laurie update

[brenda seal]

Hi everyone , Laurie had his appointment with the dialysis clinic today as he refused to go to emergency and an ambulance would have just taken him to our local hospital - where there is no renal department . They were not that concerned about the amount of fluid he is retaining , they say it is because he is not having dialysis and his renal function is poor . They did another flush today and put in another bag of antibiotics . The breathing difficulties are because he has fluid on his lungs and is also very anaemic - they say ! Did more bloods today and  will ring tomorrow with the next plan depending on blood results . There is talk of training him on another system which has less risk of infections occurring - currently using Baxters .

[MaryD]

It is good to hear from you.  I worried all weekend.

He sounds poorly - let's hope that tomorrows plans will help him.  Please let us know

[billybags]

Well Brenda it seems like they are trying to sort him out. The breathing is awful. My husband has fluid on his right lung, they say it is from his heart, it is not pumping properly. They have done 2 drains on this in the last 7 months.  His weight is going down and down, he only weights 67kilos now, he was once a good weight. We have to make light of this because if not I would cry, so I call him Darthvader, that's awful isn't it. My daughter calls him the heavy breather. Hope things improve quickly for you both.

[willowtreewren]

 

[brenda seal]

Thanks guys , Billybags, you are right in saying making light of things helps keep the tears at bay ! It is very distressing to see someone you love suffer so much as I am sure you know . Laurie's weight has also dropped - over 20 kg in recent months . I feel he should have started dialysis long before he did , his GFR was <9 - I don't know at what point anyone else started . We don't know anyone who has had to have dialysis so we are very ignorant .
  I have been showering him the last few days as he just is so unwell , but we manage to have a giggle about it . It sure brings a whole new meaning to sharing ! I am an expert now with hyperfix and surgical tape !

[boswife]

oh boy   this is all so familiar.  Just this morn we were 'sort' of chuclkling about my hubbys (once very strong mustly) skinny to the bone arms.  He was saying look how rock hard they are.  I love him dearly.  I asked him (because i cry all the time when i see more and more of him fading,,and no, i dont cry infront of him) if it freeked him out.  He kinda laughted and said, "Yea, it makes me think of my dad".  Oh this is all so hard. 

[billybags]

Brenda , Have they found out where the water born virus has come from yet? This sounds daft but we do not get the access wet at any time it is always dry. You do not know what is lurking in those showers or shower heads. We have large waterproof plasters and cover the access with  them when he showers. He also has strip washes that do not wet his access. What is this other system you are talking about? Hope to-day has been better for you.

[brenda seal]

It is only 7am here now , we will see what the day brings . No they don't know where the bug has come from , but are not happy about us using the bathroom as his " set up " . I set up in the bathroom because we have two cats that live indoors and it is the only place I can keep them out of . Our bathroom is modified for a disabled person and has somewhere to hang the bags and also I figured it was the easiest to keep as sterile as possible . The nurse who came out to check on the first day was more than happy with the set up , but now they are expressing concern . The other system is another company Fresnius or something like that = apparently there is less risk of infection with this  system but it is more expensive - hence why they didn't go with that in the first place . We keep the exit site covered with the primapore dressing  until he is finished and then change the dressing once he is dressed  . Is this enough protection ? The dressing does get wet during the shower .

[Joe]

Brenda, I pretty much don't have any covering on my exit site at all anymore. And my check this morning, my nurse said the site looked perfect. While it was healing, about the first 4 weeks or so, I did get the bandage wet when I was showering. But I took it off immediately after my shower and then did my exit site care. Have not had a problem with it yet (knock on wood). Hope you get through this quickly.

[billybags]

Brenda,  when my husband was on CAPD we set up in the bathroom, he is now on the cycler but has to do a manual at tea time in the bathroom
 as long as every thing is spotless it should be OK. We put a  board over the bath that he sterilizes every time and away we go. Personally I would try and keep the site area dry at all times, water is a funny thing. Hope things are going your way.

[MaryD]

Brenda - I have two indoor cats too.  Their kitty tray is actually in the bath which is never used.  I regard all the surfaces in the bathroom with great suspicion.  I do replace my dressing in the bathroom, but I have a "sterile" area in the cupboard where I keep everything.  There were three different nurses who came towards the end of my training and only one of them was worried about the cats.  The other two appeared to be quite relaxed about my arrangements

I do my prep and connection in a special area in the kitchen.  Everything is close at hand and the whole clean and connect procedure only takes a few minutes.  Then I go off and do my piano practice, or check my email while I drain in and drain out.  I do a lot of knitting and embroidery, and tried to do that while draining, but I was worried about the feral little bits of fluff I noticed around the connection area from time to time.  Now the only knitting I do is the typing up of my patterns while I drain.

You mention that Laurie leaves his dressing on while he showers.  I was taught to remove the dressing to shower, and to use the Deb green soap to wash around the catheter exit site.  Then the exit site is patted dry with a clean hand towel or washer and the primapore dressing applied.  Also I was given an anti-strep ointment which was to be applied to the site for five days in a row once a month.

Also I have the phone number for the renal clinic (9 - 5, Mondays to Fridays), the number for the renal unit in the local hospital for after hours and weekend problems, and another number for real humdinger emergencies.  I have used the renal unit number twice and they have been most helpful and calming.  See if you can get a similar number for weekend problems.  I always think if you have the number there is an excellent chance you wont ever need it.

My fingers are crossed for you and Laurie.