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 never really thought I would be here at this point in my life. Two years ago my pain started slowly and I dealt with it for about six months until I couldn't any longer. I have since had a level 5-6 pain most of the time. I take alot of pain medications to get it to this point. I recently took short term disability in hopes that if I rested enough and had a consultation for surgery to remove cysts (decortication) that I would be out the 3 months and return to work happy and pain free. Even though I work in a doctors office I forgot how slow the medical system works. I have been out of work for 5 weeks and they received my medical records about 10 days ago and yet have called for consultation.
I fight this mild depression daily (already take Lexapro) because the pain has lowered my quality of life so much. I am not used to being dependent on others and often have trouble leaving the house for more then an hour at a time now.
My husband has been unemployed and finances are super tight, but we fortunately have managed so far by adjusting our living.
My questions:
1. It's coming time to decide if I will need to take long term disability (12-24 months) to take care of these issues. The problem is that my job will no longer be protected and i will be unemployed. I will likely be able to return at some point in the future because I am a great employee there, but I am struggling emotionally with this decision. I know in my heart that I cannot return to work until this pain is controlled more, but I want to work so much and the thought of losing my job breaks my heart. How do I decide?
2. How do you cope with loss of health and abilities and keep hope and good spirits? I am trying hard to accept my life at this point, but it's quite the struggle.
3. Has anyone had this procedure or others to decrease pain and what has been your experience? Did it take a long time from start to finish to seeing the specialist and having the surgery?
I fight this mild depression daily (already take Lexapro) because the pain has lowered my quality of life so much. I am not used to being dependent on others and often have trouble leaving the house for more then an hour at a time now.
My husband has been unemployed and finances are super tight, but we fortunately have managed so far by adjusting our living.
My questions:
1. It's coming time to decide if I will need to take long term disability (12-24 months) to take care of these issues. The problem is that my job will no longer be protected and i will be unemployed. I will likely be able to return at some point in the future because I am a great employee there, but I am struggling emotionally with this decision. I know in my heart that I cannot return to work until this pain is controlled more, but I want to work so much and the thought of losing my job breaks my heart. How do I decide?
2. How do you cope with loss of health and abilities and keep hope and good spirits? I am trying hard to accept my life at this point, but it's quite the struggle.
3. Has anyone had this procedure or others to decrease pain and what has been your experience? Did it take a long time from start to finish to seeing the specialist and having the surgery?
I personally haven't had any experience with cyst removal but I have had cyst aspiration, although it is well known that with cyst aspiration that the cysts generally grow back.
Does your consultant think this will cure your pain? I feel that surgeries such as this are only temporary because in most cases the cysts continue to grow and multiply causing bigger and bigger organs.
I really do feel for you because I have suffered with pain for quite a few years and it is now at the stage where I can't go out- I even find it diffidult maintaining an upright position when I'm in the house. I know for a fact (because I have had numerous scans and opinions) that removal of cysts would not help my condition at all.
It's a really difficult situation for you- how is your kidney function? Obviously if your kidney function is pretty good then you would not be looking to take any more drastic measures for the pain. Whilst I was working my pain management clinic offered me morphine for the pain but they advised that I would not be able to work in the same mental capacity that I had been. I made the choice at that time to continue to struggle and work using my TENS machine but sadly I too have had to finish for a while.
I have read some posts regarding removing nerves- but not sure what this would entail. If I was in your position now I would explore every possible procedure that is out there on the market before making a decision with regards to disability leave because you need to be sure that whatever you opt for is going to as permanent as you can get. I hopey ou get some more responses from members who have had other minor surgeries for pain.
Good luck Julie x
The procedure would only temporarily help with pain (estimated 1-2 years) before it returned. The problem is that I have to decide about work before anything will be done. At best, if they decide to have the surgery then it would be scheduled out a month or two and then recovery time. I have to decide to return to work (to save my job) by 11/21/11.
So sorry you are having such a bad time and having to make such big decisions. I only hope that whatever you decide to do it works for you.
P.s
I have copied the following extract from a PKD discussion on this forum a while ago. I don't know whether it's worth you looking into this post and perhaps reviewing the journal of the members involved to see how they got on with their procedures. You can just
put a word in the search discussion box and it will bring up all discussions with that word in it. I thought it might be worth looking into renal denervation with the decortification.
'and and other forms of surgery, to include fenestration or decortification, the formal names for deroofing (can be done laprascopic or as an open surgery and can include renal denenervation at the same time...'
I'm sorry about your situation.
I have no advice to give, but just some questions.
Of course, you need your job, but what about the quality of your life? There is no real security in life. You can't predict the future that after decortication you will feel better. (I certainly hope you do!)
A job is a job, but your body is your body.
I'm sure you know my next line...
You can get another job (not easily...) but you can't get another body!
As for coping, I found that by limiting the scope of my expectations, and being grateful that I still had some options kept me going, one step at a time.
I know these are "merely" words, but you do have options to talk to any number of people that may be able to help you sort out what's important to you so that you can make the best decisions for YOU at this time.
Peace and Blessings!
CoachRichie
If I read correctly, it doesn't seem that staying home has lessened your pain or improved your quality of life? So what have you got to lose by going back to work?
Lisa H
I just had renal decortication and denervation.
I am still recovering, so I'm not sure how it's going to end. But, so far, so good.
I just wanted to make sure to ask them to add denervation to your decortication.
Denervation is where they sever the nerves that follow the blood supply to your kidney.
Larry