I have never heard of an AVF being used in an EDS patient. Are they anticipating a longer healing time (my doctor always doubles recovery times for me) or bleeding/clot risk? I’m super curious about this option. Hang in there Jaquie! So glad you have such a great support system by your side when it comes down to making these difficult decisions. You are in my prayers! ❤️
You don't need to explain why you haven't said anything yet, it's ok! You know, it's like we know you and your sweet family from your vlogs but you don't really know all of us. I say that because I wish I could help you and your mom with everything while you have to deal with your surgeries and Judd being gone; but then i realize that you don't really know me and therefore that sounds creepy! And I'm in Texas, so, there's that, too! You at least will have my prayers!
Kara Carta awww!! That was a sweet comment.. I feel the same way! But, I’m in the U.P. Of Michigan.. & I have CP So her family would probably need to help me too.. & that’s not good!🤗✌️
Your health needs are just that - your own. You don't have to explain why you didn't share about this, it is completely understandable. Sending loving and healing thoughts your way as you prepare for this surgery and recover from the last
You remind me a lot of my dad who also had a server disease. I miss him sooo much. I am happy to see you taking care of yourself very well. Keep moving forward. You have my best wishes.
We have a patient at work who needs daily potassium and sodium infusions. They got their fistula placed in their leg and they have both hands to be able to access the fistula themself. Hope your new adventure is helpful!
My Dad had a fistula. It lasted 5 years (would have lasted longer but my Dad passed away). His was used for haemodialysis. I wish you all the best with your upcoming surgeries!
My thoughts and prayers are with you!!!! As the spouse of a dialysis patient,, the placement of his fistula was nerve wracking, but he has had no real problems with it and it has been working for more than 8 years....
i just had to get my port removed for the same reason as in the skin on top of my port had a chronic wound that never healed so the skin turned a gross purple color plus i also had a port pocket infection . i now have a picc line while waiting to get another port placed to make sure there is no lingering infection .
Good luck darlin’...I’m here with ya. I had surgery on the 17th, find out Tuesday when the next one is. :( I’m already at number 8. I’m so over it!! They will take good care of you! Yes, you have struggled with that port for sometime. You may find this will work great, and you will wish you had it along time ago. Prayers all will be well as I think it will be GRRRREEEAAAAT! xoxo
I've honestly never heard of an AV fistula being used for IV fluids and Benadryl? I have a friend with one - used for dialysis - and her arm is always sore. She got a severe infection from it too, which resulted in a very long hospital stay. Did your Dr ever mention a Hickman? I'm not trying to change your mind d, and I do wish you well, but I'm not sure this AV Fistula will end up being all it's cracked up to be. :/
So sorry girl...I got a call an hour ago to pack my bag and head to admit through ER AGAIN!!! Just had total Gasterectomy, Gall Bladder Removal, Partial Pancreas and Partial Intestine removal end on August. I keep getting blood clots so now my *go to* PICC line had to be pulled ugh! My last J tube got MRSA and I'm down 9 pounds in 2 weeks. Yep I'm right there with ya, either a stent or some kind of dilation has to be done. Unsure why admitting today (probably for meds, fluids) my surgeon is out of the Country until the 26th. Sorry I didn't mean to make you vlog about me, I'm not a TH-camr and my family and the rare amount of friends I have left don't really "get it". I will definitely be keeping you in my thoughts...you a much braver and fighter than me! #yougotthis XOXO Off to the ER I go...I hate saying the words Failure to Thrive but it's better than I'm critically ill and dying ugh! :(
Nadine Miller Sorry that you are going through such a rough time. I will say a prayer for you! All of us chronic illness warriors are strong fighters! You are not alone!
Nadine Miller I had the same surgery you just had in 2010, except that the did not mess with my pancreas. It took me a long time to recover from that one. If ever you need someone to listen, I'm here😊.
@@chaconag well said, we're definitely fighters, and it's good and or comforting to know we're not alone in the fight when we're not doing so hot. Nadine keep up the good fight! Hang in there girl. ❤
Unrelated, but I used to have a g-tube because I had to do tube feedings 3 times a day for years. I got infections so much from it no matter how well I took care of it. The silicon grew mold even though we changed it 1-2 times a month. (Had a g-tube from age 6 to age 15)
I hope the surgery and everything around it goes well❤ This is completely off topic, buut: I started watching your videos some months before my health kinda just went downhill (previously I only had anxiety and depression but then I was diagnosed with endometriosis and recently with fibromyalgia) and my pain got worse every day (I had neck/shoulder pain for many years but now it has kinda spread to my entire body). I really think that having watch your videos and seeing what it's like to live with chronic illnesses helped me out. I'm not saying I was conpletely fine all the time, because my anxiety and depression definitely acted up A LOT when all this was happening, and it still does quite regularly, but I think I'd handle it a lot worse if I hadn't been watching your videos :) And it's just great to see someone else with chronic illnesses managing to get through life, especially when I feel like I'm all alone in this, so thank you :)
i HAVE that AV fistula, in my upper arm, my advice is get the very best vascular surgeon you can find!!!! Also train well to stick yourself. My arm does not look that bad, but I have seen some that are. But worth it!
So sorry to hear that you need another surgery so soon, however, if it will, in the end, make your daily life easier and better, than go for it. Hope the new antibiotic will work for you. Will keep you and your family in my prayers. Keep moving forward dear Jackie, it looks like you have an amazing bunch of people giving you support!
I am one of those people that the risk of infection and problems with a port outway the benefits but do I wish I could have one. But I shouldn't complain there are these amazing nurses that come and use an ultrasound machine, one poke and done. I bet it is much easier for you to have a port because of all of the medications and infusions you have. I go see the cardiologist next month for my POTS and then I just got a punch biopsy done. Hopefully we can find what's going on with my skin. Fingers crossed your surgery goes well
I’m a former dialysis patient, now post transplant and my AV fistula is still intact. I also started with a central line! The fistula has never caused me any problems.
Boy do I know what you're talking about. I had a PICC line for about two years. Had to have it replaced twice due to it coming out too far. No big deal. No other problems. Switched to a port. Had it less than 2 months and I got cellulitis around the port. Had to have it removed, of course. Back to a PICC, other arm this time. I access mine between 1 and 5 days a week, and like you, it needs to be completely reliable 24/7/365. And for me, the PICC works way better for that.
When you were talking about needing to make the decision with your husband and your doctor and your mom, I thought at first you were going to say you needed to make the decision with your husband, your dog, and your mom. Maybe I just thought that because I always consult my dog when making important life decisions 😂
I will be keeping you in my thoughts a prayers. I think it sounds like you guys have come up with a very good plan with backup plans in place and that all you can do... You will make it through this. You are strong and you have a very good medical team to work with and a very supportive family to be there with you and also you have god holding your hand through out all of your ups and downs..
And I'll add, I have MCAS and almost certainly some kind of dysautonomia. Not EDS, though. When I had my PORT removed I used one vicodin later that night, but by next day it wasn't that painful anymore. Hopefully you'll find that too.
You don’t need to apologise for not telling us sooner!! Of course put your health first and we all understand that it can be stressful with everyone commenting their thoughts when you’re starting to think about it yourself (if that makes any sense😂)
My dad had a fistula and he was very skinny. You didn't really notice it unless you touched it (felt like a little motor under the skin). Once it heals, you won't notice it much. Just a little reassurance
Now that your oral intake has improved, do you think you would consider using oral medication in place of some of your iv medications or putting them through the feeding tube?
Her body has a hard time absorbing medications because of her EDS and Gastroparesis. She may be feeling better but those diseases still affect absorption.
She uses the IV medicine because it works faster as it goes straight into the blood stream. She may be eating better but her body still struggles to absorb the medicine through her stomach.
My husband does home hemo dialysis and the developed something called a button hole so he could access with a blunt needle.might be something you look into.
Hi from Colorado. You have the right to share whatever information that you feel comfortable with sharing. We are here to help lift you up, not to add stress to your life. God bless.
Hi Jaquie, I'm sorry you are having such port problems. Your health is yours and you have the ultimate decision to share what you want. Anything that helps you is wonderful. God bless you.
Possibly because the port can stay in place for much longer than a PICC line and is easier to maintain. The port can be a backup to the AV fistula without needing daily maintenance. A PICC line needs daily flushing with saline and heparin to keep from clotting.
Wishing you all the very best, lots of success, rapid healing, no pain, no side effects and God’s most abundant blessings for your upcoming surgery. Remember God in control and he is the best doctor and surgeon and this is why I pray that he’ll guide the hands of your surgeon and bless your surgery and recovery that it’ll be swift and without any problems. May his love and protection always surround you. You and your family are always in my prayers. Please give darling Hippo a cuddle from me. Have a lovely weekend.🐾🐾🐕💖
Jaquie I have heard of AV Fistulas within my chronic illness community. I wish you so much healing and a great outcome for this next step. What a relief that you have a doctor that you can trust to go over your options! It is completely understandable to keep these kind of big decisions to yourselves. Glad you could take the time to figure it out before having a lot of voices “chime in” 😊. I’ve always been blown away by how thoughtful, knowledgeable and strong you are in your decision making abilities, knowing what you need as boundaries and your faith! 💜💜💜
Are you getting a power port? I don't blame you a bit for taking your time in sharing this info. Big decisions in your health take time to process once you make those decisions. They take planning. It's not just your life now, it's you AND your husband. God guides our decisions and we choose to roll with them with the support of our families, then our friends. 🦓💪💜
lifting you in prayer about your decision. My dad's fistula lasted 9 years I am sure it would have went longer but unfortunately he passed away. Blessings to you
Fingers crossed all goes well, especially with that antibiotic. There are a lot of well meaning followers and commenters, but even having skimmed through them, I think most of us totally get why your thought process on this was more personal than public. Not all anecdotes will be widely applicable and not all advice is sound, safe, or helpful. Your care team knows you, your body, and its limits and the most helpful thing we can do as an audience is respect their professional experience and your (very) personal medical decisions. As with all your videos, thanks for sharing. I've never met a chronic illness warrior and I've learned a lot since subscribing.
Very well said and I couldn't agree more. I'm a chronic illness warrior as well and I know some comments are well meaning but it's frustrating to see them question her and her team's decisions.
Jaquie- I am praying for a successful surgery. I love watching you because I feel like I am not the only one going through these things. You are gonna get through this!
I'm sure you'll get the hang of needling your AVF. There are people in my hospital's renal program that not only access their AVF's on their own, but actually run their hemodialysis on their own at home. If they can handle all that, then you can learn to access your AVF. After all, you've learned so many other medical skills already you'll be simply building on the skills you already have.
Jaquie you are such an inspiration. I'm a telephone triage nurse who found your videos about a year ago. I see such positive changes in your health. Seems that the Cannabis medications have really improved your nutrition. I'm in my 60s and have diabetes, neuropathy and some gastric issues but still keep trying to stay independent and on my feet. Watching your videos has given me good practical information that I pass on to others with similar issues. In fact, I'll ask the patients to have a look at your videos to see if they can learn something from them also. Hugs to you, and your family.
Jaquie- just wondering how your mast cell deals with the port? I know a lot of people have major issues with foreign material in their body (I had metal and cement in my skull that I rejected...but I don’t have any mast cell issues) so I’m just really curious how your mast cell disease manages the port without reactions??
I pray for your good health and I will be waiting eagerly for updates from you after it has happened. I really hope this helps you and you recover well. You dont need to explain anything, you figuring things out on your own and with your family was the best thing you could have done. Love you Jaquie!
I'm happy you've found the right thing for yourself. As for the "sharing" issue, please don't ever feel obligated to share anything you don't feel comfortable with. Your grace, flexibility, and determination are a constant encouragement to me.
I've never heard of this before but it sounds great! I'm getting a port soon, But I wish I could get this now. This sounds like a lot of surgery and recovery, you will definitely be in my prayers!
You've got this! This is a lot to deal with, but you're doing awesome (and if you're doing not so awesome, you're human, it's ok). I've never heard of an A/V fistula and I'm a student nurse and I love how I always learn new things from you. Thank you for sharing your journey with us so we can learn and have more awareness of the issues that affect you (especially adorable service dogs!). It sounds like you have a fantastic medical team and I trust that, (since they've taken such good care of you so far) they've made the best decision with you. Good luck! xxx
I'm sorry to hear about your port problems. I've had many myself. 3 ports in 2 years. And another replacement of something within the next year. I fully understand. Hope this new option works better. I will be watching to see how that vascular access works for you and maybe it will be an option for me to discuss when my port needs replacing.
And you will be all healed up for Christmas! What you share is entirely up to you, never feel bad about. We'd be upset if you were in the hospital and we didn't know (all of prayers for you out here), but all and all it is your life. We are honored that you share with us.
I am glad you are making a decision with just you and your family. Sometimes outside influences can just confuse and mess things up. You are going to do great with your surgery.
Jacquie you have helped me so much with my disabilities! You've thought me to advocate for my self and helped me through my surgery. I'm very grateful for your advice. Thank you so much!💙💜
She's already worried about doing all this. Her team and doctors know what's best for her and your comment doesn't help her at all. She's not going to be standing when she accesses or de-accesses so why would she faint?? Also for quite a while her home health nurse will be doing things for her. Stop coming up with things that will only work to scare her please. Your comment wasn't needed nor appreciated.
I also have a shunt (fistula) because my port kept getting infected. Fistula also has its risks, because its an artery there’s always a changes of bleeding when its rupturing and clotting of it needing intervention to get it working again..
As Jaquie Said in the video, Fistulas actually have a lower chance of infection than central line and related vascular access methods. Any vascular access has the inherent risk of infection, but fistula have lower risks than access methods that go straight into the central vascular regions. Source: I am an EMT that transports lots and lots of Dialysis patients, and A/V fistulas are the primary access choice for dialysis.
So glad your getting rid of that port. Nasty things, body does eventually reject them. Jacqui what IV treatments do you need now? I mean do you even need any regular access to veins at this point? Just interested. Sorry you have to go through all this. Wish you didn't need any of this. By the way taking a port out is nothing, they did mine with a local, took like 10 minutes. Putting one in is also a very short procedure, nothing to it. But I know you worry about Mercer. Glad your happy with your choice.
She runs 3-5 bags of IV fluids a week (as she stated in the video) plus has to have immediate IV access (to give herself Benadryl) for when her Mast Cell acts up and she starts having an anaphylactic reaction. So yes, she needs IV access at all times. That's why they're placing a port for her to use while her AVF heals.
You are truly an inspiration to all. Your courage upbeat and positive attitude is to be admired. Praying to our Lord that all goes well and you can have a healthier, peaceful life Jaquie. 🙏🏻🌅
Okay, maybe a strange idea, but what if you had 2 ports? So one week you use the one and the other week you uses the other. Then the port wouldn't be accessed 24/7 all weeks of the year.
I have never heard of an AVF being used in an EDS patient. Are they anticipating a longer healing time (my doctor always doubles recovery times for me) or bleeding/clot risk? I’m super curious about this option. Hang in there Jaquie! So glad you have such a great support system by your side when it comes down to making these difficult decisions. You are in my prayers! ❤️
Curious about this also. My surgeon said it wouldn't be an option for me.
You don't need to explain why you haven't said anything yet, it's ok! You know, it's like we know you and your sweet family from your vlogs but you don't really know all of us. I say that because I wish I could help you and your mom with everything while you have to deal with your surgeries and Judd being gone; but then i realize that you don't really know me and therefore that sounds creepy! And I'm in Texas, so, there's that, too! You at least will have my prayers!
Kara Carta awww!! That was a sweet comment.. I feel the same way! But, I’m in the U.P. Of Michigan.. & I have CP So her family would probably need to help me too.. & that’s not good!🤗✌️
Kara Carta I feel the same way!
I feel the same. You said it so well.
I’m Texan too! I live in Houston
Your health needs are just that - your own. You don't have to explain why you didn't share about this, it is completely understandable. Sending loving and healing thoughts your way as you prepare for this surgery and recover from the last
You remind me a lot of my dad who also had a server disease. I miss him sooo much. I am happy to see you taking care of yourself very well. Keep moving forward. You have my best wishes.
We have a patient at work who needs daily potassium and sodium infusions. They got their fistula placed in their leg and they have both hands to be able to access the fistula themself.
Hope your new adventure is helpful!
Looking forward to next Halloween when you can draw some little eyes for your "arm worm" so it has a costume
This made me feel a whole lot better 😂
Jacque Hermosillo use some google eyes and gel pens to make it a caterpillar
My Dad had a fistula. It lasted 5 years (would have lasted longer but my Dad passed away). His was used for haemodialysis. I wish you all the best with your upcoming surgeries!
My thoughts and prayers are with you!!!! As the spouse of a dialysis patient,, the placement of his fistula was nerve wracking, but he has had no real problems with it and it has been working for more than 8 years....
That is amazing to hear! How long was recovery and how long did he wait until it was formed enough for use? (If you don't mind me asking.)
@@ChronicallyJaquie it was placed in April and they started using in in June, so about 2 months....
He had an IJ Cath for access while waiting for it to heal....
Thank you for that info it really helps (:
i just had to get my port removed for the same reason as in the skin on top of my port had a chronic wound that never healed so the skin turned a gross purple color plus i also had a port pocket infection . i now have a picc line while waiting to get another port placed to make sure there is no lingering infection .
Good luck Jaquie, thank you for sharing your decision with us. Hope it all goes well. Lots of love, cheering you on from Australia :)
Good luck darlin’...I’m here with ya. I had surgery on the 17th, find out Tuesday when the next one is. :( I’m already at number 8. I’m so over it!!
They will take good care of you! Yes, you have struggled with that port for sometime. You may find this will work great, and you will wish you had it along time ago. Prayers all will be well as I think it will be GRRRREEEAAAAT! xoxo
No apology necessary. Will be praying for you that all goes well and for a good recovery from both surgeries.
💙💚💛❤💜
Be strong dear. I will keep you in my prayers . God bless you
I've honestly never heard of an AV fistula being used for IV fluids and Benadryl?
I have a friend with one - used for dialysis - and her arm is always sore. She got a severe infection from it too, which resulted in a very long hospital stay.
Did your Dr ever mention a Hickman? I'm not trying to change your mind d, and I do wish you well, but I'm not sure this AV Fistula will end up being all it's cracked up to be. :/
So sorry girl...I got a call an hour ago to pack my bag and head to admit through ER AGAIN!!! Just had total Gasterectomy, Gall Bladder Removal, Partial Pancreas and Partial Intestine removal end on August. I keep getting blood clots so now my *go to* PICC line had to be pulled ugh! My last J tube got MRSA and I'm down 9 pounds in 2 weeks. Yep I'm right there with ya, either a stent or some kind of dilation has to be done. Unsure why admitting today (probably for meds, fluids) my surgeon is out of the Country until the 26th.
Sorry I didn't mean to make you vlog about me, I'm not a TH-camr and my family and the rare amount of friends I have left don't really "get it".
I will definitely be keeping you in my thoughts...you a much braver and fighter than me! #yougotthis XOXO
Off to the ER I go...I hate saying the words Failure to Thrive but it's better than I'm critically ill and dying ugh! :(
Nadine Miller Sorry that you are going through such a rough time. I will say a prayer for you! All of us chronic illness warriors are strong fighters! You are not alone!
Nadine Miller I had the same surgery you just had in 2010, except that the did not mess with my pancreas. It took me a long time to recover from that one. If ever you need someone to listen, I'm here😊.
@@chaconag well said, we're definitely fighters, and it's good and or comforting to know we're not alone in the fight when we're not doing so hot. Nadine keep up the good fight! Hang in there girl. ❤
Unrelated, but I used to have a g-tube because I had to do tube feedings 3 times a day for years. I got infections so much from it no matter how well I took care of it. The silicon grew mold even though we changed it 1-2 times a month. (Had a g-tube from age 6 to age 15)
I hope the surgery and everything around it goes well❤
This is completely off topic, buut: I started watching your videos some months before my health kinda just went downhill (previously I only had anxiety and depression but then I was diagnosed with endometriosis and recently with fibromyalgia) and my pain got worse every day (I had neck/shoulder pain for many years but now it has kinda spread to my entire body). I really think that having watch your videos and seeing what it's like to live with chronic illnesses helped me out. I'm not saying I was conpletely fine all the time, because my anxiety and depression definitely acted up A LOT when all this was happening, and it still does quite regularly, but I think I'd handle it a lot worse if I hadn't been watching your videos :) And it's just great to see someone else with chronic illnesses managing to get through life, especially when I feel like I'm all alone in this, so thank you :)
i HAVE that AV fistula, in my upper arm, my advice is get the very best vascular surgeon you can find!!!! Also train well to stick
yourself. My arm does not look that bad, but I have seen some that are. But worth it!
I’m here to support you, Jaquie xxxxxxxx
Good luck, and coming to this decision yourself was the best way to go. Great Job!
You know what they say, when it rains it pours. *hugs* best wishes on your upcoming surgery.
So sorry to hear that you need another surgery so soon, however, if it will, in the end, make your daily life easier and better, than go for it. Hope the new antibiotic will work for you. Will keep you and your family in my prayers. Keep moving forward dear Jackie, it looks like you have an amazing bunch of people giving you support!
Wishing you all the best and sending you positive vibes from Australia.
Am I the only one that loves that she talks with her hands
Awe thanks! ❤ A few people have told me they hate it 🤷♀️😅
I do too. I been known to u hook iv's cause i talk so much with my hands
Jaden Jenkins I agree
I think it is how you use your hands. Some do it agressively and to much and I like how you talk with your hands.
I am one of those people that the risk of infection and problems with a port outway the benefits but do I wish I could have one. But I shouldn't complain there are these amazing nurses that come and use an ultrasound machine, one poke and done. I bet it is much easier for you to have a port because of all of the medications and infusions you have. I go see the cardiologist next month for my POTS and then I just got a punch biopsy done. Hopefully we can find what's going on with my skin. Fingers crossed your surgery goes well
I’m a former dialysis patient, now post transplant and my AV fistula is still intact. I also started with a central line! The fistula has never caused me any problems.
Boy do I know what you're talking about. I had a PICC line for about two years. Had to have it replaced twice due to it coming out too far. No big deal. No other problems. Switched to a port. Had it less than 2 months and I got cellulitis around the port. Had to have it removed, of course. Back to a PICC, other arm this time. I access mine between 1 and 5 days a week, and like you, it needs to be completely reliable 24/7/365. And for me, the PICC works way better for that.
When you were talking about needing to make the decision with your husband and your doctor and your mom, I thought at first you were going to say you needed to make the decision with your husband, your dog, and your mom. Maybe I just thought that because I always consult my dog when making important life decisions 😂
We wish you all a he best!!! 🙏🏻💕 Always here to cheer you on!!!!
I will be keeping you in my thoughts a prayers. I think it sounds like you guys have come up with a very good plan with backup plans in place and that all you can do... You will make it through this. You are strong and you have a very good medical team to work with and a very supportive family to be there with you and also you have god holding your hand through out all of your ups and downs..
We love you and keep you in our prayers. 🙏🏻❤️
And I'll add, I have MCAS and almost certainly some kind of dysautonomia. Not EDS, though. When I had my PORT removed I used one vicodin later that night, but by next day it wasn't that painful anymore. Hopefully you'll find that too.
Thank you so much for sharing. Praying for you!
Wishing you well. Hope it all go's well, you got this.
You don’t need to apologise for not telling us sooner!! Of course put your health first and we all understand that it can be stressful with everyone commenting their thoughts when you’re starting to think about it yourself (if that makes any sense😂)
My dad had a fistula and he was very skinny. You didn't really notice it unless you touched it (felt like a little motor under the skin). Once it heals, you won't notice it much. Just a little reassurance
Praying for you and your surgical team!
Now that your oral intake has improved, do you think you would consider using oral medication in place of some of your iv medications or putting them through the feeding tube?
Her body has a hard time absorbing medications because of her EDS and Gastroparesis. She may be feeling better but those diseases still affect absorption.
She uses the IV medicine because it works faster as it goes straight into the blood stream. She may be eating better but her body still struggles to absorb the medicine through her stomach.
Stay strong Jac! All the best!
Your in my prayers Jaquie!!! 🙏🏻🙏🏻🙏🏻🙏🏻
I love seeing videos from you Jacquie. My metabolism doctors and I have been talking about getting a chest port placed for me and I'm nervous.
Of course mine will only be used for a few months access.
Praying for you Jaquie!
Jaquie when I was 8 I was on chemo and after my treatment when I was 9 I got my Broviac taken out and I got to keep my Broviac
You've got this Jaquie !
Thanks for sharing. Wow. What major decisions for you. Keep love in your heart. Cheers from sydenham, on, Canada.
Boo! I've lost 3 ports to skin breakdown also. The first one we could literally see the actual port itself. That was bad! I'm accessed 24/7 also
My husband does home hemo dialysis and the developed something called a button hole so he could access with a blunt needle.might be something you look into.
Hi from Colorado. You have the right to share whatever information that you feel comfortable with sharing. We are here to help lift you up, not to add stress to your life. God bless.
Hi Jaquie, I'm sorry you are having such port problems. Your health is yours and you have the ultimate decision to share what you want. Anything that helps you is wonderful. God bless you.
Out of curiosity, Why did they lean toward a port (instead of a temporary picc line ) for just bridging the gap until your fistula is ready?
Possibly because the port can stay in place for much longer than a PICC line and is easier to maintain. The port can be a backup to the AV fistula without needing daily maintenance. A PICC line needs daily flushing with saline and heparin to keep from clotting.
Make sure it’s not on the border with your armpit 😂
I watch The Frey Life and Mary’s port re-placement happened to be there
YES!!! I thought the EXACT same thing!! You don't want a pit port 😂
And she does watch the Frey Life too, so I'm sure she's talked to her dr about placement 😉
You will feel better when Judd gets home.
Wishing you all the very best, lots of success, rapid healing, no pain, no side effects and God’s most abundant blessings for your upcoming surgery. Remember God in control and he is the best doctor and surgeon and this is why I pray that he’ll guide the hands of your surgeon and bless your surgery and recovery that it’ll be swift and without any problems. May his love and protection always surround you. You and your family are always in my prayers. Please give darling Hippo a cuddle from me. Have a lovely weekend.🐾🐾🐕💖
Jaquie I have heard of AV Fistulas within my chronic illness community. I wish you so much healing and a great outcome for this next step. What a relief that you have a doctor that you can trust to go over your options! It is completely understandable to keep these kind of big decisions to yourselves. Glad you could take the time to figure it out before having a lot of voices “chime in” 😊. I’ve always been blown away by how thoughtful, knowledgeable and strong you are in your decision making abilities, knowing what you need as boundaries and your faith! 💜💜💜
Are you getting a power port?
I don't blame you a bit for taking your time in sharing this info. Big decisions in your health take time to process once you make those decisions. They take planning. It's not just your life now, it's you AND your husband. God guides our decisions and we choose to roll with them with the support of our families, then our friends. 🦓💪💜
lifting you in prayer about your decision. My dad's fistula lasted 9 years I am sure it would have went longer but unfortunately he passed away. Blessings to you
I'm so sorry for your loss 😢 But that's awesome that it lasted so long!!
I’ll keep you in my thoughts! I know it’s a big decision but your doing it for your health! And you can do it!
I’m sorry that you have to go through all that
What kind of camera do you use? Always eager to watch your videos
Fingers crossed all goes well, especially with that antibiotic. There are a lot of well meaning followers and commenters, but even having skimmed through them, I think most of us totally get why your thought process on this was more personal than public. Not all anecdotes will be widely applicable and not all advice is sound, safe, or helpful. Your care team knows you, your body, and its limits and the most helpful thing we can do as an audience is respect their professional experience and your (very) personal medical decisions. As with all your videos, thanks for sharing. I've never met a chronic illness warrior and I've learned a lot since subscribing.
Very well said and I couldn't agree more. I'm a chronic illness warrior as well and I know some comments are well meaning but it's frustrating to see them question her and her team's decisions.
hope it go's well sending love
Jaquie- I am praying for a successful surgery. I love watching you because I feel like I am not the only one going through these things. You are gonna get through this!
You go!! Sounds like a solid plan for the long term
You seem nervous and upset about this. I hope everything will be okay. You have good people surrounding you.
You’ve got this jaquie! Sending you positive vibes ✨
I'm sure you'll get the hang of needling your AVF. There are people in my hospital's renal program that not only access their AVF's on their own, but actually run their hemodialysis on their own at home. If they can handle all that, then you can learn to access your AVF. After all, you've learned so many other medical skills already you'll be simply building on the skills you already have.
Jaquie you are such an inspiration. I'm a telephone triage nurse who found your videos about a year ago. I see such positive changes in your health. Seems that the Cannabis medications have really improved your nutrition. I'm in my 60s and have diabetes, neuropathy and some gastric issues but still keep trying to stay independent and on my feet. Watching your videos has given me good practical information that I pass on to others with similar issues. In fact, I'll ask the patients to have a look at your videos to see if they can learn something from them also. Hugs to you, and your family.
Jaquie- just wondering how your mast cell deals with the port? I know a lot of people have major issues with foreign material in their body (I had metal and cement in my skull that I rejected...but I don’t have any mast cell issues) so I’m just really curious how your mast cell disease manages the port without reactions??
This is so awesome!! Kick booty!!
I pray for your good health and I will be waiting eagerly for updates from you after it has happened. I really hope this helps you and you recover well. You dont need to explain anything, you figuring things out on your own and with your family was the best thing you could have done. Love you Jaquie!
I'm happy you've found the right thing for yourself. As for the "sharing" issue, please don't ever feel obligated to share anything you don't feel comfortable with. Your grace, flexibility, and determination are a constant encouragement to me.
I'm wishing you the best of luck and praying for a speedy recovery. I will light a candle for you on Sunday as well as your family 💗
I've never heard of this before but it sounds great! I'm getting a port soon, But I wish I could get this now. This sounds like a lot of surgery and recovery, you will definitely be in my prayers!
You will be in my prayers during the next several weeks as you prepare for the surgery have the surgery and recovery.
You've got this! This is a lot to deal with, but you're doing awesome (and if you're doing not so awesome, you're human, it's ok). I've never heard of an A/V fistula and I'm a student nurse and I love how I always learn new things from you. Thank you for sharing your journey with us so we can learn and have more awareness of the issues that affect you (especially adorable service dogs!). It sounds like you have a fantastic medical team and I trust that, (since they've taken such good care of you so far) they've made the best decision with you. Good luck! xxx
I'm sorry to hear about your port problems. I've had many myself. 3 ports in 2 years. And another replacement of something within the next year. I fully understand. Hope this new option works better. I will be watching to see how that vascular access works for you and maybe it will be an option for me to discuss when my port needs replacing.
Stay strong Jaquie! Praying for you.
I’m for preying you
🙏🏻🐶🐾🕊⛪️✝️🦉
And you will be all healed up for Christmas! What you share is entirely up to you, never feel bad about. We'd be upset if you were in the hospital and we didn't know (all of prayers for you out here), but all and all it is your life. We are honored that you share with us.
I pray your future surgeries go well. I'm glad there's already a plan in place that will benefit you!
I hope everything goes ok
Prayers being sent!
I'm very confused but happy you have a plan! Good luck!
I am glad you are making a decision with just you and your family. Sometimes outside influences can just confuse and mess things up. You are going to do great with your surgery.
God is with you, and you have a plan to move forward. You can do this!💪🌌 I will keep you in my prayers. 💖
Jacquie you have helped me so much with my disabilities! You've thought me to advocate for my self and helped me through my surgery. I'm very grateful for your advice. Thank you so much!💙💜
Glad you kept it to yourself ur hubby and mom and ur team of drs these recessions are always hard. God bless
just curious.....but...how about dual ports? so you can rotate which one is used. Is that even a possibility?
The thought of a fistula is so scary! What if you were holding to clot and suddenly faint?
She's already worried about doing all this. Her team and doctors know what's best for her and your comment doesn't help her at all. She's not going to be standing when she accesses or de-accesses so why would she faint?? Also for quite a while her home health nurse will be doing things for her. Stop coming up with things that will only work to scare her please. Your comment wasn't needed nor appreciated.
I will keep you in my prayers, I hope you have you a safe and quick recovery. You’re so strong Jaquie.
I also have a shunt (fistula) because my port kept getting infected. Fistula also has its risks, because its an artery there’s always a changes of bleeding when its rupturing and clotting of it needing intervention to get it working again..
I worry about your EDS and the fistula. Fistulas have a high chance of infections. You also can’t have blood pressures on that arm.
As Jaquie Said in the video, Fistulas actually have a lower chance of infection than central line and related vascular access methods. Any vascular access has the inherent risk of infection, but fistula have lower risks than access methods that go straight into the central vascular regions.
Source: I am an EMT that transports lots and lots of Dialysis patients, and A/V fistulas are the primary access choice for dialysis.
Jessica B Versus a foreign body, the risk is waay lower.
With an A/V fistula you still have an arm and 2 legs for blood pressures.
@@beeking7971, exactly!
Gwen Owen legs aren’t accurate for blood pressures
So glad your getting rid of that port. Nasty things, body does eventually reject them. Jacqui what IV treatments do you need now? I mean do you even need any regular access to veins at this point? Just interested. Sorry you have to go through all this. Wish you didn't need any of this. By the way taking a port out is nothing, they did mine with a local, took like 10 minutes. Putting one in is also a very short procedure, nothing to it. But I know you worry about Mercer. Glad your happy with your choice.
She runs 3-5 bags of IV fluids a week (as she stated in the video) plus has to have immediate IV access (to give herself Benadryl) for when her Mast Cell acts up and she starts having an anaphylactic reaction. So yes, she needs IV access at all times. That's why they're placing a port for her to use while her AVF heals.
You are truly an inspiration to all. Your courage upbeat and positive attitude is to be admired. Praying to our Lord that all goes well and you can have a healthier, peaceful life Jaquie. 🙏🏻🌅
Good luck! Prayers are reserved for youu ❤❤
I hope the surgery goes ok I will be praying for you 🤞🏻👩🏽⚕️🐶
Sounds like a big change! Hoping and praying it all goes well 🙏
Okay, maybe a strange idea, but what if you had 2 ports? So one week you use the one and the other week you uses the other. Then the port wouldn't be accessed 24/7 all weeks of the year.
We aren't comfortable with that as that's twice the infection risk. The fistula is a better option for my situation.
I was just wondering, are you still working with Harlow on barking? If you are, how is she doing with it?