FIRST ADMISSION OF 2021 | Sepsis or HLH? 

Hey Sweetie! My heart sinks every time I see you are in the hospital 😔. Rocefin actually works the best for me also. My white count rarely increases and drops really low fast when I’m septic. Fortunately, I’ve not had one now since 2016. Both iv benadryl and tpn are very caustic. It’s not a huge thing now because you are so young. I’m 45 now and I’ve been on TPN daily since 2010. We don’t really see many older people with severe MCAS making videos on RU-vid but if there is one good that can come out of me having this disease, it’s that l can share with you and others by letting you know what I wish l would have done differently. Like you, I’m meticulous about my line! Both iv benadryl and tpn are very caustic. It’s not a huge thing now because you are so young, but we only have six blood vessels big enough to get Tpn through. Overtime those blood vessels are going to start getting scar tissue around where your line is meaning you will have to use a different blood vessel. Most hospitals have their own protocol for lying infections and many of them pull the line and start over. I never really questioned if there were other treatments that would be just as effective without pulling the line, but once we got to the point where my chest was completely inaccessible we had no choice but to use my groin. We tried several procedures to open the vessels in my chest to no avail. Unfortunately, at this point, I hadvery few options other than a transplant or coming to the realization that my days on earth will be limited. Our plan now is to have interventional radiology put a guide wire in the line pull it out and slip a new one back into the same place. Once all infection is cleared, they will do the same thing again with another line. Fortunately, I have not needed to do this so far, but I wish we would’ve used that plan in the beginning as I think it would have slowed down the scarring and allowed me to use the vessels in my chest longer. The other thing they have us do here is ethanol locks for 2 to 3 hours a day, so if you haven’t used it before, you may want to see if this is an option for you. You just have to make sure you know the length of your line so the ethanol this not get into your bloodstream. Once you are done with the lock you need to withdraw it from your line before using it again. Hebron makes me bleed profusely and we are not able to use that on me.The easiest way to do that without experimenting using ethanol is to draw up a vial of benadryl and slowly push it in until you first noticed it starting to burn. Then take a half of a cc off of that number and you’ll have the amount of ethanol it is safe to use without getting into your bloodstream. Are you aware of any patients with severe mcas who have had a successful transplant ? the clinic I see willing to try a transplant but at this point it is not an option I want to pursue unlessl find another patient with a successful transplant. Hang in there! I’m sending hugs, healing thoughts, and prayers your way!

All the little nooks and crannies in a hospital bed next to your arms I’m sure is filled with bacteria 🦠 I always notice how the beds are made wrong because of that! We need to fight for that! Tell your mom she’s a trooper too! My mom waits long hours with me as well and it’s good to know you have your momma with you when times get tough💜 Praying they find out what’s going on!!😥

I’m catching up on your vids. It’s been several months since this was filmed and we keep thinking positive for you and pray for your health!

I am so sorry zebra sis I hate to hear your not getting to sleep in your own bed and I just started too! Thinking of you! Praying for your comfort love! Praying for your strength! Sending hugs from Memphis💙

I’m glad you’re home, everyone always feels better in their own home and bed. Feel better soon , I’ll be thinking about you and say a prayer. I have Vascular EDS, so I can relate to some of what your going through. The things that I have had could make a book...just like you. Take care Cheyenne, say hi to your Mom for me...I’m a mom too. Peace and Love ✨💫🙏

I love you Cheyanne, praying for you.

Sorry Cheyenne, keep fighting to stay positive! I was in a bit in March after a few in the last few months of 2020. Get the frustration. Hope things soon improve for you. 🙏 glad you got to get home. Have a good weekend

So sorry you are in hospital but you have such a positive attitude . Sending you all the best that you stay home and keep well 🤗😘👍🙏🏻xx

I'm sorry to hear that you had to go into hospital again, but at least you're home now. I'll be praying for you and your family!

Sending prayers and get well vibes 🙏❤you're a trooper young lady 💙❤🙏

much love I hope you feel better soon.

I’m so sorry you had to be hospitalized, but your attitude is great! You are an inspiration. ❤️

RIP Cheyanne ❤

Hope feeling better

So glad you're home again. I totally know what you mean about the Pester-Sues in the hospital. I had a stroke back in November and was in the hospital for 4 days. Interestingly enough, I was in the ICU for the first day and that place was worse than the cardiac ward I was in for the rest of the time. Crazy.

Hope you're feeling better soon

Sorry to hear about your been in hospital hun

I hope you feel better soon

So sorry your having to go thru this. I just said a prayer for you. You amaze me....I wish I could deal with medical issues with even half the maturity and calmness that you do. I hope you get the news you want from the heart test. Could you please tell me where you got the flowered mast you were wearing in the drs waiting room? It looks like it fits so well at the top of your nose, I'd love to have one or two just like it. Thanks so much 🙂

Omg! This is like looking at my daughter. No words. EDS and accompanying conditions are hell to live with. Good bless and hand in there. I hear the same pump running these my daughter has. Much love.❤️❤️❤️. Zebras and Masties unite!

Im so sorry for your lost to her parents an to husband. Please give my love to her furbabbies. How is Teddy an weaslry doing. I really miss Cheyenne an her videos she was so much inspiration to me. My love an prayers are with you alll. 10:00

sorry you line got infected :( that's so scary. Glad they caught it! I am really interested in psychology and was wondering if you could do a video about your studies in school and things about how to suceed at school with a chronic illness.

Wow hope everything is ok hun big hugs very nice

You are amazingly smart and strong xxoo

Hi hun, It’s good to see you again. I’ve been away for a bit, then seems all I’ve been subscribed to disappeared. I (shame on me) forgot your name so couldn’t type you in..ya know..anywho, hate you were in the hospital here, but great to see you! Girl, demand they wipe the tips off, that’s happened to me several times. Why is it, some of the nurses get over confident or something. I was getting a port put in several months ago, happened to me and I couldn’t believe my eyes!! Like this is a port, SERIOUSLY I said! Ok, going to finish watching you video..your as beautiful as ever..Stay sweet, stay beautiful..stay happy! ✌🏻

That’s so interesting about leaving Ancef in the line. I hope it works!

Seeing these pop up is so sad now this lovely young woman has passed

I'm in the hospital right now. I know when you mean

I loved your laugh

I have the same staph as well . I have the same line but I get a securAcath to hold my line in so I don't have to have it stitch in. .my line care we are so careful . My dressing changes are a production and my line can't sit on my skin . I hope you feel better . I am on a iv holiday. With a midline in my elbow . Hugs Starr Andrews Strong HGactivist Founder of Hyperemesis Gravidarum Before During And The Aftermath-HGBDATA

Where u get ur mask I love it

I hope u feel better soon... feeling sick sucks. Much love 💕

Out of all the chronic ill persons I watch on here. You seem to have to go through the most. Much respect to you for how you handle on a daily basis. Also, you are so well educated on every on your condition and all the different medications you have to deal with. You are a source of courage for all of us. Thank you for showing what it’s like to be a fighter each day.

How she feeling

Ughhh theses nurses! I can't even. I dealt with more residents and students than doctors.i go bananas in my head with not following protocol. 🙄😬 I'm still having trouble keeping up with what day it is 😆

How old is she

I hate that you were in hospital again. Btw I ordered a mask but they didn’t honor your discount code.

sending cynthia a video LOL

♥️♥️♥️♥️🍀🍀🍀🍀

Do not blame yourself. Bacteria are jerks.

What had happens right her

Is she oaky now is she at home

On bed

Ugh ER nurses are the worst about cultures 🤦‍♀️