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This is my old grumpy lady Zero. Last night I was sat next to her on the sofa as I always do. Then Zero trotted into the living room after being outside! Apparently I was sat next to our neighbours black cat . Z was not impressed! I’m feeling a bit better today. I saw my renal consultant and admitted I was struggling. We’ve decided to try nocturnal dialysis to see if that helps me feel less trapped and gives me more time back in the day. We changed my meds to amitriptyline so hopefully I’ll feel a little less spaced. I’m lucky I have such a great consultant and home dialysis teamwho will do what they can to help. #kidneydisease #kidneyfailure #dialysis #nocturnaldialysis #haemodialysis #todayisabetterday
Day four after the transfusion. Gosh it's been an awful week. I spent most of Wednesday and Thursday sleeping. Hamish did the maths and I slept for just over 18hours both days. I felt so crappy and it was so hard.
With Tuesday being such a long day, I don't think it helped, but apparently around 50% of patients who receive this medication can have quite bad side effects. I have been struggling to eat and drink because it just comes back up again
Feeling a bit more human today thankfully! Not sure if I could keep going as I was. Ugh. I do need to keep reminding myself that this is technically a Chemotherapy drug, so it's never going to be nice to me. I'm cautiously, optimistically thinking that since it has made me so sick, it must have been up too something in my body?! Whether it's what we want it to do or not is a different story!
We still have no idea how long this will take to work, and even if it will. But, we have done it and that's better than nothing. Thank goodness Hamish has been home, and now Mum is here. I think I would be rocking in the corner crying if I had been on my own the last few days. But, as always, Smudge has been right there. She has got to the stage of having to at least be touching me. So she sits on my chest, sits on my feet, or just sits by my head and stares
Hopefully I'm on the up now. I really hope so. Exhaustion levels are high. I will always listen to my body and sleep when I need sleep though. Nasty medications are easier to just sleep away!
Hope you all have a lovely weekend!
This time two years ago was one of the biggest things that I'd have to overcome. The start of having dialysis & have my PD tube fitted was such a scary time for me. I was so ill that even I had days out of the two months in hospital that I actually thought I was going to die.
Although life is still difficult & although there are days that I feel like giving up.. I look back at the photo & just see how far I've come & how much I have achieved even though technically I'm still very unwell.
That was two years ago. And even though I'm still not activated on the transplant list yet, what could happen in the next two years.. well, we'll never know.
I've only got to look forward to the future xoxo
#dialysis #kidneyfailure #ckd #hospital #2years #strong #pdtube #peritonealdialysis #haemodialysis #type1diabetes #T1D #mondaymotivation
To mark World Kidney Day (*cough* yesterday *cough*) here's a lil album of yours trulyNot because I'm a narcissistic fiend, but rather all would not be possible if someone hadn't given me their organs. ○○○○○○○○○○○○○○○○○○○○○○○○○○○○
Kidney transplants are so in the public domain these days, but that can work to their detriment sometimes. It becomes 'someone elses' problem or issue and so people turn a blind eye. People rarely see the positives that can come from it; the transformation that it can make upon someone's life.
○○○○○○○○○○○○○○○○○○○○○○○○○○○○ These pictures reflect some of the memories I wouldn't have had if things had been different; parties, family times, festivals, all but a few. "Life is what happens when you're busy making other plans" ~ John Lennon.
°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°° I've been allowed that opportunity to have a life outside of hospital walls; to be able to travel and not worry how far away from the hospital we are just in case we got "the call", and been able to study away from home. I remember having to study for my GCSE's in hospital, on my chair, next to the haemodialysis machine that I was connected to for four hours x3 a week. Not the best learning environment but sickness limits your choices. Ones that you wouldn't expect ever having to make. Please think of the families you could help and lives you could change. My life has been so enriched and lived and that's down to this donation. Please, share your spare, you do only really need one
️ Halfway through week 11 post op️ Just a wee update, not much has changed, still but we have dropped down to twice a week Transplant clinics. Basically, nothing is changing so they don't need to see me as much. I'm not complaining though, it's an early start to be there by 8am! I do not do morning's! Never been my time of the day. Still doing plasma 3 times a week, plus I now have to have an extra treatment where I go on a dialysis machine and have fluid pulled off. Mon, Wed and Fri are now super draining days! Literally...
It's amazing how when you spend so much time at the hospital you get very familiar with so many different people there. Our favourite security guard who has been around since day one has disappeared but he was a ray of sunshine everytime we saw him. We have met so many orderlies and others who now greet us in the hallways. The other day I was complimented on the fact I was walking and not in the wheelchair, by a guy who takes stock around the hospital. Today Hamish was working so I needed an orderly and one of the first things she said was "Where's your husband today?! Is he not here to push?" Apparently we have become quite well known!
Plus, there are my wonderful and amazing nurses. They are the biggest part of this journey. They are there on my good days, bad days, days where I just cry and they offer big hugs, and days where I just don't want a bar of anything. The nurses in dialysis and Plasma Exchange are part of our lives. We sit and chat all the time in plasma exchange, gossiping and watching morning quiz shows. The dialysis nurses are wonderful because they are still doing my needles for me, they bring me cups of tea and listen to me complain.
We are so thankful for all the lovely people we have met on this unexpected and tricky journey. It makes the world of difference to chat away to someone and they know how you feel. Or to have someone wave and compliment you as you shuffle down the corridor. The world may throw shitty situations at you, but there's always silver linings and these lovely people are our glowing silver linings
Dreaming of a holiday?
Join us on the Big Red Kidney Bus in Torquay and explore the stunning scenery on the Surf Coast Walk lookouts to see wildflowers, forests, rocky cliffs, native wildlife, and the world-famous Bells Beach.
To check out both Victorian and New South Wales locations or to book visit our website.
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#bigredkidneybus #dialysis #haemodialysis #visitvictoria #torquay #holidaydialysis
#Dyalisis - it’s one of the only times I leave hospital feeling worse than when I go in! I still don’t do well with being a #KidneyPatient, although I am down to 2 sessions a week, and have been getting on much better recently with not feeling so ill after each session, today I feel awful and I’ve just slept for 3 hours or so after getting home, and I’m still not feeling great. At least I haven’t been sick today so finding the positives! #MyHospitalLife #Haemodialysis #CancerPatient #Myeloma
One month to the day that my angel of a Mum gives me a second chance at life
It's going to be a very busy and tough month. Mentally and physically but I know I can do it and the end result is worth everything!
The countdown starts now! .
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#kidneytransplant #transplantcountdown #dialysis #kidneys #kidneyfailure #clairessecondchance #organdonation #chronicillness #kidneydisease #invisableillness #haemodialysis #renal #needanangel #renalhealth
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