Polycystic Kidney Disease (PKD) Support Group
Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.
I haven't been on here really at all lately. We moved from NC to MD last summer after my husband was medically separated from the Marine Corps. We just moved again to another city in MD because it's a little safer, better demographic, quieter, and it's a townhouse rather than an apartment.
Last summer I was dealing with a lot from the transitioning back to civilian world and two of my great grandparents died within two weeks of each other at the end of July and beginning of August. I also had a miscarriage (12 weeks when it started, but fetal demise was 6.5 weeks) in September. I ended up hemorrhaging and needing emergency surgery to stop the bleeding. They were very close to doing a blood transfusion. And right before that we had to have one of our 7 cats euthanized because he had end-stage congestive heart failure and there was nothing else we could do for him - he was struggling to breathe really bad and couldn't live even a halfway decent life. Anyone who knows anything about me knows how much I adore my cats (maybe borderline obsessive). And Nanny and Paw were two of my biggest role models. As for the miscarriage, we had tried for 8 months before I got pregnant. We were so happy to find out I was pregnant and to have that loss on top of all the other losses and changes was overwhelming. We named the baby Skyler (we didn't know the gender) and did some other things in the baby's honor to help with the grieving process. We also had a pathology test completed and they said they did not see any genetic cause (we basically got the "these things happen sometimes" answer, which is really not an answer at all). I suspect it was from the overwhelming stress of everything else that was going on.
For those of you who haven't been on here long enough to know much about me, I'm in school to be my BS in elementary education. I have three classes left and then I can start student teaching which is 12 weeks, full-time. So that's school.
I also got a job tutoring online. Mainly I edit essays and help people with formatting styles. It's not very consistent, but gets me in the field and earns a little extra cash while allowing a flexible schedule and letting me stay home with Lori - who is two now.
Lori is learning lots. Her motor skills have picked up (she was a little behind at first and needed an early intervention specialist - for which she no longer qualifies because she has surpassed their expectations). She learns new words almost every day (meaning Mommy and Daddy have to watch what we say because it's all repeated). We found out she is allergic to eggs, which is likely why she was ever delayed in the first place. Now that she is off eggs (harder than it sounds - eggs are in almost every processed food), she is having a growth and development spurt all at once. Hopefully we can incorporate potty training in this and it will go smoothly. Fingers crossed.
The craziest thing she has done lately is sticking a raisin really far up her nose. Which required tweezers with a light on them (handy little tool). I was afraid it was going to turn in to an ER trip, but luckily I was able to get it out. It was all squished and misshapen from being so far in her nose.... gross....
Obviously by the title of this post you can see where this is going. lol. I'm six months pregnant with our second little girl :) Her name will be Elliana (a feminine twist on Paw's middle name, Ellsworth). The name, we found out, also means, "The Lord has responded" which I think is fitting considering all the praying that has gone in to making this little one.
I had the anatomy scan a few weeks ago and the doctor was saying he wanted me to come every two weeks to check the baby's kidneys because of my PKD. Well, clearly he doesn't know how PKD works. I explained how it would be exceedingly unlikely to see anything on this baby while she is in the womb, or even for years after that. That my plan for my kids is to encourage lots of water drinking, a healthy, balanced diet and exercise (Lori is great about this - all she drinks is usually water and now practically no processed foods, she is not very picky at all. And she is crazy active - I know people always say all toddlers are active, but she takes it to a new level, which people realize when they see how fast she runs and all the other physical activity she does). Anyway, then he was pushing genetic counseling. I really don't think a genetic counselor is going to tell me anything I don't already know about the genetics of PKD. I may not know everything about PKD. But I do know there is a 50/50 chance my kids could have it. One might have it, both, or neither. I know the only way to know for sure is genetic testing, which i will not do for my children unless and until there is a reasonable treatment or cure or they are otherwise having symptoms or a reason to be checked (i.e. one needs a transplant and checking for matching - when they're older of course).
Then he was saying for me to do a 24 hour urine sample every two weeks. I think this is excessive. From my understanding, this tests for urine production - as in, the amount of urine produced (which may not give an accurate picture for a PKD patient anyway). If they really want to check my kidney function, I'd say they can check my blood. Although, many people with PKD don't even know it during their childbearing years so I don't think this test is a top priority on my list.
Oh and weird thing - while doing the ultrasound for the baby, I guess curiosity took over the doctor and he checked out one of my kidneys. He was saying the cysts didn't even look that bad and there wasn't that many - although the kidney is slightly enlarged. Well, back when I was first diagnosed they were saying both kidneys were completely covered in cysts. So it sounds like there are less cysts now than when I was first diagnosed. I'm wondering if the pregnancies affected my kidneys in a way that caused fewer cysts to form while squishing out some of the ones that were already there. I do know during each pregnancy I drank so much more water than usual, so maybe that had something to do with it. Or the decrease in blood pressure I personally experience with pregnancy. Although, I can't say will 100% certainly that there are fewer cysts since I don't have the previous results on hand to compare and it was different doctors and ultrasound machines (which can vary drastically in quality). Every time I have had my function checked it was normal so that hasn't been affected. It'd be nice if the number or size of the cysts are decreasing though for obvious reasons. Hopefully it will stay on that path.
Last summer I was dealing with a lot from the transitioning back to civilian world and two of my great grandparents died within two weeks of each other at the end of July and beginning of August. I also had a miscarriage (12 weeks when it started, but fetal demise was 6.5 weeks) in September. I ended up hemorrhaging and needing emergency surgery to stop the bleeding. They were very close to doing a blood transfusion. And right before that we had to have one of our 7 cats euthanized because he had end-stage congestive heart failure and there was nothing else we could do for him - he was struggling to breathe really bad and couldn't live even a halfway decent life. Anyone who knows anything about me knows how much I adore my cats (maybe borderline obsessive). And Nanny and Paw were two of my biggest role models. As for the miscarriage, we had tried for 8 months before I got pregnant. We were so happy to find out I was pregnant and to have that loss on top of all the other losses and changes was overwhelming. We named the baby Skyler (we didn't know the gender) and did some other things in the baby's honor to help with the grieving process. We also had a pathology test completed and they said they did not see any genetic cause (we basically got the "these things happen sometimes" answer, which is really not an answer at all). I suspect it was from the overwhelming stress of everything else that was going on.
For those of you who haven't been on here long enough to know much about me, I'm in school to be my BS in elementary education. I have three classes left and then I can start student teaching which is 12 weeks, full-time. So that's school.
I also got a job tutoring online. Mainly I edit essays and help people with formatting styles. It's not very consistent, but gets me in the field and earns a little extra cash while allowing a flexible schedule and letting me stay home with Lori - who is two now.
Lori is learning lots. Her motor skills have picked up (she was a little behind at first and needed an early intervention specialist - for which she no longer qualifies because she has surpassed their expectations). She learns new words almost every day (meaning Mommy and Daddy have to watch what we say because it's all repeated). We found out she is allergic to eggs, which is likely why she was ever delayed in the first place. Now that she is off eggs (harder than it sounds - eggs are in almost every processed food), she is having a growth and development spurt all at once. Hopefully we can incorporate potty training in this and it will go smoothly. Fingers crossed.
The craziest thing she has done lately is sticking a raisin really far up her nose. Which required tweezers with a light on them (handy little tool). I was afraid it was going to turn in to an ER trip, but luckily I was able to get it out. It was all squished and misshapen from being so far in her nose.... gross....
Obviously by the title of this post you can see where this is going. lol. I'm six months pregnant with our second little girl :) Her name will be Elliana (a feminine twist on Paw's middle name, Ellsworth). The name, we found out, also means, "The Lord has responded" which I think is fitting considering all the praying that has gone in to making this little one.
I had the anatomy scan a few weeks ago and the doctor was saying he wanted me to come every two weeks to check the baby's kidneys because of my PKD. Well, clearly he doesn't know how PKD works. I explained how it would be exceedingly unlikely to see anything on this baby while she is in the womb, or even for years after that. That my plan for my kids is to encourage lots of water drinking, a healthy, balanced diet and exercise (Lori is great about this - all she drinks is usually water and now practically no processed foods, she is not very picky at all. And she is crazy active - I know people always say all toddlers are active, but she takes it to a new level, which people realize when they see how fast she runs and all the other physical activity she does). Anyway, then he was pushing genetic counseling. I really don't think a genetic counselor is going to tell me anything I don't already know about the genetics of PKD. I may not know everything about PKD. But I do know there is a 50/50 chance my kids could have it. One might have it, both, or neither. I know the only way to know for sure is genetic testing, which i will not do for my children unless and until there is a reasonable treatment or cure or they are otherwise having symptoms or a reason to be checked (i.e. one needs a transplant and checking for matching - when they're older of course).
Then he was saying for me to do a 24 hour urine sample every two weeks. I think this is excessive. From my understanding, this tests for urine production - as in, the amount of urine produced (which may not give an accurate picture for a PKD patient anyway). If they really want to check my kidney function, I'd say they can check my blood. Although, many people with PKD don't even know it during their childbearing years so I don't think this test is a top priority on my list.
Oh and weird thing - while doing the ultrasound for the baby, I guess curiosity took over the doctor and he checked out one of my kidneys. He was saying the cysts didn't even look that bad and there wasn't that many - although the kidney is slightly enlarged. Well, back when I was first diagnosed they were saying both kidneys were completely covered in cysts. So it sounds like there are less cysts now than when I was first diagnosed. I'm wondering if the pregnancies affected my kidneys in a way that caused fewer cysts to form while squishing out some of the ones that were already there. I do know during each pregnancy I drank so much more water than usual, so maybe that had something to do with it. Or the decrease in blood pressure I personally experience with pregnancy. Although, I can't say will 100% certainly that there are fewer cysts since I don't have the previous results on hand to compare and it was different doctors and ultrasound machines (which can vary drastically in quality). Every time I have had my function checked it was normal so that hasn't been affected. It'd be nice if the number or size of the cysts are decreasing though for obvious reasons. Hopefully it will stay on that path.
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
life has had its ups and downs for you but I'm glad for your good news and sad for your down.
I recently recommended the recipe group you started, haven't even been there myself but will soon as I am finished here.
glad all is working out well with your daughter and hope your pregnancy goes well. hope all is good with your husband, Jose (I remember that) and his medical issues get resolved.
good to have you back, stick around.
But a big part of why I wasn't on much was because I couldn't focus long enough to understand what was going on around me. And I basically forgot about the site for a while.
Love,
Norma ...
I'm on the oposite end of the spectrum dealing with both menopause and kidney failure that basically started at the same time. I tried to manage the menopause with exercise and eating well. But I had to turn to hormone replacement and antidepressant to manage the mental health aspect of menopause.
I have to agree with you that a 24 hour urine collection every 2 weeks seems excessive. It would be pretty aggravating.
Both of my children have inherited polycystic kidney disease from me. My son had ultrasounds done while still in utero. His kidneys were found to be enlarged at that time and so PKD was strongly suspected.
At age 3 both of his kidneys were found to be covered in small cysts. Luckily he really hasn't had any problems with his kidney function. But he did need to be treated for high blood pressure early at 19. He is 24 now and is stable.
My daughter on the other hand started having problems at age 8. Her blood pressure was sky high and she ended up with hardening of the left ventricle of her heart. This was resolved with good treatment of her blood pressure.
She is 17 now and her function is still good. She continues to be treated for blood pressure. Overall she hasn't had too many issues. Although there have been a couple of cyst ruptures.
She has started to complain of kidney pain which is heart breaking for me because I have suffered from severe pain for some years now. However her kidneys are enlarged and very cystic so it is not too surprising that they are bothering her.
I didn't used to be aware that children could be active with symptoms of ADPKD until my daughter had started. It is certainly not the norm. It's great you are feeding your daughter healthfully and encouraging water. My daughter eats quite healthy as well.
I hope this pregnancy goes smoothly for you. I didn't have any kidney related problems with either of my pregnancys. Take care
Part of me is wondering if I should put a limit on her water intake because it seems be causing her to eat less. Although she doesn't eat hardly any processed foods (egg allergy makes processed foods a no-no). So maybe she is simply getting enough nutrients that she doesn't need to eat a lot.
She's super active and just had a growth spurt. So I guess it's all fine.
She has been really cranky the last couple days. But her Daddy just got a new job so our schedule is thrown off. Plus we realized soft breads have eggs so she's probably not been feeling well... opps.... It's difficult because labels don't always list if there are eggs or egg proteins.