Hi Update from jbell

[jbell]

HI just wanted to let everyone know how things are going with eyrs and kidneys. Thank you all for your support. Ulcers have all healed on good eye but sight still much more diminished than it was . Hospital saying its not as a result of ulcers but fluid is gathering at back of eye. They were set to treat this with injections into eye and then changed minds as odds of me completely losing sight were too high. So now its a case of waiting to see if it gets worse and then treating problem. Not really satisfactory or reassuring outcome !

Also had bloods done for renal clinic on monday and rgfr gone down to 16%, which for me is cut off time to start to try to get on tx list. I am not sure how far away that makes dialysis, but I am quite nervous about visit to neph on mon. At least my husband is still home and can go in with me, I am grateful for that. Xtina was very good at keeping me up to date with all the kind posts when I was incapacitated recently. January has flown by, thats one thing for going to eye clinic 3 times a week ! I am just relieved its over for awhile Take care everyone I will post after seeing neph jan * am not cool just wearing dark glasses a lot !

[AmandaClare]

Hope your neph appointment went well, Jan. Very sorry to hear about the eye problems and also that you've hit that milestone on the gfr. Do your results jump around or has it been a steady downward curve?

[MandyV]

Sorry to hear you are having such a tough time with your eyes - are you at a tertiary referral centre already or can you ask them to send you to one? Good luck with your neph!

[jbell]

HI well its happened I am being referred to the tx team to be put on the tx list. Neph today said my results for last 3 months were dire and cannot put it off any longer. So I am now waiting for what seems like a ton of apts, does everyone have to have a physciatric assesment ?. I have to meet the tx co ordinater in Edinburgh and then the team. Apparantly the aneathatist has to do more tests and they may want an angiogram as well. Its all a bit overwhelming and unfortunately husband who did come in with me dropped me from the hospital and shot off abroard to do a 3 day course for his work, so we really havent had chance to draw breath and discuss this. Evan though I have been waiting for this for over 4 years now I feel so shocked, I will have to stop pretending now that this would never happen. It will sink in no doubt.

Amanda in answer to your question yes my egfr has wavered about the place, but never by too much. It has always gone up and down by about 2-4% but has been a steady decline for past year.

Mandy what is a tertiary referral centre ?, if thats to do with eyes so far as I go I just phone the eye clinic and they let me go up if I need to.

Thank you for your replies and take care jan

[MandyV]

Hi Jan
A tertiary referral centre is one with a particularly high degree of expertise/experience in a specific condition - so (and this is my understanding), there are many centres in the UK who do kidney diseases and transplants but within those there will be ones which other hospitals and units refer more complicated cases to. Hammersmith Hospital is a tertiary referral centre (though in how many disciplines I don't know). I think that they are mainly ones with post-grad medical schools attached but may be wrong on that count.
So for your eyes there will be many hospitals who have eye clinics but certain ones will have more staff with more specialised experience (and that may mean a particular hospital like Moorfields or the London Eye - probably there are a number that I don't know about).
Especially if you have a number of complications related to an underlying condition a tertiary referral centre may see a number of cases a year whereas a more 'vanilla' unit may only see one or maybe only one every few years.
I am sure there are others who could explain it better but hopefully that gives a flavour of it.

[SKM23435]

Jan,

I shared your feeling of everything being a bit overwhelming when the magic point is reached when you are told " let's start the work up for transplant". I don't have your other medical problems and this was the point I suddenly started to feel like a patient. I could no longer ignore the inevitable. I have to say that all the staff I met were lovely. The specialist nurses helpful and the technicians and doctors in other departments interested. I think I've almost finished the tests now, just got to see the transplant surgeon. I'm not sure but I think they are saving that until my eGFR falls a bit further. It's 14 at present. Interestingly I didn't have to see a psychiatrist, I don't know if that's standard (or an oversight ??).

Good Luck with the tests.
Hope the eyes continue to improve.

Sue

[cph1234]

Sue and JBell and all,

I too am at a similar stage you you. I have PKD, I found out I had it in 1998 and it has been a very slow decline but now its getting closer.
My gfr is now 15 and I have indicated i would go for PD. I may be getting a live donor transplant from my brother, thats still going through,
but I believe I will soon be put on the transplant list as well. I'm 52 by the way.

I don't really have any symptoms and am reasonably fit, I still enjoy walks and cycling. I do feel a bit lethargic but thats about it.

But like you, the thing that was always something on the horizon and seemingly a long way off, is now getting near. I am a bit worried
and a bit sad. Its comforting to hear from other people going through the same thing. Its something we have to face. Its life.
I do believe in God and I ask him for help to cope.

Regards,
Clive

[jbell]

Hi thank you for your replies. I just wanted to add that now I have had time to reflect I actually feel better. I have come out of that limbo stage waiting for things to happen. Now I can actually concentrate on things and try to prepare for whatever lies ahead. I had nearly all of the work up tests done over a year ago and so once have sorted out whether I can take the anaesthetic (its a 10 hour op for double tx), and the surgeon and physciatrist (hope I dont say the wrong things) say yes then hopefully that will be it. I am still very nervous and do not even want to think about the operation but at least things are moving along now.

Mandy thank you for your answer, I will ask at clinic next time I go, though I do attend a university hospital (Ninewells in Dundee) and my tx will take place in Edinburgh which is definately a university hospital.

Clive and Sue its good to hear from people at a similar stage to myself. I am going on tx list before dialysis due to needing a double tx. It makes no difference to amount of time I will wait. My neph is hoping I wont need to start dialysis until egfr down to 10%, but obviously that can change. Its a real posative that you are fit Clive, I am afraid due to other health problems at 48 I am not fit. I have decided I have to try and start a little exercise, though it is difficult with eye problems and chronic bp problems which make me faint a lot if I stand. I am thinking if I can get someone to guide me in the pool swimming might be a good idea. That way I cant faint, just bang into other people a lot !.On the symptom front I seem to have many, gout, cramps, feeling cold, tired but unable to sleep etc, but some of that could be diabetes related and not kidney, they cross over. Keep in touch everyone jan

[jbell]

Hi everyone just wanted to post a quick update. I am a bit shocked my egfr has gone down to 15 from 16 less than 2 weeks ago. I have also beceived my first apt, on the 25th feb I am to meet my tx co-ordinater. I am being overly uptight and cannot believe I have actually done this. But I have typed up all of the questions I want to ask in extremely large print so I can actually read it out on the day, I have evan left space for the answers !!. My husband cannot go with me (he goes away back to work today, he has been here for 5 weeks because of eye problems, so I am a little bit nervous about him going. Anyway I thought my list of questions and answers might help him as well. Take care everyone jan

[lizbee]

Just wanted to say good luck with your appointment, I am sure on the day you will do fine, you seem to be prepared with all your questions written down that is a good thing I have often come away from a clinic appointment and found I had forgotten something I wanted to ask I may very well take a leaf out of you book and write my questions down now. I am now currently waiting for dialysis to start my kidney function is now 7% and has fallen from 10 %. My fistula is now almost 5 weeks old and my consultant would like to wait if possible till it is 3 months old. I have been very unwell lately bad urine infection and a lot of blood in my urine (looks like cranberry juice). I have a stent and it seems that they are thinking that might be the problem so currently waiting to hear from the urologist regarding that, it is due to be changed so I am hope that they find the reason for the blood.......other than that I am just waiting yet again for the next stage in the renal waiting game............take care and let us all know how it goes on the 25th..............


Liz

[jbell]

Hi Liz so sorry you are having such a bad time. I do hope they get to the bottom of the problem if it is your stent, peeing cranberry juice not so good I have been told I should be on dialysis when egfr is down to 10%, though I do seem to be hurtling towards that. Let me know how it goes with urolagist and when you start your dialysis. All the best jan

[lizbee]

Thanks Jan will keep you up to date with the urologist.......you and I seem to be having all manner of things going on with us, do you think if they took the two of us apart they might get one whole healthy person lol.......I look forward to hearing how you get on too on the 25th so good luck with that...............

Liz

[amanda in CA]

Good luck to you and Lizbee. Writing your questions down is a great idea. I often do it.

[jbell]

Ha but do you type them up as an email then print them out ?.I had one of those nights, I woke up at 2.45am and then lay being really quiet so as not to disturb husband, eventually at about 4am I was so fed up I sneaked out of the bedroom. Then bored I typed my questions up and at 5am I emailed then to my husband in the bedroom, purposely to wake him up. Job done he got up and kept me company, I am fed up of staying up all night though , and so is he now

[jbell]

Hi everyone, I am up early (for me) today, mostly because I have just about complete;y stopped sleeping for the past 2 weeks and its driving me mad. But also I am going to meet my transplant co-ordinater this morning. She said it will take a couple of hours , no idea what on earth we can talk about for so long. Anyway I am quite nervous but I have my list of questions ready to take with me. I will post how it goes later on, everyone have a nice day jan