January 13th, after 5 days in the hospital, while awaiting my new elbow components, my poor body had had enough! Early in the morning my IV began to really hurt – it hadn’t been moved since first placed on the 9th. My nurse had a terrible time finding a new vein that would cooperate — after two or three tries she found a spot that finally succumbed. I’m pretty used to this as I have very small veins, but it still hurts a lot. This episode would set the stage for what would be the most difficult day of my life…
The young phlebotomists came next for my morning blood draw. Once again, my veins were playing hide-and-seek. Every time they found a potential candidate, the vein would collapse, this went on for a while, until finally, maybe after 3 or 4 tries, my body finally agreed to play nice. By this time I was in tears, partly from the physical pain, but mostly from the emotional pain.
Pressure Sores
In the late afternoon, my splint/bandages began to pinch, hurt, and itch. I gently pushed aside a couple of layers and to my horror, this is what I saw…
… I slowly peeled back a few more layers… I was horrified. I called the nurse and showed her what I discovered and demanded she call my doctor. She called the orthopedic resident on staff — who of course was nowhere to be found — after he/she didn’t answer the call for what seemed like hours, I asked her to call MY residents who were part of my surgical team; of course they were in surgery!
Around 7PM my two residents finally appear. After showing them what I discovered, Dr. F began documenting on the computer, while Dr. L, who seemed annoyed and unmoved by my situation, took a closer look. He said they just looked like swelling/ pressure sores — basically no big deal. I told him it was really bothering me and uncomfortable and asked if they could please loosen the bandages — after all I was going into surgery the next morning. He quickly pulled out his cutting shears, cut through the top of the bandages and then ripped them apart in such a manner that I screamed in pain. No apology, no nothing… Dr. F came over, carefully took a look and seemed genuinely concerned about what he saw. They finished up the documentation, took a few pictures, and just left. They didn’t bother to put a clean dressing on or wrap my arm back up — they just left.
I sat there in disbelief about what had just happened; tears running down my cheeks, anger and sorrow in my heart. After a few minutes I worked up the courage to slowly pull all the torn, shredded pieces of dressing and bandages off my bloody arm and saw the full extent of the damage…
Pressure Sores
As I lie in the hospital bed, waiting for morning to come, the day of my second surgery, I started thinking about everything – everything this stupid disease has taken from me — all the things I could never do — and would not ever be able to do in the future — knowing full well that things will only progress and I will probably die young from some related heart issue. People with RA have a higher incidence of inflammation around the heart and typically die about 5 years earlier than their peers. When I was younger and more stupid, I asked a psychic how old I would live. 54 was her answer. I know it’s foolish to believe her, but who knows… it’s been in the back of my mind ever since. There are days I welcome the thought. When you live with a chronic disease all your life, your view on living and dying are very different than most. I recently read a quote from a lady in my situation, she said, “I’m not afraid of dying, I’m afraid of getting older.” I couldn’t have said it any better.
January 14 finally arrived and the poor phlebotomists arrive to take my blood early in the morning. I took one look and said vehemently, “NO!” I must of scared them, by the look in their eyes, I felt bad and explained that my veins had collapsed the day before and I’m barely hanging on here by a thread, and unless they ABSOLUTELY NEED MY BLOOD, THEY ARE NOT GETTING A DROP! They double-checked the order, confirmed it with the nurse and left!
A few hours later, it was surgery time. By now, my husband had come and joined me. I filled him in on the trials of the day and he felt horrible and wanted to kill Dr. L (me too!). While I was getting ready to head off to the pre-op room, the pre-op nurse, comes barreling in, exclaiming that I need a pregnancy test! My nurse was there as well, getting all the pre-op documentation done on the computer, I’d surmised. By this point, I had had enough, was so lethargic, and depressed, that I basically ignored her, muttered underneath my breath that I wasn’t pregnant and headed off to pee one more time. She comes to help me and I’m like, Bitch Please I’ve been doing this 10 times a day since I got here, all by myself, I DO NOT need or want your help!!! She kept insisting. I finally broke and yelled, “I am not pregnant! I am 50 years old and had a tubal 20 fucking years ago!” This time I didn’t feel bad — I’d had enough incompetence for the day — week — month — year to last a lifetime!!! My nurse came to my rescue and the two of them got into it – I must admit, as I sat pissing on the toilet – I small smile came across my face!
As I was in the bathroom – the two porters came to take me down to the pre-op. As you can imagine, I was in NO MOOD for jokes or humor. One of the guys kept trying to make me smile or laugh, I know his heart was in the right place, I just wasn’t having any of it! I wanted to punch him in the face as we boarded the elevator. You could tell the other guy could “read the room” and knew I was NOT happy. They delivered me to the pre-op room. My “lovely” nurse joined us. I apologized for biting her head off as did she. It was probably late morning/early afternoon by now and of course, by surgery was delayed. My OR was busy and my surgeon was at a different hospital finishing up surgery with another patient. So, we waited for a while. It was a nice breather after all the chaos.
An hour or so later, the pre-op stuff begins. Once again, the short respite flew out the window— My IV had stopped working properly and needed to be replaced, again, for surgery. The nurse tried without success, a few times. The anesthesiologist resident tried, unsuccessfully, a couple times. The chief anesthesiologist – who was in my first surgery was standing at the end of the gurney – I was staring into his eyes as the pokes continued – tears now streaming down my eyes then (as they are now as I relive this), I could see him tear up as well. Even after the ultrasound was called in so they could locate my veins – it wasn’t working. He finally sent the resident away and jumped in – locating a viable vien– eventually. All the while, I was praying for the Lord to just take me! Take me away from this life, from this pain…
By this time, Dr. Wiater had seen the images of the pressure sores. So when he arrived, an hour or so later, during our pre-op consult, he said he wasn’t sure if he could proceed with the surgery as planned; it would depend on what they found once in there — the extent of the skin wounds. I was so “dead” by this time, but I could feel my blood pressure rise as I glared into his eyes; I was speechless. Eventually I agreed to whatever he deemed best. Shortly afterward, as the drugs entered my bloodstream, I was able to find sweet peace…
Hours later, in post-op, I awoke to the most horrific pain — it was as if nothing was getting through or into my veins. I was crying and yelling. The nurse claimed they had given all they could, “I gave you Fentanyl, I gave you Dilaudid, I gave you the strongest stuff we have!” It wasn’t working. It wasn’t until she added Oxy to the cocktail that I began to feel any relief. Eventually, my pain subsided, my blood pressure calmed down and I was able to breath again. Once things were under control, I learned that indeed my elbow had been replaced; the wounds, though nasty, were superficial.
I went home two days later to rest and recuperate from the surgeries; my nightmare– my D-Day– one of the worst weeks of my life — was finally behind me.
This is gonna be a tough one to write about – but hopefully it will be cathartic. Although I’ve shared the details with my family and close friends, it’s still hard to relive it again. Red wine is poured — here we go…
Going into my elbow revision surgery on January 9th I wasn’t too phased or worried, I just wanted it over and done with so I could be back home, recuperate, and get back to life and painting again. Afterall, this would be my 10th surgery related to my arthritis/autoimmune issues– I could practically sail through it in my sleep – or so I thought.
Prior to the 9th my doctor was concerned about an infection being the reason for the loose components, even though I shared with him that I had probably caused it from overuse and lifting over my limit of 10 pounds. I had preliminary blood work done to check for any signs of infection — all cultures came back negative. We had talked about the possibility of a two-part surgery; the first to remove the damaged components while antibiotic spacing beads would secure the arm and the second, a month or so afterward, to place the new components. Needless to say, I was less than thrilled with that idea but agreed that we needed to do what was best. On the day of surgery, he proposed a revised plan.
On the 9th, while in pre-op, Dr. Brett and I discussed the surgical plan. He would remove the components today, place the antibiotic spacers, run more tests to be sure I was infection-free, and if all went well I would have the 2nd surgery in about 5 days. All while I stayed in the hospital. I agreed that this was a much better plan and we proceeded.
The first surgery went well. He was able to remove the components and place the antibiotic beads without trouble. I did learn however, afterward, that the anesthesiologist had a difficult time with my airway. I was not surprised, my neck is severely limited and this wasn’t the first time I’d heard this. I did tell him this fact on the pre-op screen, but it was more difficult than he’d planned. So, now officially I have, “A Difficult Airway” going forward. Just great… Another thing to add to the list…
My surgery was a bit delayed, so by the time I was out of post-op and in my room it was evening. I don’t know if my nurse was new or just bad, or both, but it’s really not the sort of thing you want just after surgery. She kept referring to my “shoulder replacement”, would forget things I asked for, and never seemed to be available when I needed her.
And maybe I’m hypercritical or spoiled because for all my other surgeries at this hospital my stepmother was the well-liked and well-respected CNO (Chief Nurse Officer) for the entire hospital system – I was treated very well! She retired last year and still had many friends, but the hospital had recently gone through many changes. I still had a private room and a few of her friends came to check on me – but it didn’t feel the same this time.
Anyway — besides my first nurse being a complete ditz, the hospital didn’t have my main anti-inflammatory medication on formulary and worse yet, an anti-inflammatory wasn’t even listed on my post-op orders. If you’re not familiar – things move very slowly in a hospital. It took many hours before I had my medicine and at the next shift change — I had to go through it all over again! It wasn’t until a few shifts later that they finally got it right!!
If you have a small bladder like me – make sure you get a catheter or bring your own Depends because it takes the nurse or assistant F-O-R-E-V-E-R to come once you press the Call button– If they come at all!
Here I am, drugged up and being pumped full of giant bags of antibiotics (just in case) and medicine intravenously, I’ve got the “sucky-blowy” anti-blood-clot things on my legs, IV in my left arm, giant heavy splint on my right arm with attached drain port to a machine on the floor, and I have to pee every freaking half hour! It sounds comical now, but believe you me, it was anything but funny at the time. Eventually I got the hang of doing it all by myself — I had to — there was no other option!
The food wasn’t too bad, once they got my order right! For the first 2-3 meals I was sent up a tray that I didn’t even order. And I was starving!! Again – someone screwed up! My order had gotten put in the system twice or something screwy like that – anyway – again, it took forever to get that corrected! And speaking of food and eating – do you know not one person – nurse or assistant – offered to help at least cut up my food? I know it sounds petty, but when you have surgery involving your dominant arm/hand/elbow, wouldn’t you think they would make a note and at least offer to help the patient? Again – I managed to figure it out by myself. Of course my food was always cold and kind of gross by the end – but I managed.
About 3 days after the surgery, the splint/bandage began to really hurt and feel as if my circulation was being cut off around my wrist and hand. A PA on the floor was able to loosen the contraption for me and it felt much better for a while.
Oh, I almost forgot to mention, just so you get the full picture here – I was having full blown awful hot flashes during this time — like every hour out of the blue I would be drenched in sweat. They were able to provide me with a small portable fan that I kept on and I had turned down the room temperature really low just so I could survive. Every time someone came in they’d say the same thing, “It’s freezing in here! Are you O.K.?”
Going a Bit Stir Crazy
Between cat-naps, daily blood draws and Heparin shots, gallons of IV fluids, 5 a.m. doctor rounds, and a gazillion bathroom trips, I eventually fell into a bit of a routine while waiting around for my next surgery. My family and friends visited and would bring me real food and Starbucks and I even wore my own comfortable clothes from home. I caught up on a few movies on my IPad and watched the HBO docu-series Chernobyl. (Outstanding, by the way, if you haven’t seen it, please do!) All my results were coming back negative for infection, as I knew they would, and things were looking good for the second surgery.
Jennefer Chaudhry 