You NEVER cease to amaze me with your calm matter-of-fact explanation of events! I would be a HOT MESS. I don't know, is it because you are used to dealing with this that enables you to see the humorous angle & slightly smile when talking about your fever spiking, LOL. Only you Cheyanne, LOL. Love the positivity you bring to our lives with every video. I'm sending up positive energy for the transplant, ASAP! :D
You remind me so much of myself. I am a lupus patient with many complications. Sometimes we know too much for our own good. I am so glad you got to the hospital in time, as we all know how dangerous sepsis is. And yes, we need people to be there when we can not advocate for ourselves. Thank god for them! Hang in there girlie. You are tougher than you should have to be and loved more than you know!!❤️
Your such an amazing soul & person!❤️ You should be a doctor 🤗 and help kids, teens and children with your same diagnosis 🤓Be an advocate for them🧐 I love how you speak up to the doctors and let them know what’s more comfortable for you since you are wearing it in the long run, not them👏Your very inspiring , bless you hun❤️
Thank you for the update. I’m sorry you became so ill with sepsis. Prayers for you to keep feeling better and to head home soon. Blessings to you and your family!!!!
I keep you in my thoughts and prayers all of the time. We all have to stick together!! The power of prayer is amazing and even though we’ve never met face-to-face, I find knowing someone out there is thinking about me and praying for me gives me the power to get through the low points and hard times!!!
Praying for you I've been in hospital all alone and was giving meds I was allergic to but I was unconscious and could not tell them I almost died it was scary I'm glad you made it through it and always get checked out when something is different
Sepsis is horrible! I'm so sorry you had to go through it, but so glad that you are here to tell us about it. I had sepsis 6 times when I was on TPN. I will never forget how it felt. In fact I can't even get cold while showering because it sends me there. The last time I was septic my heart stopped & I'm lucky to be here. My drs won't let me have TPN back, eventhough I'm not doing well on Jtube feeds. I can't feed 24 hours like they want me to. Im lucky if I get 3 hours & then I have to disconnect to let my intestines calm down. I cant keep weight on at all. I'm 5'10 & weigh 120. I'm in constant pain now too! I pray that you are feeling much better. Take care my friend! 💚
My biggest fear is taking my daughter to the ER during this crisis. Cleveland Clinic is closed to us also. I see the fear in my daughters face as I saw the fear in yours when the decision was made for you to go to the ER. Deeply sorry for your illness. Nothing is worse than a port infection. You are a beautiful rare gem. Retelling your nightmares so we can learn from them. You are loved and blessed. Long live Barbie!
@@jayneadanoff1876 When COVID first hit the US, there were concerns about giving transplant patients another transplant. I didn’t mean they were technically closed. The Gut Transplant and Rehabilitation Dept was very cautious about who donated and who received donation. My daughter’s next step is a multi-visceral transplant at Cleveland Clinic. Thanks for asking.
I’ve had sepsis 4 times so far in my life Once after my son was born and twice with my tubes never a port or picc line though bless you. You’re so brave and such a sweet soul I wish you improved management of your conditions I like you have EDS, MCAS, multiple tubes, and much more big love from the UK 🇬🇧 💖💖💖xxx
Ugh what a ride. You definitely have a lot of patience, your whole family does. And I'm so happy to see the constant support you get from all of them, especially your mom who I adore! I have a Bard power port and just the process to get the orders to where they needed to go and what was needed was a disaster and took over 4 months of it bouncing around and around before I even had my surgical consult scheduled for 3 more weeks out. Then it took them 4 weeks for me to get in to have the port placed. In the meantime I had home health nurses coming to my house to put in an IV every 3 days and had they been able to even get it accessed I could have kept the IV for 7 days. I was only able to manage to keep one in for that long. It was impossible to get IV access because I have such weak connective tissue that my veins collapse and are totally unusable for years after just one stick sometimes. I have very few places that they can get blood from let alone an IV and the pharmacy kept sending these huge 1" needles which might have worked if we didn't have to go in my hands. That was a total disaster. I finally got my port placed and it was like a dream compared to all the lines I'd had in the past and the nightmare of the IV garbage they had me go through being stuck over and over again. About 6 weeks later I had been doing well with the port and it was such a huge relief. I suddenly got a really high fever and had the rigors and was absolutely freezing cold. I have had random high fevers from time to time over the years which I never knew what from, just assumed my body was fighting hard with all my EDS stuff and thought maybe it was my Dysautanomia since mine is pretty intense with adrenal insufficiency I take steroids for etc. So I assumed it was just another one from that or just another random one. It went up to 103.9 and I ended up falling asleep and woke up in soaked clothes and my sheets and blankets were soaking wet from sweating out the fever. I figured that was the end of it because my port had absolutely no redness or drainage or pain/itching etc. 4 days later I got a fever that went up to 104.5 and I decided it was time to go to the ER. I HATE the ER. Absolutely can't stand it. They did blood cultures and so on and everything came back normal, in fact my white cells were quite low. No signs of infection inside or out. They admitted me anyway. I definitely didn't expect that. The next day my two blood cultures came back and one was totally normal and the other one took a really long time to grow a very miniscule bacteria count that wasn't a kind of bacteria found in the body. It was a bacteria found in plants and certain tap water you'd find in well water. I don't have well water or even access to it. So they said they thought that blood culture was contaminated. They kept me in there for a week flooding me with antibiotics and removed my port. All my other cultures were clear. Of course the hospital doesn't want to admit fault so they put in my chart that I had sepsis from my port even though they tested it when they removed it and it was clear. It took another 2 months for me to get my new port placed but then the doctors were confused about who was writing orders for my home health agency and my pharmacy so I didn't have it accessed and my home health nurse didn't have orders to access it so I waited with a PICC line for 30 days until they finally figured it out. That was probably 2 months ago and I am still using the PICC because there's something wrong with this port. I don't know if it's scar tissue or if it pulled the stitches out and flipped over which is my best guess. So I have to go back in for an x-ray to see what the problem is but it's been a disaster. I had a shoulder MRI the other day and asked if they could get the X-ray orders from the hospital to just do the MRI and the shoulder x-ray at the same time..or at least the same place. Still waiting to hear back. And my MRI came back with a large complete tear of my rotator cuff from an injury I had when I was 14 (I'm 45) and nobody would listen to me all these years. They kept doing x-rays. Turns out there is a lot of damage in and around that joint. Finally. Validation. So I'm facing yet another surgery and may be facing another port placement. So my heart goes out to you and your family Cheyenne. My mom is 75 and still runs me around and helps me financially while I'm dealing with disability. Your face looks much better in this video, not nearly as puffy and your eyes look clear. I wish my hospital and doctors would listen and pay attention to the dangers of my mast cell triggers. If I say I can't have something they argue with me like I don't know what I'm talking about. And you're exactly right. I know from experience that trying to advocate for yourself is so hard if not impossible. Chronic illness is extremely frustrating mainly because the hospital staff. I hope the very best for you. You have been through a lot. Give your mom an extra big hug from me and all the rest of us Zebras.
I'm so sorry u have to deal with deciding weather or not when it's bad enough to goto hospital or not...this is terrible that ppl with chronic sickness has to put there lives in jeopardy an u always have ur mom with u an now th er y let no one be at ur side...its awful that hospitals are so scared of the puplic ...treating EVERY SINGLE PERSON LIKE POSITIVE..so glad all worked out in your favor hunny...please dont wait to long ...
Ugh girlie, I feel for, sepsis is no joke! I'm just glad they figured out what was wrong & that your on your way to feeling better. Your always in my Prayers ♥
Girl, you are a rock star. I am terrified of getting sepsis in my port. Advocating for yourself is really difficult. I have a seriously hard time with it. Tell your body to knock this stuff off! Prayers and good energy your way my girl.
Glad to know that your doing better now. Sepsis is very difficult to deal with & very painful. I’m happy to hear they caught it early before it got any worse. Good luck and your in my prayers 🙏🏼🙏🏼🙏🏼
Its always good to see you on RUclips. Sounds like you will be home shortly! Yay! Super scary time to have a serious turn in your health, but thank goodness your Mom was allowed to accompany you. May Barbie provide just as many good years of service as Barney!
I had sepsis and went into septic shock. I also had hepatitis and was vomiting large amounts of blood. I thought I was going to die. Praying for you 💖💖
I'll say this now- if the SARS-COV-2/COVID-19 swabbing doesn't make you gag when they go up your nose then the swab hasn't gone deep enough. I was tested twice so far and both times I told the treatment team to give me the damned swabs and they were quite shocked at how far that they actually need to go. In short, if you don't gag when swabbed, it wasn't done right. Edit- I also have a Bard Power Port. It was placed in March of 2018. I love having the port. My doctors have taken to doing culture bottles every 4 months that check for potential bacterial infections and due to my neuroticism of cleaning the surfaces where supplies are held for accessing and cleaning the skin around my port I have not had a single infection so far. Unfortunately it means that nurses in the ER hate me with a passion if they have to actually stick me so I typically stick myself. They then end up looking at me both in amazement but also like I am some sort of magical unicorn that they have to bow down to as I don't flinch and prefer to stand when accessing as I can push my upper chest/shoulder area out better that results in less pain and therefore no flinching when pushing the huber needle in.
The coodie bugs... 😂 Watching how deep that swab goes in, i swear i even felt that bad boy! Yikes!! My mother used to get central line infections often, I've never seen anyone so sick, those line infections are no joke, I'm so glad you've gotten through this. Its a lot for one person to take. You're a very strong young lady
Prayers, I never named my power port. I may just have to do that. And yes its sore after getting one. Hope you are feeling better. I am just at the point in the last year wear food is swelling my mouth causing sores. Dont like having mast cell. I have EDS ,Chiari&hydro . On top of that i am a bleeder. Hope and pray you are in a better place now. Hugs
Lol I've fallen asleep in MRI a few times, thankfully it was for a broken leg, one for a broken arm and the 3rd was my dislocated hip so they didn't care about the breaths thing 😅. Oof girl you're one tough cookie. My oldest is getting ready to go get evaluated for her GJ tube, she wants the button vs the one you have due to worries about pulling it out in her sleep because she's been a human blender since birth during the few hours she does sleep >
Sending prayers 🙏 I have a dual bardport. I named mine Peggy the port.lol I just had it put in March 9th. I have home health care access and deaccess. They are having trouble getting blood return and can't not seem to get access the inner side of the port. I'm praying for better days with Peggy lol. I have classic, hEDs and vascular.
Mannnn I wish you would get a break! And yes. You are girlie. Lol. Welcome Barbie. (Could’ve named him Barnabas). From an old soap opera. Dark Shadows. Barnabas Collins was a vampire!! I was so young and my mom would watch it and just the music scared me. Lol.
I'm sorry you have been going through this. I have only just started watching your channel but it is clear that you manage a LOT and deal with it so well. Will you need a stem cell transplant or can the HLH go away with treatment?
Have you tried a securAcath? It is a securement device to hold your line in place ? I have severe mast cell qs well my line cant even lay on my skin or I react . Dressing changes are a production. Its been my saving grace i still use a statlock but ñone of it touches my skin. I have dysautonomia as well and my securAcath is my lifeline . A securAcath holds ýour line in place and I have the same line as you I know we are in some FB groups together reach out to me if you have questions . Tell them Starr Andrews Strong sent you they will take care of you . Starr Andrews Strong HGactivist
My securAcath tunneled through my skin and the metal prongs worked their way out of my skin - it was horribly sore - although it wasn't a deep pain. I guess its a pretty bad infection risk with open wounds around your line. I'm sure they have their benefits but they can be problematic long term. (Not to invalidate your experience and if you have no option its better than your line falling out!!) :)
@@HospitalPrincess ohmysweetgoodness! I just figured out where my comments go on the mobile app😅😅😅 here I am responding 2 weeks later...sorry about that! Yes oh goodness it's hilarious, my stepmom loves playing too and she keeps mistaking it as the title 'Animal Planet' 😂
There’s another noise in the background I can’t really hear you very well I really have to focus on what you’re saying why do you think what we’ll fix this problem is a little microphone so we can just hear you are not all the background noise
Glad to know that your doing better now. Sepsis is very difficult to deal with & very painful. I’m happy to hear they caught it early before it got any worse. Good luck and your in my prayers 🙏🏼🙏🏼🙏🏼
Your such a sweetie, God has you in
His ever loving arms always. 🎄🌷
You NEVER cease to amaze me with your calm matter-of-fact explanation of events! I would be a HOT MESS. I don't know, is it because you are used to dealing with this that enables you to see the humorous angle & slightly smile when talking about your fever spiking, LOL. Only you Cheyanne, LOL. Love the positivity you bring to our lives with every video. I'm sending up positive energy for the transplant, ASAP! :D
She is so intelligent and beautiful! God bless you! I pray you get well. You're a brave young girl. ❤️🙏❤️🙏❤️🙏❤️
Only you, could crack jokes in the face a of life threatening illness. You are amazing and an inspiration.
You remind me so much of myself. I am a lupus patient with many complications. Sometimes we know too much for our own good. I am so glad you got to the hospital in time, as we all know how dangerous sepsis is. And yes, we need people to be there when we can not advocate for ourselves. Thank god for them! Hang in there girlie. You are tougher than you should have to be and loved more than you know!!❤️
Thank you! ❤️Hahaha, yes....I like to think that knowledge is power. ;)
You are a hero
You are so very well educated on your situation. So very glad you will be ok. Prayers for you. Hang in there.
Sepsis is scary... I’m so glad you’re ok! Sending you lots of good vibes✨
That it is. Definitely not fun times. Thank you! I hope you're hanging in there. ❤️
Your such an amazing soul & person!❤️ You should be a doctor 🤗 and help kids, teens and children with your same diagnosis 🤓Be an advocate for them🧐 I love how you speak up to the doctors and let them know what’s more comfortable for you since you are wearing it in the long run, not them👏Your very inspiring , bless you hun❤️
Thank you for the update. I’m sorry you became so ill with sepsis. Prayers for you to keep feeling better and to head home soon. Blessings to you and your family!!!!
Girl you are always in my prayers🙏🏻💖
I appreciate it. Thank you! ❤️
@@HospitalPrincess Prayers!
Our love and prayers. Hope Barbie treats you as well as your buddy Barney did. ♥️
God bless your heart wishing you well I hope you get to feeling better soon .God speed ❤️💙💚💛🧡💜
I keep you in my thoughts and prayers all of the time. We all have to stick together!! The power of prayer is amazing and even though we’ve never met face-to-face, I find knowing someone out there is thinking about me and praying for me gives me the power to get through the low points and hard times!!!
Praying for you I've been in hospital all alone and was giving meds I was allergic to but I was unconscious and could not tell them I almost died it was scary I'm glad you made it through it and always get checked out when something is different
Sepsis is horrible! I'm so sorry you had to go through it, but so glad that you are here to tell us about it.
I had sepsis 6 times when I was on TPN. I will never forget how it felt. In fact I can't even get cold while showering because it sends me there. The last time I was septic my heart stopped & I'm lucky to be here. My drs won't let me have TPN back, eventhough I'm not doing well on Jtube feeds. I can't feed 24 hours like they want me to. Im lucky if I get 3 hours & then I have to disconnect to let my intestines calm down. I cant keep weight on at all. I'm 5'10 & weigh 120. I'm in constant pain now too!
I pray that you are feeling much better. Take care my friend! 💚
Prayers,love,light and healing
I am so glad to see you feeling better! We've been praying for you and will continue to do so.
Thank you. Sending love!
You are amazingly brave girl! Keep fighting for yourself! God blessed! I’m a health care provider. Sending My thoughts and prayers to you
My biggest fear is taking my daughter to the ER during this crisis. Cleveland Clinic is closed to us also. I see the fear in my daughters face as I saw the fear in yours when the decision was made for you to go to the ER. Deeply sorry for your illness. Nothing is worse than a port infection. You are a beautiful rare gem. Retelling
your nightmares so we can learn from them. You are loved and blessed. Long live Barbie!
why is Cleveland clinic closed to you? Are the financial reasons that you can’t use it?
@@jayneadanoff1876 When COVID first hit the US, there were concerns about giving transplant patients another transplant. I didn’t mean they were technically closed. The Gut Transplant and Rehabilitation Dept was very cautious about who donated and who received donation. My daughter’s next step is a multi-visceral transplant at Cleveland Clinic. Thanks for asking.
Never clicked so fast! Been so worried about you. Good to see that you are on the mend form that.
I’ve had sepsis 4 times so far in my life Once after my son was born and twice with my tubes never a port or picc line though bless you. You’re so brave and such a sweet soul I wish you improved management of your conditions I like you have EDS, MCAS, multiple tubes, and much more big love from the UK 🇬🇧 💖💖💖xxx
Be Well.... Canada is rooting for you xo
Sorry you are having such a time of it. I look forward to your videos so much! Wishing you better times.
Ugh what a ride. You definitely have a lot of patience, your whole family does. And I'm so happy to see the constant support you get from all of them, especially your mom who I adore!
I have a Bard power port and just the process to get the orders to where they needed to go and what was needed was a disaster and took over 4 months of it bouncing around and around before I even had my surgical consult scheduled for 3 more weeks out. Then it took them 4 weeks for me to get in to have the port placed. In the meantime I had home health nurses coming to my house to put in an IV every 3 days and had they been able to even get it accessed I could have kept the IV for 7 days. I was only able to manage to keep one in for that long. It was impossible to get IV access because I have such weak connective tissue that my veins collapse and are totally unusable for years after just one stick sometimes. I have very few places that they can get blood from let alone an IV and the pharmacy kept sending these huge 1" needles which might have worked if we didn't have to go in my hands.
That was a total disaster. I finally got my port placed and it was like a dream compared to all the lines I'd had in the past and the nightmare of the IV garbage they had me go through being stuck over and over again.
About 6 weeks later I had been doing well with the port and it was such a huge relief. I suddenly got a really high fever and had the rigors and was absolutely freezing cold. I have had random high fevers from time to time over the years which I never knew what from, just assumed my body was fighting hard with all my EDS stuff and thought maybe it was my Dysautanomia since mine is pretty intense with adrenal insufficiency I take steroids for etc. So I assumed it was just another one from that or just another random one. It went up to 103.9 and I ended up falling asleep and woke up in soaked clothes and my sheets and blankets were soaking wet from sweating out the fever. I figured that was the end of it because my port had absolutely no redness or drainage or pain/itching etc.
4 days later I got a fever that went up to 104.5 and I decided it was time to go to the ER. I HATE the ER. Absolutely can't stand it. They did blood cultures and so on and everything came back normal, in fact my white cells were quite low. No signs of infection inside or out. They admitted me anyway. I definitely didn't expect that. The next day my two blood cultures came back and one was totally normal and the other one took a really long time to grow a very miniscule bacteria count that wasn't a kind of bacteria found in the body. It was a bacteria found in plants and certain tap water you'd find in well water. I don't have well water or even access to it. So they said they thought that blood culture was contaminated. They kept me in there for a week flooding me with antibiotics and removed my port. All my other cultures were clear. Of course the hospital doesn't want to admit fault so they put in my chart that I had sepsis from my port even though they tested it when they removed it and it was clear.
It took another 2 months for me to get my new port placed but then the doctors were confused about who was writing orders for my home health agency and my pharmacy so I didn't have it accessed and my home health nurse didn't have orders to access it so I waited with a PICC line for 30 days until they finally figured it out. That was probably 2 months ago and I am still using the PICC because there's something wrong with this port. I don't know if it's scar tissue or if it pulled the stitches out and flipped over which is my best guess. So I have to go back in for an x-ray to see what the problem is but it's been a disaster.
I had a shoulder MRI the other day and asked if they could get the X-ray orders from the hospital to just do the MRI and the shoulder x-ray at the same time..or at least the same place. Still waiting to hear back. And my MRI came back with a large complete tear of my rotator cuff from an injury I had when I was 14 (I'm 45) and nobody would listen to me all these years. They kept doing x-rays. Turns out there is a lot of damage in and around that joint. Finally. Validation. So I'm facing yet another surgery and may be facing another port placement.
So my heart goes out to you and your family Cheyenne. My mom is 75 and still runs me around and helps me financially while I'm dealing with disability. Your face looks much better in this video, not nearly as puffy and your eyes look clear.
I wish my hospital and doctors would listen and pay attention to the dangers of my mast cell triggers. If I say I can't have something they argue with me like I don't know what I'm talking about. And you're exactly right. I know from experience that trying to advocate for yourself is so hard if not impossible. Chronic illness is extremely frustrating mainly because the hospital staff.
I hope the very best for you. You have been through a lot. Give your mom an extra big hug from me and all the rest of us Zebras.
I'm so sorry u have to deal with deciding weather or not when it's bad enough to goto hospital or not...this is terrible that ppl with chronic sickness has to put there lives in jeopardy an u always have ur mom with u an now th er y let no one be at ur side...its awful that hospitals are so scared of the puplic ...treating EVERY SINGLE PERSON LIKE POSITIVE..so glad all worked out in your favor hunny...please dont wait to long ...
Praying for you and your family!
Prayers 🙏💗
Ugh girlie, I feel for, sepsis is no joke! I'm just glad they figured out what was wrong & that your on your way to feeling better. Your always in my Prayers ♥
Girl, you are a rock star. I am terrified of getting sepsis in my port. Advocating for yourself is really difficult. I have a seriously hard time with it. Tell your body to knock this stuff off! Prayers and good energy your way my girl.
Thank you!! Sepsis is a scary reality when having a line. I hope you never have to experience it.
Glad to know that your doing better now. Sepsis is very difficult to deal with & very painful. I’m happy to hear they caught it early before it got any worse. Good luck and your in my prayers 🙏🏼🙏🏼🙏🏼
I’m sorry that you have to go through that must have been so scary for you
Its always good to see you on RUclips. Sounds like you will be home shortly! Yay! Super scary time to have a serious turn in your health, but thank goodness your Mom was allowed to accompany you. May Barbie provide just as many good years of service as Barney!
Girl, your s trooper. All the procedures you go thur and let you always sound upbeat. Continuing to pray for you and your family.
Thank you!!
Thinking about you and sending healing vibes your way 💕
So glad to see another video - still her - still fighting 💜💜💜
Praying for you
I had sepsis and went into septic shock. I also had hepatitis and was vomiting large amounts of blood.
I thought I was going to die.
Praying for you 💖💖
I'll say this now- if the SARS-COV-2/COVID-19 swabbing doesn't make you gag when they go up your nose then the swab hasn't gone deep enough. I was tested twice so far and both times I told the treatment team to give me the damned swabs and they were quite shocked at how far that they actually need to go. In short, if you don't gag when swabbed, it wasn't done right.
Edit- I also have a Bard Power Port. It was placed in March of 2018. I love having the port. My doctors have taken to doing culture bottles every 4 months that check for potential bacterial infections and due to my neuroticism of cleaning the surfaces where supplies are held for accessing and cleaning the skin around my port I have not had a single infection so far. Unfortunately it means that nurses in the ER hate me with a passion if they have to actually stick me so I typically stick myself. They then end up looking at me both in amazement but also like I am some sort of magical unicorn that they have to bow down to as I don't flinch and prefer to stand when accessing as I can push my upper chest/shoulder area out better that results in less pain and therefore no flinching when pushing the huber needle in.
The coodie bugs... 😂
Watching how deep that swab goes in, i swear i even felt that bad boy! Yikes!!
My mother used to get central line infections often, I've never seen anyone so sick, those line infections are no joke, I'm so glad you've gotten through this. Its a lot for one person to take. You're a very strong young lady
Prayers, I never named my power port. I may just have to do that. And yes its sore after getting one. Hope you are feeling better. I am just at the point in the last year wear food is swelling my mouth causing sores. Dont like having mast cell. I have EDS ,Chiari&hydro . On top of that i am a bleeder. Hope and pray you are in a better place now. Hugs
Poor baby I feel for you.
Aww man. Praying for you Cheyanne💕💕
Thank you 💕
You look jaundice in this video. I am so glad you are ok!
Good to see you! I don't blame you for wanting to avoid the hospital!
I love your mask... where did you get it
vogmask.com
Hospital Princess · Cheyanne Perry ok thank you
Sending you good vibes! Stay strong!
You’re a badass! I wish I were so courageous.❤️
Mama bear told that nurse “ be gentle “ she was not going to play around .
I’m so sorry hunny praying for you ❤️❤️❤️
Lol I've fallen asleep in MRI a few times, thankfully it was for a broken leg, one for a broken arm and the 3rd was my dislocated hip so they didn't care about the breaths thing 😅. Oof girl you're one tough cookie. My oldest is getting ready to go get evaluated for her GJ tube, she wants the button vs the one you have due to worries about pulling it out in her sleep because she's been a human blender since birth during the few hours she does sleep >
Sending good wishes and positive vibes your way... 💖
i will fight for you cheyanne i have fighter spirit
in advanced form and you will be better
Sending prayers 🙏 I have a dual bardport. I named mine Peggy the port.lol I just had it put in March 9th. I have home health care access and deaccess. They are having trouble getting blood return and can't not seem to get access the inner side of the port. I'm praying for better days with Peggy lol. I have classic, hEDs and vascular.
Peggy - how cute! Tell her she better behave, hahaha. Thank you for the prayers!
Your welcome you are one strong young lady. 🦸♀️
Mannnn I wish you would get a break! And yes. You are girlie. Lol. Welcome Barbie. (Could’ve named him Barnabas). From an old soap opera. Dark Shadows. Barnabas Collins was a vampire!! I was so young and my mom would watch it and just the music scared me. Lol.
First time on yr channel prayers
I'm sorry you have been going through this. I have only just started watching your channel but it is clear that you manage a LOT and deal with it so well. Will you need a stem cell transplant or can the HLH go away with treatment?
At this time, stem cell transplant is not on the table. We are trying to treat the underlying problem to see if that improves things. :)
Just curious what is sepsis?
Blood infection
I know the prednisone face really well :(
Have you tried a securAcath? It is a securement device to hold your line in place ? I have severe mast cell qs well my line cant even lay on my skin or I react . Dressing changes are a production. Its been my saving grace i still use a statlock but ñone of it touches my skin. I have dysautonomia as well and my securAcath is my lifeline . A securAcath holds ýour line in place and I have the same line as you I know we are in some FB groups together reach out to me if you have questions . Tell them Starr Andrews Strong sent you they will take care of you .
Starr Andrews Strong HGactivist
My securAcath tunneled through my skin and the metal prongs worked their way out of my skin - it was horribly sore - although it wasn't a deep pain. I guess its a pretty bad infection risk with open wounds around your line. I'm sure they have their benefits but they can be problematic long term. (Not to invalidate your experience and if you have no option its better than your line falling out!!) :)
Sending my love! What's the weather by you dear? Play any animal crossing lately? Keeping you in my thoughts as usual♡
Sending love to you! I am always playing Animal Crossing. I am hooked!
@@HospitalPrincess ohmysweetgoodness! I just figured out where my comments go on the mobile app😅😅😅 here I am responding 2 weeks later...sorry about that! Yes oh goodness it's hilarious, my stepmom loves playing too and she keeps mistaking it as the title 'Animal Planet' 😂
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I'm new I subscribed I had a friend with sepsis she still has issues once in a while so check on her nice meet u
Nice to "meet" you!!!
There’s another noise in the background I can’t really hear you very well I really have to focus on what you’re saying why do you think what we’ll fix this problem is a little microphone so we can just hear you are not all the background noise
RIP Girl to bad you died .💀😈
Glad to know that your doing better now. Sepsis is very difficult to deal with & very painful. I’m happy to hear they caught it early before it got any worse. Good luck and your in my prayers 🙏🏼🙏🏼🙏🏼