, asked me to think of a good dream/vision. He asked, “You don’t have to tell me but do you have one?”
I chuckled, “Yes, I do,”
“Are you sure?”
“Good! Ok, I’m attaching the lines now. Put your hands in a comfortable position,”
The anesthesia lines were attached to the I/V and I recall the medicine going in. It felt like a tiny pinch but it was mostly a little cool. That was the last thing I remember.
I woke up in the recovery room and looked straight ahead across the room at the black rectangle digital clock. It read a few minutes after 1:00pm. I done woke up about 4 hours later. I looked down at my arm with its coverings and said, “WOW, my arm looks like it’s normal size again!”. Then I called for the vomit pan and here came the nurse running. She quickly asked if I wanted water or ginger ale. I asked for ginger ale because I haven’t eaten in over 12 hours and I needed some sort of calories since I was running on E. She also gave me the most amount of Tylenol ever had in order to pre-combat any pain I may feel. I drank the ginger ale and ended up falling back asleep for another 2 hours in the recovery room. Surgery truly makes many people groggy.
Honestly, I had watched videos of the A/V fistula reduction procedure online. I thought it was going to take less than an hour. However, because my fistula was so BIG and had such a strong pulse and blood flow, the entire procedure had to be extra carefully done. Apparently, it was a lot of work.
Removal of Bandages
I had expected to be glued up, considering the experiences of others I’ve known; however, I got the Steri-Strips. They are basically attached to one part of the skin and the skin is folded over to the other side of the incision. When I first took off the strips, I was disgusted at how it looked. The site of incision had edges that were puffy and the scabs seemed to be sticking out underneath them.
One Month Later
A while after removing the Steri-Strips the scabs fell off and within a little over 24 hours my skin fused like nothing ever happened. There was only a faint line of the incision site.
To be honest, I am amazed at how well my arm has healed. I am really happy at how it turned out. If you notice I was not given a temporary catheter as what was considered a possibility if there was no place to get treatment through the arm until it healed. This is because the fistula was so big that there was even more highly developed vein to use.
I still had some slight numbing of the thumb and pointer finger a month later after the surgery. I have been told you can regain feeling within a few weeks after surgery up to as long as 6 months later. I also had numbness in some areas where incision was made close to the armpit which was mainly noticeable when washing or touching the area only. I also experienced extreme hot and cold sensations for about 2 weeks until everything healed. It was highly uncomfortable during that time.
A year after the surgery I got about 90% feeling back in my pointer finger. There’s slight numbness in the “pit” of my arm. The fistula still grows with the needle sticks. For some people it doesn’t grow and there can be more complications of not being able to get proper sticks, however, all is well. Still strong, healthy and doing great!