Sun Mar 31 2019 - With a family history like mine, I've done plenty of research on Chronic Kidney Disease ('CKD') as well as Polycystic Kidney Disease ('PKD'). But my opinion is that you can never learn too much and the repetition makes it stick.
So when I heard that the Minnesota Chapter of the National Kidney Foundation was hosting an afternoon seminar I was all in.
There were four separate tracks: early CKD, Dialysis, Transplant and Pediatric. I went to the early CKD/New Diagnosis sessions.
The first session was 'Coping with CKD and Sadness, Despair and Fear' led by a gentleman named Ted Bowman. When he mentioned the name of a book he had written, 'Loss of Dreams: A Special Kind of Grief,' the tears started flowing and continued throughout his presentation.
It's what I need to break through now. I need to grieve the future I thought I had and adjust my plans to include the reality of this disease. I need to figure out how to live my life while accommodating the disease instead of living the disease and accommodating my life.
The second session was all about treatment options: dialysis vs. transplant, in-home vs. in-center treatment, heomodialysis vs. peritoneal. Great information and Abbey Berry from Fresenius Kidney Care knew her stuff cold! The only bad thing about this session was that it was way to short. So much to learn and consider.
The third session on Nutrition really brought home that CKD truly is a personal disease. There are no absolutes when trying to make wise food choices. Everything depends on individual labs as well as presence of comorbidities (two or more chronic diseases). As I've learned, CKD can be genetic (as in my case) or it can be caused by uncontrolled high blood pressure, diabetes and heart disease. It's so important to find a good Renal Dietician (such as Katie Kondziolka RD LD) but the sad fact is that they're hard to find.
The seminar wrapped up with a presentation on Insurance Basics for CKD and End Stage Renal Disease ('ESRD') - in particular, Medicare. All I can say is WOW! So many potential potholes, misdirections and dead ends. My takeaway was to work with the social workers at the dialysis center to make sure you're navigating the waters wisely and take advantage of services such as Senior LinkAge in Minnesota or SHIP/Medigap Helpline in Wisconsin which are staffed with experts on Medicare.
In addition to the great content, the best part of the day was actually connecting with and talking to others that are familiar with the heartbreak and struggles associated with a chronic disease. That was priceless.
So when I heard that the Minnesota Chapter of the National Kidney Foundation was hosting an afternoon seminar I was all in.
There were four separate tracks: early CKD, Dialysis, Transplant and Pediatric. I went to the early CKD/New Diagnosis sessions.
The first session was 'Coping with CKD and Sadness, Despair and Fear' led by a gentleman named Ted Bowman. When he mentioned the name of a book he had written, 'Loss of Dreams: A Special Kind of Grief,' the tears started flowing and continued throughout his presentation.
It's what I need to break through now. I need to grieve the future I thought I had and adjust my plans to include the reality of this disease. I need to figure out how to live my life while accommodating the disease instead of living the disease and accommodating my life.
Nobody can go back and start a new beginning, but anyone can start today and make a new ending. - Maria RobinsonOr to quote Andy in Shawshank Redemption:
The second session was all about treatment options: dialysis vs. transplant, in-home vs. in-center treatment, heomodialysis vs. peritoneal. Great information and Abbey Berry from Fresenius Kidney Care knew her stuff cold! The only bad thing about this session was that it was way to short. So much to learn and consider.
The third session on Nutrition really brought home that CKD truly is a personal disease. There are no absolutes when trying to make wise food choices. Everything depends on individual labs as well as presence of comorbidities (two or more chronic diseases). As I've learned, CKD can be genetic (as in my case) or it can be caused by uncontrolled high blood pressure, diabetes and heart disease. It's so important to find a good Renal Dietician (such as Katie Kondziolka RD LD) but the sad fact is that they're hard to find.
The seminar wrapped up with a presentation on Insurance Basics for CKD and End Stage Renal Disease ('ESRD') - in particular, Medicare. All I can say is WOW! So many potential potholes, misdirections and dead ends. My takeaway was to work with the social workers at the dialysis center to make sure you're navigating the waters wisely and take advantage of services such as Senior LinkAge in Minnesota or SHIP/Medigap Helpline in Wisconsin which are staffed with experts on Medicare.
In addition to the great content, the best part of the day was actually connecting with and talking to others that are familiar with the heartbreak and struggles associated with a chronic disease. That was priceless.
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