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Genetic testing tomorrow. REALLY nervous.


Forum: 2009 Playroom

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  #1  
March 16th, 2009, 06:57 PM
fishysticks's Avatar Platinum Supermommy
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I hope you ladies don't mind that I C&P this from my blog, as it's LONG and I don't want to retype it because i'm basically freaking out

In my family runs a disease called Polycystic Kidney Disease (or PKD), obviously a disease that effects the kidneys, eventually putting the effected into renal failure if they do not go on dialysis or get a kidney transplant.

My Grandfather had it, one of my uncle's, my aunt, my mother, my brother, and a handful of cousins.

It has been something that has been on my mind pretty much my entire life. I watched my mother suffer through years of pain and torture, and eventually pass away due to the disease and complications that came with a botched transplant. I've watched family members get very sick, and lose a lot of freedom in their lives.

I have never been tested. I refuse.
It may seem irresponsible, but think of it this way: there is NOTHING anyone can do for you until you exhibit symptoms of PKD. You're sh-- out of luck unless you're in pain. Why would I want to know that my life was going to go downhill, and I could possibly die.. but there was nothing I could do to stop it or make it better? Who would want to go through living that? My brother knows he has it, has no symptoms, but I know he thinks about it every day. I don't want that added stress.
I want to live my life to the fullest. Take care of myself. Take care of my family. Not have the stress of looming doom in my future. You may not make the same decision if in my position, but it's my life.

My OBGYNs don't really see it that way. And I understand, to an extent. There is also something called Infantile PKD, where your child can develop PKD in the womb (instead of in their 30's or later), and have a rough life, and possible birth defects. I always thought it was so rare, there was no chance. I've always kept my head up and believed that I don't have PKD, so my children can't either (you can't be a carrier for PKD, it has to be passed directly).
I got scanned twice during my pregnancy with Holden for Infantile PKD, both times the scan was clean.. which I expected.

My first scan for the new baby is tomorrow morning. I honestly had ZERO worries about the whole thing, and just thought of it as another chance to see my bean wiggling around.. until I talked to my brother today.
My cousin had Infantile PKD. It's why he was only born with 4 fingers on one of his hands and apparently other birth defects and problems. I knew he had PKD (he passed when he was 19 or 20 from other things), I just never knew it was at birth. It's not as rare as I thought. And now i'm incredibly worried. Worried about the baby, back to worrying about whether I have it or not, whether I could pass it down.

A huge part of me is almost certain that this baby will not have it, just as Holden didn't. The rest of me is freaked out that my genetics is going to ruin my life, and my family's. I don't want to get sick and have my teenaged children have to look after me like I did with my mom. I don't want to pass away without them ever getting to ask me what they were like as children, or knowing who I REALLY am. I still have so many questions I can never ask my mom.

I want my family, and myself, to be free and clear of this horrible disease- but getting myself tested is something I just can't do. I can test the babies, it's important to know because Infantile PKD is nothing to mess around with.. but I can not handle getting tested and possibly having it. I need to stay positive for my children. And I know that i'm going to go in there, and they're going to try and convince me.. and I hate when people try and convince me because it's my body and my life and my decision.
What's very important is that my children are healthy. So now i'm just going to hope for that.

thanks for reading if you got this far. I'm just so stressed out about this. I want my bean to be healthy. I want MYSELF to be healthy.
ugh
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  #2  
March 16th, 2009, 07:28 PM
momof8lopez's Avatar Platinum Supermommy
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wow, I ususally dont post to something like this, as it is YOUR decision. I respect the fact that you are taking responsiblity for your children, and getting scanned in early pregnancy. I feel for you though as a woman. I am a cancer survivor. Never had anyone in my family, both sides ever diagnosed with breast cancer, Im the only one. Oh how I dread evertime I feel something or have to go for anual testing. I rember when I found my initial lump, I was 6wks pg with my DD. I decided not to do anything, brought it to my dr.'s attn., and we just watched it. After the birth of my DD, I breast fead for 2.5yrs. Im not sure why I did it so long, but I knew as long as I was breast feeding, they could not test me. It was the fear that almost took my life and left four children without a mother. A month after I stopped b/f, I finally got it out, and they told me any longer and It could of been a real bad story for me. I went through all of my treatments and finally had a double mastecomy last year. It was very hard for me to think I almost put this aside, due to not wanting my life to be centered around cancer. I have to wake up every morning, wondering when and if it will ever come back, but I feel that with my knowledge, I will save my DD when she is 21. She will start her testing then, as I had it so young in my life. But I have empowered her with knowledge and hopefully one day we will have a cure for these horrible deseases that have taken our freedom away. I feel blessed that I have four children and that I can still have more.

Im only telling you of my story, to show the other side. Our lifes are very different as our medical historys are. I wish you and your little bean the best of news in these coming weeks. Whatever your decision is, is not to be taken lightly. We have to tell other people around us, walk a day in my shoes, and let me know what you would do. You are a strong and brave woman, and I pray God blesses with you and your children with long and disease free lives. Im sure it took great courage to just write your story, and for that you are trully a brave woman.
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  #3  
March 16th, 2009, 07:29 PM
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Wow, thats some pretty heavy stuff.
Those are some really big decisions to make and I can understand both points of view. Especially yours since there is nothing that can be done about it in regards to your health. I think you are smart for not denying the possiblity that you and/or you unborn child could have PKD. Good think you are going to have the genetic testing.
As morbid as it sounds, I hope you have a good living will set up so you don't have to deal with that if you do start exhibiting symptoms.
I am just curious now, is there a possibility that Holden could have PKD as an adult - even though he didn't test positive as a baby?
My T&Ps are with you and your family....really, I'm not just saying that - I hope everything turns out for the best!
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  #4  
March 16th, 2009, 07:55 PM
fishysticks's Avatar Platinum Supermommy
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If PKD were something that could be treated as soon as you were diagnosed, I would definitely and for sure be tested right away. I'm stubborn but it would be impossible for me to ignore. I have another 5-10 years, if I have it, before i'll ever feel any pain related to it.

If I have PKD, then there is a possibility that Holden could have it as an adult as well. My brother was diagnosed at 18, but his situation was only advanced because of heavy drug/alcohol abuse. He takes much better care of himself now, but obviously drinking to a stupor is NOT good for your kidneys. Same with my mother, she did not take care of herself, and she also had Hep. B and congestive heart failure.

Neither my brother nor I had infantile PKD.. or at least, not that i'm told. I find out new things about my family every day that I never knew before. My family keeps weird secrets.

I don't want to make it seem like EVERYONE dies from PKD. My uncle had a transplant and survived. It is not something you want to get, though. Most people with PKD will end up on dialysis, which makes it so you have no life, and eventually SHOULD get a transplant.

I know it sounds crazy but i'm hoping the power of positive thinking my whole life (being convinced I do not have it, as it is only a 50/50 chance since my father doesn't) and keeping myself generally healthy means that I don't have it. The mind is a powerful thing, KWIM?

If I do find out later that I have it, I will have a LONG time to get things in order. My mother started suffering at 30 and passed at 44 because of complications after having her transplant removed (the hospital didn't take good enough care of her, and she was just too weak to go back on dialysis because of congestive heart failure).
My brother is turning 27 next week and still feels great.

I also have hope that by the time I would exhibit symptoms, there will be a better treatment. Right now.. the treatment sucks, and it doesn't seem like a lot of people care to research it although kidney disease is a HUGE killer.
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  #5  
March 16th, 2009, 07:58 PM
SusieQ2's Avatar Jersey Girl
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Wow Jenny, I can imagine that would weigh very heavily on your mind. I'm sorry you've had to watch so many family members suffer with such a horrible disease.

My thoughts and prayers will be with you and your little bean tomorrow.
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  #6  
March 16th, 2009, 08:04 PM
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I will def be thinking about you, I know just how stressful those things can be...I have high hopes everything will be just fine...
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  #7  
March 16th, 2009, 08:05 PM
Blue_Twinkles's Avatar Son Up 2 Son Down
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That is a lot to take in and I commend you for keeping a strong head and living your life your way while still taking the best care of your children. I respect your decision to refuse testing as it is your life and your decision but I think that after being tested twice in your last pregnancy to see if your son was at risk, there is a good chance this baby will be fine as well. I know it's hard not to worry and I don't know if you are religious or not but maybe you could turn to something or someone that you find strength and comfort in. It is my firm belief and opinion that everything happens for a reason and whatever the outcome is tomorrow, I know you will be able to handle it. Mothers always have this way of taking things in and handling them with just the right amount of faith to make everything ok for their children. I will pray for you and your family for good news at your appointment tomorrow. Just keep your head up and go into it with a positive mind. Let us know how it goes tomorrow! I will be looking for your post! *Hugs*
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  #8  
March 16th, 2009, 08:37 PM
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Jenny I hope YOU and your family get through this difficult time although I am sure your baby is fine just as your other son was.
I am a certified dialysis technician and although I am not employed in the feild right now because I want to further my education I do know a great deal about PKD and dialysis. Dialysis is NOT the end of life! It comes along with a stricked diet and lifestyle but you can still live for up to 15 years on dialysis, most people (excluding those with rare blood types) get a transplant by then. I am not trying to talk you into getting tested by any means but I want you to know that I have seen 23year olds on dialysis and as long as they stay positive they tend not to wither.
Stay positive for you, your children, your husband -- don't think that because this disease is in your family it has to define who you are... don't let anxiety get the best of you. Stop sitting there and thinking "well what if I have/get it" You have nothing to worry about right now and if you do have something to worry about in the future then deal with it when it comes because the outcome of PKD is not death! Don't stress... get a good nights sleep.
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  #9  
March 16th, 2009, 10:22 PM
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You will definitely be in my thoughts and prayers. Let us know how it goes!!
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  #10  
March 17th, 2009, 04:23 AM
drewbears's Avatar Mom to 8 AWESOME kids!
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(((((HUGS)))))) I will be thinking of you and sending many prayers.
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  #11  
March 17th, 2009, 05:09 AM
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Hugs! I agree deal with things as they come.. dont think that you have an immpending doom.. thats no way to live!
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  #12  
March 17th, 2009, 06:18 AM
~Paula~'s Avatar Platinum Supermommy
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Thinking of you today, I hope everything goes well!!
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  #13  
March 17th, 2009, 06:40 AM
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I am thinking of you today! I will be praying everything goes well.
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  #14  
March 17th, 2009, 06:48 AM
.kristen.'s Avatar Raising Little Marines
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That has to be horrible to watch people in your family like that and I'm glad you will know ahead of time and prepare for you and the baby. I will be thinking about you!
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  #15  
March 17th, 2009, 06:59 AM
mrscheriezach's Avatar Mega Super Mommy
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thinking and praying for you Jenny
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