stage 5 renal failure in shock please help

[myporkchop]

Hi all,
My Mum found out 5 weeks a go that she has stage 5 renal failure. The doctor's said she may only have 6 months to a year to live. Another doctor said 3 months to a year max. Her kidney function has declined rapidly since 2015, it was only operating at 11% 5 weeks ago, but after a blood test yesterday this has now dropped to 9%. She has other serious health conditions such as COPD, type 2 diabetes (insulin dependent), hypertension, high cholesterol, CHF and two years ago she suffered from deep vein thrombosis and almost lost her life. She is a fighter that is for sure, but this latest news has come as a complete shock for her and for my family. From meeting with the doctors the feel seems to be for her to consider conservative treatment. She is only 64 years, and has fought so long, and wants to see her grand children grow up...they have told us the many complications that she may go through with dialysis and said it is dangerous if she has the operation for the cathether (peritoneal dialysis), and dangerous if she doesn't...

Her health complications make it very risky for her to go on dialysis, but we don't want her to leave us so soon

I asked at the dialysis education session if there were any support groups or people we could talk to that have been in a similar situation and are either on dialysis or on the conservative treatment. They gave me a card with a facebook group. My Mum is not on facebook and neither am I. She wouldn't know how to use facebook...we have seen the surgeon and he said they can operate, although we are due to see the anethetist on thursday, so it is all up to him whether he is willing to risk putting her under general anaesthetic. We just don't know what to do. I don't want her to suffer, especially with her COPD, she already has difficulty breathing as it is. But we don't want her to give up either. At the end of the day it is her decision as she is the one who is going through this, although knowing my family we want her to LIVE.
Any advice would be greatly appreciated..she has had an iron infusion which helped a bit, but now has a chest infection that has lasted for 2 weeks, which the doctors say may have caused her kidney function to decline even further.

We just don't know what to do

[Michael Murphy]

What seems a difficult choice is not.  Your mother is a fighter and obviously enjoys her life.  Dialysis is the one treatment that will prolong her life.  Either PD or Hemo.  Yes the operation may endanger her life but ESRD will certainly endanger it more.  My advise would be find the best doctor have your mother follow the doctors advise.  And take a chance on the procedur.  Also remember while dialysis is a pain in the butt.  I feel it is not the end of my life.  It's better than a trip to the dentist.

[kickingandscreaming]

I'm so sorry to hear about your mom's troubles.  It does sound like she has a lot on her plate.  On the other hand, being a fighter is a plus.  Are you totally confident in her medical team?  If not-- and maybe even if so, -- it might be good to get a second opinion. 

Are her other conditions as well controlled as they could be?  Is she compliant with treatment?  These are all important questions as dialysis is no walk in the park even for young and healthier individuals.  When I did in-center Hemo for a month and a half (I'm now on PD) I saw a lot of very old and infirm people who had to be wheeled in on gurneys and I often wondered what motivated them to go on under those conditions. Each of us has our own reasons, and ultimately it is up to your mother to make an informed decision ("informed" is the operant word here).

I'm 74, but in generally decent health (if you can call living with no kidney function, and high BP and marginal Type 2 being "decent.)  And dialysis has not gone easy for me and I do struggle with just how much I'm willing to endure.  So these are questions that many of us face from time to time. Wishing you all the best.

[iolaire]

Do you have a choice of the type of dialysis?  Just wondering if she is at 9% have they discussed that you might have time to put in an access (fistula) and let it mature (for hemodialysis) prior to starting dialysis?  Rather than going the catheter (peritoneal dialysis) route?  I'd assume the fistula surgery is much less invasive than the catheter.  When I had my fistula put in I was out but is arm/vein surgery rather than belly.

[Charlie B53]

You have come to the right place to ask all of these questions.  Most ALL of us have gone through much the same conditions your Mother is facing now.   And we are still here to share our experiences.     

I am now 62, over-weight a bit.   High cholesterol, already had a triple by-pass.   Had a number of stents placed in my illiacs, right at the Y of the main artery that feeds both legs.  It helps supply enough flow that I can still walk, just not too fast or too far because of all the other restricted arteries and veins.

Of course I am diabetic, but I am pretty well controlled, more than a bit careful what and how much I eat to keep my insulin use to a minimum.

I have been on PD just a month over three years already and doing very well.  It really hasn't been difficult to do, as long as I am careful to avoid infections.  So far so good.

Yes there are risks in every procedure.   Asking questions, learning what you can ahead of time is good.   But know that dialysis can be a good thing.  Removing the toxins and excess water WILL allow your Mother to feel better and continue being active for quite some time yet.   It is not an ending, but a new beginning.

It is not that difficult to keep a reasonable measure of health and activity.   I think I am doing just fine and plan on doing this for quite a while yet.

 I am sure things will work out OK for your Mother.  Have trust that the Dr's know what they are doing.

[Rerun]

Welcome, I'm so glad you joined us.  You get the truth here.

It is your Mother's decision.  I think she should just get the catheter in her neck/chest and do hemo.  That is the least invasive while not an easy thing either and you have to be careful of infection which she already has one hmmmm not sure about that.

She always has the right to discontinue dialysis and go peacefully.  So, try it and if she just can't take it at least you will know.




Welcome - Rerun, Admin.     

[Charlie B53]

Studies indicate the more time on dialysis the better the effect.  And the less shock to the body.  Those doing long duration hemo as well as those doing hemo at home 5 or 6 days a week fair far better than many doing in-clinic 3 times a week.

And many of us doing home PD daily are doing very well with almost no shock to the body.

If trying to decide which method may be easiest for your Mother then consider the immediacy of her need.  A neck cath for hemo can be done and treatment started immediately.  I would then seriously consider surgery for a PD cath as once healed treatment can be done daily at home.   This may be the least overall shock and be the most comfortable treatment.

[myporkchop]

wow thanks so much everyone for your feedback and advice. I read all of your comments out to my Mum and we both feel reassured that going through with the dialysis is the best option.
I suppose the doctors have to tell us the biggest risks that she may face, but hearing them all talk us into conservative treatment came as a shock. We didn't think dialysis could be a option. They did say it is her choice and they would support her if she chose dialysis.
We will find out tomorrow when we see the anaesthetist. We have our fingers and toes crossed.

Thanks again

[iolaire]

FYI here is an article that talks about why people might not want to start dialysis:
http://www.nytimes.com/2015/03/31/health/learning-to-say-no-to-dialysis.html?_r=0

I found it looking for this article :
http://www.npr.org/sections/health-shots/2015/07/06/413691959/knowing-how-doctors-die-can-change-end-of-life-discussions
In that story doctors say that they would not do dialysis at end of life by the qualifier with that article is it asked "a group of 765 doctors were asked what they would want done for themselves if they were suffering from something along the lines of debilitating brain damage or severe dementia."  That doesn't sound like your mother's case.

[myporkchop]

Charlie B 53: Thank you for the heads up and telling me about your experience with dialysis. Sounds like you are a fighter too Thanks for you advice.

Rerun: Thank you for your advice also, I will discuss tomorrow at our appointment with the anaethists.

iolaire: Thanks for your reply. We find out tomorrow if my Mum even has a choice of what type of dialysis she may want. We just hope that they will offer it in the first place as we have heard they could turn her down due to her health complications.

Thank you also for the links I will have a good read of them.

Michael Murphy: thanks for being straight to the point about choices.

Kicking and screaming: I like your user name Yes her other health conditions are well controlled, although her COPD has been a bit of a problem in the last few weeks. She was very short of breath at one point (well with COPD it is all the time), and it was very noticeable. We found out that she was very anemic and a few weeks later had a iron infusion, which took a couple of weeks for her to feel better, but she did. She is now very short of breath again ( one month later) and this has been in relation to her COPD and chest infection, but I also wonder if she needs the EPO injection as top ups of iron. Thank you again for your advice.

[myporkchop]

Addit to my first post:

What I thought was just a routine follow-up appointment with the neph 5 weeks ago turned into a nightmare.
They told my Mum that she should consider conservative treatment as she has other very serious health conditions and she may or not get better from dialysis.
They talked about her having better quality of life over quantity. However, since finding all this out my Mum's health went down hill. She began having sever pain in her lower back and ankles and couldn't walk. She was very short of breath all the time and we initially thought this was due to her COPD, but found that she was anemic. She had a iron infusion which helped her shortness of breath and she had more energy. However, within the last couple of weeks she has had a chest infection which the doctors say could have caused her to have a further decline in her kidney's - now 9%.
Obviously, we have been very worried and have been trying everything to make her better, such as acupuncture and deep tissue massage for the pain. She has just started gabapentin for her restless legs and itchy back.

I will let you all know the outcome of our meeting tomorrow with the anesthetist. Take care everyone

[iolaire]

She has just started gabapentin for her restless legs and itchy back.

Good luck, to me these symptoms sound like she is getting very close to needing dialysis.

[hatedialysis2]

My thoughts and prayers are with your mom and family.  If she has the fighting power and will to survive then She might just pull it off .  If the doctors are all against her going on dialysis and left with no other options, I would do drastic life style and diet modifications.  If she is not on any potassium restrictions I would look into juicing organic vegetables especially green leafy vegetables.  Limit  animal protein, drink only filtered water again following any restrictions on amounts.  Add a high quality probiotic .  No Organ meats dairy, fried foods, sugar, starches.   No caffeine.   Herbal teas like nettle, dandelion would be a good addition.  acupuncture and massage like you mentioned.  Breathing exercise, happy thoughts,and lots of prayers from as many folks as you can recruit.     

Oh I would google the side effects for the medications she is taking. Check with your mom and her doctors if she absolutely needs all of them.  The less chemicals the less load on liver and kidneys.

[myporkchop]

Thank you hatedialysis2. I might just try with these diet modifications asap. We went to the anaesthetist today, and sounds like they may be able to do peritoneal and not under general anaesthetic. They are looking at giving her a local anaesthetic and perhaps a epidural. They think this may be the safest option for her. Due to a mastectomy from breast cancer over 20 years ago she has lost lymph nodes etc and hemo dialysis may not be an option. I have to take her to get a echo cardiogram next week so that they can basically see how strong her heart is.
I asked many questions today so we got all the answers we needed to hear. One of the questions was..how low can the kidney function be before starting dialysis as she is already at 9%? They said within the next month she may have the operation for peritoneal, then wait a couple of weeks for the incision site to heal. So we are well and truly looking at over a month and a half before she even starts dialysis.

So much to think about. My Mum had plans for when she reached 65 years, she wanted to go for weekend trips away with my Dad as they will both be pensioner's by then. All I want is for her to have time to enjoy her life again.

Thank you everyone xx

[Charlie B53]

PD can be done most anywhere, any time.  As long as she is always careful when opening the fitting to make connection that she is in a still air space.  NO draft.  I've done my exchanges in my truck while traveling.  :ay the drain bag on the floor, when time to fill I opened the window and set the full bag on the roof so to be as high as I could get it.   It wasn't as high as at home hanging from my IV pole so it took a couple of minutes longer.  But it works just fine.

I forgot to ask about urine.  At 9% I imagine Mother is still producing.  Is Dr ordered Lasix (water pills) to try to increase production, thus help remove some of the excess fluid.  I take three at a time, twice daily, I am currently about 5% but still making some, a few times daily.

Compression hose.  I get rolls of this compression sock material.  Measure and cut off a length from toes to knee and slide it on.  Initially I had to use two layers.  That was pretty tight, and warm.  Fortunately I have gotten rid of most of the excess and one layer is adequate now.   Easily machine washable, just cannot dry, the heat will ruin it.  Must hang and air dry.

There are many that made the dialysis decision at, or slightly under 9%.  Although there are also many that felt much sicker much earlier.  As I was so tired, and tired of being sick, tired, and so badly swollen that my legs almost constantly 'weeped', I started at 20%

You Mother is and I hate to say it, just another suffering kidney failure.   Tho we are each individual we follow a lot of the same patterns.  Follow Dr orders, watch her diet and try to avoid excess salts, and fluids.  She should do as well as can be expected, according to her attitude, strength, she can yet enjoy much.

I am glad to hear she will be able to do PD.  I feel that is far gentler to the body than the shock of hemo.   Those people doing hemo are special.  The trauma that they endure each time is difficult to imagine.  I fear that one day that may be me.  I seriously do not know how well I will do.  Often we fear the unknown.  But trust me, PD is not difficiult.  Just be careful to avoid infection.  That is essential.  Clean hands, always.

Take Care,

Charlie B53

[myporkchop]

Charlie B53:

You are amazing with your advice, thank you very much. I never thought of compression stockings etc, I will give that a go with her.
Urine, yes she is still producing, but not as much I don't think. She has water pills already as at one stage she was getting fluid on the lungs with her COPD, so they helped a lot.
Wow, PD can really be done anywhere that is really cool hearing you have done this in your truck.
I feel so sorry for all of you who are suffering kidney failure. It is just not fair. I am so pleased I found this cite to ask questions and talk to actual people who are experiencing the same thing. I could not believe when I asked about this type of support at the clinic they said 'they are the support', but in our minds they are not what we actually want, we want to talk to people going through it and hear of their experiences.
We will be very careful with hygiene etc, I am sure my Mum and my family will have a lot to learn over the next few months.
Thanks again for your advice and for sharing with me

Regards

[Fabkiwi06]

I think the initial shock is worse than the actual dialysis. When they came in to the ER to tell me my kidneys were failing, I laughed at them and told them they were wrong. It wasn't until they started prepping me for the ICU that it kinda sunk in.

I've been on both Hemo and PD, and my life is infinitely easier now that I'm on PD. The first month is a lot - with getting everything in place and the healing - but it does fall in to a mundane routine. And, I've also done my exchanges in a side room in the O'Hare airport during a layover.

There's a lot to keep track of, but it's all very doable. Good luck to mum!

[myporkchop]

Oh thank you Fabkiwi06 for your reply.
All of you provide us with some reassurance that the doctor's couldn't. Despite the side effects of ERF my Mum said she doesn't believe anything is wrong with her, and that the doctor's have got it all wrong. But every time we go and see them we leave feeling miserable and upset. Thanks again

[kickingandscreaming]

I remember, back in 2009, when I was first told that my kidneys were failing.  I had an Iranian nephrol. at the time and he was very catastrophic.  Every time I left his office I felt like I had to quickly reserve a cemetery plot and that death was imminent.  Then later with my current nephrol.  when she told me I was at 10% I figured that was the end and ran home and started calling hospice places.   There's something about calling something "failure" that feels like one foot in the grave.  I had no symptoms at the time and didn't get any (and they weren't bad even then) until I hit 6% (late 2015) when pneumonia crashed what was left of them.  It's a very doom and gloom medical specialty.

[Charlie B53]

Since I am a 'Guy', and a Veteran, I have always figured that I am merely existing at the mercy of the Lord, that this bag of meat could drop any second.  That it really wouldn't make much difference what I did, so it never seriously bothered me long ago when I was first referred to the Neph and given the news that my kidney function was declining.

Oh well, wasn't a lot I could do about it but enjoy what time I had left.   Mom was on PD her last couple of years and did very well.  Did just fine until her heart finally gave out.  She knew her time was getting short but was not willing to have by-pss surgery.  In her late 70's she thought she had lived long enough and wasn't going to work at trying to hang around.

So when it came time to consider PD it was a no brainer for me.   Do it.  It is not tough to do, nor to stay clean and prevent infections.

Three year so far.  Hope I get a lot more.  Already had my triple by-pass in 06.  Long ago enough that two of them are totally ocluded, but the corollaries have grown out and around the blockages so I figure God ain't done with me yet.

[Michael Murphy]

Dialysis is not the end it is a pain in the tucus but in the center I  go to there is a large percentage of elderly patients.  Most in good shape for their age.  80's and some 90's are not uncommon.  Most have medical conditions ranging fro cardiac problems to diabetes.  All come three days to the center for treatment every week.  The swelling and breathing problem you mentioned your mother having could also be a symptom of ESRD caused by retaining fluid that the kidneys can't handle any more.  If that is the case dialysis would make her feel better and remove the extra fluid relieving the extra strain the fluid is putting on her heart.  My advise is to have go to dialysis and see how she does.  Remember dialysis is voluntary and any of us can stop going at any time. 

[myporkchop]

Thanks Michael Murphy, Charlie B53 and kickingandscreaming
You made me laugh kickingandscreaming about leaving your neph appointments and thinking you had to quickly reserve a cemetery plot. My Mum has felt the same way. We leave the appointments talking about where she wants to be buried or if she wants to be cremated. If she wants to stay home or go to a hospice. It is never very nice. We cry all the way home (well I do). Then I hear stories from all of you and it is very reassuring.

It will be great Michael Murphy if her swelling and breathing difficulties improve. I have read all of these comments to my Mum and she is determined now to give dialysis a go. We really didn't think it could even be an option for her given her other health problems, but sounds like s he can give it a go.

Sounds like PD will be the way thankyou. No Gid isn't done with you yet Charlie B53

I have been waiting to give a feedback form back to the dialysis education centre after we had my Mum's initial session. I thought it was terrible, but maybe it was my emotions getting the better of me? My Mum talked about being worried her skin colour would change, the nurse said "oh it already has, you are yellow I can see it". We said that we couldn't tell and the nurse replied "that is because you see her all the time, but she is definitely yellow". She then talked about my Mum's blood being toxic and poisonous?? She said "if I had your blood I would be very very sick, that's how toxic your blood is". I was thinking to myself "what the heck is she trying to do??". My Mum cried the whole way home and needed lots of reassurances from us. I was so pissed off at this women for upsetting her like that. I thought I better not do my evaluation form yet as she may be seeing a lot of her if she gets the PD as she is part of teaching how to use it and we may be seeing a lot of her.

[kickingandscreaming]

I thought I better not do my evaluation form yet as she may be seeing a lot of her if she gets the PD as she is part of teaching how to use it and we may be seeing a lot of her.

Do you have any choice of clinics near you? If your mom does home dialysis she will be having a relationship with the home dialysis staff.  Best to have someone not quite so negative.  If possible.

[myporkchop]

Hi kickingandscreaming, no we don't have a choice, she is it. She is the home dialysis clinical nurse specialist, so if Mum is ok to have PD then she is the teacher.
That was my first impression of her, but hopefully she is a lot nicer or we will get to like her the more we get to know her. Hope so

[kickingandscreaming]

Will you be involved in your mom's training and therapy?  I'm "alone in the world" and I'm managing, but it would be so  much nicer if I had an advocate besides myself.  I know you're actively involved now.  Can that continue until your mom gets her bearings?