Home > dialysis, kidney disease > A Good Dialysis Nutrition Report… (but I think he has Sleep Apnea)

A Good Dialysis Nutrition Report… (but I think he has Sleep Apnea)

The Infamous Nutrition Report!!

I finally got to see one. Mark doesn’t really bring them home. I know why that is. He doesn’t want me to see the values of his blood work, he hides them. Sometimes it’s like being married to a child. Sigh…

After not seeing a Report Card for a few months, I asked Mark about it, and he said he throws them away. I told him that I would like to see them. He made a face, rolled his eyes, and mumbled under his breath. Oh how I HATE that!

I told him that I would just call the nutritionist and speak with her directly. Hence the appearance of the Report Card dated October 22.

This Nutrition Report was actually pretty good overall. I was impressed! Even his phosphorus levels, which are always too high, were in the normal range! I can’t remember the last time that happened!

His only real problems seems
to be his fluid intake and his weight gain. He needs to be at a BMI of about 25-28 in order to stay on the transplant list. He was doing well last year and after losing weight, he actually got listed as “ACTIVE”  status, but since January of 2011, the pounds have been creeping back on. I know it’s not easy to lose weight, and it is even harder to maintain it. But I’m pretty sure if I was on the transplant list and needed to be at a certain weight to qualify, I would jump through hoops to get there and stay there.

The Nutrition Report said that he gained 4.7 kgs (which is 10.3 pounds) of fluid. That is in 48 hours. That means he is consuming MUCH too much liquid in his diet. He knows this. He was hospitalized for 2 days in April when he had Hypervolemia, or fluid overload, which is the medical condition where there is too much fluid in the blood. He was warned about his fluid intake. He was told that the excess fluid could affect his heart. It seems he gets a scare, and he is good for a while, and then WHAM, he is back to his old ways.

His report also said that he gained 31 kgs of weight (aka 68 pounds) since January. BAD! BAD!! That will automatically put him back on the inactive status at the Robert Wood Johnson Transplant Center. He has his annual checkup in December. I don’t see how he will be at a good weight by then. It’s really frustrating. I think he sometimes forgets that I am affected by his actions too. It’s not just about him.

I know this isn’t easy for him, but it is not easy on me either. I try to be supportive and understanding. But sometimes I have to nag and scream because he just doesn’t get it right!And he just screws it up and then wonders why he doesn’t feel well.

On to another health topic …

Before Mark lost all the weight that put him on the active transplant list, he used to snore loud and often. He would also hold his breath in his sleep and then gasp for air. I knew that it was not a good thing, and it was more than likely a case of sleep apnea, or some other sleep disorder. I told him about this back in the early days of our relationship (a good guestimate is 2002 – 2003). He “poo pooed” me, and told me that it was nothing. I suggested he go to the doctor and mention it to him. His response was, “no doctor”. How familiar, huh? I have been hearing that phrase ever since we met in 1999. Not to get off track, I do believe had he been more willing to visit his doctor regularly, we would not be in the dire situation we are currently in now.

Anyway, over the years, I would mention the snoring and gasping for air to him. He never felt it was anything serious. I told him that sometimes he held his breath, and I would have to nudge him to get him to breath again. He still didn’t think it was a problem. Go figure!

When he was in the hospital last year for the sepsis, he was told by two doctors that he snored loudly. One doctor was a pulmonologist named Mona Awad (the wife of Ossama Hozayen, the nephrologist). She suggested that Mark make an appointment with her office to get checked out and schedule a sleep study. Mark was having no part of it, and he poo pooed her as well.

When Mark lost the 80 pounds, he stopped holding his breath. And low and behold, his snoring was very minimal. I think he slept better. I KNOW that I did. It’s hard to sleep when the person next to you snores like a damn bear! Well, now that the weight is creeping back on Mark, guess what came back? The SNORING! And guess what else is back? The breath holding and gasping for air. And guess who is not sleeping well? ME!

Lately Mark’s been complaining of fatigue. His breathing at night has been bad. While at dialysis, he spoke with Dr. Romano (another nephrologist) about his fatigue. Dr. Romano says that his blood work does not indicate a reason for the fatigue. He is not anemic. His hemoglobin and albumin levels are within normal limits. His Urea Reduction Ratio (URR) – which is a way of measuring how effectively the dialysis treatments removed waste products from the body – have been consistently good. In fact, it’s been a while since he’s had a low reading in that.

Dr. Romano asked Mark about his sleeping and if he was resting enough. Mark told him he gets 6.5-7 hours of sleep a night during the week and a bit more on weekends. Dr. Romano mentioned Mark’s heavy snoring – which he hears when he visits Mark at DaVita. He also suggested a sleep study.

Well, Mr. Lovable Stubborn finally thinks that Dr. Awad and Dr. Romano MIGHT be right, and he might need a sleep study. He made an appointment to go see her. He goes on Thursday, November 3rd. I am glad that he decided to go. Maybe he will finally find a reason for his fatigue. And maybe, we can both get a good night’s sleep. I can’t imagine that he is sleeping well. After all, how can a person gasp for air and not wake (even if it is momentarily).

Now… wouldn’t it be interesting if his fatigue is due to the sleep apnea and not completely related to the kidney failure?

  1. jaren
    October 28, 2011 at 5:15 AM

    Good Morning Bonni; just read your & Mark’s status…fyi, I was diagnosed with sleep apnea in 2000. what a difference a sleep study makes! I will never ever sleep without my machine again! I get re-tested every 3-5 years, thats how they adjust the air pressure. best thing I ever did was go for that sleep study! I hope Mark goes for the sleep study. I admit, its not the most fun you’ve ever done kind of study, but there is 100% no pain, its just getting hooked up to the wires thats a pain in the neck, after that, all you have to do is go to sleep and snore away!

    • October 28, 2011 at 9:44 AM

      Hey Jaren,

      It seems like a LOT of people have sleep apnea! I have told Mark that he has sleep issues for years, but… well, you know how men can be!

      He has promised that he will go for the doctor appointment and the sleep study! I have a feeling he will wind up with a machine …. did you have trouble adapting to it?? He was concerned it would make a lot of noise, but I can’t imagine it would be any worse that the horrendous snoring!!!

      Hope you guys are doing well!!! XOXO

      • jaren
        October 29, 2011 at 6:46 AM

        I had no problems adapting to the machine. the only “Noise” it makes is a small stream of air, but depending on how you position the hose, even that is quiet. the only pain in the neck is the actual sleep study. it takes about 1 hour to get hooked up to all the wires. your hair gets all goopy from the vasoline…but, a good hot shower when your done takes care of it all. my sleep apnea was so bad that I was put on a machine the night of the study. best advise I can give you and Mark, is not to make a big deal of it. just do it, and just use the machine. when the machine gets dropped off, they will explain how to clean it, use it, adjust the head straps, etc…ask them questions. I LOVE my machine, and even if I am diagnosed to not have sleep apnea anymore, I will still sleep with it.
        getting diagnosed was a very positive experience. believe it or not, it helps with not being depressed, not eating as much (eating to stay awake) not being cranky, a better energy level…the list goes on and on.
        I have even learned how to sleep on my stomach with my mask on…which is my favorite way to sleep! like I said, keep it positive and not such a big deal…Its a God send~truly!

  2. Rachel
    December 27, 2011 at 4:15 AM

    Have you considered PD for Mark? Helps w/ the energy issues, is more gentle on the body, and there aren’t so many diet restrictions. Plus, no clinic 3X a week and there’s a huge sense of control you don’t have while on hemo!

    • December 29, 2011 at 2:50 PM

      Hi Rachel,

      Thank you so much for reading my blog and for posting a comment.

      Mark and I have spoken with his nephrologist and the surgeon, and both feel that Mark COULD be a good candidate especially if he lost more weight. He carries the majority of his weight in his torso which could make his look fatter if he did PD. The pros and cons were discussed, and it actually sounded pretty good to me. It was not something that Mark wanted to do. I think it was a fear thing. There are risks with all aspects of dialysis, but like you said, this sounds like it would be kinder to his body.

      I do understand his reluctance to try the PD. He waited WAY too long to see the doctor to actually get the CKD diagnosis, and I fear what could have happened if he didn’t FINALLY go. He’s pretty brave about all of this kidney stuff, but inside I know he is frustrated and scared — just like I am.

      When he is in one of his receptive moods, I may broach the subject again. I’m gonna put together a “Pros of PD” outline for him, and that may help him change his mind. After all, with 2.5 years of dialysis under his belt, I figured he is about half way there to a transplant. But 2.5 years can be an eternity of going to Davita 3 times a week!

      Are you a CKD patient? Or a caregiver? or a healthcare professional?

      Thanks again, Rachel. Happy and healthy new year to you and yours.

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