FAQ
I don’t mind answering questions at all; as a matter-of-fact, I think it is a good way to tell my story. If you have any questions for me pertaining to kidney disease or otherwise, please feel free to ask. Newest questions will always be added at the bottom.
What caused your kidney disease?
I have a hereditary disease called Polycystic Kidney Disease, so I was born with it. My mom has it, my cousin Monica has it, my cousin Neal had it and my Aunt Alice had it. It’s where cysts grown on and through your kidneys and diminish your kidney function. I knew for sure in 2005 that I had it, but because of the family history I wasn’t surprised by it and I didn’t freak out about it. When I found out in October of 2008 that my function had gone down and dialysis was imminent, that’s when I freaked out. I thought I had about 20 more years, like my mom.
Do you get stuck with needles every time you have dialysis?
No, the type of dialysis I do is called peritoneal dialysis (PD) that has been around since the 1980’s. With PD, a catheter is used to fill my abdomen with the dialysis solution that contains dextrose that pulls wastes and extra fluid from the abdomen when it is drained from my body (after a dwell time).
You often talk about ‘doing an exchange’, what does that mean?
When I began PD (before starting the cycler machine), I did four manual exhanges a day. An exchange consists of draining the old fluid out of my abdomen, filling it back up with fresh fluid and then a dwell time of four to six hours before starting all over again.
Now that you use your machine at night, does that mean you don’t have to do manual exhanges anymore?
Actually, I still have to do one exchange during the day. I am what they call a “low transporter”. I’m not exactly sure what that means but I do know in part that it means that I do not get adequate dialysis with just the cycler. So, at some point during the day I do a manual exchange. I can do it at any time I want, it just has to be at least four hours after I disconnect from the machine in the morning and at least four hours before I connect at night to allow for adequate dwell times.
(July 09) Why did you stop using the cycler at night? Didn’t that free up a lot of your time? As a matter of fact, the cycler did free up a lot of my time vs. doing an exchange four times a day BUT I was not feeling well on a regular basis. My nurse told me that it could very well be because of the cycler. Because I am a “low transporter” (as discussed above), I need longer dwell time (the time the fluid stays inside). With the machine I was doing four cycles every night with about an hour and forty-five minute dwell times. When I am doing exchanges, my dwell times are about four hours. I have been feeling a lot better since I went back to manual exchanges.
Do you have to go to the doctor a lot?
I see my doctor every month at planning rounds. I also go to the dialysis center once a month to have my blood drawn for labs.
What are planning rounds?
Planning rounds are held every month at the doctors (nephrologist) office. On that day I will see my PD nurse, my social worker, my dietitian and the doctor. They go over my blood work, make adjustments and make sure I get the best care I can. I am very happy with my team – I feel that I am well-cared for.
Do you still pee?
It’s funny how much I get asked this question! Yes, I do. No where near as much as I used to but my kidneys are still functioning a little.
You’ve mentioned that you don’t have insurance, isn’t dialysis very expensive?
I believe that kidney disease is the only disease that automatically qualifies you for Medicare, no matter how old you are. It kicks in after you have been on dialysis for 3 months unless you are doing PD, then it kicks in from day one. Since I started PD on December 31st of last year, my coverage started from the first day of December which means it also covered my catheter surgery from December 10th. Medicare covers 80%; I also qualified for Medicaid which covers the remaining 20%. I am blessed and I know it.
Do you take a lot of medications and are they expensive?
I remember when I first began taking blood pressure medication on top of the blood sugar meds I were already taking. I just hate that I was taking more than one med on a regular basis. Now, I kind of laugh about it because I am taking many meds. Now I realize that I do need these different meds to regulate, balance, control, etc. all the different levels in my body and I am thankful that they are available.
Yes, medications are expensive. I kind of freaked out about that after I started seeing the kidney doctor (and before my insurance kicked in) because he was prescribing meds that were insanely expensive. Now, with insuance, my prescriptions cost me no more than $3.20. I pay a few prescriptions out of pocket for my iron pills and my Vitamin D3. I get a monthly SSI check that helps cover those sort of expenses.
How many prescriptions do you take?
Whew! Ok, here’s what I take: daily blood sugar pill, daily cholesterol pill, daily iron pill, daily potassium (horse!) pill, every other day mag oxide pill, daily phosphorus binders (3 with every meal), vitamin D3 pill every week, low blood pressure pill as needed, daily allergy pill. At my last planning rounds, my doctor took me off sodium bi carb – I was taking 6 of those a day! A couple of months ago I was taken off blood pressure (2 pills daily) medication. I feel like I might be making some progress.
What about a transplant?
As of the fall of 09, I am on two transplant lists – one at UAB and one at Vanderbilt. Now we wait!
