Swelling and really short of breath - lots of quesitons

[myporkchop]

Hi all,

So we are waiting to hear from the specialists re my Mum having her operation for PD. It has been over a week since we saw them and they said they would look at possibly starting her on EPO injections.
She has always had a bit of fluid retention and swelling in her legs, feet and hands but over the last four days the swelling has been really noticeable, and her shortness of breath has been really worrying. We have been away from home and I have had to come back to work, however she has stayed on down south. I gave her a copy of the latest neph letter which outlines all of her medical conditions and medications should she need to go to their hospital.
My Mum is stubborn and does not want to go anywhere. She said she would go to see her G.P as soon as she is back (arrives home tomorrow night) so looking at the next day. I have booked in to see our GP tomorrow to discuss my concerns so that he can get some more info from the nephs. The nephs said they had 24 hour on-call assistance, however whenever I ring they sound annoyed and ask me to go through our GP. Well he only works Mon-Fri during working hours.

What I want to know is:
. Does anyone find the EPO injections helpful re shortness of breath?
. It is obvious that her SOB is due to excess fluid and retention. Will PD dialysis help to remove some of this fluid? Despite having to have extra fluid sitting in her peritoneum for up to 4hrs x4 times a day?
. Someone told me today that it is possible the extra fluid she may receive from dialysis could cause heart failure? That really worried me. I figure if she continues with all this stored fluid that could cause damage also?
. She is on 160mg of frusomide (water pills), but they don't seem to be having much effect.
. Is it normal when on these tablets to still not go to the toilet as much?
. Is it normal not to be able to go to the toilet for 'number 2' or people find that they are more constipated?
. Should I tell her to restrict her fluids?

Thanks heaps

[cassandra]

Hi MPC I think that the EPO will increase your mum's HB which should give her more energy, could also reduce SOB a bit as her blood can 'absorb' more oxygen. 
But as you say yourself the SOB is more likely to be caused by excess fluid in her body. PD is pretty good in removing excess fluid. The red bag can remove the most.
I think any kind of D could cause heart problems but PD is less likely to, and excess fluid is more likely to.
The Frusemide works less when the kidneys work less so yes a body will produce less urine when this happens.
I don't know about the nr 2's, could also be stress (the whole situation, and the traveling?)
It might be an idea to restrict her fluids but why haven't drs told her so? Might also cause more stress, and will definitely negatively influence her nr 2's.

Of cause I'm not a professional, but have have only been on D for 20+ yrs.

Your mum's very lucky to have you.

Lots of love, luck and strength, Cas

     

[myporkchop]

Thank you Cas,
I really appreciate your response. Are you on PD yourself? Or done PD? Gosh within the last two months it has been a huge learning experience.
Your advice is more reassuring as you have the experience of dialysis which I appreciate more.
She told me tonight she was very worried and scared about her breathing. She is ok when she is sleeping and sitting, but any moving/ walking very short distances makes her extremely SOB.
I have not seen her like this before, and all the swelling and it really worries me. I told her to please go to the hospital where she is, but she said "no, what are they going to do, I will wait until I get home". So stubborn
I can't stop worrying and just want her to get home asap so I can get her seen to.

Thanks again Cas 

[myporkchop]

Sorry Cas, I just read your history part. Gosh you have been through a lot. How did your peritoneum burst? I didn't know that could happen? Sorry I hope you don't mind me asking

[Charlie B53]

Furosimide works to force the remaining kidney function to produce more urine.  I take 120 MG twice daily AND metalazone which somehow assists the furosimide.  With only about 4% kidney function remaining I still produce somewhere between one and one half liters daily depending on how much I drink and sweat.  More sweat, less urine.

You can restrict her fluids somewhat, but I would want to cause her a lot of discomfort.  Very young and very old people always are far easier and quicker to dehydrate.  Watch for it always.  Even with leg swelling, circulating fluid volume can go wrong too easily.

Is she wearing any type of compression hose to help reduce the leg swelling?

Fluid retention can cause fluid accumulation in the lungs, causing rapid shallow breathing with difficulty.   This is a serious problem.
It also can cause fluid accumulation in the sak surrounding the heart.   This can be a major problem as the heart can not fully expand to fill with blood.  Heartbeat increases and can become dangerously high.

The furosimide and PD both help to remove excess water, but both take time to do this.   Once she begins PD it will take a week but she will soon begin to see a change in the reduction of her leg swelling as the excess water begins going away.

Ask her Dr if adding metalazone is a good idea in her case.  If she is having constipation problems ask about stool softeners and increase the fruit and fiber in her diet.  Try to avoid some breads and cheeses.

I hope she gets her cath placed soon.  She needs time to heal before beginning treatment, and hopefully someone like you can go to training with her.  It is alwas great for someone else to know how to do her exchanges just in case she is ill and unable to do them alone.

Take Care,

Charlie B53

[kickingandscreaming]

I ditto everything that Cas and Charle said.  I'm also thinking that if she is "down south" that she is probably also dealing with excessive heat and humidity which can increase swelling.  Where I am (MA) we've been having some pretty hot, humid weather lately and I am noticing more swelling than usual.

i also wouldn't be surprised if they started your mom off on hemodialysis as that can more quickly draw fluid off than PD which does it more gradually.  When I finally crashed it was from pneumonia.  And I had great difficulty breathing and I was very swollen.  My legs were like tree trunks.  I was immediately started on Hemo to get me to a place where PD would be adequate.

[Charlie B53]

I keep forgeting the Dr's could put in a neck cath and start Hemo IMMEDIATELY while waiting for a PD Cath to be put in and heal.

It is up to the Dr's depending on  her need, but still an immediate option that may be considered.

[myporkchop]

Hi Charlie and K&S,

Thanks for your reply. With the neck cath/ hemo how does this work? For example, are you on this for hours each day, alternate days etc?
Do you have to remain in hospital, or can you go home and come back the next day type of thing?

I will ask about metalazone, thank you.

I received a phone call today from the dialysis team and they have booked her in for the surgery on Friday, which is only 3 days away. Short notice, but great, not having too much time to be nervous.
They want us to meet with the PD nurses on Thurs to go over what will happen within the next few weeks and to ask any questions. We then see the Dr.
Fri morning she will have the operation and stay overnight in the special care unit so they can monitor her closely.
I asked about whether I still needed to run her care past her GP and they said no as they will be following up with her weekly and will be adjusting her meds etc. So that is great.
Sounds like it is going to be a full on next few months.

[myporkchop]

p.s I will encourage her to wear the stockings. I got some the other day, but she refuses to wear them..stubborn. I will try again

[kickingandscreaming]

I don't know how it usually works, but in my case I was already in the hospital (having had my PD catheter already in place at that time) and they inserted the neck cath and I started hemo while still in patient.  After that I was supposed to start PD but my catheter didn't work so I had to do hemo through my neck cath in the dialysis clinic until I could get the PD catheter sorted. Then I switched to PD.

Your mom's team should know how to proceed and whether her fluid level is a deterrent or not.  I hope it goes smoothly.

[Charlie B53]

There are more than just a few types of support stockings, knee high, thigh high, and tube.  Knee high are very similar to ladies knee high stocking only much tighter and you do not have much color selection.  Thigh high are a serious P.I.T.A. Not only awkwards to get on, they do not stay up very well.  At least for me.  Very hot and uncomfortable.  The tubes I now have I like the best. a light elastic type of semi cotton so not too hot when worn single layer, but may be doubled to provide even more compression.  Comes on a roll.  Simply measure your length needed from toes to however high you want them but measure UNDER the foot and up the backside of the leg.  Cut that length off the roll and put on just as you would a pair of nylon stockings.  By far I like these better than all the others I have tried.

It can be difficult to convince someone of their need to wear the socks.  But I have learned the more I can keep my legs from swelling, that it actually does make a difference in how I feel.  I don't get as tired each day having to carry such heavy legs around.  Lighter IS better.  If she doesn't seem to understand, try putting a pair of exercise ankle weights on her for a while.   That is how it feels with swollen legs.  And she will have to admit it feels soo much better when the weights are taken off.

sp mod Cas

[kickingandscreaming]

But where does all that fluid go that is being "compressed" from the legs?  It still has to go somewhere.

[cassandra]

Yup the fluid goes to the belly I think. Well, mine did 

[kickingandscreaming]

Is that an improvement?

[cassandra]

Well, One can hide a belly under a long shirt?

[myporkchop]

thanks for the tips re the stockings. I will try find the semi cotton ones, that might be something she might try.
I will update after our appointment tomorrow. Thanks k&s.

[myporkchop]

Hi all
I just thought i would send a update. So my mum has decided to give the dialysis ago. She is as i speak in theatre having her catheter put in her stomach for pd. We went to see the pd nurses yesterday and they were shocked with the new amount of questions i had 30 in total i think. Most of what i asked were ideas and questions from a lot of u in ihd. Others were practical. But none of them were about his to deal with this mentally. My mum was upset last night and just prior to going into surgery that all this is happening to her despite all her other health complications and now having to have a catheter sticking out of her stomach and on dialysis for the rest of her days i didn't know how to comfort her with that one, just to say if she didn't then her time here sound be cut short. I was so sad for her. I am waiting for the phone call that she is in recovery and i can go and see her.
They were not going to do her procedure under general anesthetic due to her risks of breathing and heart etc. So we thought it would be local, however they told us just before she went in that they would have to do general as would be too tricky fir her under local.
How did all of u cope with getting your head around this? She is not a candidate for a transplant.
Thanks everyone

[myporkchop]

She is in the special care unit now, the procedure is all done. Thank goodness. Now we wait for the healing time and then the dialysis education. When we went in the other day, they told us my Mum would have her own room to do most of her education etc.
We thought she would be around other people and thought it would be nice to make new friends, but looks like they are all on their own in their own private room? The training they said is from 8am - 4pm Mon-Fri which she will start in 2-3 weeks. Gosh they are long days sitting in a room on your own.
What do you do to pass the time other than the learning? I suggested maybe knitting? I really don't know

[kickingandscreaming]

I'm pleased to hear your mom made it through the surgery. I'm not sure how her surgery was conducted.  Mine was also under general anesthesia and was done laporoscopically (i.e. minimally invasive).  They do have to pump in gas into the peritoneum and that actually is the hardest part of recovery.  There is no where for the gas to go as the peritoneum is a closed cavity, so it takes a couple of days for it to dissipate and it feels very full and can be uncomfortable until that happens.

Any change in the body--like all of a sudden having a tube coming out of your stomach-- is an injury to the body image and takes some time to accommodate. I've had mine a while now and if I really think about it it is depressing to have.  But most of the time I don't think about and have just adjusted to having it.  It helps that i'm 74 and single, and the chance of my ever wanting/needing to be attractive to the opposite sex again is kind of a joke.  So that's not an issue.  And I'm not the bikini type.

My training was spread out to 2 weeks of half days. During that time she will actually be doing dialysis.  The only down time is when she will be "dwelling" with the fluid.  She will either be learning new information during that time or could read a book or chat, whatever.  She could also walk around dragging her IV pole.

[myporkchop]

Hi K&s, thanks for your reply. I didn't know about the gas, so that is good to know.
I think you are right, not to think about it all of the time. I suppose because it is quite sore at the moment it is hard not to think about it, but once the pain goes away then as you say, just adjust to having it.
Made me laugh about not a bikini type, neither is my Mum so that is good.

I hope the training is half days too, that would be great. I will ask on Monday. The doctor said she will start dialysis in 3-4 weeks.
Thanks for all your advice, we find it very helpful x

[Charlie B53]

I didn't have any problem adjusting to my new 'plumbing'.  My biggest problem is a lack of surface feeling in that area from nerve damage during by-pass surgery years prior.   I simply securely tape my catheter such to help prevent my snagging or catching it and pulling on it.   Fortunate for me I always wear at least a T-shirt covering it.  My fair skin sunburns very easily, and even if the temps are moderate I am not active enough to burn very many calories so I tend to chill very easily.  So my cath is always covered the moment I sit up in bed until I lay down again, other than uncovering for cleaning

Given time this will become second nature to Mum.

Training wasn't a problem.  Depending on how her Nurse presents information Mum will be so rapt with new information and be actively involved doing the exchanges, practice is a very important part of training.  .I had to wear a 'bladder vest' which has a cath which I had to connect to, fill and drain exactly as if I were using MY cath.   Mum will, or should have to do this very many times and be well practiced before it is time to do her own exchange for real.  It should not be any problem.

The most important part of training is to ASK questions for any part that she isn't absolutely clear on understanding.   Never be afraid to ask, even if she thinks it may be a stupid question, ASK.

Prevention of infection is critical from now on.   So anything she isn't perfectly clear on needs to be spelled out until she is confident she knows what to do, and why.

[DayaraLee]

So glad to hear that your mum got through surgery and is now beginning the healing process and preparing for training!

[myporkchop]

Hi Charlie,
Thanks for your reply. I am sure the training will go well. And yes definitely we will ask questions all the time.
I don't think she was prepared for this mentally, but now that it is done we just have to support her with the adjustment. She was wearing her favourite jersey today and kept looking down and seeing the catheter poking itself out. She felt very self-conscious so wore a cardi over the top to try and hide it.
I helped her to wash and do her self-cares as she was very sore. I think she felt better once she was dressed and out of a hospital gown. She is home now. I hope the pain will go away quickly.

Hi DayaraLee,
Thank you for your comment

[myporkchop]

URINARY TRACT INFECTIONS:

Quick question. She has pain in her groin again which she had a while ago. It turned out to be a urinary tract infection. Do many of you get them all the time? Will this hopefully improve on dialysis?

[kickingandscreaming]

Do many of you get them all the time? Will this hopefully improve on dialysis?

I don't get them and I don't think it has much to do with anything dialysis will fix.  Sometimes UTIs are the results of screwy "plumbing."  Other times from excessive sugar.  Still other times it's from contamination with E coli from improper wiping during bowel movements.  Front to back is the correct way or contamination can happen and that causes a lot of UTIs.