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 had a melt down yesterday as the doctor never called us to tell us the results of the biopsy report. I called everyone I could think of and no one would help me. I finally called Jim's primary at my daughter Terri's suggestion and he finally got the results for me this morninig. I have not heard a word from Jim's ENT. He does have cancer but only in one vocal cord and it is of the squamous type, meaning only one layer of skin is involved. considered to be stage 1. Terri owns a couple health care companies in Richmond and put the word out to all of her doc's. Unanimously, they all came back with John Hopkins in Baltimore for a second opinion for cancer of the vocal cord. Jim's primary has ordered a CT scan to be done tomorrow and the blood work required to give a second opinion, as should be done with any cancer diagnosis. the question is should it be removed from his body or should we do radiation therapy, which for some people, is not a walk in the park. Because it will have to be done through his mouth, there is the danger of destroying his salivary glands which would leave him without any saliva in is mouth for the rest of his life. So we are carefully considering what we should do. John Hopkins is the best in this medical field.. We can send the results for a second opinion or we can go there, all of this is up to Jim to consider. He doesn't know about this yet because he is a work today. I thought it was best to get him out of the house and back into a rountine of some sort, he was becoming extremely depressed. He wants me to email him at work and tell him what the doc's have said, but there's no way I'am going to do that. He will be home at noon and we can talk about it then.
I guess if you have to have cancer, this is as good as it gets, at least he has lots of hope and a future to look forward to at this point in the game. Way better than what we were thinking.
Again, thank you all for being so supportative to us both, we appreciate it more than you will ever know. I guess this is the beginning of a longer life for Jim. I am so grateful that you can't imagine or maybe you can.
lots and lots of love,
Norma...
I guess if you have to have cancer, this is as good as it gets, at least he has lots of hope and a future to look forward to at this point in the game. Way better than what we were thinking.
Again, thank you all for being so supportative to us both, we appreciate it more than you will ever know. I guess this is the beginning of a longer life for Jim. I am so grateful that you can't imagine or maybe you can.
lots and lots of love,
Norma...
At least you know the results, and can make some decisions from here..... Oh Norma, what a weekend you guys must have had! And yet, still lots of decisions yet to make.... I sure am praying for good advice and that you will have confidence that you will be able to make the best decisions. You really have been amazing through this, and Jim is one lucky man.
Thanks so much for keeping us informed on how this is going. Do take good care of yourself as well.
Much love and prayers
Heather
So glad to hear that you have some answers! Cancer is never easy (my mother passed away from ovarian cancer almost 6 years ago...still seems like yesterday) but, thank the Lord there are options out there for you. Please know that I will definately keep you and Jim in my prayers that the Drs will know what to do to help you make an informed decision. Please hug eachother and know that we are all hugging you here!
Kelly
I am so sorry to hear your going thru this. My thoughts and prayers are with you and your family.
Nicki
scraping or surgical removal takes one treatment and of course a follow up to see how it went. it affects no other part of the body.
blood work can be done to follow up but so what.
of course mine were skin and not throat so that may change things.
Norma, I am glad this is the diagnosis because it could have been so much worse. please give Jim a big hug for me, tell him to take his reflux medicine, and thank God for this.
But you need to be warned that this is one of the most painful procedures they can do to you. The esophagus gets burned right along with the larynx, and you will stop eating. I lost 30 pounds during the 30 treatments. The pain starts increasing after about 10 treatments to the point where you will need narcotics. And every treatment makes the pain worse. You think it just can't get any worse, but it does, every time. I actually cried after each of my last 3 treatments, and I do not cry.
In every other kind of injury the pain lessens every day as the body heals, but with this treatment the pain grows with each treatment, and it is really miserable.
I got through it once, but I doubt that I have the courage to ever go through it again.
Still, it was better than the alternative.
love,
Norma...
These are tough challenges.
It seems you are constantly caught between a rock and a hard place.
My prayers are that a viable course of action is revealed to you.
God Bless!
CoachRichie