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.
After undergoing major surgery on 2/11/2011 having both MY kidneys removed my husband was struggling to cope with my illness and wasn't being very supportive. We managed to sort this out and over past few weeks he has been as supportive as he can be. Last couple of weeks there have been some changes. I have noticed that he doesn't seem to 'chat' with me anymore and when I try to make conversation he gives short responses. Over the Christmas week he went out 3 nights with pals and obviously I stayed in as not up to much yet. New Year's eve came and I was looking forward to us spending time together but he refused a drink and then fell asleep. He woke at 10.00 p.m and announced he was going to bed to watch football. I didn't see him until following day when he continued moping about. Finally at 4,00 p.m I asked him what his problem was and why he was acting so strange. He then announced that he no longer wanted to be with me. I was so shocked and upset. I have been struggling to try and get better and have let him have whatever freedom he needed but still it is not enough. I cried and cried all night (mostly feeling sorry for myself) but also for losing my friend and companion for last 26 years. My daughters overheard what was going on and were absolutely distraught and both were crying also. He was absolutely adamant that he wanted to live on his own (but was happy to stay with daughters) so we spent the whole day on 2nd January going through finances working out how we would split the bills etc. We didin't want to sell house yet as Casper our 16 year old cat could not go through trauma of moving so we agreed on me finding an apartment and he stay in house with daughters and cat. I can't manage the house on my own as it's too big. I went to bed at about 6.00 p.m with 2 sleeping pills as I had not slept night before. I overheard a strange sound coming from downstairs and went to see what it was. I found my husband crying unconsolably from downstatirs and I couldn't get any words from him so after half an hour went back to bed. He came up about an hour later telling me that he was sorry and wanted my forgiveness but he does not want to split up and does not want to be on his own. He said that he was trying to convince himself that being on his own would relieve all the stress he feels about my illness. I am very pleased about this change but now as this is the second occassion since my operation where he has mentioned splitting up I now feel very insecure. He won't go to doctors and I don't really know what I should do. Has anyone else experienced anything like this?
it sounds as if your husband is trying to cope with your illness, not with a lot of success.
if you haven't done so I would recommend therapy to help with this.
I agree that therapy is the only thing that is going to help now. If your husband won't go, you must go without him. Yes, he is afraid. But you do not deserve to be toyed with this way. At some point, you might decide that you need some space yourself.
My husband went through a brief period where he drank too much for my liking while I was sick. When I confronted him about it, he said it was his way of dealing with the stress of my illness. I was very clear that I would not take responsibility for that. If he felt that he needed to drink to deal with me, then I would be gone. Because that was too much to put on me. He got the message loud and clear although it was a very difficult conversation.
It would be very normal for you to be worrying about your husban dright now, how to get him help and how to make him stay. But right now you cannot control all of that. That will only stress you out. You can only control your own life, not his. So I really advise getting some counseling for YOU.
All the best and lots of hugs Julie.
I have found that most of us marry, with expectations of what our spouses will do to "meet our needs". It goes both ways. Then reality comes along and either one or both of us realize that our expectations are NOT being met.
At this point, there are choices we can make. We can either be angry, and blame the other guy for NOT meeting our expectations, or we can blame ourselves..... but neither of these things are going to work. The thing is, no one else is going to be the one to meet our expectations. We need to get a reality check. I say this, having been through these things. We can in no way control, manipulate, blame, or shame our spouse (husband or wife) to change to be what we need. We can honestly speak our heart, but we cannot make the other one "hear" our heart.
My husband is an engineer, and he knows some of the "formulas" but in no way has he ever "been there" present to hear my heart. He is a good provider (well, actually a workaholic) and knows about his own emotional wants and needs, but assumes a lot about me, without ever spending any time "hearing" me. That's just the way it is. I did spend some time trying to change him, but it really was counter productive. So the only thing that I could do was change myself. In the process, I learned a lot about myself, what reality is, and how to find the beauty and goodness in life, amidst the suffering, and hardships. That doesn't mean things are all rosy in my life, at all. But a lot of anger, fear and disappointment has been diffused. Yes, I have cried at the loss, and I have deal with it.... as you are doing. But, one does not know what the future holds. We have to be careful not to take the hard times and worry them into bigger, worse issues nor project them on our future. Who knows what amazing miracle could happen in the future. But if we are fearful and worrying, we may not see a possibility or opportunity clearly when it presents itself.
I have to say that I am very encouraged to hear that your husband is in turmoil over this, rather than denial. That means he's alive and human..... (gosh, he is suffering as well). You two have had some communications over this. That's really wonderful dear. It's not easy, but being honest, and trying to see things deeper and from a different perspective has great rewards. I am hoping that you will have courage and continue, with hope, to talk this out, to be honest, and to not pull back from each other with self protection, but be brave to see where you can be there for each other. Blessings to you, my prayers are with you.
Love
Heather
Monday is my best day as I have 2 days between dialysis so we have decided to make it date day and either go out during the day for a bit of lunch or go out in the evening - nothing too flashy just maybe something to eat or the pictures. I am feeling confident that this will help our situation. Thanks once again for your words of wisdom Julie xx
Chewitt
How would your husband respond if (God forbid!) one of your daughters had PKD? (which is obviously very possible!)
In any case, as hard as it may sound, your first responsibility is to yourself!
Do what you can to get your BP down!
(Yeah, right you say, with all the stress!)
Also, I'm just curious how he would feel if the situation was reversed.
So...you're sick, he's confused, and your daughters...well, who knows the state they're in!
Sometimes, you have to let go of the things you can't control.
Do you what you can control..(diet, meds, appointments).
The rest?
One day at a time, and...what will bw, will be.
Peace and Blessings!
CoachRichie
lots of love,
Norma...
I realized that I needed to find a positive way to find the best in the reality of it all.... if not for myself, then for her. I wanted to model this for her. And sure enough, in September she found out she does indeed have this. That really spurs me on to do the best that I can, and then to be at peace, to find the goodness that is unique to me..... and trust that my daughter will also find hers.... (as I have a lot of confidence she will).
There are a lot of things we cannot control, but we can make choices in how to respond.
Again, blessings!!!!!
Thanks again everyone Julie xxx