Posted 11/8/2017 11:14 PM (GMT -7)
I know we've had a discussion already about this past summer, but you are probably the best person to answer these questions.
First, while our situations were kinda similar, it sounds like your bowel was pretty much demolished, where as mine was a slow leak. I think this difference is one reason why our situations differed.
As you know, I had a simple surgery 2 hrs from home, Jun 8th where my throat was to be dilated and the muscles cut. Instead it became an open surgery when the surgeon nicked my spleen and it was removed. According to my friends, I was perfectly fine, even though I ended up being admitted due to the spleen. I joked on the phone and was online. Some point that evening I went into septic shock where it was discovered my bowel had been nicked as well. Due to my connective tissue disorder, 12 surgeries were needed to completely repair the bowel, and my abdomen was finally closed on the 12th one. Multiple friends and family came to visit, including the priest and deacon from my church. I have no recollection of any of this, and didn't really come to until July. I woke to find myself with a trach and completely dependent on the nursing staff for every single need. It's a terrifying and humiliating situation. Plus I was dependent on the vent as well. Apparently I had multiple bouts of sepsis and septic shock-due to bowel leakage. After being in the ICU from June 9th until July 26th I was transferred to a hospital one hour closer to home to wean off the trach. I was able to do this rather quickly, mainly due to being young in the medical world in regards to this situation. Once off the vent I was transferred to my hometown FINALLY and spent a month in an inpatient rehab facility to regain strength. Initially I could take 3 steps with two PTs and a walker. Hours of PT everyday lead to me finally returning home mid September. I was off on some numbers I'd stated earlier,but Nate kept count-109 days.
So, here are the questions. I know each person is different, but you've also gone through a traumatic surgery and recovery, so you might have some insight. If not, no biggie, I'm just looking for someone whose experienced something remotely similar. While I hope no one else has, please chime in-any advice or reassurance is highly appreciated.
You've stated that you've had sepsis in the past. Reading your signature line,and from your posts,it seems that it was pretty severe. I know hair loss has been mentioned before, but how much did you actually lose? And did it hurt? You know how when you bump your head there's a little lump that forms, and it's super tender to touch and to brush your hair? My whole scalp feels that way. Even wearing a baseball hat hurts. I've gotten to the point where the little soft ties that toddlers use are the only one's that hold my puny ponytail. It's embarrassing, and I know I'm just being vain, but it seems like it's adding insult to injury. I have a friend whose a hairdresser and I'm seeing her tomorrow. The plan is to cut my hair right at chin length so it won't look so scraggly. I only wash it about once a week because of the clumps that come out.
When your hair grew back, did your scalp stop hurting? How much did your lose, and how long did it take to grow back? Even laying my head on the pillow hurts. My scalp is completely visiable in some areas. I've had suggestions to just shave off the rest, but my battle is not nearly to the degree of those fighting cancer. I promise I'm not being a wuss-it's just such a bizarre side effect of sepsis, which I've learned is the gift that keeps on giving.
How about your skin? I posted about lizard skin earlier, but I've been told that was due to the repeated bouts of sepsis as well. Both the hair and the skin happened when I was at the inpatient rehab center. Apparently, these side effects happen a few months after the prolonged infections. With your skin, did you experience it flaking off? I'm not talking dry skin, but as gross as this sounds, it was like snow coming out of my socks. I thought this situation had passed, but it's starting up again. If you experienced this-how long did it last?
Now onto the nails. I have what looks like a speed bump on each nail. Is this due to the healthy nail growing and replacing the nails that grew during the illnesses? If so, is this a good sign that the hair should start growing as well?
Lastly-pain. I mentioned in a previous post that I had a talk with my pain doc. We are having a hard time because I'm experiencing both acute pain, and chronic pain. He doesn't want pain meds masking pain that that could be caused by PT. He wants the therapist to know when to stop. I'm in outpatient PT 3x a week for an hour.My joints are a mess due to being off my immunotherapy meds, so I'm not surprised with that increase. But it's like the inside of my bones are full of pressure, and there is nowhere for it to go.Again, is this something that is yet another side effect and will hopefully subside, or do you think it's my body hating itself? My pain doc is willing to work with me to try and best handle the situation, but I do not want to increase my meds. Right now I have the option of shortening the amount of time in-between doses on PT days. Between the stupid scalp pain even on a pillow, and the deep bone aches, sleep is not my friend.
Finally, how long did it take to get back to your baseline, or as close as possible? I know I'm being impatient, and 109 days is a lot to recover from, but I missed an entire season, and I would like to enjoy this next one.
Nate, who is now 14, handled this entire situation better than most kids. I've had multiple surgeries a year his entire life. Initially, my parents drove me down the 2hrs to Wake, and Nate went home with a friend. Apparently, things went downhill, FAST. THe first week, my parents came down every other day, and called multiple times a day for updates. Nate, still fairly clueless, had a blast with his friends. When it was clear that this was a serious situation, my dad printed out pictures of what a trach looked like, what an ICU look like, basically preparing him for what he would see. It breaks my heart that he had to see that, it's just not fair. I missed his last day of school, and my parents had him for the entire summer. They brought him down 2x week. He spent much of the summer with friends-I have an awesome support group. He seemed like he had it all together, until the Dr at the rehab facility said I could come home. He broke down, sobbing like he did when he was little. I tear up just typing that….
So, I know this is a long post, but I have a ton of questions, and only so many folks have experienced this type of situation. I'm frustrated, impatient, and I hurt. I know I toed the line those weeks in the ICU, and I'm incredibly grateful to be here, but I just wish this was something in my rearview mirror.
Single mom to my little man 11yrs old
39yrs old. JRA since a kid. Chronic Uveitis, pleurisy, pericarditis, intersticial lung disease, sjorgrens syndrome, Cushing's Syndrome, gastroparisis
Bilateral TMJ replacements due to bone fusion, port-a-cath, g/j feeding tube, antiphospholipid antibody syndrome(my blood fights itself) epilepsy, MCTD, dysphagia(unable to swallow correctly)