T&Ps please

[kcd0531]

Tonight after dinner at my parents' home celebrating my dad's birthday; my mom told my younger brother and I that our dad's kidneys are failing.

This has hit me like a hard blow to the stomach. I am a daddy's girl through and through.

I know he has been struggling with polycystic kidney disease but had no clue how bad it has gotten. I don't know if he did either or if he did but didn't tell anyone. That wouldn't surprise me.

All I know is that next month he goes to Richmond to be placed on a list to be a transplant recipient. And I'm struggling to wrap my head around this.

I'm debating on taking a mental day tomorrow from work as I try to get this figured out at least somewhat. But not sure what the best move at this time is.

[prettyinpink]

Hugs.
Take the day off tomorrow to let yourself get your mind around this. I had to do this a few times during my mom's sickness and after. It's really the best thing you can do for yourself.

Many prayers for your Dad and your family.

[brandienee]

That is a huge blow. I am so sorry.

Praying for you and your dad. I hope that he gets a good transplant soon.

[nsl]

I'm so sorry. Definitely take the day if you think it'll help. I know I was a wreck the day I found out about my dad's cancer diagnosis, and it was almost worse being at work because I couldn't give myself time to adjust to the news.

[erin2903]

Prayers and hugs!

[bettydraper]

Praying for you.

[verycontrary247]

T&Ps

If you need anything let me know

[crimewatcher]

T & Ps for ya girl. I'm sorry.

[kcd0531]

Sept 16, 2012 22:30:57 GMT -5 killercupcake said:

Take a day.

Are they putting him on dialysis at all?

Apparently he has some flexibility about when to start dialysis. But, yes, he will need to start this within the next few months. There is one type that will allow him to do it from the comfort of home. Since it is something, once he starts, he will have to daily for 4 hrs. a day he can hook himself up before bed and allow this process to happen while he is sleeping. My parents are on their way to a dr. appt. this morning to get more information.

As for me, right now I'm at work. I'm torn about staying home and just letting myself process this and get the tears and frustrations out or trying to be productive and not letting myself wallow at all. I'm giving myself until lunch to figure out what will be best for my mental and emotional process at this point.

[pennylane]

Thinking of you and your family, KCD.

[blueshirt2003]

I'll be thinking of your family. I agree with the others that if you need a day off to think about things you should do it.

[JakJak]

I'm so sorry. You and your family are in my thoughts and prayers

[audette]

I'm so sorry.

[kmmssg]

I had just lurked here now and then and not joined but I read your post and wanted to offer my thoughts and prayers.

I, too, have polycystic kidney disease, as did my dad, and one of my DD's does too. Oldest DD and DS haven't been screened. I have no idea if I will end up on the road to dialysis or if I will travel down the road of having huge kidneys that look like a mountain range and not have any complications. My dad died very young (43) of heart disease so I have no one to compare to.

I can only imagine how scared and concerned you are for your dad. Are you fairly well educated in PKD? Would it be helpful if you could attend a dr appt with your dad and ask questions?

Again, I just wanted to say how sorry I am and I hope things go well for him.

[kcd0531]

Sept 17, 2012 16:14:56 GMT -5 kmmssg said:

I had just lurked here now and then and not joined but I read your post and wanted to offer my thoughts and prayers.

I, too, have polycystic kidney disease, as did my dad, and one of my DD's does too. Oldest DD and DS haven't been screened. I have no idea if I will end up on the road to dialysis or if I will travel down the road of having huge kidneys that look like a mountain range and not have any complications. My dad died very young (43) of heart disease so I have no one to compare to.

I can only imagine how scared and concerned you are for your dad. Are you fairly well educated in PKD? Would it be helpful if you could attend a dr appt with your dad and ask questions?

Again, I just wanted to say how sorry I am and I hope things go well for him.

Thank you for speaking up. I have some very general knowledge of PKD based off of what I have learned from my dad's experience, at least one of my uncles, and my grandmother and some cursory researching I've done through the internet specifically pkdcure.org.

The strand is definitely of the genetic variety and though statistically speaking I have a 50% chance of having this as well, am fairly confident I don't as my BP is amazing - even trending to the low side.

But, yes, any more information that you are willing to share would be appreciated.

[kmmssg]

Mine was diagnosed 15 years ago when I also had amazing BP. I am 52 now. My blood pressure was quite impressive and always pleased my dr. Don't let that scare you, but I am a firm believer that you have to have good solid info with things like this and you have to stare it down and take nothing for granted.

My DD's dr. did an ultrasound on her kidneys since I have it. She was diagnosed at 27. She also had amazing blood pressure.

With PKD, you can be completely asymptomatic (no complications) and still have it. If your dad has it, all of his kids have a 50% chance of having it. Of the kids that have it, there is a 50/50 chance you will either need dialysis/transplant one day OR you will grow to be a very old person with weird kidneys that work just fine. If you have it, your kids will have a 50% chance of having it.

You can't be a carrier and NOT have it. If you don't have it, neither will your kids and you will not be able to pass it on.

I STRONGLY urge you to have a good life insurance policy in place prior to being screened. If you have renal disease you will play Hell trying to find affordable life insurance once you have a diagnosis. Get a policy you plan on keeping FOREVER prior to getting screened.

DH and I both strongly believe your generation will be the one where you will be able to grow an organ from stem cells. So much research has been done in that field and I truly think it will come to pass in the lifetime of my children.

I really think you should ask your dad if you can go to a dr appt with him so you can ask questions about his condition and get some reassurance. Many people go on dialysis and then receive a kidney and return back to a very healthy lifestyle. Education is power and the more power you have the more control you have.

Please, do not be lulled into "I don't have it because my bp is fine." My norm for years after my diagnosis was 100/60.

Let me know if you have any other questions. I do not mean to scare you and I hope I haven't, but you need rock solid information so you can always be in control if you should have this. If you don't, (I truly hope this is the case) you still need rock solid information so you can help your parents when needed.

[kcd0531]

Sept 18, 2012 6:46:01 GMT -5 kmmssg said:

Mine was diagnosed 15 years ago when I also had amazing BP. I am 52 now. My blood pressure was quite impressive and always pleased my dr. Don't let that scare you, but I am a firm believer that you have to have good solid info with things like this and you have to stare it down and take nothing for granted.

My DD's dr. did an ultrasound on her kidneys since I have it. She was diagnosed at 27. She also had amazing blood pressure.

With PKD, you can be completely asymptomatic (no complications) and still have it. If your dad has it, all of his kids have a 50% chance of having it. Of the kids that have it, there is a 50/50 chance you will either need dialysis/transplant one day OR you will grow to be a very old person with weird kidneys that work just fine. If you have it, your kids will have a 50% chance of having it.

You can't be a carrier and NOT have it. If you don't have it, neither will your kids and you will not be able to pass it on.

I STRONGLY urge you to have a good life insurance policy in place prior to being screened. If you have renal disease you will play Hell trying to find affordable life insurance once you have a diagnosis. Get a policy you plan on keeping FOREVER prior to getting screened.

DH and I both strongly believe your generation will be the one where you will be able to grow an organ from stem cells. So much research has been done in that field and I truly think it will come to pass in the lifetime of my children.

I really think you should ask your dad if you can go to a dr appt with him so you can ask questions about his condition and get some reassurance. Many people go on dialysis and then receive a kidney and return back to a very healthy lifestyle. Education is power and the more power you have the more control you have.

Please, do not be lulled into "I don't have it because my bp is fine." My norm for years after my diagnosis was 100/60.

Let me know if you have any other questions. I do not mean to scare you and I hope I haven't, but you need rock solid information so you can always be in control if you should have this. If you don't, (I truly hope this is the case) you still need rock solid information so you can help your parents when needed.

Dammit; was hoping I was in the clear. LoL But thank you (seriously) for the reality check re: BP. I have, what I feel to be, pretty amazing life insurance. Bought my policy when I was still in my 20s; being a mama I wanted to make sure DD was well provided for should anything happen to me.

I'm debating on having myself tested as a possible donor for my dad; and I realize that doing this will mean I get screened for PKD and, if I end up having it after all, that could potentially kill any opportunities of purchasing further life insurance at a reasonable rate.

It would be amazing if the cure was found in my generation's lifetime - I would hate to have to lose any of my family to this disease. I know the cure is coming too late for my dad who is so young (58) and it terrifies me at the prospect of losing him before he's had a chance to watch his grandchildren grow up like my grandmother did/does - and she will be 80 next year. So, what you said about those having PKD and the 50/50 chance of needing dialysis/transplant makes more sense to me now.

Having more information has made me feel more comfortable with what is to come. I think it is the unknown that is so much more terrifying than information. Kind of that whole "knowledge is power" mindset.

[kmmssg]

Keep in mind that once your dad receives a transplant, his quality of life will be very good. He will be able to eat whatever he wants and pursue the things he enjoys. He can still do a lot of that even on dialysis (well, not eating everything he wants) but don't count out him not being around to watch the grandbabies. He has a chronic disease that is treatable.

Can I ask if you have any siblings? Have they been tested? Of our 4 girls I am biomom to the 2 oldest. My youngest has PKD, oldest has not been screened. My oldest DD has a 25% chance of being a perfect match if DD #2 needs a kidney since they share the same parents. If anything happens to my kidneys I will not take one of hers. If she is willing to donate a kidney, she needs to save it for her sister. Those 2 are thick as thieves anyway.

Just remember that there is plenty of time to research and really educate yourself on this whole thing. If you google DaVita, they are a corporation that runs hundreds of dialysis centers around the country. They have a whole portion of their website dedicated to recipes for renal patients. Your Dad's diet will be greatly restricted in protein, potassium, and phosphorous and you can get a good start on the holidays by experimenting now with some of their ideas.

Good luck! I hope you will post again on how he is doing!

[kcd0531]

Sept 18, 2012 7:47:28 GMT -5 killercupcake said:

My uncles kidneys have been in total failure for years now (he's had diabetes since he was a child). He does dialysis now 6 days a week for 4 hours a day while he waits for a new kidney. His quality of life has increased SO much since starting the dialysis. He had been doing it at home too but insurance issues force him back to the center. But he's still happy and has a new lease on life since he began treatment. The dialysis, at least from what I've seen in my uncles life, will be an excellent step in your dads quality of life. It's not ideal, but it does the job and it does it well for the time being.

Thank you so much for sharing this. I have heard that the dr. told my dad that he would probably feel a lot better if he began dialysis. I think he's probably had his head in the sand about how he needs to handle this for himself. And now his hand is being forced.

[kcd0531]

Sept 18, 2012 9:04:15 GMT -5 kmmssg said:

Keep in mind that once your dad receives a transplant, his quality of life will be very good. He will be able to eat whatever he wants and pursue the things he enjoys. He can still do a lot of that even on dialysis (well, not eating everything he wants) but don't count out him not being around to watch the grandbabies. He has a chronic disease that is treatable.

Can I ask if you have any siblings? Have they been tested? Of our 4 girls I am biomom to the 2 oldest. My youngest has PKD, oldest has not been screened. My oldest DD has a 25% chance of being a perfect match if DD #2 needs a kidney since they share the same parents. If anything happens to my kidneys I will not take one of hers. If she is willing to donate a kidney, she needs to save it for her sister. Those 2 are thick as thieves anyway.

Just remember that there is plenty of time to research and really educate yourself on this whole thing. If you google DaVita, they are a corporation that runs hundreds of dialysis centers around the country. They have a whole portion of their website dedicated to recipes for renal patients. Your Dad's diet will be greatly restricted in protein, potassium, and phosphorous and you can get a good start on the holidays by experimenting now with some of their ideas.

Good luck! I hope you will post again on how he is doing!

None of us have been screened for PKD. It is one of those things that we realize that there isn't much we can do about it if we do have it except modify our diet. Will definitely have to check out DaVita's recipes; thanks for that tip!

After my dad starts his next plan of action, I'll be sure to post on how he is doing. I want so much to believe for the best; and I know he will get the best of care. If nothing else, my mom will be sure to make that happen. Sometimes having a Type A parent is a very good thing.

[bigmamma]

Oh C.... just saw this.

lunch in our very near future. Prayers right now!!

[kcd0531]

Sept 18, 2012 21:14:38 GMT -5 bigmamma said:

Oh C.... just saw this.

lunch in our very near future. Prayers right now!!

Thanks, girl. and lunch sounds great.

[kcd0531]

Sept 19, 2012 4:05:08 GMT -5 killercupcake said:

Sept 18, 2012 9:41:53 GMT -5 kcd0531 said:

Thank you so much for sharing this. I have heard that the dr. told my dad that he would probably feel a lot better if he began dialysis. I think he's probably had his head in the sand about how he needs to handle this for himself. And now his hand is being forced.

Absolutely.

I know when they got all that crap out of my uncles system, he was a new man. He's a little tired after the treatment (which is normal), but on average, he feels amazing. He's gained weight back (I don't know if that's normal though), he enjoys life now, and he actually wants to have the transplant now that he knows what life will be like after.

I hope your dad gets a call soon!

Weight gain is definitely not an issue for my dad LoL I'm just looking to him feeling better and not looking so run down all the time.

Just found out this morning that his kidney function was at 17% at spring/summer and is down to 12%. When you hear numbers like that (and now seeing it in black and white) it's pretty freaking scary.

[kmmssg]

those numbers are pretty scary! Keep in mind that most older people run at FAR less than 50% kidney function and they are fine. Like I said, I am asymptomatic right now and in the high 40% range.

[decemberrain]

Sending thoughts and prayers your way