Hello, I’m Mikan.
Continuing from my previous post, The Struggles of Living with LDS: [Part ① – The Diagnosis], I’d like to share some more experiences that I found particularly challenging.
Since being diagnosed with Loeys-Dietz Syndrome (LDS), I have undergone three surgeries:
- Coil embolization for an aneurysm
- Abdominal aortic aneurysm repair with a synthetic graft
- Aortic root replacement for aortic valve insufficiency
Below, I’ll discuss the difficulties I faced after each surgery.
The Struggles After Coil Embolization
The first surgery I underwent was a coil embolization for a superior gluteal artery aneurysm. (For a detailed account, please see this post.) This procedure is a catheter-based surgery performed under general anesthesia.
What surprised me the most about the coil embolization was the unexpected onset of lower back pain.
After the procedure, I spent a night in the ICU, but my back hurt so much that I couldn’t sleep at all (cue tears). To make matters worse, the patient in the adjacent bed was moving around noisily, which only made it harder to get any rest.
I believe the back pain was likely caused by the position I was in during the procedure.
When I lay on the operating table, I had a slight feeling that my position might not be ideal, but I found it too bothersome to adjust, and I ended up falling asleep in that same position. It seems that this decision contributed to my later back pain (laughs).
For my next surgery, I paid much closer attention to my posture on the operating table. As a result, my back pain was significantly reduced!
While it might feel a bit awkward to adjust your position on the operating table, proper posture can have a big impact on reducing post-operative back pain in the ICU. Please take care of yourselves.
The Struggles After the Synthetic Graft Replacement
My second surgery was to replace an abdominal aortic aneurysm with a synthetic graft. (For a detailed account, please see this post.) This was an open abdominal surgery performed under general anesthesia.
There were two major challenges after the synthetic graft replacement:
1. Incision Site Pain
The most difficult part after surgery was the pain at the incision site. Since open abdominal surgery involves cutting through the abdominal muscles, the pain can be quite intense.
I couldn’t get up by myself to go to the restroom and had to rely on the nurses repeatedly.
The pain was so severe and persistent that I became anxious, thinking, “This pain might never go away.”
When I murmured my worries to a nurse, she encouraged me by saying, “I can already imagine you walking energetically next week, Mikan!” Those words truly lifted my spirits.
Within a few days, with the help of painkillers, I gradually regained the ability to walk.
2. Worsening Constipation
Another difficult issue after surgery was severe constipation. During the surgery, my intestines were temporarily taken out and then put back in, which can impair their normal function.
I’ve always been somewhat prone to constipation, but after the surgery, it became so bad that my abdomen felt completely bloated, and I couldn’t even eat.
I still remember crying out of sheer anxiety over not being able to eat.
Any significant change in your physical condition can exacerbate the mental strain after surgery. When you’re burdened by worry, it affects both your body and your mind.
I was prescribed Daikenchuto and sennosides, and since I was told that walking was important, I mustered the strength to walk around the hospital.
Thanks to the medication and my efforts, things improved by the time I was discharged.
The Struggles After Aortic Root Replacement
My third surgery was an aortic root replacement, where the base of the aorta—one of the major arteries coming out of the heart—was replaced with a synthetic graft. (For detailed accounts, please see [Part I] and Part II.) This surgery involved splitting the chest down the middle, and was performed under general anesthesia with the use of a heart-lung machine.
There were two major challenges with this surgery:
1. Fluid Restriction
The toughest part after surgery was the strict fluid restriction.
While fluid restrictions are common immediately following any surgery, after a cardiac surgery the limits on the amount of water you can drink per day are particularly strict.
After the surgery, I was unbearably thirsty—it was almost indescribable (laughs). Fortunately, while I was in the ICU, I was given some ice. The moment I put the ice in my mouth, it was as if a field of flowers bloomed in my mind in sheer relief (laughs). I was at my wits’ end with thirst, and that ice was a true lifesaver.
I couldn’t swallow it, but even brushing my teeth with it felt refreshing.
By the time I was transferred to a general ward, I was allowed to manage my own fluid intake. I could get up freely, and being permitted about 1000 mL of water a day made a huge difference.
2. Shoulder and Back Pain
The other major challenge was pain. After the heart surgery, I unexpectedly experienced strong pain in my shoulders and back. With the abdominal aneurysm surgery, the intolerable pain was mostly at the wound site for a few days post-operation. However, with the heart surgery, the pain at the incision was almost negligible. Instead, around the fifth day after surgery, I suddenly began experiencing intense pain in my shoulders and back.
According to my doctor, in open chest surgeries, the act of splitting the chest and the prolonged fixed positioning on the operating table inevitably places a strain on the shoulders and back.
For about two weeks after discharge, I had to take Loxonin and use patches to manage the pain, which even worsened with the jostling of a car ride. Although the pain subsided after about two weeks, it flared up again around six months after the surgery. It seems like this is going to be a long-term issue.
I Should Have Done Hair Removal
This isn’t directly related to the surgeries, but it’s about the unwanted hair that keeps growing even during tough times.
I used a home hair removal device to manage hair on my arms and underarms, but I neglected hair removal on my legs and in the VIO area (laughs). I’m now working on getting those areas treated before my next hospitalization!
I’ve undergone three surgeries, and each one presented its own unique challenges. I hope that by sharing my experiences, I can provide some guidance for those who may be facing surgery in the future.
