Posted by juliebernal | Filed under Chronic Illness/Rare Disease, Digestion & Nutrition, Dysautonomia/Autonomic Dysfunction & Neuropathy, Feeding Tubes & Total Parenteral Nutrition (TPN), Gastroparesis (Delayed Gastric Emptying), Hospitalisations/ER Visits, Infection/Fever, Malabsorption/Dehydration, Power Port/Central Venous Line, Recovery & Coping, Symptoms & Complications
Recap from Facebook Posts from February 2015
Written on Feb. 4, 2015
Been having a rough few weeks. Many of my conditions are in a flare up. In and out of paralysis with my arms and legs. Abdominal pain and nausea have been a bit rough today. Low sugars from not being able to eat. Only able to take few sips of liquids. Been spending most of my time stuck in bed. Ready for this bad patch to improve. Tomorrow is a new day. Hope everyone else is doing ok and having a painfree day. – Julie B
Written on Feb. 5, 2015
Really bad nite last night. Now running fever of 101. Feeling very bad right now. Still not able to eat. Port site has been tender. Called to have home nurse come out, but if it continues to progress it might be a trip to the ER. Praying it is just something simple and not sepsis. Really could use some good thoughts and prayers right now.
Written on Feb. 5, 2015 (shortly after being discharged from ER)
Thank you for all the thoughts and prayers. Means so much. That was really scary and I was very out of it. Just got home from ER. We were able to get the fever controlled. They believe no flu, no sepsis. Very good news. Not sure what was causing such the high fever – got up to 102.2. Sent home with prescription for antibiotics since I have no spleen. They took some blood cultures – hopefully those will come back fine. Will continue to keep eye on my temp tonite. I am very worn out and tired. But I finally ate something (toast) after 2 days of no solids.
Written on Feb. 6, 2015
One of the worst nights of my life. Looks like I am heading back to hospital. Praying they will at least keep me this time long enough to do IV Meds since I threw up everything and can’t keep fever reducer or antibiotic down. My body temp dropped down to 95.5 last night (few hours after being discharged from ER) and I believe my body was shutting down. Could not stop shaking and oxygen levels dropped to the 80s. Fingernails turned purple. and all I can say is…feeling lucky to still be here. My husband saved my life. Not sure what is making me so sick, but fever keeps coming back. Back to not being able to eat. Dropped 3 pounds. hopefully someone will be willing to see how serious this is not blow me off. Could use some more good vibes please. Heading back to the ER.
Written on Feb. 7, 2015
Lips turned blue right before heading back to ER. Very scared! fever spiked again and climbing. 102.8. just told us blood culture from my port came back positive this morning. Said they should have called me to come back in. ER should have never sent me home. my face is bright red and burning up. looks like I could be dealing with sepsis (blood infection). They are going to draw more cultures. Fever brain – hard to think. Should know more soon.
Finally starting to see some improvement. Been admitted to hospital and getting fluids, pain finally controlled, fever is gone as of the moment (so I am thinking more clearly now) I’ve already had round of IV antibiotics, have a wicked smart and amazing RN caring for me tonight. Sounds like tomorrow will be a busy day for me with labs and tests already lined up and different specialists who will be reviewing my case. Never thought I would say this…but I am so glad to be in the hospital right now. After the last few days I have had, it is nice to finally see some light and get some relief. Hopefully we will know more soon and really hoping the stay at the hospital will be a short one. I will keep you guys posted when I know more. I want to say thank you to everyone for the kind words and support and for taking the time to read my updates. You guys are amazing. – Julie B.
Written on Feb. 9, 2015
Thank you for all the thoughts and prayers. Cultures came back positive for Staph from my port. But I believe I am now on the upside of my sepsis (blood infection). Saw the dr and he feels it will be safe to continue my IV treatments from home, under the care of home health nurses. So will go home most likely tomorrow – or once the orders are setup. Yay!!! I am already on my 4th round of treatment and gaining my strength back. Will be doing an IV antibiotic every 8 hours for the next 2 weeks. Said they will be saving my port. So no need to have it removed and replaced. This is good news. But there is still a small chance the sepsis can come back few weeks after treatment, and if that happens they will have to remove my port. But they believe the antibiotics (Venco) will take care of things. Taking one day at a time. Feeling hopeful. Again, thank you for all the support, texts, messages, calls and thoughts from everyone. You all really have helped me through a scary time. Really feeling the love. – Julie B.
Written on Feb. 10, 2015
Replaying the last 6 days over and over in my mind. My GI dr saw me Sunday in the hospital. Looked over my chart and said, “Julie, you know sepsis is serious and you could have died from this.” Well…I almost did. If I had tried to wait things out, I might not still be here. My point being…if you have a port, PICC line, cath or tube and EVER experience a high fever or have ANY signs of infection…please DO NOT wait! Sepsis can kill and it can happen fast. Do not allow an ER to send you away without following guidelines for sepsis. Taken from sepsis fact sheet: “Sepsis is more common than heart attack, and sepsis claims more lives than cancer. Sepsis is a life-threatening medical condition and can progress rapidly and be fatal within hours.” If you think you may have sepsis – do not wait!
Written on Feb. 15, 2015
Feeling stronger with each passing day. This weekend I was finally able to shower without almost passing out. I even got to leave the house for a few hours to go out to eat with hubby. Had real food for the first time in a few weeks. Life is good. Feeling thankful for the simple things in life.