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.
Hello everyone
Here I go on again hapring on about my husband who doesn't understand. I don't know what to do. I am not frightened of my husband but I feel like I am walking on eggshells around him and darenlt mention how I'm feeling. Unofrtunately I am having a bat time with this at the moment but am not allowed to mention it because recently (last 3 months) he's been in a mood whenever illness is mentioned- even if it's my daughter seeing her neophrologist.
I feel like I'm getting to the point where I close up all together and increase my anti-depressents just to get through the day. If i'm too ill to get out of bed he doesn't come to see how I am- doesn't think of bringing me a drink- just 'prefers' to keep me shut away in my bedroom on the top floor whilst he's on the ground floor (3 storey house)
I've not been able to drive for weeks doe to how unwell I have felt, and would normally take myself to my hospital appointments, but recently he understands that he needs to come with me to get me there and back.
Today I had 3 appointments 10.00 with nephrologist, 10.20 with fistula surgeon who then needed to do pre-op assessment for my fistula surgery that I will have next week to try and get this ready for Big Op on 2nd November. They are pulling the stops out to try and get everything ready for my benefit, and yet my husband was being very discourteous with them about how long we were there and left me in hospital to go and sit in the car then proceeded to ring me and rant and rave so they could hear him- I was so emabarassed when I feel like they are potentially trying to save my life. I ended up having to decline an ECG because of his attitude but will have to return tomorrow as my previous one wasn't clear- and I'm gonna have to drive myself because he's a'loose cannon'. All they way home he shouted and swore at me for wasting his day (he has his own business and had no jobs booked in). He's been ignoring me all night and I just feel like bursting into tears - I don't know what to do and feel like he's punishing me for beng sick. I can't speak to him because he goes into Mr Angry mode.Once I've had fiistula operation next week they said I can't drive for 6 weeks and I have loads more appointments scheduled in before op on 2nd November. I was also expecting to rely on him to take me shopping for Xmas gifts before my Op but now that won't be happening and I can't go alone due to fainting etc when I'm out. He won't discuss Christmas. Please help does anyone else have this problem - what can I do- we have tried talking about it and we dont get anywhere. He thinks what he did today was totally acceptable, and then just starts ranting about it saying' do they think we all have time to waste on appointments which run late' Help- I'm suffocating and see real problems for my future as my health is gonna get much worse before it gets any better- then if cancer is also in the mix there could be even more appointments- what can I do- why is he being like this- how should I handle it? I feel anxious when he's in the house in case I need to lie down which is pretty much everyday. Sorry I know I'm waffling again but I'm really stumped and really worried.
Here I go on again hapring on about my husband who doesn't understand. I don't know what to do. I am not frightened of my husband but I feel like I am walking on eggshells around him and darenlt mention how I'm feeling. Unofrtunately I am having a bat time with this at the moment but am not allowed to mention it because recently (last 3 months) he's been in a mood whenever illness is mentioned- even if it's my daughter seeing her neophrologist.
I feel like I'm getting to the point where I close up all together and increase my anti-depressents just to get through the day. If i'm too ill to get out of bed he doesn't come to see how I am- doesn't think of bringing me a drink- just 'prefers' to keep me shut away in my bedroom on the top floor whilst he's on the ground floor (3 storey house)
I've not been able to drive for weeks doe to how unwell I have felt, and would normally take myself to my hospital appointments, but recently he understands that he needs to come with me to get me there and back.
Today I had 3 appointments 10.00 with nephrologist, 10.20 with fistula surgeon who then needed to do pre-op assessment for my fistula surgery that I will have next week to try and get this ready for Big Op on 2nd November. They are pulling the stops out to try and get everything ready for my benefit, and yet my husband was being very discourteous with them about how long we were there and left me in hospital to go and sit in the car then proceeded to ring me and rant and rave so they could hear him- I was so emabarassed when I feel like they are potentially trying to save my life. I ended up having to decline an ECG because of his attitude but will have to return tomorrow as my previous one wasn't clear- and I'm gonna have to drive myself because he's a'loose cannon'. All they way home he shouted and swore at me for wasting his day (he has his own business and had no jobs booked in). He's been ignoring me all night and I just feel like bursting into tears - I don't know what to do and feel like he's punishing me for beng sick. I can't speak to him because he goes into Mr Angry mode.Once I've had fiistula operation next week they said I can't drive for 6 weeks and I have loads more appointments scheduled in before op on 2nd November. I was also expecting to rely on him to take me shopping for Xmas gifts before my Op but now that won't be happening and I can't go alone due to fainting etc when I'm out. He won't discuss Christmas. Please help does anyone else have this problem - what can I do- we have tried talking about it and we dont get anywhere. He thinks what he did today was totally acceptable, and then just starts ranting about it saying' do they think we all have time to waste on appointments which run late' Help- I'm suffocating and see real problems for my future as my health is gonna get much worse before it gets any better- then if cancer is also in the mix there could be even more appointments- what can I do- why is he being like this- how should I handle it? I feel anxious when he's in the house in case I need to lie down which is pretty much everyday. Sorry I know I'm waffling again but I'm really stumped and really worried.
Thank you for your thoughts- it's so good to get a man's perspective on this. I have thought about getting my GP involved for quite a few weeks now. I know my GP does not know as much about the condition as my nephrologists do but both my husbnd and I have the same GP and I know Nigel respects his opinion. I have told my GP before about me and Nigel arguing about the food situation because he was trying to force feed me every day and this caused us huge arguments. My doctor agreed that he would speak to him about this the next time he saw him but it didn't actually come to that in the end because I told Nigel about my conversation with the doctor and this was all it took for him to stop. I did go to the doctors the other day and did consider bringing it up but he had students with him and wanted them to examine me for a 'test' so I was in ages and couldn't be shamed to take more of his time when other patients were waiting outside, but it is definitely still on my radar if things don't improve. A couple of my family members have this condition, but they don't seem to have the problem of the huge kidneys and liver so the mechanical issues I suffer with like walking breathing and eating are not shown by them. My mum is around a similar function level to me and about to start dialysis when her fistula is ready, and my aunty is already on dialysis but they regularly go out shopping and bingo etc. so in my husband's eyes could appear that I am exaggerating. Also my mum and dad came to my house last night and started talking about 'it'. My husband made them a drink and then said 'I'm going to my brother's because I'm bored'. I had to then explain to my mum and dad that he wasn't coping with 'it' very well and not to take it personally. I wanted to 'have a go' at him about being rude to my parents as I only seem them abut once every six weeks but I decided to let it go. I did taste his cooking yesterday even though I wasn't eating it and I told him how good it was. Tonight he brought a little bit up to me to taste again and give my opinion- it was delicious and I told him so- This seemed to make him very please with himself. I'm not trying to patronise him - I just want to show my appreciation for the things he is doing whether they are specifically for me or not. The other point you have made about whether he can cope with this in the long terms- I did mention it to him a few weeks ago without actually asking a direct question. I was really upset as I had come home from hospital very weak and had been in bed for about 3 days and notseen him once- I was so tired that I could hardly wake up, and unfortunately he didn't make me so I wwas going round the clock without fod or drink, or tablets. When I finally woke up I needed to make him realise how dangerous it was not having anyone caring for me properly nd I tried to explain that the exhaustion I felt (as I had lost a lot of blood) took over me more than hunger, thirst or logic, and I needed him to think for me and wake me to take drinks and tablets etc. He argued and refused to accept what I was saying so I then said 'you need to think whether you can live with me being this il becuase it is going to get worse before it gets better and I am very worried that you are not strong enought to care for me after my big operation'- He didn't answer and we didn't bring it up again. Like I said before I am worried- but I think there are things I can do to change this situation aswell- it may work it may not- but I'm gonna try. I will make sure all my friends know when I am coming out of hospital and give them instructions to check up on me by ringing or popping round just to prompt him now and again. Today I didn't feel well and was in a lot of pain- I only got out of bed at 3.30 p.m- again no-one came near the bedroom in all that time so eventually I had to drag myself out of bed because I was gasping for a drink. I am going with him to do the shopping this week even though he is adamant that he doesn't want me tagging along- I need to make sure I can get big bottles of water and any long life snacks that I can manage so I can keep them next to my bed. In fact I could do with a fridge in my room- I might consider this. Thank you for your input- all these little recommendations from everyone and their insights are giving me ideas to make this situation better for myself and hopefully for Nigel too. Thank you so much for taking the time to respond to my post
I will keep everyone updated on my progress with this Julie x
My husband is rather proud of the fact that he doesn't need much sleep. It runs in his family, they all have so much energy that I want to take a nap after spending time with them :)
Does your NH provide visiting nursing assistance? I hate to think of you isolated in your room for extended periods of time and am very glad to hear that your friends are going to pitch in.
lisa
THanks x