What a year it has been!
[Please note: I am going to honestly write about my health issues from the past year. There may be graphic descriptions and pictures of my wounds and issues of being bedridden. I am laying it all out there. Also this post it a long one, they won't all be this long.]
Last spring (2022) I started having bouts of not feeling well. The first time or two I thought it was a stomach bug. But it kept happening, I went to urgent care in June 2022, they told me it was gastritis. In mid July I had a really bad incident, lots of abdominal pain and nausea. I had my husband take me to the ER. Spent three days in the hospital. Lots of tests and observation. I was told that I had a hernia that needed to be repaired. We started the process of pre-surgery testing and preparations.
AUGUST 14 - SEPTEMBER 13, 2022
On the evening of August 14, 2022, I had a serve attack of abdominal pain and nausea. I called the surgeon, he told me to go to the hospital. I was admitted through the ER. I don't remember much of what happened after that. But my bowel had perforated (caused by the hernia). I needed emergency surgery. Well that led to me being on a ventilator for a bit and between August 14 and September 11, I had 11 surgeries to clean the toxins from my abdominal cavity. A wound vac was placed over the gapping wound in my abdomen. All of this took place at Crozer Chester Medical Center, where I stayed until I was transferred to Kindred Havertown on 9/13/2022.
SEPTEMBER 13 - OCTOBER 6, 2022
Kindred Havertown was a nightmare experience. I was 100% bedridden. I could not do anything for myself. They were so short staffed that I definitely felt like it adversely affected my road to recovery. I was supposed to be getting rehab in addition to the wound care. I received no therapy until the last few days I was there and that pretty much getting me out of bed and into a chair. I couldn't even stand up with out assistance. I was connected to a catheter type system and had to use a bed pan. I was nauseous all of the time. I was left to lay in in my own urine more than once when no one responded to my calls. My mother was asked to leave at least twice for trying to insist that I got care that I needed. I was so happy when I was told that I would be moved to a more aggressive rehab facility.
OCTOBER 6 - OCTOBER 11, 2022
On October 6th I was transferred to Taylor Rehab. When I got there I found out that there was a rise in COVID cases and I was not allowed to have any visitors. It was horrible. I had to do all therapy in my room. I continued to be nauseous all of the time. Despite the nausea I still had to do three hours of rehab a day. It was HARD but the therapists really pushed me. It was also lonely. I had pretty much lost my voice due to being intubated so many times for all of the surgeries so talking on the phone was out of the question and I was not allowed any visitors. It was very lonely. Just as I was getting into the swing of things I was transferred back to Crozer for another surgery.
OCTOBER 11 - OCTOBER 14, 2022
I arrived back at Crozer to get a skin graft to cover the large hole that used to be my abdomen. The surgeon took skin from my leg and put it on my abdomen. My leg hurt more than the abdomen from this surgery. After a few days I went back to Taylor rehab.
OCTOBER 14 - OCTOBER 28, 2022
I arrived back at Taylor rehab still with a wound vac attached. Still nauseous all of the time. But back to therapy. I slowly was able to get up on my own using a walker. Walk short distances using the walker. COVID was still an issue so all of my therapy still took place in my room. I gradually got a little stronger. Once I was able to walk 50 feet and go up a few steps my discharge planning started. They even had a fake car to teach me how to get in and out of a car during my recovery. On October 28th I was finally able to go home. I was so excited to go home after 76 days.
HOME AT LAST!
When we pulled up to the house I was able to get out of the truck without issue, slowly made my way to the front door. I stepped up onto the patio with some assistance from my husband. Problem came when I wanted to get into the front door. The step into the front door is higher than normal (my house is old and a bit wonky in places with things not being "standard"). I ended up calling the local police for assistance. An officer arrived and very graciously help my husband get me inside. ( A great big thank you to Officer Daly of the Norwood police department).
It was so nice to be home but also much harder than I expected it to be. I had a LONG LONG way to recovery. My mother came every day to watch over me while my husband was at work. I continued to feel nauseous constantly. I needed a wheelchair to get to doctor's appointments, so we enlisted my brother who helped me to appointments. I had a visiting nurse, physical therapist, and occupational therapist. I gradually got a little stronger. But the nausea persisted until it go so bad I couldn't keep anything down. My mother came over on December 1st, as usual, and I couldn't even get out of bed so she called the ambulance and back to Crozer I went. I was praying it wasn't anything to do with my surgery and it wasn't!
DECEMBER 1 - DECEMBER 3, 2022
I arrived at Crozer's ER by ambulance. They sent me for a CAT scan and nothing showed on it, but the blood work showed I had elevated levels of something that indicated that my pancreas was irritated. So I spent the next three days back at Crozer on IV's staying hydrated while having nothing to eat or drink by mouth. After three days they had me try food to see if I could keep it down, I was able to so they let me go home.
HOME AGAIN!
Once I returned home the nausea lessened and eventually went away enough that I started to feel pretty good. I still was homebound except for doctor's appointments. On December 1st, my employer of 26.5 years let me go because I had exceeded their 16 week leave policy. On January 1st I would have no insurance and had to start the process of getting added to my husband's insurance. What should have been a simple task took numerous phone calls, emails, many tears and much frustration and SIX weeks!! Ugh what a nightmare. My doctor's appointments continued. I learned that the skin graft was temporary (I didn't know that) and that I would need one more surgery to repair my abdomen which was basically being held together by the skin graft. This would take months because my skin had to be a certain way and my insurance issues slowed the process down. Finally in May my surgery was scheduled for July 11, 2023.
During this time I got stronger. I was no where near my pre-illness self, but I could get around outside using a cane. I could drive locally. I felt fairly well, considering what I have been going through.
JULY 11 - JULY 22, 2023
I went into Crozer the early morning of July 11th for my (hopefully) final surgery. The plan was to repair the massive hernia created from previous surgeries by making sure my intestines were where they belonged then stretching the muscles back together, then remove extra skin and put me all back together on the outside too.
The surgery was quite complicated and long! 8 1/2 hours long!! I was kept on a ventilator for a few days and had some issues coming off of it. At one point they thought I may have had a heart attack or a blood clot but luckily neither one actually happened. I did have a small amount of fluid in my lungs. I spent 12 days in the hospital this time. It would have been longer with a short stay at an in patient rehab but I really fought to go home. I was feeling pretty good all things considered, and I was not mentally able to deal with much more. I was able to stand and walk with the walker, I could eat, I was basically just laying in bed at the hospital and being stuck for blood daily. I wanted to go home and I pushed and pushed until the doctor reluctantly agreed. A blood oxygen level issue came up right when they were starting the discharge process, My pulse ox was in the low 90's and when I moved around it dipped into the upper 80's (it should be in the upper 90's). So they did a blood gas test, which consists of a tech taking blood directly from an artery in your wrist. To say it is not pleasant is an understatement. After all I have been through I can honestly say I have a pretty high tolerance for pain and discomfort. Three people came with an ultra sound machine to find my artery. I knew one was a Resident and the other two I found out were students. It took them SIX yes SIX tries to get the blood. I was in tears by the time they were done. Once would have been unpleasant but bearable but six times took me down hard.
My blood gas test results showed low oxygenation in my body. I had a pulmonologist come in to see me. He didn't seem that concerned. They had me use my spirometer every 10 - 15 minutes to increase my lung capacity. The very bottom of my lungs were not inflating fully. I had something called ATELECTASIS where basically the bottom lobe of my lung was not inflating fully. They didn't want to let me go home without oxygen. The crazy thing is they didn't have me on oxygen anymore in the hospital. So finally late afternoon on Saturday, July 22nd I got to go home.
The first night home I thought maybe I made a mistake coming home, but buy I managed. Since then I have been getting along okay. I have a visiting nurse that comes once a week to check on my and PT comes 2x a week to give me simple exercises to start building up my strength.
Since I have been home I have been out to two doctors appointments. First was to the plastic surgeon who thankfully removed the last two drains (they are the worst!). Then yesterday I went to see my primary surgeon. Both think everything looks good. I go back to the plastic surgeon next week and follow up with my primary surgeon the first week of September.
These are pictures of my incisions. The horizontal one runs from the back side of my hip to the other side and then the vertical one runs straight up to under my breasts. I have lost a significant amount of weight in the past year. At this point since the spring of 2022 when I first started having symptoms I have probably lost 100 pounds. I needed to lose weight but I wouldn't recommend almost dying twice to do it!! Hopefully as I gradually get stronger and can do more intensive rehab some of the skin will tighten up as I rebuild muscles.
So that is the story of the last year of my life and almost 100 days in the hospital and inpatient rehab. In future posts, I will talk about some of the lessons learned during this year of medical issues and hospitalizations.
Stay well,
Kelly
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