I started dialysis in July 2022, this is December and I am already sick of it. Trying to look on the bright side. I’m grateful for life that I’m still here for my children. However I get low mood a lot of the time. Fear of dying, fear of complications and just fear in general. I’m scared all the time.
I had no match in my family except my sister who couldn’t donate due to having health issues herself. I have been told by my PD doctor that my name is on the donor list for kidney but I don’t k ow how long that is going to be so I don’t like thinking about that.
sometimes I feel I’m watching a movie as I’m still finding it hard to process this is my life now.
How Are you guys managing to still live happily despite being on dialysis.
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Imaanforever
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hi, I think we all have our down days, I just tried to make it through one day at a time. It was thinking long term that depressed me with the “what ifs?” Also thinking that at least I had the one disease where I had the means to keep myself alive until a kidney came along. I do believe they are making progress with the artificial kidney and that will be amazing for everyone. I had a friend who started a campaign for me to get a kidney and I did get one almost 2 years ago. Hope I’ve helped you even a little! My faith also got me through. With God, all things are possible!!
Hi!, I’m so sorry you are feeling that way, and I truly feel you. You are right, it is extremely overwhelming at first to get used to all these changes, the doctor’s appointments, the schedules, the diet, the treatment itself, but as time goes by…… you’ll be able to manage it. You’ll do it because all this work makes you live better, despite all, it gives you the chance to be around your loved ones, no matter what. For for and your kids ….. stay strong!, Dialysis is not a death sentence, it is a lifestyle that gives you the chance to live longer, we all have an extra kidney called the peritoneum, use it, talk to your family about your condition, about how you feel, it is ok to ask for help and cherish every single good moment you have. Life doesn’t end when you are diagnosed. It makes you get a second chance. Stay positive, talk to your doctor, to your PD nurse, they can help you as well, and if you still feel blue, don’t hesitate to write, here you can find a lot of people that, like you, at least felt once like you feel right now. Stay strong, I’m sure you will soon find the best reason to keep going, it is worth it!, I’ll be keeping you in my prayers, and will be rooting for you. It is ok to feel blue sometimes. Try to stay positive, one day at a time, as my husband’s caregiver it breaks my heart to see him having bad days, but when he enjoys the good ones….. there’s no better feeling that seeing that smile on his face! we have been on PD for almost 3 years and after a lot of difficult times we are finally having great times, it is possible, it requires a lot of discipline and commitment, but the reward has no price. Our next adventure…. is traveling out of the country for two weeks next wednesday! Believe me, it is possible!, and we are traveling with the cycler, the supplies, medications, etc. 😊
Thank you for sharing your story. Your husband is blessed to have you. I wish mine was that supportive. He’s trying his best according to him. Maybe he’s also overwhelmed about the whole situation.
I try stay positive by not thinking about what ifs and just getting on with it and spending time with my children.
Me and the family travelled this last summer, about 2 months after I stated dialysis. It was a nightmare at the airport with the machine, fluids and ancillaries. We had booked the holiday earlier in the year before I knew I was going on dialysis. I informed the airline but I guess I didn’t provide them with enough information and we paid for it. They airline didn’t want to carry us but after 15 hours at the airport and missing 2 flights, we eventually sorted it out and paid extra to get a new flight. It made me feel so guilty for causing so much stress to my family. However I have learnt to really plan my travel ahead and provide necessary information to avoid all the trouble.
Thank you for your kind words. I’ll try to keep positive as much as I can and keep hoping . Enjoy your holiday and God bless you 🤗
Not sleeping well is a struggle in itself...You should mention to your PD Nurse that you are not sleeping...It may be a Mineral or Medication or is your Cycler keeping you awake ?
EYes...but there may also be a Medical reason for not sleeping...I use to get alot of leg cramps when I first started PD and my Neph recommended Magnesium Malatte about 1 hour before going to bed...it helped my leg cramps but I also realized I slept really good...Please talk with your Clinic about not sleeping well..
And also...make sure your Solution is nice and warm...if you are on the Amia Cycler, there is an option on turning tjat up to a temperature that feels better.. I also keep my head propped up a few inches...this helps keep the Solution pressure off of your chest and easier to breath, which is also important for good sleep..
And when you are worrying tell yourself that it 2 o'clock in the dang morning and I cannot do anything about what is bugging me right now.. but if I get good sleep I can figure it out in the morning with a clear brain
Hey, after a lot of stops and starts, I'll be back on PD this next week and will continue to try to solve issues as they pop up. So far it's been like playing whack-a-mole! But I'm determined to get this sorted out so dialysis is a "part" of my life, but not even close to all of it. My goal is to get dialysis to a point of being second nature, just like eating. Just something a person has to do to stay alive. There are many issues to solve, and I'm sure I will become frustrated, sometimes depressed, sometimes mad at the whole process, but determination is your best friend I do believe in this process. The will to overcome is a necessary ingredient to this new "normal". So if you (and I) can replace those "what if's" with solid answers and solutions to each and every question or issue, then your "movie" will become more like an adventure film, rather than a drama. That's the plan anyway! So talk to this bunch on this forum in addition to your dialysis team, and find the solutions you need, and be a strong advocate for yourself in the process! And by all means, if you need to add a counselor to your "team" to help you with day to day "mood" issues, do so! Your clinic social worker should be able to point you in a good direction to find one that suites you. Sometimes just one meeting with a good counselor every couple of weeks can make a world of difference! Make it a new years resolution to take care of business! Let us know each and every detail of how you are doing and what issues you are facing. Folks can't respond to you if they don't know what your experiencing. It's hard to open up, but it's a very healthy thing do to. Bringing issues out in the open is sometimes the biggest step to take toward resolving them. Take care and let us hear from you. Often! And give some of the ideas that others have posted in response a try and let us know the results.
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