Updated: Sep 11, 2020
This blog is a collection of my personal writing over the course of two separate paronychia surgeries on my fingers. The date and timestamps are accurate.
8-12 months prior to my first paronychia surgery
November 4, 2019 - Night before surgery #1
1 AM feelings
Tomorrow morning, on the 5th, I’ll be woken up at 4:45 am to get ready to travel by ambulance to the Wang Building at MassGeneral Hospital. I’ll be having surgery on my fingernails to get rid of the hyper-granulation or paronychia. This was caused by the severe contracture of my hands. My fingers pushed into my palms and created a lot of pressure which caused my nails to grow sideways. This procedure will correct the nails indefinitely. Because I’m extremely high risk, they will not be able to give me anesthesia. They are worried my body might not be able to tolerate it, as the risk of a coma is too high. For this reason, I’ll be given a nerve block — otherwise known as a local. I believe I will be awake. I will wear a blindfold because I don’t want to see my fingers open. I am told this will be very painful during AND after the procedure. I will have limited to no hand movements for three weeks. I am worried about this because I don’t want to add to my contracture. I will not be able to participate in any therapy for my hands. Although this procedure will be painful and will be a minor setback, I am still looking forward to it because it’s all for the better. Also, the hyper-granulation is very painful — I’ve had it for over a year now. Ten months ago, I saw a dermatologist who said they would only consider doing the procedure if I was getting better. Obviously, I’m well enough to undergo the procedure now. When you’re going to have surgery, there are always risks. I had to sign a waiver saying that I’m willing to be intubated — specifically, to go through endotracheal intubation. Endotracheal intubation is a procedure by which a tube is inserted through the mouth down into the trachea. This is a big fear of mine. I have been intubated several times, something that I don’t want to experience ever again. My ultimate fear is a tracheotomy. Tracheotomy is a surgical procedure that consists of making an incision (cut) on the anterior aspect (front) of the neck and opening a direct airway through an incision in the trachea (windpipe).
Having had a tracheotomy for an extended period of time in the past, I can tell you from personal experience it is the most awful thing in the world. Not only is it disgusting, but it also makes you lose your voice for an unknown amount of time if ever removed. I have told my doctors to do all life-saving measures in case of an emergency. This obviously includes all forms of intubation and tracheotomies. I have survived through so much and beat impossible odds, I believe I could do it again if I had to, but I would really like to avoid all forms of intubation and tracheotomies. Having experienced being as close as possible to death, I’m pretty sure death can be peaceful. The intubation process is so horrible, I believe it’s probably worse than death. I’m sure everything will go perfectly to plan, but you never know what can happen. I will stay positive and hope for the best. I am ready.
November 5, 2019 - Day of surgery #1
I arrived at MassGeneral Hospital, Wang building, at 7 am. I was put into a pre-op room to wait. I met several nurses and healthcare professionals who all said, “you’re a miracle.” They were amazed by my story and by how much I know about the medical field. While I was waiting, I was very calm and filled with love. I had thoughts of how lucky I am to have so many people who care about me. I even thought about all my previous relationships and how lucky I was to have had those people in my life. Overall I felt very good about going into this procedure. It wasn’t until I was wheeled down the hall to the induction room that I felt nervous. The induction room is where you get the IV inserted by the anesthesiologist, talk about the plan, meet the team, and give consent to the surgeon. To my surprise, they came in with a form I had to verbally agree to, allowing them to give me general anesthesia. In previous months, we had several discussions about how general anesthesia would potentially kill me. I thought to myself, “Oh God, here we go again — another issue.” I immediately said to the surgeon, “We need to call my primary care doctor, or I will not proceed.” I was pretty thrown for a loop and confused because I thought we were only going to do a localized nerve block. We waited for about ten minutes for him to return the call. They explained that they were weighing the risk of painful tourniquets that could lead to death versus aspiration from anesthesia. The surgeon determined the greater risk was having the tourniquets and the local anesthesia not work. My primary care doctor concurred and gave the green light for general anesthesia. So I said, “Okay let’s do it.”
Immediately following, they told me I would have to be intubated. I thought to myself, “Oh fuck, this will suck.” In all of my previous intubations, I was fully awake. I did not realize this was something that could be done while asleep. Once I learned how the intubation plan could be done while unconscious, I was not worried at all. I had a team of over a dozen people in the room. There were surgeons, nurse practitioners, anesthesiologists, and other aides. They really showed me I was in really good hands, and not to worry. Within a blink of an eye, I was asleep.
When I woke up, I was in a different recovery room. I first thought, “Oh my God, I can’t talk again.” Thankfully this only lasted twenty minutes. My second thought was, “Oh my God, my fingers really hurt.” It was a combination of sharp pains and throbbing and what I can only imagine is easily comparable to frostbite. The best way I can explain it: it’s as if you went to the top of Mount Everest and hung out for a few hours while wearing wet gloves. This is how my fingers feel every minute and still do. After they got my pain under control, which they did by injecting me with Diloted, I fell asleep for approximately ten more minutes. Even though the pain was still severe, my voice began to come back. I started to feel more normal. I then glanced at my fingers and noticed they only did seven out of ten. I thought, “WHAT THE FUCK — I’m going to have to do this again?!?!” By giving me general anesthesia, they thought I would be spending the night there, but I obviously woke up very quickly. They called for my transport back to my rehabilitation hospital. On the way back, I had to pee so bad, but because of the general anesthesia, parts of my body were still asleep, I couldn’t even go. When I returned, I still had to pee, but still had no luck. The nurse then scanned me with a bladder scanner, which revealed that I had 861 cc’s of urine in my bladder. My stomach was distended and they immediately brought a straight catheter. Unfortunately, the first one didn’t work. Nor did the second. OR the third. This is extremely painful. They called in a medical supervisor to attempt to place the catheter. On the fourth try, it finally worked. This process is extremely uncomfortable and I can only describe it like fiberglass going through your urethra with razor blades. Relieving myself of the urine, however, was a gigantic relief. 912 cc’s were drained. I thought, “What if they couldn’t get it out of me???” It was a petrifying thought. But my night of fun was not over. After dinner, I felt the urge to go to the bathroom again, but I could only pee a small amount, and I felt like I could like I couldn’t empty my bladder. This went on for about an hour with no real relief. I then decided to call the supervisor back in for another catheter. She said, “Are you sure you need another one? Because you already urinated a lot.” I said, “I’m sure I do. I have at least another 500 in me.” She said, “I don’t think so, but I will scan you anyway, and if it’s above 350 cc’s, we’ll do it.” The scan revealed 671 ccs. I said, “I told you.” She admitted she was wrong and proceeded with the procedure. My bladder drained for a few minutes, and 730 cc’s came out. After all of that, I then needed to compose myself, and go to my zen place. The whole day took a toll on me. I began to reflect on why I was having bladder issues. It was clear to me that it was from the anesthesia. Those drugs put your muscles to sleep. Obviously, your bladder too. I then started to worry about my bowels and what could happen down there. I have yet to feel the need to go. And peeing is still very difficult, but I still manage to get some out. I am also questioning whether I should have waited for the surgical procedure. My hands were just beginning to get a lot better. Now I have limited movement, and I’m worried I’ll lose ground. But they should heal fast. And I will have one problem officially gone. Hopefully, without the nail overgrowth, I will be able to do more with both hands. This recovery process has been a rollercoaster. I may have to sacrifice one area to make sure the other areas improve and then have to work back up. Either way, the decision has been made, and I think it’s the right one. No matter what, I will get better. I realize I have as much time as I need to recover. And there’s no real rush. On Tuesday, September 10th, I will have an appointment with a surgeon to be evaluated and re-bandaged. We will take it from there.
7 days after surgery #1
2 weeks before surgery #2
Residual skin overgrowth
August 5, 2020 - Day of surgery #2
4 AM feelings
I have surgery scheduled for my fingertips on August 6 at 11 AM. I also have an upcoming surgery to lengthen my heel cord on September 15, 2020. Even though I am fairly confident that I will be fine because I seem to prevail no matter what, I am scared and anxious about both procedures. More specifically I am worried about my bladder problem happening again, which was almost as bad as the procedure itself. Last time they did seven fingers, this time they will only need to do five. I have a feeling it will not be as bad the second time around. During the first surgery, they basically sliced the side of my fingers open and then cauterized the nails to make them not dig into the sides of my fingers anymore. This procedure today will not need to cauterize any new nail, it just to correct the residual skin overgrowth.
Moments before surgery #2
I told the anesthesiologist about my bladder issues last time around. Fortunately, my voice has improved 100 fold so I was understood and taken seriously. I proposed that they give me fewer IV fluids this time around. After the IV was placed and I spoke to the team in the induction room, they quickly wheeled me into the operating room. They told me not to worry as they put an oxygen mask over my mouth and told me to breathe deeply. By my fourth breath, my eyes got heavy and I went straight to sleep. Next thing I knew, I woke up and I thought I was in the hallway, I asked the nurse where I was. She replied, “You are at Mass General Hospital.” I thought to myself, “No shit” and asked, “Why am I in the hallway though?” She told me I was not in the hallway, I was in a recovery room. I looked around and I was in a private room but still quite discombobulated. As they were telling me how well I did in the surgery, my fingers began to throb, similar to that frostbite feeling from the first surgery, but not quite as bad. I said to the nurses, “Oh, ouch my fingers hurt!” But before I could ask for Tylenol, I was being injected with Fentanyl into my IV for pain. Not what I wanted, but oh well. I fell asleep for roughly 35 minutes and when I woke up I had to pee. Thankfully, there were no issues this time. They basically told me I was ready to leave the hospital. Unlike any other procedure in the past, I was taken by my wheelchair as opposed to a stretcher. Having my fingers wrapped up in finger socks and feeling like I was a Muppet, I was slightly worried about how I could possibly transfer to the chair without the use of my hands. They help me and we did what is called a stand pivot transfer that was quite easy, believe it or not. Before every surgery, the patient is required to be in nothing by mouth or NPO, this simply means nothing by mouth between midnight and the procedure. This is to prevent aspiration. After I got into my wheelchair, it was about 7 PM. I hadn’t had any food or water for roughly 18 hours. The hospital staff got me whatever food I wanted, which happened to be veggie pizza and coconut water. Normally, I stick to a strict healthy diet but I felt as if I deserved whatever I wanted. I sat outside watching the sunset, drinking my coconut water, and eating my pizza as I waited for my wheelchair van to pick me up and take me back to the rehabilitation hospital. I was in pain but also feeling wicked grateful.
Eyelashes on my fingers
Later that night, I took some Tylenol and got into bed. I was laying down looking at my Muppet-like fingers. I utilize my iPad with my voice and my right hand, about a 50/50 balance between voice and touch. I couldn’t really sit still even though my fingers hurt. Browsing the internet, I decided to send my doctor’s office an e-card.
So many thanks to Dr. Morgan’s office and surgical team! The anesthesiologist, OR nurses, and everybody else involved in my care.
I invite you all to check out my website documenting my very rare recovery. Check out my blogs and subscribe for updates at https://jhaendelrecovery.com!