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.
Not been in touch lately as been having a few health issues with my recovery. I have been reading all your lovely messages and all the posts but more often than not I am too 'goosed' to reply. Please bear with me as I am getting stronger every day and will eventually get back to you all. Just wanted to give a bit of an update to those who think I have disappeared off the face of the earth.
Had my double nephrectomy on 2nd November and left hospital on dialysis two weeks later. I think my body was running on adrenalin at the time as I reported how well I was doing to everyone who asked, but now don't feel too great. Dialysis has been a bitch giving me cramps and sickness, not to mention the gastric problems and the 7hour days at the hospital 3 times a week are no picnic. My haemoglobin was very low, and if you have no kidneys (like me) you cannot make red blood cells anymore so am relying on EPO. Unfortunately this is not really taking effect and my haemaglobin has dropped even further as they blew my veins last week on dialysis and couldn't dialyise me. By the time they realised and took me off the machine my blood in the machine had clotted and they couldnt return it to me. On top of that they struggled stopping the bleeding and left a pool of blood on the floor. Obviously this has left me with even lower levels of haemoglobin (I am too frightened to ask what level it is) as I have been suffering anxiety and panic attacks about death recently. The hospital know this and don't give me information unless they really have to. They have just assigned me to bed rest as before and keep saying I might have to have a blood transfusion if my levels don'laimprove. Obviously this is not something that they or I want to consider because it makes it much harder for them to find a match for a transplant due to mixing of antibodies. The good news is that the dialysis sessions are getting better and I rarely feel queasy now. My food intake is great and I am more or less eating what I want in moderation. I am coping with my 500 mil fluid restriction and because I'm sleeping more due to feeling of exhaustion find that fluid is more than adequate for amount of time I am awake. I have had some further bad news as I have been having a lot of pain in my left upper quadrant of abdomen. The doctor examined me last week and said that my liver was now growing very quickly and had moved into the space left by my kidneys so I am now suffering with constant liver pain. I am coping and this is managed quite easily with morphine which I am taking daily. I am now being referred to hospital to care of liver specialist so will keep you updated on that. I now have a wheelchair and am planning on undertaking an outing with my duaghter on Thursday to buy other daughter some wrap ups for Christmas. My daughter Jordan who will be pushing me around is none to pleased but hey hoh if I can sit in it she can push it. I am seeing a psychologist weekly now, firstly for relationship issues and secondly for death phobia. My relationship with my husband has improved dramatically and I now am certain that his way of coping with 'me' was to go out and get away from 'it'. Since suggesting a separation he has completely changed although I am careful what I say out loud about how I am feeling. The other night I slept on the sofa as I wanted to catch my youngest daughter before her going out to work as she had an interview the next day, and I wanted to give her some last suggestions, I also felt quite sick after dialysis, and it was just easier to cover myself up than to go to bed. The next day he told me how he fretted all night and came to check on me throughout the night because he kept thinking I may roll off the couch or struggle with my breathing as I have done recently. I think that shows that deep down he does care and I am now confident that he has not been cheating on me as I previously thought.
Overall I'm feeling better than before operation but now have some other issues to deal with. I am cheery most days and have had a couple of outings, once to my aunty's house for grandmas memorial get together and second to pub for roast dinner lunch with hubby. Not really been up to anything more but expect it all to come in time.
Thank you for all your messages of well wishes and concern. I think I am coping well under the circumstances and still feel that this was the best choice I made. Please keep me in your thoughts and prayers and I wll try to update you more again soon. Love and best Wishes Julie xxxx
Had my double nephrectomy on 2nd November and left hospital on dialysis two weeks later. I think my body was running on adrenalin at the time as I reported how well I was doing to everyone who asked, but now don't feel too great. Dialysis has been a bitch giving me cramps and sickness, not to mention the gastric problems and the 7hour days at the hospital 3 times a week are no picnic. My haemoglobin was very low, and if you have no kidneys (like me) you cannot make red blood cells anymore so am relying on EPO. Unfortunately this is not really taking effect and my haemaglobin has dropped even further as they blew my veins last week on dialysis and couldn't dialyise me. By the time they realised and took me off the machine my blood in the machine had clotted and they couldnt return it to me. On top of that they struggled stopping the bleeding and left a pool of blood on the floor. Obviously this has left me with even lower levels of haemoglobin (I am too frightened to ask what level it is) as I have been suffering anxiety and panic attacks about death recently. The hospital know this and don't give me information unless they really have to. They have just assigned me to bed rest as before and keep saying I might have to have a blood transfusion if my levels don'laimprove. Obviously this is not something that they or I want to consider because it makes it much harder for them to find a match for a transplant due to mixing of antibodies. The good news is that the dialysis sessions are getting better and I rarely feel queasy now. My food intake is great and I am more or less eating what I want in moderation. I am coping with my 500 mil fluid restriction and because I'm sleeping more due to feeling of exhaustion find that fluid is more than adequate for amount of time I am awake. I have had some further bad news as I have been having a lot of pain in my left upper quadrant of abdomen. The doctor examined me last week and said that my liver was now growing very quickly and had moved into the space left by my kidneys so I am now suffering with constant liver pain. I am coping and this is managed quite easily with morphine which I am taking daily. I am now being referred to hospital to care of liver specialist so will keep you updated on that. I now have a wheelchair and am planning on undertaking an outing with my duaghter on Thursday to buy other daughter some wrap ups for Christmas. My daughter Jordan who will be pushing me around is none to pleased but hey hoh if I can sit in it she can push it. I am seeing a psychologist weekly now, firstly for relationship issues and secondly for death phobia. My relationship with my husband has improved dramatically and I now am certain that his way of coping with 'me' was to go out and get away from 'it'. Since suggesting a separation he has completely changed although I am careful what I say out loud about how I am feeling. The other night I slept on the sofa as I wanted to catch my youngest daughter before her going out to work as she had an interview the next day, and I wanted to give her some last suggestions, I also felt quite sick after dialysis, and it was just easier to cover myself up than to go to bed. The next day he told me how he fretted all night and came to check on me throughout the night because he kept thinking I may roll off the couch or struggle with my breathing as I have done recently. I think that shows that deep down he does care and I am now confident that he has not been cheating on me as I previously thought.
Overall I'm feeling better than before operation but now have some other issues to deal with. I am cheery most days and have had a couple of outings, once to my aunty's house for grandmas memorial get together and second to pub for roast dinner lunch with hubby. Not really been up to anything more but expect it all to come in time.
Thank you for all your messages of well wishes and concern. I think I am coping well under the circumstances and still feel that this was the best choice I made. Please keep me in your thoughts and prayers and I wll try to update you more again soon. Love and best Wishes Julie xxxx
Thank you so much honey for giving to this group and we will all pray that your healing is continuing on a daily basis.
Love,
Norma...
So lovel to speak to you again.
Thank you for your concern and wishes - I really appreciate them as I do from everyone who has sent them to me.
The double nehrectomy is an operation that should only be considered as a last resort. Mine at the time was rushed through due to suspicioun for cancer which I am very glad to say was not the case. I was at 10% kidney function and in constant pain from my kidneys. This was on top of not being able to breathe properly and not being able to eat solid food. Having now gone through the operation I now know that I would wait much longer and try to get fully established on dialysis before even considering this type of operation. For me it was 'horrific' and I'm sure mine was probably easier than most. But trying to get established on dialysis when your body is already in such trauma is really hard and it is only now that I am starting to have decent dialysis sessions. Unfortunately I have been left with some psychological scarring which generally ends up in tears and panic attacks and now even typing this I can feel them coming on. This is a truly horrific operation and I know others have been through this whist receiving a trasnplant in same operation, so feel that in this partciular cicumstance the patien could be more stimulated with adrenalin rushes and not realize how bad the recovery actually is. I too went through quite a few adrenalin rushes where I felt absolutely fantasic and did too much then the following day paid for it a 100 times over.
I am more than willing to discuss this operation with anyone and will give them a very realistic version of what to expect.
Thank you so much for your response
I'll be in touch again soon
Julie x
about your blood levels, it is more important to bring your levels where they belong and not worry about matching. if you are too anemic they won't transplant you because of danger of bleeding during surgery. it sounds like a catch 22 situation but consider the greater danger. if you need a transfusion, get one.
I needed two units of blood after my nephrectomy and trust me, I felt so much better after. your body will have to fight really hard if your levels are not high enough. you will be at risk for all kinds of infections.
you will be in my prayers.
Thanks so much for updating us. You have been in my thoughts a lot lately.
As to the anxiety and panic--I had the same after I had the stem cell transplant (I think it was brought on by the chemo combined with the anti-rejection meds). I was prescribed xanax, which I took 3 times a day for about a month to 6 weeks. I gradually reduced my dose and I haven't taken (or needed) a single tablet since February. It really was helpful for me to have another tool along with the techniques the social worker gave me (visualization, breathing exercises etc).
As to Norma's question...one thing I have learned from following Julie, Pam and others who have also had a bilateral neprectomy before transplant is that everyone experiences this surgery differently. I feel a bit guilty that I encouraged people to have the surgery because I did quite well afterward. The 10 days in the hosoital were no picnic, but my pain was well controled. Afterward it took me a while to get used to dialysis but in terms of the recivery I was up and about, walking a couple miles a day (albeit slowly) and I never had any pain except for thje gas pain in my stomach when my bowles started moving again! One thing I do believe is that having a live donor lined up before my nephrectomy was scheduled did help me enormously because I knew that the side effects of living with no kindyes (low hemoglobin like Julie mentioned) were temporary. I realize that not everyone has the oppotunity to have a live donor, and some do not want to pursue that option, but if you can get listed for transplant for the deceased donor list first and spend some time on the list before nephrectomy, that might also be preferable to living long term on dialysis without kidneys.
Julie, you are a strong person and you have offered so much information that will be helpful to others who will travel this path. I hope that you continue to heal, that your dialysis sessions become easier, and that your family continues to grow in their support for your. Lots of gentle hugs (as Ruth would say) and best wishes for you and your family.
it is nice to hear from you. my advice is to not get transfusion. bec of luekumia, my dad had low hb of 6, but the hemotologist refused to give transfusion saying it is not necessary unless you have diffulty breathing, not able to walk or move around. So, if your blood loss can be contained you can avoid transfusion. Also, you need to take iron injections in addition to EPO
Bala
Lindsey -I know you seemed to have a better experience wtih the double nephrectomy than I did but I think this may be a lot to do with state of mind. I was strong going into operation but during hallucinatory period I put my body under so much stress that I went downhill from there and am still struggling to recover. As you had a transplant lined up you probably had lots of positive feelings which probably balanced things out for you. I too would recommend this operation to others when the time is right but would also recommend that they become established on dialysis first if possible. Also I am so pleased that you came through the panic attack period as this gives me hope for mine. The pysychologist has advised me that she has some techniques which will help and she is only going to start these on 3/1/12. I will also mention to my GP as there may be some medication that I could take alongside these techniques as you have done.
Spiderwoman - I have had 4 transfusions already. 2 during surgery and 2 post surgery. I do not know how or what effect these will have on future transplant as I have not been given any statistics, but all I know is that dialysis doctors are trying their best to keep me away from another tranfusion if possible. I want to ask mopre questions and usually I would but I am so scared of the responses I can't help but bury my head in the sand.
I can;t tell you all how good it is to just read your posts and be able to exchange messages with you- it makes such a big difference in the way I am feeling. Thanks you Julie x