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 apologise now for any typos because I ahve already taken sleeping meds and am a bit drowsy. Had my double nephrectomy on 2nd November due to problems experienced from size of kidneys and also suspicion of cancer. I am cancer free- tumors are not cancerous! Also I have plenty room now to eat (which I have not done for 2 years - i.e managed on milkshakes) and also I cna lie flat without my breathing being restricted so my life feels so optimistic at the moment and I can't wait for each and every improvement in my abulities every day.
The operation went really well- The surgeoins had told me they expected it to take 7-8 hours but it took between 4-5 hours and they also conducted a bladder cystoscopy and gave me all clear on that too. Gallbladder that seemed to be troubling me was examined and it was fine. They have advised that my liver is extremely large and much bigger than my kidneys and the spasmodic pain I have been having in my rib cage has been coming from this. I am unable to tell whether the pain has completely subsided so only time will tell. They have alsp mentioned that I need to be monitored for my liver as it may now grow faster now there is room- noty worrying about this yet though.
I had a general anaesthetic and also an epidural fitted so that they could feed it to me for first 3 days. During the op I obviously had plenty fluids and a couple of blood transfusions including the pain killing medication and anything else they gave me. For a couple of days the pain was pretty much well controlled until I tried to move. So lying in bed all day was pretty uncomfortable. My back seemed to be very sensitive probably due to large space left and was in too much pain t adjust my position. Unfortunately after a couple of days I still had not had any dialysis and wasn;t eating or sleeping. The wprst thing happened- I began having very realistic hallucinations- I can laugh about it now but for about 3 days I ws convinced they were trying to kill me and became very frightened and stressed whioch began to have an impact on my health and recovery. I tried to rip my tubes out and call the police- I was so scared and thought my life was over. I was so convincing with my stories that they embarked on a full investigation around the claims I was making (I thought they were taking photos of me) I convinced my whole family that I was in danger. I completely remember everything that happened and now know it was all hallucinatory and would hate for anyone to have to go through that. I ended up in a very critical state and was moved to ICU from the surgical high dependency ward. They prescribedme drugs for hallucinations which added to the toxins and they started to wean me off the epidural as they felt this was causing my hallucinations. It worked and I came to my normal senses but the pain was extremely significant and I couldn't do anything. I couldn't sleep, talk, read-m the pain was too much . I begged them for more but they explained that they had to balance my medication with the hallucinatory effects. After about a week I wa still in bad pain- My hemoglobin had a drastic drop and I had to have a couple of back to back transfusions as I fell unconscious. After that I began to get better so they moved me to renal high dependancy which felt very similar- I had my own nurse in my bay all day but they were specialised in renal. Immediately they wanted ot help me with the pain- what a difference- within a few hours after a few good doses of morphine and standard pain killers I became more alert and ready to start some exercise. My nurse worked really closely with me escortuing me to shower every day and chrcking on me every hour during night ensuring that my pain relief did not disappear. It was he mose fabulous care ever. They also put me on hemofiltraton for a couple of days. I understand that this is 24 hour dalysis but it only removes fluid it does not clean your blood. I had bloated so much that the balls of my feet were like golf balls and I couldn't bend my legs so my physio sessions had to be cancelled as I could not walk. They they started hemodialysis sessions. Unofrtunately first couple of sessions they struggled getting needles in and only managed 1 which didn't give me good dialysis or any significant fluid removal. I became very breathless so they got their best dialysis nurse in the hospital to do the needling on me becuase my fistula is so small most cannot needle it. They did a mammoth session and took off quite a lot of fluid- they advised that this was the most they could take without it affecting my health. In the last twenty minutes I passed out so they had to get me off in an emergency. I had daily dialysis daily for 2-3 days following this during which I got sick but fluid was definitely coming off. Tuesday this week had a really good session and they reached the weight they were aiming for even though they know there is still excess fluid there. They advised me that my hemaglobin has dropped quite drastically and so are prescribing 3 lots of EPO in my next dialysis on Thursday. They then let me home. It's absolutley amazing being home and being hungry eating more or less what I want as my potassium and phosphate are pretty low at the moment. Fluid restriction of 500 mils is a real challenge but I am managing it for now. I sip all day from a 500mil water bottle(only filled to 480 mil) and try to save as much as possible and at 9.00 at night I put vimto in and leave in fridge for an hour so then at 10.00 I can enjoy a good gupling from my bottle of vimto. I am obviously restricting fluid in my food aswell. As some of you my have read before I have been having 'trouble' woth my husband andit all came to a head on Tuesdy when I came out of hospital. I never felt so unwelcome in my own house in all my life. We have had a few cinfontations on this ans I asked for a separation. I will update on this another day because this update has gone on long enough for now. I am at home struggling getting about (3 story house) and missing handrails and bed rails to help me manouvre but other than that all is good and every day somehitn else becomes easier. Today I crossed my legs for the first time since operation- I have been trying to do this for a while and not been able to so improvements are small and slow but they are still there and keep me motivated and optimistic. And being with my daughters again is fantastic. Hospital photographer took photos of kidneys but I have to officially complete a form to receive a copy. I understand that this has to be legally approved so not put wheels in motion for this yet but as soon as I have photos I will post on here. further update to follow in next couple of days
The operation went really well- The surgeoins had told me they expected it to take 7-8 hours but it took between 4-5 hours and they also conducted a bladder cystoscopy and gave me all clear on that too. Gallbladder that seemed to be troubling me was examined and it was fine. They have advised that my liver is extremely large and much bigger than my kidneys and the spasmodic pain I have been having in my rib cage has been coming from this. I am unable to tell whether the pain has completely subsided so only time will tell. They have alsp mentioned that I need to be monitored for my liver as it may now grow faster now there is room- noty worrying about this yet though.
I had a general anaesthetic and also an epidural fitted so that they could feed it to me for first 3 days. During the op I obviously had plenty fluids and a couple of blood transfusions including the pain killing medication and anything else they gave me. For a couple of days the pain was pretty much well controlled until I tried to move. So lying in bed all day was pretty uncomfortable. My back seemed to be very sensitive probably due to large space left and was in too much pain t adjust my position. Unfortunately after a couple of days I still had not had any dialysis and wasn;t eating or sleeping. The wprst thing happened- I began having very realistic hallucinations- I can laugh about it now but for about 3 days I ws convinced they were trying to kill me and became very frightened and stressed whioch began to have an impact on my health and recovery. I tried to rip my tubes out and call the police- I was so scared and thought my life was over. I was so convincing with my stories that they embarked on a full investigation around the claims I was making (I thought they were taking photos of me) I convinced my whole family that I was in danger. I completely remember everything that happened and now know it was all hallucinatory and would hate for anyone to have to go through that. I ended up in a very critical state and was moved to ICU from the surgical high dependency ward. They prescribedme drugs for hallucinations which added to the toxins and they started to wean me off the epidural as they felt this was causing my hallucinations. It worked and I came to my normal senses but the pain was extremely significant and I couldn't do anything. I couldn't sleep, talk, read-m the pain was too much . I begged them for more but they explained that they had to balance my medication with the hallucinatory effects. After about a week I wa still in bad pain- My hemoglobin had a drastic drop and I had to have a couple of back to back transfusions as I fell unconscious. After that I began to get better so they moved me to renal high dependancy which felt very similar- I had my own nurse in my bay all day but they were specialised in renal. Immediately they wanted ot help me with the pain- what a difference- within a few hours after a few good doses of morphine and standard pain killers I became more alert and ready to start some exercise. My nurse worked really closely with me escortuing me to shower every day and chrcking on me every hour during night ensuring that my pain relief did not disappear. It was he mose fabulous care ever. They also put me on hemofiltraton for a couple of days. I understand that this is 24 hour dalysis but it only removes fluid it does not clean your blood. I had bloated so much that the balls of my feet were like golf balls and I couldn't bend my legs so my physio sessions had to be cancelled as I could not walk. They they started hemodialysis sessions. Unofrtunately first couple of sessions they struggled getting needles in and only managed 1 which didn't give me good dialysis or any significant fluid removal. I became very breathless so they got their best dialysis nurse in the hospital to do the needling on me becuase my fistula is so small most cannot needle it. They did a mammoth session and took off quite a lot of fluid- they advised that this was the most they could take without it affecting my health. In the last twenty minutes I passed out so they had to get me off in an emergency. I had daily dialysis daily for 2-3 days following this during which I got sick but fluid was definitely coming off. Tuesday this week had a really good session and they reached the weight they were aiming for even though they know there is still excess fluid there. They advised me that my hemaglobin has dropped quite drastically and so are prescribing 3 lots of EPO in my next dialysis on Thursday. They then let me home. It's absolutley amazing being home and being hungry eating more or less what I want as my potassium and phosphate are pretty low at the moment. Fluid restriction of 500 mils is a real challenge but I am managing it for now. I sip all day from a 500mil water bottle(only filled to 480 mil) and try to save as much as possible and at 9.00 at night I put vimto in and leave in fridge for an hour so then at 10.00 I can enjoy a good gupling from my bottle of vimto. I am obviously restricting fluid in my food aswell. As some of you my have read before I have been having 'trouble' woth my husband andit all came to a head on Tuesdy when I came out of hospital. I never felt so unwelcome in my own house in all my life. We have had a few cinfontations on this ans I asked for a separation. I will update on this another day because this update has gone on long enough for now. I am at home struggling getting about (3 story house) and missing handrails and bed rails to help me manouvre but other than that all is good and every day somehitn else becomes easier. Today I crossed my legs for the first time since operation- I have been trying to do this for a while and not been able to so improvements are small and slow but they are still there and keep me motivated and optimistic. And being with my daughters again is fantastic. Hospital photographer took photos of kidneys but I have to officially complete a form to receive a copy. I understand that this has to be legally approved so not put wheels in motion for this yet but as soon as I have photos I will post on here. further update to follow in next couple of days
I have been married 27 yrs but separated in 2009. We have been trying to get back together by seeing each other on weekends....when HE is free. 3 weeks ago I said to him I want to come back home..I finally felt comfortable in our family home but he wasn't ready. He wants me to be financially independant as he says he can't afford my medications I'm on for Bipolar. His family also is not ready for me to be back in their lives yet I have never done anything to them.
They say its because I hurt him by leaving him so that hurt them. Never mind that he had an affair for 3 yrs with a woman from his work that I only found out about the day before our 26th anniversary (a year after I had left him due to my manic episode.)
Anyway I decided that I have to move on.....If he still has things to think about and he also said he doesn't want to make a mistake (whatever that means). Sunday night he said he's doesn't want to lose me and wants me to come home. Too late...i feel it's only now that he realizes he could lose me he has made his decision.
The only thing that makes me want to go back is the thought of being on my own and on dialysis. I've cut my bipolar medications right back to try and lose some of the 20kg i put on since being on them. I think much of the weight is also from my kidneys.
I am 165cm tall and weigh 93kgs and wear size 18 clothes.
Did your nephrologist suggest your double nephrectomy or did you insist/ask for it? What problems were you having?
I'm sorry if you have already answered all these ? on other forums.
Just tell me where to find it so you don't have to repeat yourself.
And all the best with your marriage and healing and dialysis.
I will not go into too much detail now as I have just finished ,my dialysis session and haven't been too well recently. I just wanted to acknowledge your response but will message you privately as I'm sure everyone else does';t want to hear about me again. So sorry you are having issues with your husband as well as your bipolar and PKD. It's the last thing we want when dealing with sickness isn't it?
I was having a lot of trouble with size of kidneys and liver and could not eat solid food,so struggled walking and breathing as well as in a lot of pain. So the plan was to remove both my kidneys once I got to dialysis stage- I was actually at 10% function but not yet on dialysis. Other circumstances took over when they suspected renal cell carcinoma and rushed the operation through. I have no cancer though- so that's a huge relief. The operation is really hard going, well it was for me anyway so don't jump into this without getting all the negatives aswell as the positives. I will message you over next couple of days. Speak soon JUlie x