Help/Comments etc

[Fredsap]

Firstly, I'd like to say, this website and the community are amazing. There is a feeling of "your not in it on your own".

I'd like to introduce myself and my father who is the APD patient. He can't type or use a computer so I'm doing it for him.
His Background.
61 year, 25+ year diabetic, 84KG (with 2l of fluid in him) Asian Hindu.
Has had high blood pressure, and diabetes for 20+ yrs. Controlled by tabs (antenolo/lisnopril,statin). Put onto injection for diabetes about 6 years ago. Is otherwise healthy, but overweight at 5'6".
He was diagnosed with End Stage Kidney Failure about 3 years ago and through his GP was sent to various clinics; diabetes, foot, eye and then through a back clinic was advised to go to the kidney clinic, where they kept him coming in, but didn't clearly tell him that he had kidney failure. then one day got told it, he obviously called me and we went through the presentation on APD/CAPD etc. So now he is under the watchful eyes of the Renal team, who are just amazing; the nurses and staff are just amazing. so much care and so much time, but kind of limited in what they can do at the end of the day.
He has mastered doing APD, on 2 x 5l 1.36% bags, then a 2l and another 2l of extraneal. His quality of sleep goes up and down, some nights I hear the constant beeping from his machine and in the mornings, I see him and he looks so tired. Then some days its really good. He keeps himself really busy by gardening etc.
Anyway, thats the background. Now for the help we need. Basically, he lives with me so his dialysis is a part of my life; making sure he is ok, is doing the right things etc etc.
He went away on a holiday to india for about 3 weeks. Whilst there is got infected with Peritontis, which was extremely painful. He got treated, but when he came back he had severe low blood pressure/dizzy/collapsing symptoms. The renal clinic took samples, and found he still had peritontis, which they treated. This has gone; the pain he was in was just unbelievable.
Anyway, since he has been back he has had every so often feels of being very very tired, sweating, cold flushes and problems overnight. We've tracked this down to de-hydration but think it is to do with the bag changes the hospital have got him on. Since he has been back they have started him on the 2x5l,2x2l,1x2l extraneal and I think its sucking all the fluid out of him and he feels as though he is going to collapse. His BP drops to 90/78 or 78/80 with pulse figures of 119/124.
But it goes from week to week without him doing anything. since he orgiinally reportedhim, the renal clinic have stopped him taking ALL blood pressure tabs; his BP on a good day is 140/90 or 147/92 'ish. For a man who took bp tabs for almost 30 yrs, he is now taking none.
In addition, he every now and then gets so much pain, he cry's (It is extremely difficult/painful to see my father cry and not to be able to do anything). He gets sharp jabbing pains in his right kidney side; similar to when he had his infections, but the pain is extruciating. He feels very very cold; he is in thermals, wears cloves and a hat in bed and the pain comes and goes. It happened a week ago for about an hour or two and then just today. He reported it durign the week to the clinic who tested the blood and fluid sample and reported all was ok. He has had an ultrasound and nothing showed up.
My problem is that I had a kidney tumour back in 2006 and know the pain that I went thro. It seems/feels it is exactly that pain, sharp jabs of a knife in your side, feeling nothing but pain and only wanting to die. My docs mis diagnosed mine as urinal infection twice and then stomach cramps, before I peed red bloody, then went to the local A&E who didn't do anything other than give me pain killers and tell me it wasn't a stone and would clear up. I had the pain for almost three weeks.
My long winded story does have some questions for you experienced people.
Are the types of things my father is experiencing what you've all been through? I mean the constant feeling of cold fingers/head when doing apd?, the occasional severe pains?, the tiredness, the constant beeping.
I know my dad and he won't say anything, but I think he is thinking Is this worth it?

He is hopefully going to go through tests in order to put him on a TX list, but as he is diabetic, I am told that he has to have a TX of the pancreaous as well as the kidney and being asian also makes it more difficult.

Can anyone also share some info on diabetic patients having transplants?
Any pointers, comments would be really useful.

A worried Son.

[JMan]

All I can say is that you need a second or third opinion. Pain isn't usually there for no reason.

My parents were told by a top London renal surgeon that my pain as a child was the result of 'swallowing air while I was asleep due to stress!!'

Turns out that I had a serious problem.

[Fredsap]

Thanks JMAN. I'd agree and thats exactly what I was thinking, but I'm kind of scared/not sure on where I go/how I go about finding a specialist. He currently sees the "top" doctors at his Renal Clinic every 3 months, and even then sometimes, only speaks to a trainee consultant/doc. I've been to the clinics and it is normaly a pep talk and check of bloods (he has to have bloods done a week before).
Anyway, my worry is that he is obviously guided at the upper levels of the chain by senior docs, but do I need to tell them/ask them. In fact, I guess that the top guys are probably offering private consultation and I don't think I want them giving the advice.
Any ideas on where you go to find private specialists in the essex area.

Dave

[lashy]

hope you get things sorted soon
take care
emma x

[MandyV]

A couple of pointers - the 'beeping' of the machine is a sign that there is a problem - there will also be an error message on the display and it is most likely either insufficient drain volume or blocked line. The insufficient drain volume is caused by either a positional problem (if I lie on my side I drain better than on my back) or the fact that there is insufficient fluid there to drain - caused either by your father not drinking enough or the program being set to take off too much fluid. I know that I need to drink at least 1l / day or I will get a disturbed night.

Also your father might find the 'tidal' program easier - this one takes only a % of the fluid plus the target UF out each time so is easier for 'slow drainers' like myself - my fill is 2l and the tidal vol 85% so it will drain out 1.7l plus my target UF (which I change every now and then depending on what I have been up to) but is usually around 50 - 75 ml / cycle - I do 8 cycles / night. So he should speak to the nurses and check whether his program is optimised.

As for the blocked line - in my case it usually means I have lain on it ! So all it requires is for me to move.

The other thing is to write down all your questions and ask to see the consultant specifically to discuss your concerns. There is little point in trying to see a consultant privately straight off as they would not have access to your fathers notes and therefore would likely have to repeat all the tests that he has had done already. If the consultant cannot give you satisfactory answers then ask for a second opinion and so on. The thing is to be persistant (but polite) and ensure that your father always has someone with him when he meets them so as to ensure that the questions you need answers to are addressed. You might also try the PALS (patient advice group) at the hospital, or even the renal councellor who might be able to help you get the answers you need.

Good Luck !

[bigbuzzard]

I also do APD/CAPD. I've never had peritonitis, so can't speak about that. Your dad's experiences sound really horrible - apart from the uncomfortable feeling of draining sometimes, I've never had any major problems. The machine beeping can indeed be disruptive of sleep - all Mandy's advice sounds very good.

The time I've had the most problems with alarms, and so on, was when the weather was much colder - the tubes get a bit stiffer then I think, and the machine doesn't cope so well.

You could try finding out if your hospital has any kind of 'peer support' (like a patient 'buddy') scheme. I've signed up to one of those at Guys hospital in London. It seems to be designed for situations just like this - where it might help a patient to be able to speak directly to another patient. I've certainly found that some kind of communication with other people in a similar boat to be immensely helpful. For me that's been via this board.

I'm going into hospital for a transplant next week - while I'm there, I'll ask about the possibility of a TX in the situation you describe - though you may have found all the answers you need on here before then.

Best wishes

Andy

[triggers better half]

i too am a diabetic and was fortunate to have a tx last year. i dont think that because your dasd is diabetis means he has to have a pancreas as well. is he a type two diabetic or type 1? i was told at the time they dont do pancreas tx in type 2 as there is no point due to the kidney failure beng caused bythe diabetes and they do pancreas tx in type 1.
i must say that i was on apd for 18 months and never got peritonitis until a week after my transplant and i hadnt even been dialysing.
i also live in Essex so feel free to PM me if you want and i can see if i can help. my dad is also on haemodialysis at the moment and he is also in Essex.
triggers better half (aka as alex)