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Posted By : rocckyd - 7/17/2017 11:48 AM
Seems like I just got here. But apparently that's not the case.

Working on treache care and then chill with some meds and book.

Hoping Nate can make a visit.

Post Edited (rocckyd) : 7/17/2017 11:52:26 AM (GMT-6)


Posted By : pitmom - 7/17/2017 12:10 PM
Gentle hugs to you rocckyd.
multiple surgeries for rotator cuff both shoulders with residual chronic impingement syndrome, ulnar nerve transposition, carpal tunnel release, wrist ganglionectomies/denervectomies/tenolysis, multiple herniated discs, tarlov cyst, whiplash, bursitis of hips, tendonitis, torus, 3rd degree shoulder separation, torn labrum, ovarian cysts, fibroid tumors of the uterus

Posted By : White Beard - 7/17/2017 10:21 PM
Sepsis is very serious stuff rocckyd , I will continue to keep you in my prayers! Even though I haven't responded very often to your post,I have been reading Them! I sure hope everything turns out well for you !!!
May God's Peace be always with you!!

White Beard
Moderator Chronic Pain
USAF retired in Sept.1991. I went back to school and became a licensed RN in 1994, I worked on Oncology and Med Surg, Disabled in late 1999, was approved SSD in early 2002! Diagnosed with: DDD and Multiple herniated Disks; Foraminotomy L3/4/5 Jan 2013; Posterior Articular Joint fusion Nov 2010; C5/6 ACDF Sep 2009; C6/7 ACDF 1985; Implanted pain Pump Jun 2014.

Posted By : (Seashell) - 7/18/2017 3:34 PM
Rocckyd
Your circumstances are strongly suggestive of Adult Respiratory Distress Syndrome or ARDS.

I hope that you are receiving supportive emotional care to help you cope with what may be a slow and protracted recovery.

I am sorry that you are facing continued challenges and set-backs.
Karen
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

Posted By : rocckyd - 7/19/2017 6:34 PM
Lucid now.
Been here since mid June!

Drs are saying a few months until baseline spent inpatient.

Working at getting off the ventilator
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)

Posted By : White Beard - 7/29/2017 9:58 PM
Hi rocckyd, Hope you are doing well! Hadn't seen a new update from you in a little while, so hope your getting better!

I continue to keep you in my Prayers!

White Beard
Moderator Chronic Pain
USAF retired in Sept.1991. I went back to school and became a licensed RN in 1994, I worked on Oncology and Med Surg, Disabled in late 1999, was approved SSD in early 2002! Diagnosed with: DDD and Multiple herniated Disks; Foraminotomy L3/4/5 Jan 2013; Posterior Articular Joint fusion Nov 2010; C5/6 ACDF Sep 2009; C6/7 ACDF 1985; Implanted pain Pump Jun 2014.

Posted By : rocckyd - 8/6/2017 11:08 PM
Lots of improvement smile
Surgery was on June 8, a 23hr admission being the plan. Duke referred my to Wake Forest, so I was 2hrs from home. Instead my bowel ended up nicked, and my spleen was removed. 12 surgeries were done over a month until the docs were finally able to close my abdomen. I was in the icu until July 26th, and I remember very little.

Apparently, I was not expected to pull through, and many of my friends made the drive down, some camping out for a few days in the room. Of course, my family was there as well. My parents couldn't stay because they have my son.

Today is day 81 inpatient which is mind-blowing to me. Thankfully I only remember the last 30ish days. WF told me that it would take months to wean of the vent, which was pretty devastating. On the 26th I was moved transferred from WF 3hrs north to a facility an hour away from home which specializes in vent weaning. Guess what, I'm off the vent! The floor that I'm on specializes in weaning, which is why I didn't end up closer to home.

The issue that is preventing me from getting home is now physical. I have no hip muscles and cannot stand up on my own. I walked 300 feet with a walker on Fri, and it wore me out. Once I get discharged from here I'll do inpatient rehab at a place in my hometown. That will make everything so much easier. Right now my parents and Nate come about twice a week, since it's an hour drive. I also have a good group of friends that make the drive as well. It'll be great to have people able to stop by for a quick visit.

So apparently, according to the Drs, I'm a rockstar for the progress I've made so far, and that I'm still alive and kicking. PT is incredibly frustrating, but I'm giving 110%, so hopefully those hip muscles will return.

Pain wise, the docs have been great, so it's pretty well controlled.
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)

Posted By : (Seashell) - 8/8/2017 9:00 AM
Rocckyd:
I experienced an extensive perforation of my intestines due to tissue thinning associated with long-term corticosteroid use. The failure of my intestinal tract was analogous to the unzipping of a l-o-n-g zipper of a rain jacket. The entirety of my intestinal tract failed.

I was given a 10% chance of survival. That I survived is a miracle - a testament to the skill of the medical team who came to my aide and to the presence of God/Higher Power. I experienced a near death experience that forever impacted the very core of my being.

Recovery was a long slog.

I am editing this post to remove my earlier comments. And leave it at that.

Life is too short and too precious to be caught up in minuta or judging others. And I apologize for expressing an opinion that would have been better left unexpressed.

I genuinely wish you well in life and an easing of your health burdens,
Karen
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

Post Edited ((Seashell)) : 8/8/2017 5:32:04 PM (GMT-6)


Posted By : rocckyd - 8/8/2017 9:46 AM
Seriously?

I don't even know his to respond to that. I think we all know on this site that no two medical stories are the same.

I'm sorry that you don't feel 80+ days, 60ish in the ICU, is not enough for my above post to happen. The 12 surgeries were due to the site re-opening, and my abdomen was finally closed on the 12. I'm by no means done in this journey, and just now talked to the patient coordinator about transitioning to in-patient rehab, which will continue this journey.

Yes-i'm pretty offended.

Post Edited (rocckyd) : 8/8/2017 10:07:18 AM (GMT-6)


Posted By : rocckyd - 8/8/2017 4:12 PM
Hey all,

I'm going to step away for awhile.

I had no idea that there was any question as to whether I, intentionally or unintentionally, mislead anyone with my posts.

Yes, I'm a professional patient, with a part-time job as an inpatient, so I have a lot of experiences to share. It's always been helpful for me to write stuff down, and the support from you guys was helpful.
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)

Posted By : (Seashell) - 8/8/2017 5:36 PM
I have amended my earlier post and apologize for my earlier post.

Tomorrow is another day.

Take care, rocckyd.

Karen

Posted By : Abilene - 8/8/2017 6:55 PM
rocckyd, I always read your comments with great interest. I don't often respond because I have nothing to compare. I'm just in awe of how you keep on keeping on. Many prayers for you and your little man!
Posterior C3 - C7 laminectomy and fusion 2 rods and 10 screws, local bone graft from surgery site-lamina and other bony tissue 12/17/2013; Hyperthyroidism; Sleep Apnea-update-it's gone after a 25 lb weight loss;
Thankful for my husband of over 40 years

Posted By : White Beard - 8/10/2017 10:35 PM
Hi rocckyd I've been away from the forum for the last few days and I'm just catching up on the Post! I was wondering how you were? And I must admit, when you wrote about having sepsis, I was more than a bit worried that things did not go well for you and we might hear from you again! So seeing your post was for me some what of a relief! All I can say is, WOW I had no idea what you have been going through the last few Months! If anybody has a Guardian Angel looking out for them and watching over them YOU young lady certainly must be one of Them! I'm glad you have persevered and over come all these trials, I know you still have a long hard road ahead of you but with your spirit and determination I am sure you will prevail and over Come!

You have all my admiration rocckyd! And of course my Prayers too! I do hope you continue to come back and keep us informed of your progress. You've been on this forum a long time now and are a major part of our forum family here, and we do care about one Another!

May God's Healing Peace be always with you and your Family!
Be gentle with your self and above all..........Just get better!! Okay?

White Beard
Moderator Chronic Pain
USAF retired in Sept.1991. I went back to school and became a licensed RN in 1994, I worked on Oncology and Med Surg, Disabled in late 1999, was approved SSD in early 2002! Diagnosed with: DDD and Multiple herniated Disks; Foraminotomy L3/4/5 Jan 2013; Posterior Articular Joint fusion Nov 2010; C5/6 ACDF Sep 2009; C6/7 ACDF 1985; Implanted pain Pump Jun 2014.

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