Introducing Perryj

[perryj]

Hello from England,

I have found this website and would like to get advice and also help other people in the same situation as me.

This is my story so far...

'97 - Found blood in urine, went to doctor and got to sent to specialist. Found to have tumour in bladder, which was removed by laser and had x-rays of kidneys, liver and bladder. Occasionally tumours were removed; however low grade so no other treatment needed.

'02 - Blood was seen again in urine. Tumour removed plus x-rays on kidneys and liver.

Xmas '04 - Blood seen again in urine. Aching around lower back. X-rays and scans indicated cancer on birth kidneys. Told to give up my own business within one month.

June '05 -  Both kidneys removed and placed on haemodialysis after  operation and then CAPD after recuperation period.

'07 - Suffered stoke causing mild aphasia due to poor medical care. Suffered weakness of arm and eye movement, however have recovered now.

Xmas '07 - Placed on kidney transplant list due to being 3 years in remission.

Nov '09 - Told CAPD failing so placed on haemodialysis once again, had 3 fistulas; current one has needed repairs due poor needling.

July '10 - Routine check-up reveals tumour within bladder once again with is removed.

August '10 - Told by doctors I am off transplant list and would never go back on the list unless a cystectomy is performed and wait two years of no return of cancer; however I have been told that there is no guarantee of me being placed back on the transplant list.

If anybody has been through a similar situation I would love to hear from you, as any advice would help me make my decision as to what to do next.

Likewise, if anybody needs to know more of my experience I am more than happy to describe what I have been through.

Many thanks

Perryj

[MooseMom]

I can't even begin to imagine what you've been through, much less give you advice, but I did want to welcome you to IHD and let you know that people here are informed, involved and supportive.  It's very thoughtful of you to want to help others who have similar experiences to your own; thank you for what you have to offer.

[Rerun]

Hi John and welcome to IHD.  A transplant isn't a smooth road either, so it sounds like you just need to stay where you are at for awhile until you sort things out.  Try to get things in a routine and get comfortable.  I hate dialysis too and I'm not on the transplant list because of all the crap you have to go through to get there and stay there. 

Hang in there.  Come here to vent!   

Rerun, Moderator

[cloud393]

Boy you've been thru the ringer.  I thought I had been thru alot but you have me beat.  Sorry I can't help with your situation as I haven't been there.  I have Polycystic Kidney Disease and have been on D since Feb. 09.  I've done pd, in center hemo and now NxStage home hemo.  I can answer some questions in regards to the differences in them if you have any.  I am curious about your Bi-later nephrectomy.  I'm scheduled to have both of mine removed on Oct. 1 due to the huge size and discomfort caused by it so I'd be interested in hearing how you handled the surgery and recovery.  Look forward to hearing from you and answering any of your questions.  Welocome aboard.

[galvo]

G'day John and  . You've been through the wars, mate. I don't have any practical advice for you except that you've come to a great spot where you will receive such advice.

[perryj]

Hi all, thanks for your warm welcome.

Cloud393, I am more than happy to give further details of my feelings and experiences of having both of my kidneys removed. I must warn though, it isn't great reading, it is a huge procedure and is a lot for your body to take.

Right from the start I have been a 'unusual' case, as most people have at least some kidney function or the glands still in place; the doctors pretty much have never dealt with such a case and much of my treatment has been bespoke.

Preparing for my operation I was given an epidural, my CAPD line was fitted before another surgeon performed the Bi-later nephrectomy. I woke up after surgery in a high dependency ward where I was administered morphine and pethodone for four days. Doctors described the surgery as being one of the most painful procedures you could have, the operation lasted 11 hours. I had a cut across my lower abdomen that was around 8 inches and also two 12 inch incisions on both sides of the lower hips. For the first week after the operation I was on so many meds that were so strong, that I was delusional - I think they were that strong I could have made a fortune selling the meds on the street!

In the ward I was taken out of the bed far to soon and my left hand hip wound split open once again - but the nurse did say sorry!!!!

I was in hospital for approx 3 weeks, and I had a nurse take out the staples and dress the wounds for a following month. The pain clinic gave me decreasing strength morphine patches whilst at home for a further 3 months.

That was the first big step but the start of managing the cocktail of drugs I take to help me annoy my wife and children!

If I haven't scared you too much and you would like to know anything else, please ask.

Perryj

[cariad]

*boggle*

Flipping heck!

The aphasia does not seem to be affecting your ability to tell a compelling story. I'm just so sorry you've gone through all that.

I have many questions, but don't honestly know where to begin. I guess the word that keeps going through my head is why? Have they been able to tell you why you're having all this extra agony? What is it that is so unusual about your case, especially with the nephrectomy?

This has to be the most devastating introduction to dialysis I've ever read. I'm surprised they even tried PD with you. I had major surgery as a child (transplant) and once dialysis came around again, I was told no way at the mention of PD. Could you do self-cannulation or home hemo with your wife's help? Poor needling needs to stop before you run out of access sites.

I'm so glad you've joined us.  , Perryj! I look forward to getting to know you better.

[cloud393]

Oh my! The bi-lateral nephrectomy sounds horrendous. I hope mine isn't as complex as yours.  I knew it would be major surgery but, wow!  I just don't know what else to say right now.  Thank you for the info.  It certainly gives me something to think about.

[kellyt]

It's quite a road you are on.  So glad you found this site.   

[perryj]

Cariad,

Unfortunatley I had no option but to go on diaysis with no kidneys

They did try to save half of a kidney during surgery, but it was just too risky to leave it in.

I did prefer CAPD much more than hemo, whilst it was working. We are looking into home hemo but it takes takes a while for for it to get installed anf to learn the process in the UK.

When is your surgery Cloud??? I hope it all goes well for you and it is more straight forwards.

Perryj

[cloud393]

I will be admitted Sept. 30 and have surgery at 7:30 a.m. on Oct 1.  I'm starting to get nervous but am kinka excited at the same time.  They are so big I just have to feel better without them.  At least I hope I do.

[thegrammalady]

glad you found us. it's a great place to land.