switching to heamo

[brenda seal]

I hope I am posting this in the right place . Some of you may be aware that since starting PD in January Laurie has been battling -BIG TIME ! He has lost over 30kg in weight and has huge muscle wasting  , he has absolutely no energy and the slightest exertion leaves him totally exhausted I mean things like going to the toilet and showering . The last few months he has only left the house to keep medical appointments or go to hospital ( 7 times this year ) . We have to use a wheelchair .
Apparently there is no scientific explanation for this state of affairs ! We saw his kidney specialist today and he wants to try switching him to heamo dialysis to see if this will help . He is organizing for him to have catheter put in his neck sometime next week . Does this mean he will not be able to have the dialysis at home ? A fistula is not an option at this point as after 30 years on prednisone his skin is very fragile and his veins are not in great shape either
Has anyone else been switched from PD and for what reasons ? Did it help ? Any information will be appreciated as we know nothing about this form of dialysis .
Brenda

[cariad]

Your poor Laurie!

Well, I know nothing about PD but from reading here over the years some people just never do well with one modality and then switch and are suddenly much improved. Hopethat's the case for Laurie. Sadly, I am nearly certain that a catheter means no home hemo, though there may be the rare case. Neck caths are untunnelled and as such are meant to be very temporary. (days to weeks) Have they explained why they don't want to go straight to the tunnelled line in the chest and maybe spare L. another op? Tunnelled lines can be kept in months or years but one must be meticulous about avoiding infection risk. An infected tunnelled line can quickly turn lethal.
Best of luck, Brenda. I hope this switch is the answer.

[jeannea]

You should ask about neck cath vs. chest cath. A chest cath lasts for 6-12 mos if kept clean. I'm sorry he has to switch but hopefully he will feel better. He can't continue the way things are. He's had awful suffering. Hang in there.

[noahvale]

^

[MaryD]

I was wondering how Laurie's appointment went.  I hope this works for him.

 

[brenda seal]

Thanks all for your input and thank you noahvale for the links . Laurie was rushed to hospital yesterday by ambulance very ill . His urea was at 39 and creatinine nearly 900 . The switch to haemo will begin on Monday , I have not seen the doctor to ask about the neck vs chest catheter . Noahvale his haemoglobin is not too bad at present  120 it has been as low as 78 but his dose of mircera has been increased recently and he was at hospital about a month ago for five hours to have an iron infusion but it made no difference to how he felt .
I have asked if his rheumatoid is a factor in all this and if other rheumatoid patients have similar problems on dialysis . The doctor said they do have other rheumatoid patients but nobody on the same scale - he said Laurie's rheumatoid is the worse he has ever encountered .
Praying and hoping now the switch to haemo is beneficial - he doesn't want to run a marathon but just his life back to his " normal " .

[Alex C.]

FWIW, you mentioned 'fragile skin' caused by using prednisone. This may have also affected his peritoneal lining, which may be the reason why PD didn't work for for him. Unfortunately, hemo catheters aren't really a long-term solution for most people. I'm assuming that your nephrologist is telling him to have a graft done.

[jeannea]

If he went to the hospital as an emergency, they may use the neck cath first. They put a neck cath in me and did 3 days of almost continuous hemo because I was in bad shape. Then they scheduled the surgery for the chest cath once I was stable. Don't worry. They'll help him.

[bevvy5]

It's darn scary.  I'm flashing back to the two times my husband was switched from PD to hemo on an emergency basis - he's now permanently doing home hemo.

Hubby was the same, just kept getting sicker and sicker, lot about 80 pounds in about five months as he just felt too sick to eat most of the time.  Basically PD just wasn't cutting it and his urea and creatinne levels just kept climbing.

The good news is he's feeling pretty good on hemo.  He would probably feel a little better if he did a little more and he has that option at home but it's worlds away from where he was a year ago.

Hopefully they can sort out a better access for him although Greg has a chest cavity for about five months while his fistula matured.  It wasn't too bad other than the no getting it wet thing.

Take care.

[amanda100wilson]

I feel tons better since I switched but I am doing home HD and there is a huge difference between how you feel doing home vs. in-unit.  if home HD is doable, I would suggest that that is the way to go.

[Henry P Snicklesnorter]

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[lmunchkin]

John did PD for 5 years, and did well with it.  He is a diabetic, so the dextrose was a little sticky on his BS, but all in all, it worked ok.  But when he got Peritonitis the last  time, he could no longer do PD.  They switched him to hemo.  He did In-center and hated it.  After a year of In-center, we found out about NxStage (was not offered as an option when started D) and have been doing Home hemo for over 2 yrs with nxstage.

I, from personal observation, know he has done much better with hemo than PD. I think there are alot of variables there too. My husband is not young and has alot of other issues too. PD may not have been the best choice for him in hindsight!  But I would highly recommend the Home experience versus In -center.  That being said Brenda, none of it is easy for Laurie or you.  If you both are use to doing the PD at home, you will both be eager to get back home with Hemo too!  Lots to learn with the hemo though.  I thought I knew a lot when I did PD on John, but I learned alot about the process with Hemo. I learned more about ESRD than with PD.

Keep us posted.  You both have been through so much and Blessed to have each other!

God Bless,
lmunchkin

[brenda seal]

Quick update - Laurie very sick today - dialysis definitely not working - toxins building up . He had an echogram today to see if there is a suitable vein in his neck for catheter . He had 14 hour surgery a couple of years ago on his head and neck  ,( result of cancer ) to remove his eye and parotid gland . They think vein ok so putting catheter in 8 .30 tomorrow morning  . Prayers please or fingers crossed . Thanks everyone for your encouragement .

[MaryJoe]

Oh Brenda, I am really sorry Laurie and you are having such a rough time.  you've both been through so much lately, and I was really hoping you'd get a break soon and Laurie could have just a little 'normal' back.  Please tell Laurie we are all thinking of you both, and are sending all the positive,healing energy we can muster to you both.   

[lmunchkin]

Definately sending prayers.  Give us an update when you find the time, Brenda!  Thinking of you & Laurie. Take care of yourself while he is in the hospital. He will need you when he is released.  Are they thinking where they removed his eye that there may be a complication developing over time with that?

Please keep us posted!
God Bless,
lmunchkin