So sad

[Pippy]

My father was diagnosed with ESRD about six years ago and at the time had a creatinine of 10.  Wish I was exaggerating.  He had severe pleural effusion and was literally suffocating.  After getting multiple blood transfusions - 13 units the first night in the hospital - and getting temporary access in his neck, he started hemodialysis.  He eventually got a fistula and that worked for about a year.  It clotted off and he stopped dialysis.  If I recall, his personal best creatinine was in the five range.  He was eventually supposed to go back on dialysis but after getting severe lymphedema in his fistula arm, he had surgery and had an embulus to the brain during which he experience sudden death.  He recovered after temporary blindness and memory loss.  He still didn't go back on dialysis.  Over time, his creatinine has hovered averaging around 7-8 and was 8.6 at his last appointment.  He had it run again today and I suspect it has crept even higher.  His last creatinine test was last week.  He has experienced every horrific "side effect" of ESRD I can think of . . . . several bouts of c.diff., unbearable skin itching and what literally appears to be lifeless limbs (purple and swollen in places and gray and atrophied in others), constant infections, stomach pain, back pain, weight loss, loss of appetite, vomiting, restless legs, drowsiness, confusion, sleeplessness.  Yesterday, he told me he didn't believe in suicide but he was starting to wonder how he could live like this.  He has waffled for so long about going back on dialysis - he despised it, of course - that I always thought he'd feel forced at the end but he would eventually do it.  Well, the last three weeks have been terrible.  His potassium has jumped into the 6's and his creatinine has been going back and forth from high 8 to low 9's.  His hemoglobin today was 9.  He's been feeling especially bad the last three days.  We live states away from each other but usually talk about an hour a day.  Today, when I tried to talk to him, he didn't say anything - he's usually very talkative and never complains.  I kept trying to get him to talk but he seemed almost drugged.  I asked him if he took anything to help him rest and he said, "No, but I probably should have."  He said he had a good feeling that he would sleep well tonight.  I felt so sick about how he sounded that I am worried this is the end.  But I keep thinking that maybe this is a "bad time" and that he'll bounce back.  I know that sounds ridiculous but he HAS been really sick before and seems to have "good days and bad days" almost like any less severe illness.  So, now what I'm trying to do - because I'm in NY and he's half a country away - is figure out if his symptoms and his behavior are indicative of "last days" of a patient who has chosen no dialysis.  Over four years without dialysis . . . . I guess he may not live forever . . . . but it's the worst feeling in the world to not know when and how and to be so far from him.  He's overcome so much and he's only in his 60s.  If anyone can help me to understand how life starts to fade away in ESRD, it would help me tremendously.  I know some of you may have lost dear people to ESRD.  I could use some of your wisdom.  We can predict the future.  I just want insight so that I can try to get to him and spend a little more time with him if this looks like the end.  Not to say that we haven't had wonderful times in the past . . . I just don't ever want it to be the LAST time.  I do apologize if this is too "down" for this forum.  I've been searching and searching for a place to gain something from someone else's experience.  I've never known anyone who's gone through what my dad is going through.  So, if you feel like sharing, please do.  Thank you.

[willowtreewren]

Oh, Pippy,

I'm so sorry. Nothing that anyone posts on IHD is ever too down. there is no other place that I know of to posts things like what you are going through without censure.

Others here may have more experience than I do, but it does sound as though your father's lack of dialysis is causing some severe and possibly irreversible problems.

 

I wish I could do something. Please post to let us know what is going on with him.

Aleta

[lmunchkin]

Pippy, Im tearing up reading your post.  All I can say is I will be praying      for you and your father! It is never easy, with this disease!

lmunchkin   

[galvo]

G'day, Pippy, and  .  It's a bad situation your father is in. I can't understand why he didn't go back on dialysis. He's obviously having regular blood tests; so he's under some form of medical care. Can you talk to the doc he goes to? Does a relative or a carer help him ? Can you talk to her/him? It has to be so frustrating for you, trying to give long distance care.

I suppose that there is the possibility that he has simply refused dialysis. If so, I guess his decision has to be respected. Four years without dialysis? Wow!

I feel for you.

[RichardMEL]

Hi Pippy. Welcome to IHD.

I understand you are sad. I think we all would be being in your situation. Feeling helpless to do anything and seeing someone you love "hanging on" like this - and also from a distance. I think it's tough. It's not "too down" for the forum in my view. This is part of life (or should that be "life" in quotes given the quality is obviously not really therer for your father right now). Anyway you and your family are not the only ones in this boat.

I think that this is a clear choice by your father to not go back to dialysis - for whatever reason. Some people don't thin it's worth it, or that the quality of life/restrictions don't balance out enough, or whatever. At the end of the day these are decisions he is making for his life. At least he's tried dialysis.

As sad as this is for you, and worrying, I guess he's under care and being monitored on a regular basis. That he's struggled on this long is actually quite amazing I think. At least you know what the likely prognosis is.

Hang in there, support your dad as best you can. I guess that's all you can really do.

[okarol]

Hi Pippy, first - a BIG HUG for you 

Did I read correctly? He had been on dialysis for over a year - then stopped and it's been 4 years?

Wow thats amazing.

All I can say is, he must really feel like crap. If he were my dad I might ask him to try it, get a chest catheter, get a couple weeks or so of hemo and see if he gets some relief. However, it sounds like he really didn't expect to live this long without dialysis, jeez he really has seen it all.

I am so sorry, I don't know what to say. Perhaps a visit might be good for your peace of mind, especially if he cannot talk much, you might feel better assessing the situation in person. Are there any other family members nearby?

Welcome and please keep in touch.

[rsudock]

 

[looneytunes]

Hi Pippy.  Glad you joined us but so sorry for the troubles in your family.      

[noahvale]

*

[MooseMom]

Oh noah, that is some story!  I'm glad you posted your saga because that gives us all a better understanding of what Pippy's dad may be going through.

Like noah, I also would like to suggest looking into palliative or hospice care.  Pippy, your father may have his own reasons for not wanting dialysis, but at least his suffering could be addressed.  I sometimes think that we spend too much time trying to "cure" where our efforts may be better spent, in many cases, in relieving suffering.

[natnnnat]

Your story is very moving Noah, and it is rare and helpful to hear your experiences.  One day I may need to refer back to this,  If G's kidney-time ends and I need ways to navigate. I am very glad you posted it.

[Rerun]

Hi Pippy, I'm amazed your father has lived so long with such low renal function.  He is one tough cookie.  But, the fact is you cannot live with "no" kidney function.  To not choose dialysis is not suicide.  It is your choice to not have life support.  That's all it is.  It is his choice.  But, I would get on the next plane and see him.  Can they even put another catheter in his chest for emergency dialysis?  I know they cannot with me. 

Please keep us posted and thank you for joining us to find help.

Rerun, Moderator      

[lmunchkin]

Noah, very touching about your trials!  It reminds me that ALL are going through their HELL!  Thanks for that Noah, now I see you in a different light!  It helps us all to see how others are and what they are going through.

Pippy, to not dialysize and be on life support is not suicide!  Like, MM & RERUN suggested, this is his choice and you need to support him in his decision.  Please, if this is what he has told you is his wish, go to him sooner rather than later!  Im sure he would love to have you there by his side!  Who knows, it may repair what fractured relationship you may have!  He may have something that he wants to get off his heart with you before he leaves!  Just saying!

You & Dad are in my thoughts & prayers,

lmunchkin     

[lmunchkin]

My apology's Pippy, I got your post and anothers mixed up in regards to not getting along with parent.  SORRY ABOUT THAT?

lmunchkin     

p.s. I do get confused sometimes at my age!

[Dannyboy]

Pippy,
My heart goes out to you.  I am new here, but already I have seen that there are many wonderful, caring folks 'round here that are ready to listen (and help as they are able).
---Dan
PS to Noah:  Thank you for sharing some of your experiences, it was very moving to read about them.  -D

[billybags]

                  Pippy, I think what Noah posted brings it home to all of us what a shitt*y disease this is. Your father sounds like a very strong person to be going through all this and yes my be he is tired of it all. Please support him in any way you can, it is not easy. Please come back and post let us know how you are going on. Our prayers are with you.

[peleroja]

Welcome to the group, Pippy.  Nothing written on these posts is ever too down for us as we have all been through something similar or close.  Glad you found us!

[Seamus]

Pippy--
A heartbreaking story, and my thoughts and prayers go out to your father and you.  It is a forecast and warning for those of us that contemplate ceasing hemo, and don't quite want to shuffle off this mortal coil.  Wish there were more options for your dad and me.

[Pippy]

Thank you so much for all your wonderful messages.  I tried to figure out how to reply individually to some of your posts but I didn't get it!  In answer to some of your questions . . . yes, you read that right.  My dad has been off dialysis for four years with a creatinine averaging over 8.  Currently, it's 8.9.  Yes, he's still alive and seems to be going downhill very slowly.  He's miserable and says as much.  Yes, they can put another catheter in his chest to do emergency dialysis and he's said he's considering it.  I'm concerned he's going to "consider" it for so long that he misses his chance.  But I agree completely with those of you who said it is completely his decision and I support him 100%.  To be honest, I don't know if I would be strong enough to live with such a disease or with the treatment thereof so I respect him and his decisions without reservation.  Still, I miss the "old" dad so much and cannot envision a day when he won't be here anymore.  I know he has great fear of how this will play out but an even greater fear of his quality of life if and when he returns to multiple days of dialysis. 

Noah, I don't know what to say.  Thank you for sharing your story.  I want to print it and send it to my dad as I do believe it will be of even more benefit to him than to me.  You have given me a perspective that I desperately needed.  I know without a doubt that Dad is NOT comfortable with his decision - actually, his lack of a decision is what is so unsettling to him.  Because he has had so many complications during procedures and dialysis, he has a fear that is apparently insurmountable to him.  It's so sad to me that fear is what may kill him because I really believe he wants to live.  But I don't push one way or another.  I just listen and tell him as gently as I can that I will be very sad when he's no longer here but that don't believe one person has any right to tell another how to live or die.  And ultimately, I know of no more profound gift that I can give him despite the fact that I want to handcuff him to the dialysis machine if that will keep him here! 

He is on Xanax and Hydrocodone for anxiety and pain.  He's a recovering alcoholic so he despises taking either of these and avoids them to such a huge extent that he rarely has any comfort that I can see.  He feels like all his aches and pains are caused by other medications and not on ESRD.  I can only imagine how he probably chooses to forego meds in an effort to reduce side effects.  Again, though, I am not going to question his treatment choices.  I feel like I have to respect him . . . after all, he's my dad.

I did use one suggestion that okarol made . . . I told him since he didn't feel comfortable fully committing to the idea of dialysis, maybe he could try a chest cath and do a trial of dialysis, see if he feels any better and only commit long term if he then feels better and feels like quality of life isn't as compromised as he expected.  I think he thought about it . . . although I don't know how seriously.  Thank you for that, Okarol.  At least it gave us an opportunity to breach the subject without my sounding as though I was trying to control him.  You asked if there were family members nearby.  Well, my brother, but he's rather unreliable.  He's seen him roughly five times in the last year and lives within ten minutes of my father.  His immediately family lives within a few hours of my dad and they visit as much as they can.  They love him dearly and I know they do what they can.  Dad is fiercely independent so no matter how close or far they live, he would only allow so much hovering.

Galvo, you asked if I could talk to his doctor?  No, I can't.  I have tried in person.  I have contacted him by telephone.  I've even emailed his office.  He's the most uncommunicative person I've ever met!  I think he's essentially given up on my dad.  He's an enforcer, of sorts, and I believe when he realized he couldn't force Dad to be get back on dialysis, he wrote him off.  I am quite outspoken and perhaps I've offended the doctor.  Unfortunately, for whatever reason, he doesn't care to have a conversation with anyone in our family.  And it may very well be that my dad doesn't want him to.

I can't tell you how much I appreciative all your words of wisdom, experience, advice and support.  I like to think that whether my dad knows it or not, you're in his corner.  I'll keep you updated as much as I can.  God bless you all.  I wish you peace and better health and many blessings.

Pippy

[MooseMom]

Pippy, the suggestion that Okarol made about your dad maybe trying dialysis with a chest catheter outlines an option that you and he might really want to consider.

We all know that catheters are the least-favored access.  They clog more easily, they don't last as long and they are more prone to infection.  BUT, there are no needles involved and they are rather straightforward, plus they can be inserted and used almost immediately.  My mother had to go on dialysis after her kidney function was accidentally distroyed following abdominal surgery, so as it was an emergency, they inserted a catheter.  She ended up using it for 18 months, faaaaar longer than anticipated and faaaaar longer than optimal (long story as to why that happened).  Anyway, my point is that it IS possible to dialyze with a cath for a relatively extended period of time, so maybe your dad could use that sort of access while he gathers more information and considers his options.  These are important decisions he has to make, and everyone would feel better about his ultimate decision if they knew that mind-fogging toxins weren't clouding the issue.

Here is a post from the Home Dialysis Central website that explains more about how untreated ESRD ends life.  This may give you a modicum of comfort.

http://forums.homedialysis.org/showthread.php/2885-Dialysis-withdrawal?p=21182#post21182

Yes, we are in your dad's corner.  We're in yours, too.

[noahvale]

*

[billybags]

Pippy, thanks for your update and I am glad you are getting a little comfort from our site, yes there are a lot of caring people on here and we all pray that your dad makes his choices, good or bad. Take care of your self and keep us posted. It is not nice to see the person we love going down hill. You sound a very caring person, just be there for him.

[Bruno]

Pippy, you are a very brave person and my heart walks with you.

[Bajanne]

Pippy, I have been reading this thread, and found it difficult to write.  I lost my father to ESRD in circumstances that were quite different, but just as painful to me.  You see, my father was very healthy.  His only problem was kidney failure, but because he was 88 years old, in my home country, they didn't think it was any point giving him dialysis.  So we had to watch him pass away from us.  It even brought our family doctor to tears.
I am amazed  at how long your dad has been without dialysis.  I think others like Okarol have given you some excellent advice.
Here is a hug from me , and another from your IHD family   Please keep us updated.  We are taking this very personally.



Bajanne, Moderator

[Pippy]

Thank you again for so many warm and helpful responses.  I wanted to update you all on my dad's journey.  About two weeks ago, after hitting a high of 11.1 creatinine, he made the choice to return to the dialysis chair.  Within two days, he had a teseo and was receiving dialysis.  During his third dialysis treatment, he went into respiratory arrest and was taken to the hospital and put on a ventilator.  He continued to have dialysis inpatient and his creatinine dropped to 2.2 at its lowest.  He began to breathe again on his own and came off the ventilator.  The night of the second inpatient dialysis he was in respiratory distress again and had to be put on a noninvasive vent.  It was heartbreaking to watch him essentially begin to suffocate.  He was terrified.  The following day, doctors decided to do a heart cath to determine if his heart was blocked - thereby causing a continued buildup of fluid (and thus creatinine as his creatinine was doubling day by day suddenly).  The heart cath showed at minimum 90% blockage in all four chambers of the heart.  Dad wanted to try a quadruple bypass when he was told that it was his only chance.  Without it, he would be gone from one of those breathing episodes within days most likely.  The night I spent after his heart cath he uncharacteristically asked me if I wanted to hold him.  I put my head on his shoulder and he patted my back and then stroked my hair while telling me it would be ok.  I felt like he was letting go.  He was very calm about the open heart surgery - also uncharacteristic of him - and came through the surgery for the most part successfully after seven and a half hours.  Only a triple bypass could be accomplished because of calcium buildup.  Within two hours of the surgery in the ICU recovery, my father died.  He did not suffocate wide eyed and pleading for help.  He was at peace, sleeping and his blood pressure could simply not be stabalized.  At 66 years young and after six years of ESRD, he is gone.  I know he is not suffering any longer but I miss him desperately.  I thank you all beyond measure for allowing me to "cry" through my posts and for comforting me.  I wish you all blessings of health, comfort and much love.  You were brief in my world but such a blessing to me.  God bless you.