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.
May the Lord bring healing to your husband.
Peace and Blessings!
CoachRIchie
I will be thinking about you. I am sure by now Jim is out of surgery. Hope things work out for him!
Love, Jen
Our hopes and prayers and with you and Jim. Remember to keep breathing and let us know as soon as you have an update.
Lots of hugs,
Ruth
I'm not a prayer but I am a thinker and I'm thinking about you, right now, at 11:55am (in FL). I hope Jim's surgery went well and he is resting comfortably. I bet you're in full caretaker mode now, anxiety has been put aside because you have work to do. I also cross fingers and have them crossed that the biopsy results are good. Let us know when you can and it's okay to cry while in the bathroom!
Lisa H
Sadly, I have bad news.. the polyp is big, not huge but big and the doctor said even before the biopsy results are in that it is, indeed cancer. He's seen many of them in his career and knows the difference. I questioned him, you can imagine, knowing me as you do, but he wouldn't back down a quarter of an inch. it is all different colors with lesions all over it. and I thought we had caught it quickly, that is the understatement of the year. I knew that horseness was a symptom of cancer, and it is, it's just that it's a late symptom, so what was the point I said. He said that most cancer symptoms are of late stage cancer. Before surgery he stated that he was going to remove the "polyp" but when he got in there he could see that it was too big to remove. I asked him what was the point in doing that endocopy thing, as it takes a picture of it, but it seems as if it's not that good of a picture and he just didn't know. Jim is in a denial mode at present and refused to say or write a thing about this, he is just acting funny, and thats what Jim does best. This is the first of it's type to enter this family and all are overwhelmed with grief. My eldest son has been by my side non stop, Jimmy the one that was sick with the kidney stone. All the rest of them are on their way home, I think that I'am going to cry, but won't.
However, there is hope, the doctor told me it can be stopped in it's track with radiation, he can't guarantee anything as most docs won't, but after the biopsy come in, next tuesday, he will do a PET scan to see if it's spread anywhere and then start radiation theapy.
Last night, we was awake every hour on the hour with hic ups, it was awful and I didn't know what to do, but concluded that it might be from the huge instrument they put down his throat, don't know anything for certain but they are still occuring this morning and it's very painful. He's not supposed to talk at all for at least 7 days and almost crys in pain everytime this happens. I don't know what to do, but common sence is telling me it's normal, this is no bleeding or vomiting or any of the other things they warned me that might happen, just these hic ups.
I want to talk about causes of this type of cancer. As I told you I have researched this and found in almost all cases, this is a direct result of smoking and alcohol abuse. Of which Jim does not do either, but it is the most common cause. The next thing is acid reflux disease which Jim does have, but was never treated for many, many, many years. He used to complain about "hot stuff" in his throat, acid refluix but he didn't know what it was and I never for a minute thought he was talking about heartburn, but he was. We are talking about probably 20 years of not being treated for GERDS, acid reflux. More than likely this is what will happen to anyone that doesn't take meds for it heartburn or GERDS. I'am not saying it will happen to everyone, it's just that acid reflux needs to be taken very seriously and treated. By the time the voice become hoarse, the damage is already done. the polyp or tumor, whatever it is, has spread to both vocal cords and is stopping the natural vibration from happening, thus the hoarseness begins. Then and only then, do we know what is going on. It happens to many singers as singing isn't really a natural state and singers need to be very cautious about this and rest their voice frequently, coaches that yell like maniacs on the football field or anyone else that uses their voices to extreme. The vocal cords are very delicate and caution needs to be exercised. Acid reflux is just as dangerous as anything else. Smoking all your life and excessive use of alcohol are other causes and the most common, but not so with Jim...
Thanks again everyone and I'll try to get back on here again, but have so many things going on now, but I will keep you all informed and thank you once again for all your support....my extended family
Lindsey, keep up your good work honey, your getting somewhere and fast. I'am so proud and happy for you. To Littlewing, of course you will be my friend on DS. I should be so honoured.
my love to all,
Norma...
I also hope if it is cancerous that the radiation does its magic, and quickly.
There is little I can say except that I am holding you in my thoughts and sending you both all the healing vibes in the world.
I saw something on 60 Minutes recently. A 78 year old man with throat cancer was given a "sleeve" of a new substance made from pi's bladders...yes, pig's bladders...(a throw away product of the agricultural industry)...and it healed his throat completely, and he basically re-generated a new lining in his throat. I wish I could rememebr who was conducting the study but I think it might have been Johns Hopkins. I'll see if I can find more info. You never know...it might be worth looking into.
In the meantime, I am glad you have the support of your children. And, as always, we are here for you.
Love
Heather
my thoughts are with you and Jim at this very difficult time, know that your ds friends are here to support you when you need us.
xx hugs and love to you both and you family xx
smoking, alcohol, untreated reflux - hope this will be a wakeup call for some but denial is so much fun - until reality hits.
thank you for updating us.
I too am hanging on to that thread of hope that the PET scan will turn up clean and this is just the one nasty polyp that got out of control but is not cancerous (it just needs some extra treatment so it can be removed).
Every time Jim hiccups, think of it as all of us saying "we love you" (and we will continue to love you when the hiccuping stops too, which it hopefully will soon).
When ever you need to talk, vent or just have someone to reach out and hold your virtual hand, we're here for you, day and night. Between those of us around the world, in New Zealand and Australia, and those here in the US who are insomniacs, we pretty much have you covered, 24/7!
Whether he wants it or not, Jim is to be hugged regularly by you from his DS friends! You are all loved--a lot!
Gentle hugs,
Ruth
Lots of love to you and your husband.
PKDAD