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.

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billylyne5 10/12/2015

Well I have had three hospital admissions in the last month, first time they decided it was a kidney stone and possible infection so gave me 3 days of IV antibiotics 10 days after discharge my GP had me re admitted as I was unwell again with a temperature loin pain nausea and vomiting, 3 days in hospital and the consultant decided it was pyelonephritis and put me on antibiotics for 3 months, 5 days after discharge GP sent me back as I was vomiting, in pain and had a temperature, this time I had a CT scan and it was decided I had haemorrhaging cysts which had ruptured causing the pain, it also showed stones in both kidneys. So another 3 days in hospital and discharged with pain relief and told to come back if it gets bad again.
This has all meant I have had so far 6 weeks off work and am feeling worn out, I have lost weight due to the constant nausea and lack of appetite. Still in pain but not as bad thankfully.
I am a bit concerned about recognising what is happening in terms of infection or bleeds or stone problems.
I still have luckocytes and blood in my urine, the blood I understand but am a bit concerned the leukocytes are indication I have a uti.
Has anyone else had such a long episode of problems like this?

Chewitt 10/14/2015

Hi there,

So sorry you've been through so much pain. I really hope things improve for you now. Kidney infections can make you feel very ill indeed and the pain and nausea are horrible. Bleeds tend to be excruciating but from personal experience they do not cause elevated temperarure. I have had two episodes of severe, multiple ruptures/bleeds and the pain lasted for months. I try very hard to avoid all activities which may cause this to happen now.

Leukocytes in the urine can indicate an infection but can also result from damage or the presence of stones, so perhaps the stones explain yours. What's happening about the stones now? Are you still on antibiotics? Fingers crossed for an end to all of this for you.

Chewitt

billylyne5 10/14/2015

Doctor stopped the antibiotics last week, nothing is been done about the stones as they are not causing an obstruction.

I have good days then the pain will start again, so frustrating as I really need to get back to work, but I feel so wiped out by it all.

enigmaticloner 10/14/2015

Is there any idea what caused the kidney infection?

billylyne5 10/15/2015

Well when I went back in the doctor didn't think it had been an infection as my temperature didn't get over 38c and he said if it doesn't get over 38 then it can't have been an infection, personally I think this is rubbish, but he stopped the antibiotics anyway. So only had them for a few days, my concern is that I end up with an infection because it wasn't cleared properly.

enigmaticloner 10/15/2015

What did the doctor think it was then if not an infection?

billylyne5 10/16/2015

He just put it all down to the bleeds

enigmaticloner 10/18/2015

I see, is there anything specific that causes the bleeds then?

Chewitt 10/19/2015

My known severe bleeds were caused a) by falling down the stairs and b) from shovelling snow. Less extensive bleeds and/or ruptures can be caused by something as simple as bending over, twisting, turning over in bed. This is why contact sports are not a good idea. Anything that jolts is to be avoided for me, as is lifting anything at all. I can't shop for groceries for instance. If I carry a bag for even a short length of time, it will be followed by pain for days. The bigger the kidneys become, the more easily cysts will rupture as there is already pressure on them internally. You learn what you personally need to do to avoid ruptures and bleeds.

billylyne5 10/21/2015

Well had a few days respite and then they are hurting again It seems that as soon as I feel better and start to do more they start hurting more.

The pain is bearable but it makes me feel so sick, and my appetite is really effected so I am losing weight too. Still off work too and really don't feel up to going back yet, I have a pretty stressful manic job which doesn't help.

Back to GP tomorrow and I will have to see what she says about work

Chewitt 10/21/2015

It can take quite a while to heal after cyst bleeds/ruptures. For me the pain lasted for three months on the two worst occasions. It could be that you just need much more time to mend and are trying to do things too quickly. Are you still taking medication for the pain? These make the nausea much worse for me. I nibble on crackers through the day when I feel like that. It's something. You should also be given anti sickness medications to go with codeine and opiates. I know you want to be back to normal as soon as possible, but you need to rest otherwise your recovery will be even more prolonged.

Let us know what the GP says tomorrow.

Chewitt

tkski 10/21/2015

Hello all. I have been bleeding for 8 days now off and on. My nephrologist is almost certain that it is a broken cyst but is concerned that it hasn't stopped. I am going to see a urologist on Friday for a Cystoscopy, fun, fun :-( I would say that I am very fortunate than some of you, I have zero pain associated with this. My Dr. told me that apparently a blood vessel isn't clotting where the cyst has ruptured, thus causing the bleeding not to stop. I know that the disease effects us all differently but out of 3 generations, I'm the only one that has ever had bleeding. I'm curious, out of those who have had bleeding, what are the sizes of your kidneys? Mine are 22 cm and 19 cm.

Chewitt 10/22/2015

Don't know actual sizes; mine were just described as "massive". That was years ago, and they're much bigger now. I have also had bleeding into liver cysts, which caused the most agonizing pain ever. My abdomen is HUGE.

billylyne5 10/22/2015

My GP signed me off work until 4 th nov and told me to take things easy. Got see her again on the 3rd to see how things are going. I think taking it easy is the answer. I have plenty of oramorph and anti sickness drugs so that's good.
Everytime I eat my kidneys hurt and I feel sick I am finding things hard work as I also have an autoimmune condition which isn't helping

tryn2bpositive 10/24/2015

Went through something similar last year until my neph got involved. There is only one antibiotic that works on infections caused by cyst ruptures, according to my neph.
Did the trick. I don't know what it is though, sorry.

Chewitt 10/25/2015

See my post on 25th - August under Madsmonroe's discussion on antibiotic resistant cysts.

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