Polycystic Kidney disease chat & community

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I hope this holiday season finds you all with spirits high. I have been having some problems getting my husband to see the doctor. I am embarassed to even say this because I know how important it is for all who have PKD to take control of their own health and well being. I know that most who come to this site take such pride in knowing what their bodies are doing and are so knowledgeable about all of their labs and are constantly educating themselves in any aspect of this disease. My husband is such an intelligent and caring man and this is so hard for me to understand how he can put off anything that has to do with his health. I know that when you have to start facing new phases of declining health you do have to adjust to a new way of thinking and it is very frightening but I am so frustrated and do not know how far to push. I love him so much and he knows that we will be in this together and I will be his best supporter through all that will come. I don't know weather I should just not say anything more and let him make all of the decisions about his own health or keep asking him to get help. He is declining and with aneurysms in the family and many other problems, I am afraid that something will happen suddenly and with dire consequences. We don't fight or argue about this, that is just not us, it is more that I plead with him and he says he will go and just never does. I just don't understand. Even though we don't argue, it is starting to anger me because I am so afraid. The anger all comes from fear but I never let him see my anger. Maybe I should. I guess I have gone on long enough. I know nobody can give me the answer but if you have any suggestions I sure would appreciate it. Has anyone else gone through this denial? It sure would help to know that he is not the only one and that there is hope. Thanks for listening and I hope I did not depress everyone during this lovely season. May peace and joy be with you all.

Every single one of us with PKD has gone through this denial. We realize our health is not perfect and we are suddenly vulnerable. I think men more often than women take the path of "if I don't see a doctor then it doesn't exist". Give him a bit of time and leave him through the Christmas season and then afterwards perhaps talk to his nephrologist to find out just how often your husband should be in for a visit and make a couple of appointments for him, try to ensure he keeps them. Unfortunately this is his choice and you can't control his behavior nor are you responsible for it. All you can do is keep the lines of communication open, be available to support/assist him where needed, and cross your fingers that he will eventually open his eyes and deal with PKD and accept it. Once he does that, all should go alot more smoothly.

Here's my two bits. I forget how long your husband has known or where he is in the disease. But in my case I've known I had it for 17yrs and was trouble free until the last 2. Even in the last 2 the doctors are sceptical that my problems are due to PKD, but I am sure it is playing some role in it. Anyway, men in general are stubborn as you probably know. Why fix it if it aint broke seems to be fitting. But when his body tells him there is a problem, believe me he will be trying his darndest to figure out why. In the meantime he needs to establish base line data by having all the bloodwork, urinalysis, and sonograms done. Who knows nothing else may ever need to be done, or at least it will be many years before problems set in. But if you have the baseline it gives you something to compare to. Also you can help behind the scenes by limiting his salt intake, and making sure he stays away from contact sports. If you can get him to take his blood pressure occasionally so that you know where he is there too. I know this sounds silly but even these little things can help prolong things. I can understand your frustration, but until he realizes how important a role this will be playing in his life he will be oblivious to what is going on. He is very lucky to have someone as caring and thoughtful as you, I think my wife is the one in denial now. Keep trying to educate him and just love him, believe me he will come around.

Take care and good luck.

Heck, if anyone claims they DIDN'T go through this they are in denial! The worst for me was not the dx. but crossing over from just having PKD to needing dialysis. I was seriously slipping and tried to find any one of a number of reasons other than needing dialysis to pin my symptoms on. It was hard having PKD, but just having it gave no hint to the outside world that I was ill with in incurable disease. Once one has to receive tx. however, it's all out in the open! Your husband may feel that once he receives tx. that is the beginning of the end. I've had lots of pts. over the years who would say "If I had my way I would never have gone to see the doctor" implying that if they didn't get a dx. all would be well, which we all know is a load of crap! Ignorance is not bliss; it's denial! Knowledge is power. Tell your husband how much you love him. Tell him that if he likes you will go with him to the neph.. Tell him just as lots of woman admire a man who eats right and works out in an effort to take care of their body, and going to the docs. is no different; it's taking care of one's body! That shows a guy cares for himself and his family. I hope he sees the light! Lin.

I have a similar problem with my boyfriend who doesn't have PKD but is diabetic, high

blood pressure, high cholesterol and sleep apnea. a while back he started smoking cigars on

a daily basis, sometime up to 5 a day, he absolutely stunk. then when he knew it was cigars

or a new place to live he started smoking cigarettes (thinking I couldn't smell them). his

clothes stunk, his hair, his beard.

at 51 a man does not need to start a filthy, unhealthy, expensive habit.

after almost breaking up we started counselling and he agreed to smoke 1 cigar a week, and

he is actually smoking less than that.

you may have to make an appointment for your husband and go with him, to make sure it

i know you wrote about this back in 2002 but i was going through these and wanted to share with you. My husband is ESRD awaiting a transplant, however, he is drinking heavily, refuses to admit he has a drinking problem and now it has affected me. He hides his beer and lies about things. he has NEVER been a drinker our whole 33 years of marriage until the last 10 years. His children see the damage, i see the damage,he drinks and drives, his pcp knows he drinks but he will not admit it. i have asked him to go to counseling and he thinks he is fine. what do you do? why waste a transplant on someone who is not taking care of himself????

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