Janette M.

Survivor

Posted on October 5th, 2018

After several years of excruciating pain I simply couldn’t take it anymore. So in August of 2015 I had back surgery to fuse my C3, C4, and C5 vertebrae. The surgery itself was uneventful and I was thrilled to be out of pain. Sadly, within a week I developed an infection at the surgical site. (Sepsis and Surgery) So, back into surgery to have the wound debrided and after that I was hooked up to a wound vac to facilitate healing.

The downside was that I had to transfer to a nursing home/rehab facility because of the wound vac, but I was doing pretty well. Okay, my recovery would take 8 to 10 weeks instead of 6. I didn’t want to be at the rehab center but at the time I thought it was temporary and I could live with that. I had my Kindle, books, needlework and crochet projects with me. My friends and family were visiting. So, I had plenty of things to keep me entertained and busy.

I wasn’t able to take showers because of the wound vac nor could I bend over enough to wash my hair under the tap. A beautician came into the rehab center once a week, on Wednesdays, and I would have my hair done. That particular Wednesday I was feeling a little tired and almost cancelled my appointment but reminded myself that while washing out of the sink was bad enough, going two weeks with dirty hair was worse. So I went.
And that’s the last clear memory I have until I woke up in ICU two-and-a-half weeks later. On my birthday. Happy birthday to me. I was alive.

It would be nearly a year of being shuffled between hospitals and nursing homes with repeated infections before I was able to go home. From there it was still months of therapy and learning how to walk again. My hand therapy is a whole other story.

I have one shred of a memory during my ICU time. It was of two women talking. One was my niece but I didn’t recognize her voice at the time. I only registered the voices were women. They were deciding whether to play the audio book of Jane Eyre, or Pride and Prejudice first. They decided on Pride and Prejudice. Later my niece told me my doctor had suggested they play my favorite music because even though I was in a coma I could hear thing going on around me She told him about my love of audio books and he said that was even better. So Pride and Prejudice got first play.

My family filled me in on what had happened after I regained consciousness and was moved to a regular ward. The story was two and a half weeks of nightmares.

I vaguely remembered talking to my best friend that last Wednesday. She told me later that she had been very worried because I didn’t sound ‘right’. We’ve known each other for 35 years so she has a pretty good take on what is normal for me. My nephew said I’d called him, but I have no memory of that conversation. I also apparently tried to leave the nursing facility and told them I’d had enough of them and I was going home.

My temperature had spiked to 104 and stayed there for three days before it began to drop a little. The sepsis hit me quick and hard. If I had been home I would have died that night. Within hours I was going into organ failure. My kidneys shut down. I coded while they were getting me into the CT machine. It took them over six minutes to restart my heart. I now have heart damage from this. Three years later I still have monthly doctor visits. And no, sorry, I do not have a near-death experience to share.

My doctors couldn’t decide if I had meningitis or sepsis and began treating me with antibiotics. In the meantime I developed blood clots in both my arms. My fingers and toes turned black. There was a 72-hour period when the doctors were deciding whether or not to amputate both my hands. I was on a low impact dialysis after my kidneys failed and I broke out in blisters and huge sores on my body that became infected. Even months after the initial sepsis infection I would still break out in large pus filled sores on my legs. My entire body swelled and my skin peeled for months.

My legs and arms are covered with horrific scars. My hands are a mess. I have extensive nerve damage in my hands and feet. Even though I am a type II diabetic I did not have any neuropathy in my feet before the sepsis infection . I take 300mg of Gabapentin three times a day which barely takes the edge off the burning pain I have in my feet. I can barely stand to have socks on or even shoes. As soon as my feet become warm it triggers the pain which is like a very bad sunburn times ten. It keeps me awake at night and I can’t have the covers on my feet.

A section of the tissue and skin on my left forearm died and turned black. It ran from just below my wrist to just shy of the inside of my elbow and was about two inches wide. The doctors decided it was time to excise that tissue when it hardened and had loosened around the edges. It looked like and was as hard as a piece of asphalt. They did this at my bedside with my arm on a pillow and a couple of shots of lidocaine. The nurse was trying to block my view but I sat up so I could see what was going on. She was about a nanosecond too late in telling me not to look. No one should be able to see that deep into their own body and see bone. If you’re wondering why I looked in the first place it was simply because I was curious and never fainted at the sight of blood. And I was on so many pain killers that it never occurred to me that looking might not be the best idea I ever had.

Almost every day my family received a call from the hospital telling them that something else had happened to me and asking what they should do. Basically the doctors were continually asking my family to let me die. But they wouldn’t. There were many times during my recovery when I wished they had. My family was told by one doctor that he’d never seen a person as sick who was still clinging to life. My family was too stubborn to give up on me, and, apparently so was I.

Just between August 2015 and the end of the year my medical bills came to 1.29 million dollars. God Bless Blue Cross Blue Shield.

Even though I’d regained conciseness and I didn’t appear to have brain damage from days of a high fever, there was still more to come. I had noticed a really strange smell whenever the nurses changed my bedding and cleaned me up. I was bedridden and having dialysis treatments several times a week. Several days after I was in a regular ward the nurse was changing my original surgical site dressing. There was a doctor observing. I was laying on my side, half asleep and very fuzzy on the pain killers but heard him rip into the nurse about why this other sore/wound I had had not been attended to. It was the source of the smell. Back to surgery to excise more dead tissue. It was stage 4 wound and by the time they removed all the dead tissue I was left a hole the size of a grapefruit and visible bone. I required daily dressing changes for all my wounds. That usually took about 2.5 hours. They packed the wound with some grey foam material that looked a lot like weather stripping. Then secured that with Tegaderm which pretty much looks like clear contact paper. Now I’m hooked up to three wound vacs (two for my back and one for my arm) and various other lines.
After that I was transferred to a hospital that specialized in wound care and was there for two months. I had a special air mattress because of the sacrum wound. I was required to lay on my side. I wasn’t eating much so they inserted a feeding tube in my stomach to get more protein into my diet . This was all done to help facilitate the healing process on my sacrum wound. The enormity of how my life had changed and what my new ‘normal’ was began to sink in. So did the realization of the extent of the damage to my hands. I It was not a good time. I sank into a severe clinical depression.

If my family was visiting, many of the doctors would talk to them and over me as if I was not in the room. One just stood in the doorway and said I’d never work again. Another said I ‘d always have the feeding tube. I was told many times that I would stay on dialysis.

I was on complete bed rest because my sacrum wound was so close to my rectum the doctors were afraid I’d tear my rectum if I moved around too much. By this time my kidneys had started working again and now I was on a catheter which I would have for 14 months along with repeated UTIs. I’m still dealing with issues from that.

That stage four wound took two years to close. Mostly. I still have a hole about the width of a Q-tip stick. The skin has scarred on walls of the wound and that’s why it stays open. My wound doctor wanted me to have another surgery to have that closed. But in the end I did not have it. It would have been rather akin to using a back hoe to pull up a single dandelion. I would have had an horizontal incision across my buttocks and would have been looking at a recovery time of two or three months. If everything went well. I did not want to go through that again. Or expose myself to the possibly of another sepsis infection

My hands are a mess. When I woke up and started taking stock of all my wounds, I was shocked at my hands. My thumbs, index and middle fingers are numb on both my hands. They had also turned black. It’s been three years now and the feeling has not returned. Now the ring fingers of both my hands are beginning to go numb. At the time I could not bend the index finger and thumb of my left hand.

I was devastated by this. I’m a very tactile person and did a lot with my hands. I crocheted (afghans and doilies), embroidered, x-stitched, painted, did ceramics, made jewelry, sewed, and had planned on learning how to quilt. I was a programmer and was a fairly decent typist.

One of the first thing I asked for was hand therapy, but was told the hospital didn’t really provide that and none of the physical therapists I talked to had any suggestions for me. They would have me do some exercises in bed. Stand up next to the bed. But in the hospital that was about it. It wasn’t much better going back to a rehab center. I did a few exercises putting pegs in peg board but it was very basic PT for my hands. I was told by one therapist to just pretend I didn’t have any index fingers. She would also repeatedly chastise me when I was working with upper body strength equipment that I wasn’t gripping correctly with my left hand. This was still after telling her repeatedly that I could not bend my index finger and my thumb on my left hand so was always losing my grip.

It wasn’t until I got home that I finally got the therapists I needed and had three of the most wonderful women!

By the time I got home I couldn’t walk. I’d had the tip of my right index finger amputated. Thankfully I read the consent form before I signed it because they were going to amputate my entire index finger. The middle finger on my right hand had begun curling up and is now frozen at a 45 degree angle. I’d also had 2/3 of the nail excised on that finger because the skin under my nail had turned black. My nail never grew back and I just have a thick hornlike growth about a quarter of an inch long. I feel as if both my hands and half way up my forearms are asleep.

And after all this I lost my job of 17 years. I am currently trying to find something I can do at home because I am losing my long-term disability in January and we’re barely making ends meet now. I don’t care what Equal Opportunity says, realistically, who’s going to hire a 67-year-old woman with obvious handicaps?

Some things have gotten a little better some not. After 2.5 years I’ve started getting out and getting together with friends again. I can bend the index finger and thumb of my left hand. I can get in and out of a seatbelt now, but I still can’t drive because I can’t turn the ignition key. I still have to use the walker and can only go up the stairs one at a time. I can actually cut my food now and feed myself so would be confident going to a restaurant. I print now because I can’t really write anymore. I had to learn how to dress myself again. I still can’t do small buttons and have a hard time with jars. I’m finally able to begin crocheting with yarn. And I can actually tweeze my own eyebrows.

I know there are sepsis survivors who are multiple amputees and would be happy to trade injuries with me. But each person’s story is unique to them and their perception is subjective. I can only tell you I’m on antidepressants now and they’ve helped and my heart goes out to those who have suffered even worse losses. I ‘m just taking it one day at a time.