Dyalisis and Alcohol

[Jmccool]

Can you still drink beer in moderation of course once you are on dyalisis?

[Hidden]

Define moderation, but my answer is no for multiple reasons. Kidneys will have to work harder. Best thing to do is ask the nephrologyt.

[Jmccool in reply to Hidden]

My husband drinks about 3 or 4 beers on the weekend some not at all. This was a question he had I say no but I will let the doctor tell him I guess. His liver count is perfect but it did show a fatty liver when they did an ultrasound of his kidneys full of cysts. But I know fatty livers can be caused by food as well.

[Hidden in reply to Jmccool]

One of the articles you both should read is attached. He has to understand that he has to make significant changes to his lifestyle. These include, meal plan, exercise, staying hydrated with water, (the water used to make beer doesn't count), medications, stop smoking and drinking). He can drink beer, in moderation, but he must be willing to accept the consequences of his actions, and those are permanent as is CKD and then ESRD.

kidney.org/news/kidneyCare/...

[Jmccool in reply to Hidden]

I agree with you 100% and he is in ESRD his GFR fell from 12 to 11 from March to May of this year. I personally do not drink and I’m so ready to get to the renal dietician so I can start figuring out foods for him. He is a big steak and seafood guy which I know will stop. He has never smoked and only meds he’s on is for blood pressure. He also has RA which he takes shots for and they are the only thing that helps him with pain. The nephrologist was not concerned about the shots because it doesn’t effect his kidneys. It’s a battle I fight with him about is food and beer on weekends. He’s not a medical person he hates anything medical. Which I’ve talked until I’m blue about doing what’s right or dieing there are no other options here at this point. I really appreciate the time you take to reply it means a lot!

[Hidden in reply to Jmccool]

Have you attended a Kidney Smart class? He will learn so much about ESRD. If you need to shock him a bit to get his full attention do an online search for Palliative Care. If he refuses to make the necessary changes he has an alternative. Also, does he have an Advance Directive and a Living Will for Health Care? Those will also be best to have prepared in advance, Best of luck.

[Jmccool in reply to Hidden]

We are attending a 3 hour class this Friday and will be doing more after the initial one. We have not done the living will or am Advance Directive but will be doing that as well in the next week. 😔

[Hidden in reply to Jmccool]

The 3-hour class is about dialysis. If that covers his diet and lifestyle changes, great. If not there is another free 90-minute Kidney Smart class in your area. You'll find how to register for it at davita.com. This may not be comfortable to deal with but he has to come to grips with his new reality. I know, I've been there and some days I find myself revisiting the "good old days.", but only in my mind.

[lowraind]

I am sorry to say, but I assume that he is a big boy and needs to grow up! If he wants to live, he is the one who should be doing all the work to educate himself. I know that as wives, we tend to do it for them, but it does them no good if they do not have the will.

[Jmccool in reply to lowraind]

Yes he’s 52 he’s a big boy lol. He’s slowly adapting to what needs to be done every time we have another appointment he accepts it more. At first he wanted to just die and give up. And he still makes those comments we argue a lot about this but at the end of the day at night he tells me he knows what he had to do. It’s by far very hard to go through.

[Hidden in reply to Jmccool]

All the more reason to attend the Kidney Smart class. More than anything it will show him that a good life can happen with CKD/ESRD. It's just a different one than the one he has been living. It will empower him to learn all he can about the changes he must make and why he must make them. One thing I have gotten out of it is a better appreciation of life and what it means to make it last as long as I can.

[Jayhawker in reply to Jmccool]

I agree completely with Me Kidney🐶

I am, in a strange way, somewhat fortunate. My father had Chronic Kidney Disease. In fact I never knew him when he didn't have CKD.

He worked full time until he had to go on in-home HD dialysis. He lived about 24 years longer than his nephrologists expected. I think this was in great part because he did exactly what his doctors said and he had a great attitude. In fact, he had quite a sense of humor.

My mother did a masterful job of managing the dietary restrictions he had to follow. They were really a great team even through the in-home HD dialysis. (And, yes, I was one of his in-home HD dialysis care partners. Consequently, I REALLY understand exactly what renal failure looks like.)

I always say that I learned how to live well with a serious chronic medical condion from my dad. Just like my dad, I have good days and bad days. Also like dad I have found it incredibly helpful to learn as much as possible about CKD and how it is effecting me specifically. And just like dad, I've had to make modifications in my life (dietary, daily routines) to manage my CKD as effectively as possible.

But this is 100% doable, especially if I work with my medical team. I live alone and am the last person living in my family. I rely on several close friends for moral support as well as physical help when necessary.

I definitely didn't want CKD. But this is a medical condition I know. It's a condition I can, and will, live with. My dad was an amazing role model. So, as I said, I am really rather fortunate.

Please encourage your husband to get to the classes. He may also find it helpful to meet others who are effectively navigating CKD. And it's absolutely critical that he begins working in collaboration with his medical team. He WILL feel better if he does what they say🐶

Marj

[Jmccool in reply to Jayhawker]

I agree with everything you said I’m sorry you have no family to help you. My husbands mother and grandmother passed bc of it but they were in their 70’s he’s only 52. However had I met him years ago I truly believe I could’ve helped him slow down the process just by changing the way he eats and lives. Our lives have changed drastically already and We are going to start dyalisis I’m sure before summer is over. I will be his caretaker and will do everything in my power to help him! He is coming around and still has his bad days where he doesn’t think life is worth living. Those days hurt me the most bc I do everything to be positive and keep him up he also has a 17 year old son who we now have to watch for CKD as well. But we will live and do what we are told! My whole family will eat the way he needs to eat as it will help us all in the long run!

[Jayhawker in reply to Jmccool]

This is clearly a major transition for your entire family. It must feel like life as you've known it is gone. In some ways that's likely true. But life from this point forward can still be fulfilling and rewarding.

As you go to various meetings you may have a chance to see either s social worker or a counselor. I did as a part of my renal failure education courses. I found that to be very beneficial.

How is your 17-year-old son handling all of this?

I'm keeping you each in my thoughts and prayers. I'm also truly hoping your husband can move into a place where he will begin to move forward.

Marj

[Hidden in reply to Jayhawker]

Well put, Jayhawker.

[Jmccool in reply to Jayhawker]

It is devastating for sure and honestly I am overwhelmed I will be doing his dyalisis at home. We are doing PD through his stomach I am scared but very strong and can handle it. My husband is depressed and rightly so but has made great strides to accept it and knows he will die If he doesn’t do what his nephrologist tells him. It’s been a struggle to get him to this point.

As for our 17 year old he’s very upset but thankful I’m here he’s not my son I have 3 children my youngest at home is 13. Since I’ve been married to his father he has rebelled against me and our relationship. Now that this has happened he’s 💯 totally turn around he knows his father would give up if I wasn’t here to help. And it’s brought us all together as a family as odd as that sounds. But yes we live a life of doing what we want camping, boating eating out etc. so yes life is drastically changing. But any kind of knowledge I can get my hands on I have and I read it to him. The doctor scared him into realizing how serious this is by just telling him the facts.

Thank you for the prayers we will take all we can get!

[Jayhawker in reply to Jmccool]

Yes, it's a lot of change. If I've learned anything through participating in this forum, it's that often the time immediately preceding dialysis is much worse than actually starting dialysis. Many actually say that they wish they hadn't worried so much about it; they wish they had started sooner because they felt SOOO much better a few weeks after they started dialysis, etc.

In general, those who are able to use PD dialysis seem to have the best experience. Some have been on both HD and PD. By far the majority of them say that the time they spent on PD was actually better. They often mention better quality of life while on PD as compared with HD. Many also felt better on PD when it was working well for them than they did on HD.

Anyway, I have no doubt you'll be able to learn how to administer PD for your husband. And, if your husband dialyzes while sleeping, it may not interfere much with his regular daily activities. I've found videos online showing people on dialysis who go camping, etc. Some actually do manual PD dialysis exchanges in their 🚗! I'm not planning to do anything like that for myself🐶 But clearly there are some who do.

I do plan to continue to travel to professional conferences with my work. I've found videos online showing people doing manual PD exchanges in hotel rooms using a hook that they put over a door in their hotel room for manual exchanges rather than lugging their cycler machine with them ...

Anyway, I suspect that if you and your husband let your dialysis support team know that you'd really like to keep camping, they may be able to help you figure out how to make that work.

But first things first; comply with the treatment plan. Continue to prepare for dialysis if that's what your husband's nephrologist is talking about. And keep researching. You'll come across stories from persons living with dialysis and doing all sorts of things🐶

Marj