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

October 27, 2011 5 comments

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?

Waiting……

October 3, 2011 Leave a comment

Mark is having the clot cleared by Dr. Eric DeLaura.

We spoke with him during the exam. He said when Mark left his office on the 17th of September, the graft was clear, wide open, and flowing fine. Dr. D said the causes could be low blood pressure after dialysis which is not allowing good blood flow and a clot forms.

He also said that the dialysis sessions could be taking too much water, but Mark refuted that since he’s been carrying too much water and needed an extra dialysis last week.

Dr. D also said that it was possible that Mark was sleeping on the graft, applying too much holding pressure to stop bleeding after dialysis.

We asked how we know when the graft is at the end of its life and it needs to be removed and replaced. He said artery or vein clots (as opposed to a clot in the graft tubing), separation of the graft from the artery or vein, or infection (like the sepsis from last year) were causes for removal.

He felt that what Mark is going through did not indicate the end of the graft. Of course he would know more once he went in to see what the problem is. So I wait!

The graft is clotted AGAIN!!!!

October 3, 2011 Leave a comment

So, it’s clogged again. This is the third time in less than 3 months. 

It was just clotted on the 16th of September!! The interventional radiologist, Dr. Eric DeLaura (the doctor who cares for the graft and cleans it out when it clots), just cleaned it out and put in a stent.

It shouldn’t be clogging again so fast. I know that the life of these grafts are about 9 months to a year. This one is just a little over a year now. It might be at it’s “shelf life”. That creates a whole new set of problems. It would mean surgery to remove the existing graft and putting in a new one. Of course, the problem is that there has to be a good vein and artery to connect it to that will allow good flow and easy access.

When Mark had to have his first graft removed due to infection, the surgeon was not sure that he could still use Mark’s right arm for another graft.

None of this makes me or Mark happy. It means a day off from work to take care of it. Not a huge deal but an inconvenience.

And so here we sit in at Image Guided Surgery to see Dr. D to figure why this thing keeps clotting.

We come here so often that I was able to get here without the nav system. Just so frustrating.

And we wait……

Categories: kidney disease