Any caregivers out there?

[Lovespuppies]

Hi I'm new here and I am the caregiver of a new hemodialysis patient. Are there any groups for caregivers? My husband was gifted a kidney in 2012 by a friend and former co-worker of mine. From the beginning there was a problem with too much protein. Nothing the doctors did could help and he now at the young age of 65 suffers from diabetes, congestive heart failure, respiratory failure (from all the fluid), and just got out of the hospital after being in for a little over a month. He feels ok and drives himself to dialysis. I feel so alone and I don't know what to cook yet (waiting on an appointment with the dietitian). I guess he has too many comorbidities to ever get on a transplant list. He had a mild stroke in February this year, a heart attack in March of this year and then his 2nd heart attack in August on his 65th birthday. He spent 4 days in the hospital and 4 days out. Then 2 weeks in the hospital and 1 day out. The remainder of August and part of September was spent in the hospital. So sorry this is so long. I need someone to talk to.

[RichP48 NKF Ambassador NKF Peer Mentor]

Have you been able to have a frank discussion with his doctors?

It sounds like that you are pulled in many directions because of all his issues.

You certainly do need to talk things out.

A live doctor would be preferable to posts on this discussion board.

In any case, you might try Googling diets for CHF and diabetes patients until you talk to the dietitian.

Peace and Blessings!

[marcyc NKF Peer Mentor NKF Ambassador]

I was a kidney donor for my husband a few years ago and prior to that I did home hemo for him 5 nights a week, while working full time. Sometimes I would feel like I was doing more to keep him alive than he was. The Transplant certainly is not a cure, lots of things to deal with. One thing I learned as a caregiver is that if you don't take care of yourself, you will have nothing left to give. I know it is hard but take time for you. Go to the gym or pool for a couple of hours, go out with friends, or just for a walk in the park. As far as diet, cut the salt, read the labels for sodium. He would avoid high potassium foods and high phosphorus. Every dialysis center has a dietician. Look on the National Kidney Foundation web site or DaVita. The DaVita site has recipes. Best of luck, stay strong!

[Lovespuppies in reply to marcyc]

Thank you. Your reply is so encouraging. I do feel like I am doing more to keep him alive than he is. I lost it last night because he will go to stores and when he goes inside he takes his oxygen off.

[marcyc NKF Peer Mentor NKF Ambassador in reply to Lovespuppies]

Probably embarrassing for him. There is only so much you can do. Take a deep breath.

[Lovespuppies]

I asked him that. He said he was going to wean himself off. I am trying to take a breath. Thank you. At least you get it.

[marcyc NKF Peer Mentor NKF Ambassador in reply to Lovespuppies]

My husband asks me, can I smoke a cigar at the picnic? I want to scream, you stupid ....., but no take a deep breath and say, you are a smart person, you know what smoking does to eyes, kidneys, heart. That is your decision. I found it hurts me to go postal and him. I try to imagine how much control over his own life he has lost through kidney disease, heart disease and diabetes. Hard to be patient sometimes.

[Lovespuppies]

I just had a reality check. He went to lunch with our former pastor and didn't wear his oxygen. He then asked me if it was ok to go see his grandson play football an hour and a half away. I, like you, took a deep breath and told him that it is his life and he needs to do what he feels up to doing. That was hard. I wanted to scream you were without oxygen for over 2 hours and now you want to go far away from me in case you need me. I'm trying very hard to let go. I am working on that.

[marcyc NKF Peer Mentor NKF Ambassador in reply to Lovespuppies]

Then you can say, I'm glad you are having a good day. Do you think we should put your oxygen tank in the car, just in case, since we will be 2 hours away? It would help me feel

Safer about the trip.