Dialysis Access Surgery and Recovery | PKD Diaries
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- Опубликовано: 4 сен 2024
- I recently got my fistula surgery in preparation for hemodialysis, and today I’m chatting about the surgery itself, the recovery, and what my next steps are!
Disclaimer: Flavorful language lies within.
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I'm so proud of you for having the strength to share you thoughts and your progress with us you are amazing. And so strong. I'm glad everything is going well.
It's called a bairhugger! The hot air balloon blanket. I use it when I do CRRT on patients (a slow dialysis in ICU.) Good description of thrill.
How horrible you had to stay there for so long. I'm glad you're recovering. Xoxo
You are incredibly brave to put yourself out there like this. You’re handling a tough (that word seems so inadequate) situation with courage, humor, honesty, and grace - I truly wish the best possible outcome for you.
I am learning a lot from your videos. I know this is an old video. But it is important to me even though a different condition from mine. I had my left kidney removed in 2000 because of kidney cancer. 20 yes good. Then Easter day 2021 I was diagnosed with stage 4 kidney cancer in the remaining kidney. I am having immunotherapy. Because of side effects of one of the drugs they started with I nearly died this summer. I am one drug and getting better. The tumors are shrinking as of August. I found your site when I decided to start planning again. I am 73 and have not many activities thanks to covid lockdown and being so sick. However some quilting groups are starting to meet. I quickly realized I need to plan resting days after days for treatment and events. You are helping me understand living with serious illness. Thank you.
Dear lord, fistula is right up there with moist as a word that just shouldn't be used in public conversation, lol! But very glad to know it went well and am always impressed with your honest approach to treatment.
I wanted to say thank you again for sharing this. I've only ever seen the horror fistulas, and it gives me hope to see your reasonable one. I'm sorry that you were in the hospital and dealing with crappy times for longer than expected. It means a lot to this PKD girl to see an honest and real life account of what's going on.
So, I found you through Bullet journal videos and I also have PKD. Im 30 and was diagnosed 3 years ago. I will be following your story.
My dad has had end stage renal disease for well over 10 years (closer to 20) and had been doing PD, at home, for the last 4 years and just started HD, at home, a few months ago. After years of waiting for him to be able to be on the transplant list and find a donor, I decided to donate one of my kidneys and I got tested and everything and we’re a MATCH! He wouldn’t have taken it if he knew it was mine so, I didn’t tell him lol he eventually found out though lol. But now we’re just waiting to schedule the surgery. I wish you the best of luck!
STOP trying to OVERDO Shit and heal. The worst thing you can do is not let your body heal. We love hearing from you on this journey and the planner part of you life. We will survive going a few extra days without a video. :) Take care.
I believe that you're an absolutely amazing woman. You give voice to the persons that don't feel comfortable to share, you are a light and inspiration to those who are also maybe now starting or in the throes of suffering with chronic illness. You show others that even though fear is very real when dealing with any kind of life impacting illness that you can't allow it to paralyze you and even just be thankful for the simplest things-like not falling and mobility. Honestly every video I watch of you I fall more and more in love with your personality and your strength (even when you feel you have none), and just who you are as a person. I want you to be around for a very long time for your kids for Jesse and selfishly for all of us that love you lol but most importantly for yourself, so take it easy, be kind to your body during this recovery and embrace each moment by moment. 😘😘😘😘🤗🤗🤗🤗🤗🤗❤️❤️❤️❤️
I love your videos. The hot air blanket is called a Bair Hugger...I want one too!
I did a belly port put in. I get what you're going through. I finally got my transplant may 18. For me mine were too small due to premature birth. If you'd like I'll be happy to give my side of things
Belladonna Bunny i was born early as well and my left kidney is useless and doesnt show up on ultrasound. I went to the hospital for something unrelated last year and the doctors were like where the heck is your other kidney?? Lol
Thanks for being transparent that's a good thing
I really needed this. Thank you! I’m getting my fistula this Friday. I’ll be under general anesthesia I’m so nervous and scared. Thank God there will be pain meds.
Thank you for posting your very informative video. I pray you get a transplant soon.
💜💜💜tfs, what a dramatic way to start the year, yeah? Hope it's smoother sailing from here on... 💜💜💜
Bless you! I am glad to see that you are up moving around and doing well and that surgery was a success. It was kind of all of a sudden for my dad with his dialysis. He ended up having to get a port put in the side of his neck until his arteriovenous (AV) graft healed. I remember him having to keep a check on it every so often to ensure it kept a pulse. There was also a numbing cream he would have put on his arm an hour or two before each session. He did dialysis 3 times per week and was extremely hungry (hangry more like it) after each session. 😂 This is not an easy thing to go through and I commend you sharing your journey with all of us. 🙏🏽
They did a great job! My sister's you could see a very long tube under her skin and it ran all the way down the inside of her arm. And it would twist around and looked like a snake. I hope you feel better fast :)
I couldn’t need this more right! I just found out today my bio dad has PKD. A whirlwind of emotions. I’ll be scheduling an appointment with a urologist very soon. Thank you for starting this series!
Congrats Fantabulous blessings thanks so much 😊❤😢❤ teach Preach say that put it out there sharing is caring shared
Thanks for sharing. I am also at stage 4 pkd. The information you provided was very helpful.
Well looking at your wounds thru yt they look fine! (I’m a nurse that have seen many wounds from the surgery when they’ve given my patients subcutaneous vein catheter). It’s so interesting to hear you explain how they think about your kidneys, their function and about the fistula since I don’t have that much experience about that more than have sending some patients to the dialysis unit and getting them back from there. I have been to that unit to give patients chemo while they’re there but that’s about it.
I do wish for your fistula to get strong and usable and that your level of pain will dicrease soon!!!
Wow those incisions are longer than I suspected they would be, no wonder you are in u are very brave, yes it had to be done but you have stayed so strong and it is great to hear the updates, love the vlogs!!!! Can't wait until the next one!!! Take it easy x
I have no freaking clue about any of this, and I am very lucky that I don't. But I'm interested in your story (that sounds weird... but go with it) I find it educational in a way? Learning about something that someone else is going through... anyway... I'm glad you're recovering now! I hope everything continues to go will! Keep being strong Cindy!
I love learning new things and thank you for sharing your story! When you were talking about the pr op and surgery I was yep, yep, yep lol I don’t have anything wrong with my kidneys but I am a CHDer with tof ( I was born with 4 heart defects and I have a pacemaker) I know how it is not moving an arm for awhile or lifting anything...I hope very speedy recovery and your in my thoughts and prayers!
Surgery is tough - but you will definitely turn a corner and feel more like yourself soon! Speedy recovery!
Hang in there! This is good prep for transplant time. My first transplant and all the procedures leading up to it was nerve racking and all that stress made pain levels worse. The more you can stay relaxed, reasonably focused on the happy ending in all of this, and accepting of your limitations, the easier it will be. Hard to do, but it will truly bring you peace. What got me through the pain, frustration with my limitations because of my physical wounds from so many procedures, ports, surgeries and seemingly endless hospitalizations and waiting time for both transplants, was having a wicked sense of humor. I would make jokes about myself around my doctors or ask really ridiculous questions just to see if they were really paying attention to me as a person and not as a diagnosis.The more I could laugh with my medical team and find my people who could appreciate my sarcasm and wit, the happier I was and the less the pain and fatigue got to me. Mood over mind! You already have the wit and humor and through RUclips you will always have people to support you, so enjoy those twilight naps, drink those nasty procedure concoctions like you are slamming Moscato, hold your head high, and embrace the journey because the other side of how good you feel after transplant is worth every moment of pain, every tear, every frustration, and every disgusting medication or drink they give you. After my two liver transplants with their big old peace sign or Mercedes incision engraved in my chest and abdomen, I totally get how hard the pain can be. But if you have put up with shitty kidneys for this long, I know you are strong enough to beat this! Thanks for sharing your experience. After my transplants and so many years on the anti-rejection meds that kill your renal system, my kidnies have been through a lot and odds are I will be needing a new one in the next 10 years. You go girl!!
So happy you’re recovering. Leave it to Cindy to have an “extra” surgery. ❤️
I had my kidney transplant 8 years ago. I very grateful that I didn't have to go on dialysis. Sending you love and positive thoughts.
I should wait to the end to comment in case you mentioned this but make sure before you start dialysis your doctor orders you the numbing cream and spray. You apply the cream about an hour before dialysis and the spray right before they insert the needles. My fistula is in the same spot on my right arm, just above the elbow and it's a pretty sensitive spot. Those 2 things will be your best friends! Thanks for sharing your story and your journey. So many people think they understand what dialysis is or what kidney failure is but usually they only know pieces of it. By sharing your story, you're helping as well as educating people about everything. I hope you heal quickly but don't rush it! :)
And yes, I agree with you 1000000% about making sure if people are headed toward kidney failure, make sure their Dr's are making plans for dialysis access as soon as possible. I was on dialysis for 19mos and I am definitely a harder case for different reasons but I went through pretty much all of those 19months with a tunneled cath (what you were talking about toward the end) because of issues with my accesses....not fun. Planning ahead is imperitive. i just celebrated my 11yr transplant anniversary last Thursday and sadly I'm back in kidney failure again. My sister is HOPEFULLY going to be able to donate and we have all of her testing coming up in the next few weeks because they want to rush things. If she isn't going to be able to donate, I will then have surgery to place the PD catheter. That's the only option I have because all of my accesses and veins in my upper body are trash and unusable. Fingers crossed she passes all her tests!
Thank you, Cindy, for taking us on your journey. My husband has CKD and his nephrologist believes that my husband Jim will need dialysis within the next 2 years so watching you is helping me to prepare for this with him and to better understand how to be a support for him. I wish you all the strength and good vibes.
My mom is in dialysis for kidney failure. Mom had to have the central line- it’s not for the faint of heart. Bless you!!
So sorry you have t go through this. Thank you for sharing. It is fascinating. Just wish it dint have to happen :-(
Love that you are updating and telling your story a bit more. I have followed you for a while and knew there was something wrong with your kidneys but not sure what exactly. My mother has end stage kidney (she is 46) but she has lupus (for 26 years) she has had 4 fistulas and several catheters she has no more options for access n on been on the list for 11 years now. Im sorry your recovery took long. It didnt sound pleasant. I can relate soo many appointments so much prepping! I've been with her everystep of the way. Good luck on your dialysis treatments! I love it..."
It fucking hurt!" Haha
I hope your mom gets a transplant soon. My sister has had 2 now because of her Lupus. She was diagnosed 35 years ago.
I love your candid openness and demeanor about something that is so personally challenging. You are one hell of a tough lady that I've admired for a longtime in the planner community. I want to thank you for sharing your experiences. I am a long term rehabilitation nurse that is feeling for the thrill and listening for the bruit on my patients every single day. I am just blown away that I have the privilege to take care of people at their most vulnerable and frail conditions and witness such amazing medical recoveries and treatments. You are dang strong, talented, smart, hilarious and endearing :3 and I'm pissed off you had to get a fistula at such a young age, then on top of that go through the double surgeries and recovery. May you continue on your healing path without complication.
Hugs and good vibes girl. I’m rooting for you.
I had a surgical procedure done a year ago (with general anesthesia) and I hear you on that warm blanket with the hot air, OMG. Only thing keeping me comfortable in a freezing cold operating room where I was mostly naked lying on a hard gurney. XD
Thank you for taking the time to share your experience- sending you some rad happy fuzzy energy!!
So glad you are doing ok. Surgery is never fun, but in the long run you will be thankful for it.
I’m so sorry that you’ve been in so much pain. Seems like you’re recovering pretty well, which I am happy to see. I totally feel you on wanting the warm blanket thing. Those warm blankets are the greatest thing ever!
Thinking of you and sending all you are in need of ...and warm and gentle hugs.
I'm thinking of you and keeping you in my thoughts and prayers. You are a warrior woman! So strong.
Thank you for letting us know how you are. I am glad despite the setbacks that you are doing well and are in good spirits. I will continue to keep you and your family in my thoughts!
I am so glad the operation went well! Glad to see you still be slightly optimistic about it all. That recovery always seems to take a long time. Almost two years ago I had a Gastric Bypass and it took me about 3 hours to wake up after, which was worrying the nurses apparently. I on the other hand really enjoyed that extra long "nap" lol. You are doing great! Keep working on getting stronger every day and don't feel guilty about resting a lot if you need to! You're an inspiration to us all! ♡♡♡
great explanation! good, healing vibes to you!
I'm glad you're healing well. I've been keeping you in prayer Cindy.
You are doing well. My husband wasn’t prepared for dialysis as it came on faster than expected, and he had a central line for 10 weeks, while they attempted 4 different fistula creations. The third lasted for 2 weeks before it ruptured and he was rushed into surgery while still hooked to the machine. The final fistula was a double loop in the centre of the forearm which lasted until his passing 8 years later.
Some advice from someone who dialysed her husband in both the hospital and for 2 years at home, unless you have someone who knows what they are doing and have at least a level 2 in first aid, do not do it at home. As dialysis will over time affect the functioning of the heart, and you could go into cardiac arrest while on dialysis, as my husband did twice, before I told the medical team to send him to a dialysis unit for the treatments, as it was 5 hours, 3 times a week. But more importantly it is extremely stressful on the person maintaining and monitoring the machine and patient, not just before during and after (which equates to about 7-8 hrs each treatment) but maintenance throughout the year. Also, no animals, must be sterile and clean at all times, as it is a direct access to the organs and infection rates with at home dialysis can be quite high.
I don’t want to scare you, but after doing at home heamodialysis for over 2 years, I was relieved as was Donald when we went back to the hospital, because in that time, It was like a full time job on top of been a full time career and suffering from both severe physical disabilities myself. I did manage and actually ran the dialysis for Donald in hospital for 6 of the 8.5 years he was on dialysis. Unfortunately the last 2 years, my illnesses made it impossible for me to continue doing it myself, and I had to hand control over the to nursing staff at the hospitals dialysis unit, that was so hard for both Don and I, as I felt I had failed him.
I am not telling you this for sympathy, but to help you understand the toll it will have on both you and your family.
I love your bravery, and wish I could afford Patreon, as I love your content and wish I could get more and support you through the live chats, etc. Anyway, thanks for listening to the ramble, hopefully this can provide some insight from someone who has been there (sort of! 😉).
Gentle hugs, Stacey
As always love you honesty, openness and willingness to keep it real. Hope you continue to heal as expected and no more set backs.
I get vasovagal response after surgery too! They we're about to put me in the car after I had an external fixation for a broken wrist, I almost passed out. They had to bring me back in for more fluids. I think it helps me to have them give anti-nausea meds before they putting me under, to avoid the vasovagal response.
I hope you feel back to your normal self soon.
Hugs to you and prayers that everything from here on out goes smoothly. My dad had a fistula on his chest near his shoulder for dialysis, it was interesting and terrifying to see. Good luck to you.
Thank you for sharing this with us! I understand how crazy and nerve wracking surgery can be. I just had emergency gallbladder surgery. So glad you’re managing well day by day 💖
Glad to hear that you are making progress, but take it easy. Keeping you in my prayers!
Much love to you Cindy!!
Cindy, I’m glad that procedure is behind you. What a shame you have to deal with two surgical sites on your arm. You’re doing great girl, my thoughts and prayers are with you. Please don’t overdo and take care of yourself.
Thank you for doing this. My brother had to go through dialysis some years ago & was not eligible for a transplant due to his heart problems. I would have liked to be able to hear from someone I trusted about the fistula surgery and all the things you go through afterwards. I'm sending tons of good healing energy your way.
I wish you all best
You poor thing. I have had many surgeries and some of them have been difficult. I know that helpless/demoralized feeling you talked about. Lots of love!
You are amazing! I’m sorry you had to go through that. Just know that through your video you are helping other people know that they are not alone their journey, while educating others on what people with PKD have to go through. I pray you have a speedy recovery. My thoughts and prayers are with you . Hugs and support are yours always from me. ❤️
You are amazing to share all this information with us. Thank you, Cindy, and I hope hope hope the pain in your arm begins to diminish over the next few days.
My mom does peritoneal dialysis at home: fistula with cadaver artery for a backup for if she needs the hemodialysis in the future. Sending you hugs!
I’m praying and rooting for you, Cindy. You are the bravest and strongest person I know. You are so loved.
I am going to encourage my patients to watch this series of yours. We spend a lot of time advocated for accesses over CVCs but it's most effective when they hear it from someone who has gone through and your honesty is so important. So thank you. Also, did they give you a stethoscope so you can listen to it? Ask them the next time you have a follow up, the cheapest stethoscope works just fine. But listening every day can help you keep track on how well it's working. :)
Your doing a great job Cindy, my thoughts and prayers are with you through all of this. Thank goodness my PKD is not as bad and doing ok. Hate this disease, lots of family suffer from it too.
The thrill....heh. It’s awesome that you’re taking the time to explain all of this. I always get really excited when I see you’ve posted a new video, even when it isn’t planner shit. Hope your recovery improves and the dialysis is helpful. I had an aunt with problem kidneys; luckily we had a family member match. It was great having her over for dinner, though, because it was the only time we could get all her sibs to eat vegetables! We told all the small kids at the her dialysis scars were from a bar fight, so don’t mess with Auntie. Good way to get them to eat their vegetables, too.
I couldn't get through this video so I wanted to leave a comment to let you know how much I appreciate you and wish you the very best going forward with dialysis.
Thank you for sharing this Cindy! I related so much to the surgery stuff, I had surgery 5 years ago now on my new shunt. I had a lot of painkillers too.
I am glad you’re doing this. It’s really enlightening and I think it’s very informative!
Best wishes Cindy! Glad you are getting over the surgery. Respect your body's need to heal and take it easy please. Hugs!
Thank you for sharing.
I'm glad you didn't need to get a central line. I've had a variety of them, and they massively suck.
I am truly glad that everything went well even though the timing was longer the outcome is all I hope for. Thank you so much for the share. I am here for your next video. Tight long hugs are coming your way.
I can’t pee in front of people either. Public washrooms, even at work is stressful. Surgery sucks even ‘easy ‘ ones. 💙💗💗💗💗💙
I'm so happy you're doing well and I hope you feel better each day. Thank you for sharing your PKD diaries with us. Wishing you the best, always!
Thanks for sharing this...
WHoaaa I clicked on your page (on accident tbh) through my subscriptions list and saw this the minute it was uploaded! Exciting! I've been hoping you'd make this series as long as you were comfortable making it.
I am glad that you are doing better! Sending good thoughts and vibes your way. Have a great weekend Cindy!!
I’ve heard the bruit and thrill before and as a nurse it’s so cool!!
I had diloded after a dental surgery went wrong, and the whole left side of my face got infected and swelled until I couldn't open my eye. It definitely helped with the pain, and made me light headed. 😋
Thank you for sharing your journey. Sending healing thoughts and prayers for great news at your next appointment.
Gosh Cindy, thanks for sharing. I’ve become very aware of kidney health since I was diagnosed with Type 2 diabetes so it’s interesting for me to follow along your progress. I hope you feel better soon.
It's great to see you up & good to hear about your procedure. Dilaudid is some pretty good shit! I've had it before after a colon surgery I had & it does work a lot better for the pain, but you're right...it will send you to a much different place, real easy like...LOL!!! Don't overdo it & take your time to heal. Your health is MUCH MORE IMPORTANT than any IG post or YT video & I have to believe that NO ONE would hold it against you for taking some time off. I'm keeping you in my prayers & I really hope you continue to recover well & are back to the 'ole spunky Cindy we all know & love real soon!!!
Thank you for sharing your experiences. Big hugs to you. Hope the pain subsides soon.
My brother has issues with his kidneys and actually just got out of the hospital after being in renal failure, not for PKD, the doctors actually aren't 100% sure why, especially with him being so young at just 21 years old. Such a scary and life-changing process. He will have to be on dialysis until he gets a new kidney (or until he dies, which my father almost punched the doctor in the face for saying lol, just poor wording on his part). It's really inspiring for you to share your health journey with us and I thank you for it. I actually just learned what a peritoneal was the other day because my parents are considering it for my brother (he is also autistic so they make his medical decisions for the most part). You are so strong!! Love you as always Cindy! And thank you again for sharing your story!
Hello! Do you happen to know if the doctors looked at your brothers calcium levels? High calcium can cause kidney failure over time if it goes untreated. The doctors are pretty sure that is what caused my kidney failure. I was 23 when I was diagnosed with kidney failure and I had no knowledge of kidney problems until then. I do peritoneal dialysis at home and honestly love it! I hope your brother feels better!
Oooh! Girlfriend take care of yourself. Picks are bad enough that's more. Thank you for the extra info. One day at a time. Don't hurry, rest. People underestimate the power of sleep it's when the body really heals it's self.
So happy to see your face! I am glad that you are recovering and please take it easy !
So good to see you!! I'm glad you're doing well, but sorry you had to deal with the extra ickiness to get here. Take care of you, please don't push yourself (as hard as that can be to not do some times)!
Sending the best of thoughts, wishes and positive vibes with lots of love chicky! Tyfs! ♥
Praying for you girl. Hang in there.
Wow. You have gone thru a shit ton girl...phew! Sending lots of love love love and prayers!
Thank you for sharing Cindy, I send you a lot of love cause you are so strong already, you just need to remember it on the daily. I hope you keep recovering and that your pain keeps getting less bitchy ❤️
Thanks for sharing you are so brave!!
Sending super positive vibes! Sorry for the complications, but glad it's starting to work out.
you. are. amazing. AMAZING!
Thank you for sharing in such an informative way, I had no knowledge of PKD or fistulas before this.
Sending you lots of love and well wishes. X
I was expecting a worse incision, but it doesn't look to bad. Painful...yeah. I can see that. It's in a bad location. I just happy to hear your voice and see your face and know that everything is going well, considering. Please take care of yourself. If you need to rest, rest. I know with chronic illness, it's hard NOT to push ourselves if we are having a good day or if shit needs to get done, but.....it won't get done if you aren't around, so self care is most important at this point. If u ever need to chat, I'm here.
Thank you for sharing. I am so glad you are healing.
Thanks for posting this Cindy. I’m glad the surgery is done. I’ve been watching you for years, and I feel like you are my online (not creepy) friend and really wanted to know how it went!
Thanks for sharing your progress and its nice to see you.
Thank you for sharing this, it's fascinating. I hope the pain goes quick and the fistula is successful
I hope your pain and discomfort subsides soon! Take care.
Looks like you’re healing well! Take it easy girl!💞
Funny surgery story: I had my tonsils out at 22 (0/10, do not recommend) and as I was waking up from my anesthesia after my surgery there was a nurse who looked like my best friend. So I started calling out to her, calling her Erin and asking why she was there. Wasn’t my friend. Just a nurse, but her name was also Kelsey. 😂
Your an amazing women. Thank you for sharing your life with us. I wish you continued progress.