Worried about my dad

[system]

HI,
I was referred to this site by Dori who is a frequent poster on a Facebook dialysis group. I am not a dialysis patient, but my dad will likely need to start dialysis in a few months. I’m worried about him and was hoping that this group could help give me some guidance/help/support.

He has ESRD, his last bloodwork came back with a GFR of 13. He is 77 and has had diabetes for many years, and it has slowly but surely taken a toll on his kidneys. He also has had some heart trouble (in 1982 he had a heart attack, but for the most part was doing fine until about a year ago when he started having some problems with his heart rate and also arythmias). A few months ago, his cardiologist wanted to do an angioplasty but since the dye that they shoot thru the balloon is bad for kidney patients, they decided on EECP therapy instead. The therapy is every day for about 45 minutes, for about 8 weeks… If you aren’t familiar w/this, it is a cuff therapy they do on the legs, that is supposed to help w/circulation and also to help unblock any blockages that may have formed. He started this therapy in early November. At the same time he started this therapy, during a routine nephrology visit, when they did bloodwork, they found that his potassium levels were sky high. So, he was admitted into the hospital. They flushed his system out with some sort of IV solution,and got his potassium levels stabalized, but now besides being on a diabetic diet, he’s also on a low-potassium diet, and has to take this suspension liquid 2-3 times a week. The suspension solution is supposed to flush the potassium out of his body by making him go to the bathroom. All of this has left him feeling very weak and tired. In mid-December, they decided to put a pacemaker in, because his heart rate was only in the 40’s and we were hoping that after the pacemaker surgery he would have more energy, and get to feeling better, and also improve his kindey function slightly. Unfortunately, he still hasn’t been feeling that great, and is getting discouraged.

He hasn’t accepted that he will probably need to start dialysis soon. He is fighting it and even though I think he won’t admit it, I think he’s scared, and thinks that his quality of life will suffer greatly. He looks at it like life support, and he does not believe in life support.

Anyway, I guess my question is, how long can he survive without dialysis??? And, when do most people start on dialysis? and, do you think someone like my father (with multiple health conditions) will have a quality of life on Dialysis even with his other medical issues? Do any of you know other patients who are diabetic and have heart problems and that are doing ok, or better than okay on Dialysis? Will he feel better?? Right now, it just seems like he has good days and bad days…but mostly bad days I want him to have more good days, and I’m starting to think the only way that will happen is if he starts dialysis. But, I think what scares him is that he’ll feel even weaker when he starts dialysis, especially the days that he will have to do the treatment. I’m trying to convince him that he probably won’t feel any worse than he feels now, but that he’ll have days that he will feel better.

I know dialysis won’t give you GREAT kidney function, but it will improve it, right? His GFR might get back up to 16 or 18? or am I being too hopeful?

Any help/suggestions/advice you can give would be great…I have had non-stop anxiety/worry for the last few weeks, and I keep waking up at night, having dreams that he will die soon. He is my hero, and I can’t even imagine my life without him.

I know the decision is his to make, but I want to help encourage him, to help him be strong and take this next step. To give him hope. Am I being unrealistic that he will feel better? Any advice/suggestions/hope you can give me would be greatly appreciated. Thank you in advance!!

[John_Agar]

Dear ‘Worried about my Dad’

I was very moved to read your post … and it brings up one of the most difficult and vexing problems any of us face when those we love are hampered and dragged down by illness, regardless of whether this is renal disease or any other chronic, debilitating condition … the love we have for the family member (in this case, your father) and our wish to see them well and strong again, opposed to the ravages of the disease and the press of time.

It is such a common problem and I cannot presume to offer an answer that will make it easy for you … but I will try to help … and I hope in my attempt, I dont make things more difficult.

Several things need to be said about your dad and his illness. He is 77 and, as you have outlined, he has struggled for many years with diabetes, has had a past heart attack, is now hampered by arrhythmias, is undergoing EECP (Enhanced External Counterpulsation) to treat his angina (as, correctly, the use of contrast for an angiogram +/- an angioplasty would certainly wipe any remaining native renal function), has a pacemaker, is having problems with potassium and now has advanced chronic kidney disease with an eGFR of 13. All these suggest that his age and his disease have taken a terrible, terrible toll on him. Though he is77 in chronological time, his disease(s) will have added a number of weighted years and, as much as you love him, it really means he is (physiologically) now much older, in many ways, than his 77 life-years suggest.

He is, in your own words, struggling … both physically and mentally. It is natural to want to encourage him, to help him to be strong, to give him hope and help him on a path to feeling better – all of us who feel strongly for a parent – as you clearly do – would wish no less.

There seems little doubt that he is very close to the point where most would recommend starting dialysis … and here I am assuming his medications have all been adjusted to ensure there is nothing that might be aggravting or depressing his eGFR left on his ‘list’. Here, in Australia, we commonly commence dialysis somewhere around an eGFR of 10-12 (depending on symptoms and comorbidities) though some may be prepared to allow it to drift a little lower. Whatever the case, he is perilously close to that point.

Unfortunately, conventional dialysis does not hugely improve the effective eGFR. The best one can hope for from conventional dialysis is, maybe, an equivalent to a mean eGFR of 15-16 or so. The more intensive forms of dialysis at home will certainly far exceed this level but my sense is that he may struggle to manage home dialysis (in particular haemodialysis) where more intensive dialysis can be offered. In addition, I am not sure whether the other useful more intensive option of short daily dialysis in a nearby centre is available to you. Further, and importantly, I do not know whether he would be a candidate for peritoneal dialysis – only your team can advise on this – but if any dialysis is contemplated and especially is assisted dialysis at home is an option, peritoneal dialysis is certainly an option to discuss with your team.

Your dad has already put in many long hard yards. You say that he has strong feelings against the concept of ‘life support’ and, as you have also said, he sees dialysis very much in this light – as life-support. Many older patients do. It is neither unusual nor, dare I say it, inappropriate for older patients to strongly question life extension (and I would describe dialysis in this way rather than as life-support), and do not want to spend their last remaining days beholden to equipment and medical technology.

Older patients often see it differently to their families and, as you say, in the end it has to be his decision. All you (and we, as the medical team) can ensure is that all options (including the very real option of careful, compassionate, non-interventional conservative medical management) have been put to them. This, then empowers him – and this is so important to do – to make his own decision. In the end, however, we must allow (painful as this can be) our loved one to take his/her own decision if capable of doing so. Clearly, he is, and as a result, the final choice is and must be his.

Many older patients who undertake dialysis – at least in my own experience – do so half-heartedly and for the wrong reasons. They enter dialysis, not because they personally wish to (and indeed many really and truly do not) but to please their family. The fear they may disappoint those who wish so strongly for them to live by signaling that they are ready to face death, whenever it may come.

Patients pushed into dialysis by well-meaning family rarely do well. The desire to dialyse must come from within him and not from without. Unless this is the case, he will not thrive, you will be disappointed both by the technique and in the team – and worst of all (and this is true in some cases) you may become disappointed in him for ‘not trying hard enough’. I know that seems a terribly harsh thing to say but, sadly, it is often true.

Dialysis will not improve his kidney function – that is a misunderstanding held by many – but rather it replaces some of the kidney function he has lost by artificially removing waste and fluid that his own kidneys can no longer and will no more remove. Dialysis (assuming it is at a centre) will also take him away from his home every other day for many hours at a time, and again in the elderly, this is seen as a time they would much prefer to spend at home surrounded by those they love and the surroundings with which they are familiar. Peritoneal dialysis may be a way around this issue and again, if he is appropriate for this treatment, it may be the best dialytic option to explore. But, with his heart as it is, even peritoneal dialysis may add a range of problems to his already long list and, likewise, I fear haemodialysis may add as many difficulties as it may solve.

To your question ‘how long can he survive without dialysis?’ – that is beyond predictability. eGFR falls with age and, as we near our ninth decade, our mean eGFR is commonly at best 45 to 50 in the absence of any major or significant kidney disease. Many patients can live for years, comfortable and well, with no outward sign of clinical illness, with an eGFR less than 20 and with surprisingly little and often no progressive decline nor need for dialysis support.

Yes, 13 is pushing it, I agree, and with his heart troubles, his diabetes and his age, all are combining against him. I fear that dialysis will not offer your dad the improvements you so fervently wish for him. True, stranger things have happened, but on balance the dialysis road looks rocky, at best.

Here, in Australia, though we would certainly offer and provide dialysis as best as we could do for anyone – irrespective of chronological age --if it were sought, we would probably be saying quite strongly to your dad that the dialysis road will be tough and rough and has a strong chance of making things even worse for him instead of better. This is not to say we (or I) are entirely nihilistic – perhaps just realistic.

What I have tried to say in all of this is that none of us live forever. The best thing we can do for our elders is listen to them, gauge their views, hear their voice and if it is to ‘try everything’, okay – then go for it but, if there is reluctance, uncertainty or resistance against intervention, it is then kindest and wisest not to fight against their non-intervention decision but to be proud of the courage they have shown in electing that course.

As you say, he is your hero and, as such, whatever he decides … and it must be his decision… your hero he will always remain.

I am not sure whether I will have helped and comforted or upset and hindered you by what I have said – I can only hope it is the former.

John Agar

[system]

HI Dr. Agar,
thank you for your thoughtful, sincere and honest reply. I won’t lie that as I read it, I teared up, but you weren’t telling me anything that I didn’t already know or fear. You’re right, it’s the circle of life, and one way or another we will all succumb to some sort of illness and eventually die. The good thing is that he has lived an incredible life.

My mom and dad came to this country in 1979. My dad was 47 at the time, and the owner/chef of a restaurant in Italy. They immigrated to America when an opportuntity came up for him to help open a restaurant here with another fellow Italian. I am the oldest of 3 kids, and at the time we immigrated, I was 7 my brother was 6 and my sister was 2. I’m 37 now. They didn’t know a soul here, they didn’t know the language, still they made this incredible journey all in search of the American Dream. Anyway, the plan was for us to stay for a few years, and then go back to Italy. As we got older, and started making roots here, it became more difficult for us to leave, an my parents decided to stay, even though all of their family and friends were back home. They saw that we (the kids) would have better opportunities here for school/work so they basically stayed so that we could have a better future. In the meantime, my dad had a falling out with the man that he opened the restaurant with, and ended up leaving that venture. We opened our own little family restaurant in 1990. It was a small “mom and pop” shop, but it soon because a favorite amongst the community because it was authentic, Italian food, run by an Italian family. It was a total family affair, my mom and dad did all the cooking, me and my sister were waitresses, busgirls, dishwashers, everything…we had a few family friends help us too, but it was mostly family.(Imagine the movie My big Fat Greek wedding–that is the story of my life! ) Anyway, that restaurant was our life, until we closed about 3 years ago. Making the decision to close was very hard on my dad, as having a restaurant was all he’s ever known… but he really couldn’t keep up w/the 18 hour days anymore. Besides, my mom wanted to spend more time w/her grandkids…

The other thing I want to get across is that we are a very close knit family. Because of the crazy hours my parents have had for most of their lives at the restaurant, neither one of them had much time to develop any really close friendships or even hobbies. Our friends were the regulars that came to eat all of the time, but unfortunately many of those friendships fizzled after the restaurant closed. Anyway, being that we are Italian, we’re very close, and I especially am very involved w/my parent’s lives. I want to try to help as much as possible, and that’s why I’m reaching out to you.

The last few days he seems to be feeling a little better. His cardiologist gave him the okay to start exercising again so he started doing 30 minutes a day on Monday, and he seems to have more energy. He said that he doesn’t feel as tired and as run down as before he had his pacemaker put in. I know he has about 8 sessions left of the EECP therapy, and then they are going to do another stress-test to see how his heart is functioning. After that, I’d really like to talk to his cardiologist, his nephrologist, and his normal primary doctor to see what they think…if they think he will tolerate dialysis well and what option might be best for him.

I watched your webcast about individualized dialysis and how you are a firm believer that is the best way to handle dialysis for each patient, but unfortunately here in the US, it does seem much more commercial and for-profit. It’s awful actually, it seems like everyone is out to line their pockets vs. actually helping the patient. It’s all a business.

Anyway, what I need to do, while my dad is still feeling relatively okay is to try to talk to him honestly and openly about doing dialysis. This will be a very difficult conversation as I fear we will both end up crying and I hate to see my dad cry! But, even though he is one strong willed, stubborn Italian, I always seem to have his ear. But if he starts dialysis, I want him to do it willingly, to continue fighting, because like you said if he is forced into it, it will most definately not work…

Thank you again for your kind remarks.