My Daughter

[Cordelia]

A couple weeks ago my twin daughters had an ultrasound to rule out Polycystic Kidney Disease. I have the disease. Today I phoned my GP's office to find out from the receptionist if the results were in and if son, what the results were and she told me over the phone that "small renal cysts" were found.

I'm very scared for her since I know what hell I've gone through over the years, even with my pregnancies, they were very high risk. And now, with having renal failure and being on dialysis,  I am very worried for her. She already had a diagnosis of mild epilepsy almost 2 years ago and now this, I just feel horrible.

Even though I knew there was a very possible risk of one of my kids inheriting this disease, but I am still  in shock. I'm very scared and nervous.....I have booked an appointment for this Thursday for her to see my GP and I am really wanting to request to him that she be followed by a nephrologist.

I'm so scared, I had a major crying spell after I got off the phone                        

[willowtreewren]

 

I'm so sorry, Cordelia. I have been waiting to hear from you about it, but didn't want to pry. 

I was rather devastated when I learned that our daughter has PKD (cysts in her liver, too). One thing that has helped me is following the current research. I can only hope that by the time her kidneys start to fail there will be better options available. In the mean time, she is following a better renal diet, watching sodium and reducing protein somewhat.

My heart goes out to you. I HATE kidney disease. 

Aleta

[cariad]

I am so sorry, Cordelia. Oh course you're scared for her.

I truly believe that renal failure will be completely repairable within our lifetime. One doctor has already created an artificial kidney, and has said that it should be ready for clinical trial in the next 10 years. I would add at least another 10-20 years to that estimate (they are usually much too optimistic), but that still means that your daughter will be quite young by the time they finally do have this option available. Try to focus on the fact that today, she is just fine. If/when she does show symptoms of renal failure, she has a mother who is not only extremely knowledgeable about treatments, but can understand the emotional side as well. In all likelihood, the world will have much better options for her to choose from by the time she needs it.

Thinking of you!

[MooseMom]

Are your twins fraternal?  One twin has signs of PKD but the other does not?

Like willowtreewren, I've been keeping a lookout for the results of these tests, and I am so disappointed for you in the results.

You are right to insist that she be followed by a neph.

Ever since the human genome has been mapped, I have held out hopes for cures for a lot of genetic diseases, so I am wondering if perhaps you could start researching what studies are being done right now in gene therapies for PKD.  Maybe there are new interventions on the horizon that will "turn off" the offending genes.

I know what it is like to fear for the future of your child.  There are few things more devastating than knowing that your child will find life filled with extra obstacles.  I hope that there will be some answers in the not too distant future.

Have your told your daughter the news?  How is she taking it?

 

[mcclane]

i'm sorry to hear that cordelia, I am hoping for the best

[MooseMom]

Cordelia, have a look at the Renal Fellow Network's site

http://renalfellow.blogspot.com/

Scroll down, and about halfway down on the righthand side, you'll see a "cloud" with all sorts of topics with the number of related posts in parentheses.  Click onto "polycystic kidney disease", and you'll be sent to loads of postings about PKD and some of the newest trials and therapy ideas.

[Rerun]

I too think that PKD will either be cured soon or slowed way down so that a person may keep it under control.  I think it is smart to get this looked at now so that something may be done by diet or medication.

I'm so sorry.           

[lmunchkin]

I am so sorry, Cordelia.  It is always worse when it is your child!  I HATE THIS STUFF, and Im not suffering with it!  Such a fragile time we live in!  Hoping the best for your little Angel and You too!

Keep us posted, I really don't have the words to say right now!  Even if I did, it would not help your situation.  Just be the great Mom that you are and the one she has loved all this time!

lmunchkin

[Sax-O-Trix]

I am sorry to hear this...  I have had both of my children tested for the syndrome that ruined my kidneys and hearing.  My 14 year old who also has Asperger's has tested positive.  The best we can do for our children is to have them followed closely by a neph who specializes in their type of kidney disease,  keep up with the latest treatments/preventions and be PROACTIVE in their treatment as others have suggested.  We have to advocate for our children and if they are old enough, make sure they are aware of what they can do to help preserve their kidney function as long as possible w/o scaring them with too much information.

How old is your daughter?

[ToddB0130]

Cordelia --- I am really hoping for the best for your daughter.  You are totally doing the right thing by getting her the best care you can as early as you can.  Don't let any doctor dictate what you want to do for your child.  Best wishes to you and your family.

[plugger]

It tore us up too when we found out my daughter had kidney disease.  It has been 11 years and she has learned to deal with it.  She also has married and graduated from pharmacy school.  It still stinks that it is there, but maybe she has learned to be a stronger spirit for it.  We all wish it would go away, but are very glad we still have her and has done pretty darn well.  And as others have said, the technology gets better and if she stays proactive she can have a very nice life.

[Cordelia]

Thank you so very much, everyone!          You all have warmed my heart with your encouraging and kind words of best wishes and good thoughts. You all are so very caring!

Thank you MM for the link too,       I will most definitely check it out!

I was talking to my social worker today, she came in and I talked with her about my feelings and she was a great listening ear, which I really needed today. My nurses could tell I was not 'myself' when I walked into the unit today.

For those of you who have children with kidney disease, how did you cope with the fear? I'm curious to know how you all dealt/coped with the unknown.......

Talking about this, helps as a start, for me. I am thinking that's how I will cope, is by talking to others. It's helpful to know that there are people who have been there, done that and are going through similar exeriences......

My daughter is only 12. I was 19 when they found the cysts on me only sheerly by fluke when I had an upper and lower GI series done.

In amongst all the shock of this yesterday, I missed a hair appointment for my kids in the former city I lived in. She called me up wondering where I was and I totally forgot, I explained the sad news and that it totally threw me for a loop. She was pretty understanding, she had so many questions I was not able to answer at this point.

My husband came home from work when I talked to him on the phone. His boss said to 'go home' I was so grateful to his boss for letting him do this .......

Lastnight when I told some extended family the news they were pretty insensitve to our situation, and I'm really bummed about that too how some people just don't understand......really annoys me bigtime, some of the ignorant/insensitive things that family can say. My husband and I stand united in our thoughts and I'm so relieved for that but honestly, sometimes, having family support and understanding goes a long way and when you don't get that, it can really be upsetting.

Thank you, everyone, for listening to me vent about this, it sure helps!!                

You all have given me some hope that hopefully down the road medical technology will become more advanced that things will improve for our children, I'm hoping so much!!     

[MooseMom]

Just because people might be family members doesn't mean they will be better or wiser or more sympathetic than any stranger you might meet in Starbucks.  

[willowtreewren]

Lastnight when I told some extended family the news they were pretty insensitve to our situation, and I'm really bummed about that too how some people just don't understand......really annoys me bigtime, some of the ignorant/insensitive things that family can say. My husband and I stand united in our thoughts and I'm so relieved for that but honestly, sometimes, having family support and understanding goes a long way and when you don't get that, it can really be upsetting.

 

Cordelia,

What I hate most about kidney disease is its invisibility. It makes it so much easier for folks who don't understand to simply ignore it. The best advice I can give you about the reaction of your family is to let it go. Build "family" among those who understand and care. Don't pretend with your family that there isn't a problem, keep educating them, and perhaps someday they WILL understand better. But in the meantime, pay attention to those (like your hairdresser) who listen and care. Keep them close to your heart. Fill your life more and more with those people who support you and the insensitivity of your "real" famiy won't matter as much.

 

As young as your daughter is (yes, young, mine is 37!!!), there is great hope that medical technology and progress will offer a better outcome for her. In the meantime, try to educate her in ways that she can stay healthier for longer. You have lots of time for wonderful opportunities with her.

Oh, Cordelia, your news still brings back the sorrow I felt when I learned about my daughter. Be strong. 

 

Aleta

[Cordelia]

I really struggle with comments like, "It's only your one daughter?" Oh, there's been other hurtful comments too...... Some reactions have just been nonchalant, which is hurtful also          People just don't understand......(I'm shaking my head here) 

Aleta, I really hear you, kidney disease is complex and invisible.......I do feel like I have to keep educating, I agree I need to!

Its hard when close family members dictate to you what you should and shouldn't be doing.   

Aleta, your granddaughters are so sweet! How old are they? Are they your daughter's girls? They look adorable!

[Cordelia]

An update:


I found out from the test results that my daughter at this point, has one cyst  It's about 7 mm big.  I talked to my nephrologist over the phone and he would feel better if I took her to a specialist, which is what I hoped he would say.  He doesn't deal with children but knew the name of an excellent paediatric nephrologist whom he knows personally in Toronto, at Sick Kids, so all I need to do is go to my family doctor and request for my daughter to see this doctor and hopefully get the referral with no problems. I am hopeful for that, and relieved to know she'll be in great hands!       

I made an appointment for my daughter to see my family doc this week so we can get that referral   

[ToddB0130]

While the diagnosis is awful and you have my sympathies ..... your early care in dealing with it is AWESOME !!! I'm glad you and your daughter will be able to deal with this now.  Really,  the earlier the better.  Best of luck.

[The Lady]

She is very lucky that she has a wise Mom who got her tested early. The sooner you know, the sooner she can begin treatment which means better outcomes!

It's amazing how silent kidney disease can be and how long it can go on before being caught. I had no idea until I was already in stage 4 ESRF.

Your daughter will have all the best chances to live a great life knowing this early. Your understanding of what she might have to go through will only make you closer as well.

Your family will be in our thoughts and prayers!

[Cordelia]

Thanks so much, Todd and TL!         Thanks so much for your encouragement and kind compliments, I agree, the earlier I deal with this, I think the better outcome for my daughter. I don't want her to go through what I did, or, if at least I can delay it from happening early for her, the better!     

Thanks so much for keeping us in your thoughts and prayers-it means so much to me!   

You're so right about kidney disease being a silent disease, I totally agree with you!!

[okarol]

I am sure things have changed by now, but 25 years ago, when we found out that my dad's kidney ailment was hereditary, my siblings and I were advised not to get tested as it would affect our ability to get health insurance. The doctor (a friend, internist, not a neph) said there was nothing to be done to stop PKD, and that we needed to be careful and keep an eye on our blood pressure, and have it treated if necessary.
 

[Cordelia]

I hope that I haven't ruined it for my daughter of getting insurance.             I got life insurance when I was first married 17 yrs ago but then I didn't know family history, being adopted, so there was no way they could trace it. I still have a policy on me, but I worry now for my daughter.   

[willowtreewren]

 

Cordelia,

I want to say a few things about insurance. It is a mess right now, and something we should be continually working to change.

 

When my husband's father was first diagnosed, he and his sister went ahead and got tested. This was about 25 years ago. They were both affected, unfortunately. Anyway, we have never gone without insurance. Granted, there was a period that the insurance was getting quite expensive, but we worked with an independent agent who looked for ways for us to work around that issue.

I think the proactive care you are getting for your daughter at an early stage will outweigh any insurance issues that you may have. I'm trying to say....don't borrow worry! 

Carl started seeing a urologist and nephrologist early on and has stayed in excellent health through every stage of his journey with PKD.

Yes, those granddaughters are our daughter's children. In that picture they were 7 and 2 years old. What I love about that picture is the adoration that Wren has for Willow simply shining out of her eyes. Willow, being 5 years older sometimes gets frustrated with her little sister, but the love is so strong.

And you will so enjoy having grandchildren when the time comes.

 

Aleta

[Cordelia]

Thank you so much for your words of encouragement, You are so very sweet             I'm going to try and not worry about the life insurance, I have decided I'm not going to worry about it for now, for now I have to put attention to her health first, today I'm going to hopefully get that referral in Toronto, my daughter's apt is this afternoon so I'll check in later to let you all know if I could get it or not. I'm sure my doctor will be more than willing.   

[Cordelia]

So yesterday I go to get the referral and my family doctor's medical secretary is a real *B*.  She threw a snit about having to try and find the phone and fax # for the doctor I'm wanting to get referred to for my daughter. I was like, "Isn't it YOUR job to find that out?!" You're the one who has access to numbers I don't have!

I'll be glad when I don't have to deal with their office anymore!     

[willowtreewren]

 

I'm sorry you had to go through this! 

Hang in there.

Aleta