polycystic kidney disease sufferer
I am a 42 year old married woman with 2 daughters aged 17 and 19. I was diagnosed with ADPKD in 1994 but was never told how serious this could be. As a result I wasn't overly concerned about missing taking my blood pressure meds and only really became aware of the seriousness when I tried to move house about 7 years ago and found that Life Insurance companies would not consider me. I then started to research and found that the disease was more threatening that I had realised. As my grandad who did from a stroke at age of 56 we have now idenified that he was the family member who was passing this PKD gene on. Since my diagnosis my mother , her sister, my sister and my 2 daughters have all be confirmed as positive. Although my auntie is already on dialysis I seem to have a more aggressive form of the diisease as I am in ESRD at 11% 20 years earlier and my kidneys and liver are huge. I have had a fistula made in April to start me on dialysis asap before having major operation to remove both kidneys as there is no space to have a transplant and cannot therefore join this list until speace available. They have also suggested that I may need liver section as liver is crushing my diaphragm and causing me breathing problems. My daughters are both being treated for high blood pressure and yougest daughter is having panic attacks which doctors think are related to her seeing me in advance state. She is also suffering with severe stomach pains and goes to renal hospital tomorrow to find out if any blockage or anything- she has had IVP.
Further to this unfortunately renal consultant now advises that he does not think my fistula is going to be accessible for dialysis nurses so need further scan and possibly need this redoing??? Also whilst enjoying my last pre-dialysis holiday in Egypt 3/7/11 to 17/7/11 I began with severe pain in my left side and passing deep red blood in urine on about 10/7/11. This was extremely worrying in Egypt as I have no specific insurance for my condition and although they wanted to admit me to hospital I could not accept. Hotel doctor was fantastic and provided me with all possible antibiotics to cover everything and although tramadol is class A drug in Egypt his associate at hospital was able to get hold of 3 injections. I had to save one till last day to get home without arousing suspiscion from flight staff who may have marked me unfit to fly as I was struggling walking, and unfortunately due to the way the blood was splurting out when I went to the toilet in the airport this just splattered all over my pants (sorry to be so graphic but thank goodness they were patterned.) I was admitted to Hospital in England on 17/7/11 and spent about 3 weeks there undergoing various tests (the constant bleeding lasted for 6 weeks and my hemaglobin level dropped to 7.1 so as you can imagine I was extremely tired. There was a lot of talk about a blood transfusion but this never happened. I had vaginal scan kidney scan womb biopsy cervical smear, internal examination, bladder scan,CT scan and MRI scan. Every day in hospital they could not give me any answers other than it's part of my PKD condition, until the very last day when they told me I could go home although I was still bleeding and still had fever and low blood pressure (even though I suffer from hypertension). They told me that due to size of kidneys and hundreds of cysts it is difficult to make a diagnosis without referral to Christies Hospital (cancer hospital). I was too shocked to ask anything and was just glad to get home. I just literally slept around the clock for 3 weeks at home due to exhaustion. The hospital phoned me to make appointment to see urpologist on 1st Sepytember as discussion had taken place with Christies and they needed to remove both my kidneys- Obviously I was surpised as I was having them removed anyway- they knew nothinkg about my plans with renal consultants. I am very confused and scared and worry about the worst possible outcome or not being able to have a transplant due to further increased risk of cancer. I had usual bi monthly check up with renal consultant last week and although he knew investigations had been underway did not know final outcome. He reviewed the notes on the computer for urology appointment on 1st September and did advise that it seemed they suspected cancer but could not confirm for definite. I am bottling everything up at the moment, mostly to protect my daughters from further worry, and the only time I am able to think clearly is when I am up alone until 4 a.m when everyone else is asleep. I take 2 x 7.5 tablets of zopiclone sleeping meds aswell as further sedative medications for itching, blood pressure and GERD aswell as Citillapram for depression and I still can't sleep. I know I should BLOCK out of my mind but it's very difficult not to think the worst. Feeling sick and depressed,and as though my head is going to explode - can anyone share their thoughts with me please???? JulieX
Further to this unfortunately renal consultant now advises that he does not think my fistula is going to be accessible for dialysis nurses so need further scan and possibly need this redoing??? Also whilst enjoying my last pre-dialysis holiday in Egypt 3/7/11 to 17/7/11 I began with severe pain in my left side and passing deep red blood in urine on about 10/7/11. This was extremely worrying in Egypt as I have no specific insurance for my condition and although they wanted to admit me to hospital I could not accept. Hotel doctor was fantastic and provided me with all possible antibiotics to cover everything and although tramadol is class A drug in Egypt his associate at hospital was able to get hold of 3 injections. I had to save one till last day to get home without arousing suspiscion from flight staff who may have marked me unfit to fly as I was struggling walking, and unfortunately due to the way the blood was splurting out when I went to the toilet in the airport this just splattered all over my pants (sorry to be so graphic but thank goodness they were patterned.) I was admitted to Hospital in England on 17/7/11 and spent about 3 weeks there undergoing various tests (the constant bleeding lasted for 6 weeks and my hemaglobin level dropped to 7.1 so as you can imagine I was extremely tired. There was a lot of talk about a blood transfusion but this never happened. I had vaginal scan kidney scan womb biopsy cervical smear, internal examination, bladder scan,CT scan and MRI scan. Every day in hospital they could not give me any answers other than it's part of my PKD condition, until the very last day when they told me I could go home although I was still bleeding and still had fever and low blood pressure (even though I suffer from hypertension). They told me that due to size of kidneys and hundreds of cysts it is difficult to make a diagnosis without referral to Christies Hospital (cancer hospital). I was too shocked to ask anything and was just glad to get home. I just literally slept around the clock for 3 weeks at home due to exhaustion. The hospital phoned me to make appointment to see urpologist on 1st Sepytember as discussion had taken place with Christies and they needed to remove both my kidneys- Obviously I was surpised as I was having them removed anyway- they knew nothinkg about my plans with renal consultants. I am very confused and scared and worry about the worst possible outcome or not being able to have a transplant due to further increased risk of cancer. I had usual bi monthly check up with renal consultant last week and although he knew investigations had been underway did not know final outcome. He reviewed the notes on the computer for urology appointment on 1st September and did advise that it seemed they suspected cancer but could not confirm for definite. I am bottling everything up at the moment, mostly to protect my daughters from further worry, and the only time I am able to think clearly is when I am up alone until 4 a.m when everyone else is asleep. I take 2 x 7.5 tablets of zopiclone sleeping meds aswell as further sedative medications for itching, blood pressure and GERD aswell as Citillapram for depression and I still can't sleep. I know I should BLOCK out of my mind but it's very difficult not to think the worst. Feeling sick and depressed,and as though my head is going to explode - can anyone share their thoughts with me please???? JulieX
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