Swelling and really short of breath - lots of quesitons

[myporkchop]

Thanks K&S, it seems to have improved a bit today.

Charlie: I have got some compression stockings for her now and she is wearing them. I take them off her at night before she goes to bed. I wish there was compression stockings for hands and arms too as she is still swollen.

What do you use to cover the catheter under your clothes? My mum has quite a large tummy, I was wondering if I should ask someone to make a band of some sort that she can wear around her tummy to protect the catheter?

What do you all use?

Regards

[kickingandscreaming]

There are several PD belts on the market.  Many people just hold it in place with tape, but I am sensitive to most tapes and I don't like the long term effect on the skin of removing adhesive multiple times/day.  I use a belt called P-D Click which I order from the UK.  http://www.peritonealdialysis.co.uk  It's an elasic band which I discovered is latex (and it made me break out in welts so I replaced the band with latex-free elastic and I still get itchy).  You can also look here: http://us.kidneystuff.com/belts.html  and here: http://www.fstubbs.com/pdbelt/

They are simple enough that with some basic skill you could make one yourself.  Mine lies flat against my stomach and doesn't show unless I wear something skin tight (not my style).

[myporkchop]

Thanks for the tips. I will look at the sites. I wonder if you can get them custom made? I will look them up. I think I will look at latex free also. I could purchase one and then look at making one as you say
Thanks for the sites

[Fabkiwi06]

Get a Boob Tube!

My first appointment with my PD clinic, they gave me a couple of those elastic tube strapless bra things - you know the kind that are just a round band of stretchy material with no underwires or anything. They're horrible as bras, but amazing for this. I wear one around my middle to keep the tubes in check. It's doubly nice because it stretches with any weigh fluctuation and it kinda help smooth that area out under my clothes.

I've seen versions of them at Target and Walmart, so hopefully they're easy for you to track down.

[Charlie B53]

LOL  Those tube tops look fine, on 'some' Ladies.  Others, not so much.  I think those members of the LBT Club fit them best without any 'fallout' problems.

I used to wear a PD Belt.  I am a larger 'Guy' and sweat just thinking about going outside.  I finally began to understand what many women mean when they say "My bra is killing me!"  Since my cath is tunneled and exits nipple high I wore my belt in the crease immediately below the breast, exactly like your bra strap.   It wasn't so bad in cold weather but the hot humid summers here in the mid-West it is a killer.   I quit wearing it and started taping in two places to support the end fitting and the length of hose.   My skin is sensitive to many tapes, often actually peeling the skin away.    The Cover Stretch Roll my clinic provides works very well but I do have to prep my skin with one of those betadine wipe pads and let it dry before taping.  If not, I form water blisters under the tape, which of course peels off when the tape is removed leaving a nice bare spot all raw and sore.   I don't forget to prep now.

Like anything else, with time everything will become second nature, just another part of getting dressed.   It does take a while to learn what works best for you.  We are not all the same, wish it were so easy.

My actual 'site' has been cauterized numerable times in the three years so far.  We recently changed from a covered dressing daily to leaving it uncovered or at the most, just a band-aid.  We found because I do sweat so easily and so much, my dressing was always wet.  Leaving it open and drier it looks so much better.   But that is me, this may not be advisable for others.  Talk to your Nurse.  In time you and she will see what works best for Mum.

Oh, I was just wondering, the tube compression material I get on a roll,  could that be used for arms as well?   Good question for your Nurse.

Take Care,

Charlie B53

[myporkchop]

Hi all,
Mum had her PD catheter op 2 weeks ago now and is waiting for the training to start for dialysis. They said that may start in 4 weeks, with 2 weeks of training before she even starts dialysis.
A few weeks ago she was so swollen with fluid overload and was such a worry whether she would make it back from her trip safely or not. But she did.
On thus night she was again swollen and very short of breath. So much so, that she wen to her g.p for something else and he sent her off to hospital with suspected acute heart failure due to all the fluid she has been retaining.
They have been giving her fluid pills but that hasn't been really helping too much. So yesterday gave her IV furosemide to help her to go and pee it out faster.
She is still so chesty and wheezy and extremely short of breath, which tells me that she needs more IV furosemide to help drain this fluid.
Gosh she is a worry..but this fluid retention is awful!!

[myporkchop]

p.s for some reason they do not want her to start dialysis just yet, to allow for her catheter to heal. She will be seeing the doctors this morning. I think they are thinking of giving her two lots of IV furosemide today and see how that goes.

[Charlie B53]

Congestive Heart Failure is a scary time.  Very rapid shallow heartbeat as it cannot fill completely to pump a more normal amount of blood.  It works overtime and gets less done.  IV lasix is about the only current treatment that does much.  And even that takes time to work.

Mum really needs dialysis.   If she gets too bad the Dr may put in an arterial cath and start hemo that way until she can get her training and start PD.

Praying for the best.

[kickingandscreaming]

Mum really needs dialysis.   If she gets too bad the Dr may put in an arterial cath and start hemo that way until she can get her training and start PD.

I agree.  They shouldn't wait under these conditions.  I had pneumonia when I crashed and I couldn't breathe and was very swollen.  I was hospitalized, got a neck catheter and hemodialyis was started right away and I continued that (in the hosp. and then in the clinic) until I could get my PD catheter sorted.  Not only is what she's going through extremely uncomfortable, but it is life-threatening.  She should get the advice of a nephrologist, not a GP.

[myporkchop]

Thank you Charlie ans K&S. I don't know why they wont start with a neck catheter. They basically took her off the IV and put her back on tablet water pills but increased the dose. They wanted her to go home from hospital today but she said no as she felt she still wasn't feeling too well.
The neph said soon the water tablets wont work and her kidneys wont respond to them. I was like, well lets hope it holds out until she starts PD. Gosh all this waiting time is so scary. Meanwhile she feels worse and worse.
When they spoke to her earlier in the year about going down the conservative treatment option rather than dialysis the nephs said they would keep her as comfortable as can be and that she would have more quality of life. This is not quality of life, nor is it comfortable. It is awful to see her having to go through this.
I appreciate your advice and comments I really do. We both do.
My mum keeps telling people that if it wasn't for me joining this site she would never have thought she could go through with dialysis. So can't wait for it to start. Thank you

[Charlie B53]

My Neph has me taking metalazone. It may be spelled wrong, but sounds like that.  It is something that enhances the water pills to stimulate the remaining kidney function to remove more water.   Ask about it.

Quality of life can vary from one person to another.  There is no hard and fast rules.  It can be difficult for one to consider how another person is feeling.   Mum WILL feel better once she has begun Dialysis and finally gets much of the excess water out of her system.  It is all this water that is causing the majority of her problems.    I don't know if her Dr has used the term Congestive Heart Failure, but fluid accumulating in the lungs, heart sac, extremities is the general pattern.   Water pills is the first course of treatment, followed by continuing dialysis.  Once Mum gets closer to a more 'normal' water balance she should pretty much be her old self again.  And can have many more years enjoying you trying to spoil her.

[myporkchop]

Oh your wonderful Charlie Yes I can't wait for her to start dialysis now, and neither can she. She just wants to get on with it, but all the waiting if frustrating.
I will ask tomorrow when I take her to get her catheter flushed about metalazone. Thank you. Yes there was lots of talk about her heart while she was in hospital, they though she may go into heart failure when she was admitted due to all the fluid build up, and often talk about CHF.
She lost another 800g of fluid today when she weighed herself, so the more the better. Although yesterday no weight loss. So I suppose we just take it one day at a time.
Thanks again xx

[Fabkiwi06]

If mum's appetite and diet restriction is up for it, you might consider adding some food diuretics like asparagus, garlic, and beets (careful of the potassium in these) to her diet while you're waiting. If you're seeing your clinic nutritionist yet, ask if they have recommendations that would be safe given her labs.

And, I'm sure you're getting hit over the head with it daily, but salt is EVERYWHERE! It still sneaks up on me sometimes too (why is there salt in canned peaches... seriously?). When I was having my Edema problems in the beginning, I couldn't even eat store bought bread because the tiny bit of sodium in that would just retain so much fluid. My diet basically was chicken, rice or couscous, and eggs until I got the fluid out.

Hang in there! Dialysis is no walk in the park, but it certainly way better than the struggles you're going through now.

[myporkchop]

Thank you Fabkiwi, I never knew there was salt in canned peaches either and bread. Gosh, it is everywhere as you say. Thank you for the advice x

[kickingandscreaming]

never knew there was salt in canned peaches either and bread. Gosh, it is everywhere

Sadly, it  IS everywhere,  That's why you have to read labels.  And why it's best NOT to eat stuff from a can.  Sometimes it's necessary to eat food that has been leached in water to remove some of the potassium.  But if you don't have a potassium issue, then it is always better to eat fresh food.  The processing that goes into most commercial foods (canned, frozen, packaged, etc.) adds all kinds of stuff that is bad for kidney people.  Stick with real food.

[Fabkiwi06]

When I first got sick, and right after I was hospitalized for edema, my dietitian gave me a specific list of food to eat that was "OK". The thought was that I would follow the strict diet bit until all my labs got under control (everything was super high). Canned fruit was considered acceptable because of the lower potassium. And I went with it because I was so tired all the time it was easier to just go to the store once every two weeks and stock up.

Thankfully, that phase was only about a month long. I'm back to my farmers market produce (mmmmm peach season). As long as my labs are good and I'm feeling good, I get to have a lot of flexibility in my diet. (Neph even gave me permission to have the VERY occasional beer )

This was a really useful resource for me. It targeted for a hemo patient, but I think when you're in the beginning of the process and feeling the effects it's useful to go as strict as possible until things even out.

https://www.kidney.org/atoz/content/dietary_hemodialysis

[Charlie B53]

Thanks Fabwiki, I printed most of that page so my 'Other Half' can get a better idea what to bring home from the store for me.

I am very fortunate on PD in that I am not quite as limited as to the amount of phos I can have before needing to take my binders.

And my Dietician is always telling me to eat more potassium as I am taking a LOT of potassium supplement daily already.  Just my system I guess.  I never have been what anyone would call 'Normal'.

Now, If I could just start losing that 40 pounds the prednisone put back on me over the last year I might feel a bit lighter at least.  Better?  I will have to wait and see.

Thanks for the link.

Take Care,

Charlie B53

[Fabkiwi06]

If you dig around on that site, they have a great recipe resource too. And their restaurant guide isn't half bad either.