Gregory on dialysis 2.1

[natnnnat]

Gregory started dialysis today after clocking creatnine 855 (9.67); phosphate 3.6 or so; urea around 50.  This was a surge that happened over christmas/new years. He had two hours today at 150 and all went smoothly. Ironically he ended up busting for a wee and had to ask for a bottle. Lucy making a point. We go back tomorrow for three hours and Friday for four hours, as they want that urea down.  I'm mainly relieved (a) that he has started now, the numbers have been big (not that big, but big) for long enough, and (b) the fistula worked, it looked small to me.  Nurses were lovely.  Thank goodness for the kindness of strangers.  Mind you, two of them remembered him from 21 years ago.

[willowtreewren]

Oh, I know this will make him feel better, but still, I'm sorry it had to come to this.....

 

At least he CAN still wee! 

Thinking of you.

 

Aleta

[natnnnat]

Gregory says it was a VERY wierd feeling, but he seems pretty proud of her for it.   

[Mr Pink]

Gee, 21 years with a transplanted kidney. I hope I get that when I'm new and improved. Those doctors up in Sydvegas must be pretty sharp. For a dialysis patient, happiness is being able to pee! Good luck to both of you.

[MooseMom]

I'm sure this was a rather emotional day for both of you.  Well done, Lucy, for your years of service.  And she hasn't kicked the bucket just yet!   

[jeannea]

Sorry he needs dialysis. Sounds like it was a good run with the transplant. Can he get back on the list again? I recently got a second transplant after 3 years of dialysis. I hope the dialysis works for him.

[CebuShan]

     Glad he can still wee!   

[natnnnat]

Jeannea: I think he could get on the list but first they are considering a kidney donated by his sister. More tests tomorrow.
Mm: kind of emotional yet also strangely calm and painless. He is back "on" now, and we are both sitting around peacefully reading books. I even get to lie back in one of the comfy chairs as there are no other patients in here today (Thursday). I thought maybe I would get sad but instead the nurse let me watch as she put the cannulae in and explained everything she was doing... She does the home haemo training and it was probably second nature for her.

[Lexxtech18]

I haven't wee'd in about 2 years, so I'm sure it would be a strange sensation!!  Sorry, he's back on D. Hopefully things will be better this year!

[RichardMEL]

oh no I am so sorry to read he's had to start D again. ugh... Phos at 3.6? holy crap.. I used to freak out and worry when I hit 1.4. yikes.

I am glad it went smoothly though.

21 years with a kidney tx is amazing.

It still seems like a shock though and a reminder to all of us that the miracle of transplant is still a gift for each and every day. I can only dream I get close to 21 years out of my gift.. I'm only at 10% of that so far and still feel pretty good about that.

[natnnnat]

I'm delighted with your continued health RM  and your occasional post about enjoying beers or previously forbidden food.  Aint it grand?
Generally these have been gentle sessions producing little in terms of physical changes.  But he said he feels more energetic so we went for our 40min walk this afternoon, he didn't have trouble with the slow incline section.  He said "I was in trouble with this last week".  And I notice his breath isn't so ... kidneyish anymore.  Hoping for more changes tomorrow.  They have started him very slow and gently, yesterday was only 2hours at 150, today was 3 hours at 160, but tomorrow will be about 4.5 hours I think and faster.  they took about 50(ml is it?) off in total (took off 300 and put 250 back in? not sure of the measure but those are the quantities of fluid).  Today he was still only at 160, and the goal is for 300.  So hopefully the peaceful sessions and successful cannulations will start to manifest physical improvements too (fingers crossed) for he wasn't happy about starting, the other day involved a long walk alone for him and the purchase of a new hat. Its a fedora, looks good too.   

I have read others who said that the anticipation was worse than the actuality and maybe that's what has happened for G so far... but I know for him, he wasn't worried about the treatment per se, or the needles, as he'd done all that before, he was worried about the change in lifestyle, he was really really really grumpy about the loss of time and freedom.  On Monday he told the doctor, "its all very well for you, you live in doctor land" (hee hee).  Later he wished he hadn't said that.  He vowed to "get on with it".  Today he said, lets get all these tests and decisions worked out and then I can get back to my day job (librarian)   (questions include: transplant? no transplant? dialysis?  home? clinic?  How much leave will he need and will the house need to be modified and do we have to move house?)

I'm glad he's started, he kept saying he felt fine, but that's because he knows what its like to feel really sick.  So his sense of normality is shot.  Meanwhile his skin and his eyes were looking terrible, he ankles were starting to swell and he'd begun to puff more often; his hands were beginning to cramp sometimes, his legs were kicking about, his breath was funny.  You could see he was full of toxins.  Oh and you could take a photo of the headaches, I took a few.  These were not enough to stop him working and carrying on as normal, but if you think about the longer game plan, do I want to live till I am 60 or 70 or what about (call me crazy) 80, then possibly damaging your heart and your arteries and so on now for the sake of a few extra weeks off dialysis doesn't make much sense.

[RichardMEL]

Thank you Nat for this post. I appreciated it.

What I'm reading in there is that the great benefit, and hopefully definitely ongoing, is that there's greater QUALITY on D - like he can do the walk easily now and that's really important.

I guess if I got to that point with Danny where the quality wasn't there I'd appreciate what D could offer.

again ty for this.. very happy to hear....

[natnnnat]

There was good quality of life living without dialysis for a long time even though his numbers were getting high. I am trying to think what changed. Obviously the numbers are much worse since new year. He stopped ever looking well, where before sometimes he looked alrightish. Really, in terms of quality of life, it was a progression of subtle changes. He still eats heartily with no nausea, and though his feet swelled sometimes or he started to pant on walks, the next day he would be right again . But recently it was taking several days for the fluid to clear. And he started to say to me that dialysis would be a good idea. i perceived (he said) that he needed to be the one who chose when he started. And he had begun to say, after New Years, ill start. Then when he got these last bloods done, before we got the results, he started pondering going longer without D and that's when his father and I both said no no no you promised to start in the new year. For me it was that he always looked sick even if he had no major nameable symptoms ... He just looked bleah. So he went for a long walk and thought about it, and when the neph rang to say "Greg, your numbers are no good" he could already say he thought it was time.

This post is meant to all about whether there is quality on D compared to off D... I hope so. It is early days and the runs have been gentle so he is getting hardly  of the benefit yet but also little of the potential cons, like will he feel washed out after D (tired) like he used to?   There was quality off D until a point. Now we wait to see how this next phase pans out. For sure, emotionally and physically, so far D has been good.

[MooseMom]

Please keep us updated on Gregory's progress.  He's not stupid; I knew he would know when it was time to start D.  I hope that as the treatments get longer and therefore more efficient that he will feel better soon and will be able to avoid the side effects.

Forgive me for asking a question you've probably already answered, but since he is now back on D, is he now also back on the list?  Any idea how long the wait may be?

[natnnnat]

I don't think he is on the list yet... I'll have to ask about how it works here.  He is lined up for the transplant from his sister, but I don't know how all these factors would affect each other.  I'll ask (must remember to ask!)(I'll make a note of it). 
He wasn't wrong when he said he wasn't as sick as he could be.  On Friday 'we' had a session at the local hospital instead of in the satellite centre.  The patients in the hospital clinic showed me the meaning of the word 'sick'.  My gawdski.