Got the Date!!!!

Today i got the date for my planned transplant - January 4th 2010.

So lots of planning to do now, my mums got to be down for tests early in December and ive got to get through the HTA tests (these are test to prove me and mum are actually related).

Iron

I started having iron as my blood count is very low at the moment and slightly anaemic. Its a horrible black liquid that goes straight into the dialysis machine. I makes my mouth feel like I'm sucking a rusty old iron bar, luckily it last only for 20 seconds or less. yuk

Difficulties

Ive just adjusted my dry weight as I'm finding that I'm really bloated even after dialysis, I'm also getting headaches every day, although my new problem seems to be breathlessness. Every night I'm gasping for air, seems to be a constant thing. Ive seen the nephrologist and hes shrugged it off as to much water. I'm not sure that's right - seeing my surgeon next week so wee what he says.

New Access check

today ive been back to the QE to the access clinic for a decision on where to go with a new fistula. This is a difficult decision as if i get a transplant as planned and it works i wont need a fistula for a while (with luck). But if it fails i don't have a fistula to fall back on.

Its going to be a difficult decision but i may just go for it just in case, im on lines at the moment and they are OK, but short term and easily failed.

The fresenius Centre

As per the last post my dialysis centre is not on site at the hospital, but on a new industrial estate. Its nothing like the hospital centres, its very state of the art with positive pressure air (to keep out germs) antibacterial everything and brand new machines.

Its also quite good for the individual with flat screen TVs and Sky TV (cable), so the 4 hours seem to fly by, shame daytime TV is so bad!

Dialysis

Since i left hospital after 7 days i have been given the opportunity to dialyse at a seperate and independsant dialysis cetre in Worcester, which is 15 mins from my home.

I was a little nervous about dialysis but have found it to be a faily relaxing and simple process.

My fistula failed in surgery so im using central lines into my chest, which are a pain to keep clean but working well so far.

After 3 weeks of dialysis im finding it difficult to get to a dry weight and to keep my fluids low, ive got swollen ankles and hands but we seem to be getting there slowly.

Hospital recovery

3 days after surgery i was put on the general ward, with my epidural taken away after 4 days. the next few days i struggled with the painkillers as they made me sick and being sick and having a 18" cut across your stomach is very very painful indeed.

the pain eased a little and i swapped between paracetamol and morphine for the next 2 days.

Over the 7 days post surgery, i was as sore as you can expect but wasn't getting sleep due to the constant hum drum of the ward and the lights. So after 7 days i asked to be discharged. As my levels were OK they agreed i could go home. I had had 2 lots of dialysis, one of which they turned of my epidural by accident, which left me in agony for 4 hours.

I have to say that the dialysis i had 5 day post operativly was very painful, and as i was left alone and had no staff contact was distressing. I hope that wont happen again.

Fistula Packed Up!

Unfortunately during surgery my blood pressure dropped so far that the fistula clogged up, i didnt know this until my wife felt my arm and didnt feel the thrill.

So they used my central line until a permanent line was put into my chest.

I went in for my kidney removal on the 2nd October, after a delay i went down and returned 3 hours later minus 10.5 kilograms (22lbs) of Kidneys. Some of the biggest the surgeon had seen!

I came back into the Acute Renal Care as my blood pressure was low and i was in need of a blood transfusion.

Still Here!

Its been a while since the operation but ill explain whats happened in chunks!

Big Op time!

Well its time for the big op - I'm in for my billateral nephrectomy tomorrow. I'm due for the op n Friday this week so i wont be posting for a few days. When I'm out i guess ill try and keep you up to date with how i feel.

Date Confirmed

The date for the kidney removal is now confirmed as 2nd October at the Queen Elizabeth hospital Birmingham (UK).

So i guess that's when this blog should start really, when I'm back in the swing of things ill re log on and hopefully with two less big lumps.

Date for Nephrectomy

I had an appointment with my surgeon yesterday and my fistula is ready for action or should be fine in a week or so. Thus they have decided to get some planned dates for the next step and my biggest operation.

We are planning to complete my bilateral nephrectomy at the end of September / beginning of October, depending on holidays and emergencies.

All getting very close now!

No posts for a while as ive been a bit off form. Last Wednesday started to get a severe pain in my Left hand side, ended up in the renal assessment center for bloods and tests. Ended up there for most of the evening until they let me go. Looks like I had a Cyst burst.

On Friday this was confirmed as I had blood in my urine, which got worse over the weekend and has only just stopped today.

Ive got at appointment at the QE tomorrow with the consultant to see if I can use my fistula yet, if so its op time. If not just a waiting game.

Fistula Update

Saw a nurse at the renal outpatients today and apparently the fistula seems to be working well, the vein is still a little "delicate" but is working well. So that's good news.

Oddly it seems to stop buzzing at night but is still making a pumping sound! strange these fistulas!

Injury!

well did a good one this weekend, managed to injure myself somehow, and strained my side, feels like a muscle pull, no blood showing so should be OK.

Getting a little concerned about my levels now as i seem to get tired very quickly, Ive been into the hospital today for some blood work as i need to know if i am falling quicker than I thought. Generally very tired in the mornings and struggling to do physical things i have before.

Feeling a little unwell

I guess things do sometimes get on top of me, yesterday I spent sometime in the garden after work and paid for it. Last night i felt quite ill and very lightheaded. Im not eating much at the moment as I simply don't have any room (kidneys taking up all the room now).

I'm thinking that the lack of food and overexertion just took it out of me. Felt better this morning but still quite tired. Many people have told me that when you have PKD you don't often know how ill you actually are, and Ive been trying to deny that im ill for the last 2 years.

Ive got an appointment later in the month to check the fistula before dialysis, im hoping my levels havent dropped anymore!

fistula is humming away, no idea if its right but presume should be OK. Got an appointment with the surgeon on the 27th of this month so expecting to get a date for my nephrectomy.

I did get some results last week and noticed my creatinine level is 474 which is actually lower than last time when t was 524. Its been up and down a lot recently but hovering just above dialysis level.

Had my stitches out now and I think I can feel the vein getting larger in my arm.

Mums Tests

My mum has also now found out from the Nephrologist that she is a good donor and that they are now happy after all the tests that she is fine as a donor. Fit and well. That's good news for us both and I'm especially pleased that my mum has a good fitness level, whatever happens with me.

Psychotherapist

Now had my assessment for suitability with the Psychotherapist. Basically to make sure I understand what I'm doing and that I am actually my mothers son!. Passed and not quite psychotic - yet!

schedule

My mum has now cleared stage 2 of the live donor assessment so just a meeting with the surgeon and then that's all done.

I had to check today as my fistula seems to disappear when i straighten my arm. Nurse at the QE says its "positional", and the buzz is till good at the moment.

27th July - fistula

My fistula is still buzzing away but seems to go quiet sometimes which worries me and then my heart beat increases and then it comes back so its a strange one. My arm is also a little numb below the cut but i guess thats the nerves close to the skin that need to repair themselves.

History

My history goes as follows: Just as I thought I hadn’t really said how I got here!

1985 diagnosed with PKD at 16 after I had a routine urine test that showed up protein in my urine.

Had a normal level of function for 10 years with no illness or outward signs of a problem

In 1995 I was diagnosed with slightly high blood pressure and given drugs to lower, this went on for a few years and after annual trips to the hospital and regular GP care I eventually ended up on 3 sets of pill for blood pressure (atenolol, indipamide and amplodopine).

In 2005 my creatinine level was 147 but rising and by 2007 it had risen to 300, so I knew something was going wrong, which was expected anyway.

In June 2006 I started to notice that my stomach was getting larger but my weight dropping, so after a visit to the docs (and a misdiagnosis of Hodgkin’s) it was confirmed my Kidneys were growing very large indeed. They are now huge and are pushing on my diaphragm and hence im loosing some lung capacity and finding it very difficult to eat large amounts, so the weight is going as well.

Now in the middle of 2009 my Kidneys are the sixe of rugby balls and at 11% function. I’m still living at totally normal life and but now know that I need a double nephrectomy before I can have a transplant as there is simple no room for my donor kidney.

At the beginning of the year my wife, brother in law and my Mum all volunteered (along with many of my friends) to give me a kidney, after first stage tests all three were suitable. It was decided that my mum wanted to progress, which was a difficult decision.

It’s amazing that so many people were actually prepared to give me a part of them in order to make me better, its something I will never forget. And to those people I will always be indebted. To my wife, brother in law and mum I will never be able to thank them enough for what they wanted to do, not properly anyway.

My wife (and family) has always been by my side through this and its getting more and more difficult for her in particular, if your reading this then I would image g you are affected by PKD or know someone who is, having someone to hold your hand when your told new things and visiting hospital has been so important for me. Even if I don’t hold her hand enough, is what she would say!!

Now I have a buzzing arm, ive got huge useless kidneys and have a donor so I thought it would be a good idea to put down in writing my experiences for all to read.

Since I discovered I had this disease I have been trying to gather as much information as possible and looked at more books, medical journals and websites than you can imagine so im fairly well educated on the technical side, now it’s the practical test

dietician

Oh and went to the Dietitian yesterday as well, didn't tell me anything i didn't know really, limit salt, limit potassium, limit phosphates, but did say that at this stage with a creatinine of 484 i should just eat well and make sure i have enough carbs to make sure I'm strong enough for surgery.

Fistula

I had my fistula put in on Monday 20Th at the Queen Elizabeth hospital. Its been put on my upper arm as my vein's were deep in my forearm. The cut is along the bend in my arm so its quite painful but i do have a good buzz sensation and i can feel something across my bicep also. Looks like it went OK. Dressings changed every 2 days. Stitches out at 14 days.

Im going for my first stage of the opsim due to have on Monday.

Im being treated at the Queen Elizabeth Hospital in Birmingham.

The Fistula is Monday 20th July, so ill update after the first cut!!

tests

Today i have had confirmation of my dates for a fistula, this is required so i can have dialysis

Its started

Well as a novice to this so Ive decided to share my experience with the world and hopefully pass my experience on to others who maybe living with Polycystic Kidney disease.

I'm about to start treatment and have fallen in to stage 5 failure so here goes.