I really appreciate you making these videos. I’m scheduled for my catheter and fistula procedure in a couple weeks then starting dialysis in about a month and have been somewhat lost as to what direction life will take. I’m very worried about having to stop working and what that will do to me financially, as well as trying to decide between home hemo vs pd. It’s all going very quickly and is somewhat overwhelming.
Sorry to hear of your diagnosis. However, know that it's not the end, it's the beginning of new journeys for you. it can be very overwhelming at the beginning. Just take up one challenge at at a time and one step at a time. We have several group support groups in the comments of the each video as well as new group on Club House Audio app which may be of benefit to you to speak with other patients, care partners.
May I inquire as to why you are getting both a PD catheter and a Fistula placed if you are planning on PD? If PD is working, you actually not necessarily to have a fistula since you will not likely need to do hemo.
@@KidneyJourneys They said they wanted to go ahead and do the fistula in case anything happened to where I wouldn’t be able to do the PD, kind of as a back-up plan. They did the home walk-through with yesterday, and the nurse was pushing a little more for the home hemo saying it’s only 12-15 hours a week vs the every night PD, plus being able to move around more. Either way I’ll have to do PD for the first few months until the fistula heals enough to be used, and by that point I figure I’ll have enough experience with it to decide if I want to keep doing the PD or switch to home hemo. I’m fortunate that I have several living donors who have offered to get tested for compatibility, but I’m a light smoker and have to have been off cigarettes for 3 months before transplant.
@@ryanturner404 PD and HHD are different. Its not just a saving of perceived treatment time. I have done al the modalities and PD is the most travel friendly since the equipment would be the lightest and easier to travel with. I did two days of HHD and 1 day non-treatment, but the non-treatment days, I would have maintain the NxStage and PureFlow systems to drain and make new saks which in theory can be left un-attended, but my pure flow always alarmed and stopped in the middle if I was not home to address the alarms and it takes all day to empty and create the new sak. When I did PD, I just slept over night during treatment so no real time loss. Nocturnal HHD is good also if your clinic teaches you to do that. Longer and slower treatment actually removes the solutes better and more reflective of how native kidneys work compared to compressed short bursts of dialysis. But can understand if someone was having to do PD for 12-15 hrs a day that it may not be ideal and less able to do other things in a day -- those folks tend to be rare. I was on 8.5-9 hr with PD. Great to hear about living donors testing for you. Hope one comes through with a match.
Thank you for your question, I am not sure of the details of your situation. However, if you are still under an employer health benefit plan, then those typically would also include Short Term Disability or Long Term Disability. I would recommend for you to check with your Human Resrouces Department on how your specific plan covers and qualifications. If you are still working, often you may not be able to qualified to be approved for SSDI (Social Security Disability Insurance) or SSI (Supplemental Security Income), but you can check with a SSA Case Worker on your individual situation. While you may be denied before approval. Once you are approved, there is ability to go back to work later to earn up to a limit of hour/$$ amount per month and still maintain your SSDI / SSI benefits. That max amount changes yearly based on Federal Law and COLA adjustments. You are also welcome to contact me via DM on various social media apps @KidneyJourneys
Thank you for your question. In the U.S. Medicare is one of the health insurance coverage options that is available for folks over the age of 65 and/or folks with certain qualifying medical conditions, including End Stage Renal Disease (Kidney Failure). It is available through the Federal Governement and for additional details on Medicare, applicatioin process, eligibility, please go to Medicare.Gov
Great questions @Teggy Boy. Persons can have good function and not be in kidney failure (Stage 5 - GRF 15 or below) and live a normal life, work or generating income and not require disability. In fact, part of the requirement for being eligible for disability in the US (SSDI or SSI) is that your GFR is 15 or below and expected to stay in that "failure stage" for 12 month or longer based medical diagnosis. If the "sole reason" you qualify for SSDI or SSI is based on dialysis as your "medical factor" qualification, then one also needs to be on dialysis or have started a home dialysis (PD or HHD) training program in order to meet that portion of the qualification process. There are other factors besides medical as to where one qualifies to receive disability or not. You can find more information and details at the website SSA.Gov/Disability
Hi thanks for the video!My Filipino friend in Chicago started dialysis 4 months ago in Chicago.She has a fistula av port and hopefully they can take her catheter out of her chest soon,they are now testing the port in her arm it was out in a couple of months ago She had the catheter put in at the hospital as an emergency in January.She still works full time as a nanny,but wants to work part time because full time is very tiring and too hard,but she has to survive.Can a person apply for social security disability benefits even if their still working full time?She will be applying for Medicare very soon.Her goal is to get on a kidney transplant list,she has stage five kidney failure.Thanks!
Hope your friend is still fairing well and managing her treatments and symptoms. Thanks for viewing my videos and commenting. Apologies for the slow reply. I have had some computer issues accessing and not on YT everyday.
Thanks for the good info!
Glad it was helpful!
God Bless you brotha ❤️🐐🐐
Thank you.
I really appreciate you making these videos. I’m scheduled for my catheter and fistula procedure in a couple weeks then starting dialysis in about a month and have been somewhat lost as to what direction life will take. I’m very worried about having to stop working and what that will do to me financially, as well as trying to decide between home hemo vs pd. It’s all going very quickly and is somewhat overwhelming.
Sorry to hear of your diagnosis. However, know that it's not the end, it's the beginning of new journeys for you. it can be very overwhelming at the beginning. Just take up one challenge at at a time and one step at a time. We have several group support groups in the comments of the each video as well as new group on Club House Audio app which may be of benefit to you to speak with other patients, care partners.
May I inquire as to why you are getting both a PD catheter and a Fistula placed if you are planning on PD? If PD is working, you actually not necessarily to have a fistula since you will not likely need to do hemo.
@@KidneyJourneys They said they wanted to go ahead and do the fistula in case anything happened to where I wouldn’t be able to do the PD, kind of as a back-up plan. They did the home walk-through with yesterday, and the nurse was pushing a little more for the home hemo saying it’s only 12-15 hours a week vs the every night PD, plus being able to move around more. Either way I’ll have to do PD for the first few months until the fistula heals enough to be used, and by that point I figure I’ll have enough experience with it to decide if I want to keep doing the PD or switch to home hemo. I’m fortunate that I have several living donors who have offered to get tested for compatibility, but I’m a light smoker and have to have been off cigarettes for 3 months before transplant.
@@ryanturner404 PD and HHD are different. Its not just a saving of perceived treatment time. I have done al the modalities and PD is the most travel friendly since the equipment would be the lightest and easier to travel with. I did two days of HHD and 1 day non-treatment, but the non-treatment days, I would have maintain the NxStage and PureFlow systems to drain and make new saks which in theory can be left un-attended, but my pure flow always alarmed and stopped in the middle if I was not home to address the alarms and it takes all day to empty and create the new sak. When I did PD, I just slept over night during treatment so no real time loss. Nocturnal HHD is good also if your clinic teaches you to do that. Longer and slower treatment actually removes the solutes better and more reflective of how native kidneys work compared to compressed short bursts of dialysis. But can understand if someone was having to do PD for 12-15 hrs a day that it may not be ideal and less able to do other things in a day -- those folks tend to be rare. I was on 8.5-9 hr with PD. Great to hear about living donors testing for you. Hope one comes through with a match.
I’ll pray for you Ryan. Get well soon
Which program would be better if you still need to work. And does these programs provide you with health insurance
Thank you for your question, I am not sure of the details of your situation. However, if you are still under an employer health benefit plan, then those typically would also include Short Term Disability or Long Term Disability. I would recommend for you to check with your Human Resrouces Department on how your specific plan covers and qualifications.
If you are still working, often you may not be able to qualified to be approved for SSDI (Social Security Disability Insurance) or SSI (Supplemental Security Income), but you can check with a SSA Case Worker on your individual situation. While you may be denied before approval. Once you are approved, there is ability to go back to work later to earn up to a limit of hour/$$ amount per month and still maintain your SSDI / SSI benefits. That max amount changes yearly based on Federal Law and COLA adjustments.
You are also welcome to contact me via DM on various social media apps @KidneyJourneys
What is Medicare and what is it for ?
Thank you for your question. In the U.S. Medicare is one of the health insurance coverage options that is available for folks over the age of 65 and/or folks with certain qualifying medical conditions, including End Stage Renal Disease (Kidney Failure). It is available through the Federal Governement and for additional details on Medicare, applicatioin process, eligibility, please go to Medicare.Gov
Do you think I can apply for disability if I have one kidney ? Hydronephrosis ?
Great questions @Teggy Boy. Persons can have good function and not be in kidney failure (Stage 5 - GRF 15 or below) and live a normal life, work or generating income and not require disability.
In fact, part of the requirement for being eligible for disability in the US (SSDI or SSI) is that your GFR is 15 or below and expected to stay in that "failure stage" for 12 month or longer based medical diagnosis. If the "sole reason" you qualify for SSDI or SSI is based on dialysis as your "medical factor" qualification, then one also needs to be on dialysis or have started a home dialysis (PD or HHD) training program in order to meet that portion of the qualification process. There are other factors besides medical as to where one qualifies to receive disability or not. You can find more information and details at the website SSA.Gov/Disability
Hi thanks for the video!My Filipino friend in Chicago started dialysis 4 months ago in Chicago.She has a fistula av port and hopefully they can take her catheter out of her chest soon,they are now testing the port in her arm it was out in a couple of months ago She had the catheter put in at the hospital as an emergency in January.She still works full time as a nanny,but wants to work part time because full time is very tiring and too hard,but she has to survive.Can a person apply for social security disability benefits even if their still working full time?She will be applying for Medicare very soon.Her goal is to get on a kidney transplant list,she has stage five kidney failure.Thanks!
Hope your friend is still fairing well and managing her treatments and symptoms. Thanks for viewing my videos and commenting. Apologies for the slow reply. I have had some computer issues accessing and not on YT everyday.