On Monday, November 7th, Mark went for his sleep study. He went there directly after his dialysis treatment. He called me before the study started, and simply told me that he had his own room, the bathroom was down the hall, and the technician would be in shortly to hook him up and get him ready.
He got home about 6:30 on Tuesday morning. He brought home breakfast and coffee for us. I thought that was pretty sweet of him. He was told that he has sleep apnea. (Like I didn’t know that YEARS ago!) The study showed that he stops breathing “quite often” during the night. Of course, Mark has never been one to ask too many questions, so I really do not have many details. He did tell me that the technician said that his oxygen levels go very low.
He goes for another sleep study tomorrow night. This time it will be a study using a CPAP machine.
CPAP, or continuous positive airway pressure, is a treatment that uses mild air pressure to keep your airways open. CPAP typically is used for people who have breathing problems, such as sleep apnea.
CPAP treatment is done using a CPAP machine. CPAP machines have three main parts:
- A mask or other device that fits over your nose or your nose and mouth. Straps keep the mask in place while you’re wearing it.
- A tube that connects the mask to the machine’s motor.
- A motor that blows air into the tube.
I am hoping that the treatment for his sleep apnea will eliminate his excessive sleepiness. I know that kidney disease can cause fatigue, but that is completely different from falling asleep in the middle of the day. I also hope that this eliminates his snoring, his gasping for air, and the breath holding that he does constantly. I might actually get a good night of sleep!!
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?
Wow, it’s been a very long time since I have updated this site. I think I am suffering from “CIF” — aka Chronic Illness Fatigue.
So much has happened since the last time I updated this blog. I didn’t even realize that so much time had elapsed. It’s almost scary how quickly life is going by!
Well, since I last updated, Christmas came and went. We managed to have a very nice and relaxing holiday season!
The winter was a rough one here in New Jersey. The day after Christmas dumped about two feet of snow on us. As bad as that sounds, it was sort of fun. We got snowed in, and Belle had a ton of fun playing it! I was even able to capture some great video!
Shoveling all that snow was not all that bad, but it was not on the top of my “Fun Things to Do” list either! Mark gets easily fatigued with physical stuff. But I’ve always been the one who did the majority of the shoveling. I always used to be afraid he would have a major heart attack since he was so overweight. I guess I just got used to it!
Mid-January put Mark in the hospital for about two days. He spiked a fever at dialysis, and we wound up in the ER. No one ever really knew what was wrong with him. Just some mystery infection. He got some antibiotics, stayed in the hospital for two days (while they waited for the blood cultures to come back), and then they sent him home.
Then things were going along smoothly, but I did notice that Mark was gaining some weight. He managed to reach the weight that allowed him to become “Active” on the transplant list, but it’s hard to maintain. (Dieting sucks!!!)
Things were going well with Mark feeling pretty good overall. Then at the end of April, Mark started developing some congestion. He chalked it up to tree pollen. He said it felt like he had a “mucous gobber” in his throat. We did the “cold meds/allergy med” thing, but it was not getting better. He then developed a cough. He refused to go to the doctor for what he called a “cold”. He said if he spiked a fever, he would go.
Over Easter weekend, he said he was feeling short of breath, and all he wanted to do was sleep. I wanted to go to the ER. He didn’t. A fight ensued. I threatened to call 911 and have an ambulance take him to Bayshore Hospital. He told me that I was crazy, and I needed to take medication.
On the eve of Easter, he spent most of the night sitting up and coughing. He still did not want to go to the hospital. Stubborn man!!!
On Easter morning, he finally couldn’t take any more of the shortness of breath. We went to the ER about 8AM. It’s pretty much the same story each time we go. The Intake Form (where I list his symptoms, and always add in the line “in an ESRD patient on dialysis” which seems to streamline the whole process faster.
We followed the usual routine.
- Take Mark into a room
- Get his list of medications
- Take his temperature
- Take his blood pressure
- Listen to his lungs.
- Try to find a vein for an IV (which takes no less than three people)
- Take routine blood work and cultures (always gotta rule out that sepsis!)
- Get a chest xray
- Get an EKG
I always know that he will be admitted. I don’t think that they can send home a dialysis patient without complete test results back from the lab.
This time they determined that he had a high white blood count. That meant antibiotics via IV.
The EKG was normal. The chest xray showed fluid. Diagnosis was fluid overload (and some sort of infection).
What is Fluid Overload?
If there is too fluid in the body, a person can become fluid overloaded. This is caused by more fluid going into your body than is coming out (via dialysis). Fluid overload can cause damage to the heart.
Symptoms of fluid overload can include:
- Rapid Weight Gain
- Edema and swelling of ankles, hands and eyes (which can cause swelling)
- Elevated blood pressure
- Difficulty Breathing especially when lying down
He was released on Tuesday evening, but then had dialysis on Wednesday, Thursday, and Friday. It was not exactly a fun way to spend his Spring Break, but I do believe that this was, yet again, something that was brought on by himself.
Now this just seems like Mark simply drank too many fluids over a period of time, and he was not having enough fluid removed during his dialysis treatments.
This is not the case. It couldn’t be all that simple. Here’s what really happened….
Ever since Mark lost enough weight to be considered “Active” on the transplant list, he began slowly gaining back some of the weight. He did not want the dialysis team, his doctors, or the transplant center to find out. He was afraid that he would be moved back to “Inactive” status.
So when he weighed in at the dialysis center, he never gave them his true weight. And he would estimate how much fluid needed to be taken each time he had his treatments.
I think, and I really can’t confirm this, that the false weights he gave, the weight gain, and his excess fluid intake contributed to this whole scenario.
But regardless, the gig is up! The dialysis center knows his true weight. And they know that he has been lying about his weight.
So he must now print out his weights for them. This will hopefully keep him on track. He must also watch his fluid intake. He definitely drinks too much liquid. I know this, and so does he. I am now trying to get him to realize that fluids are not just things that he drinks out of a glass. He also must consider fruit, veggies, ice cream, jello, and other foods that have a high water content.
I’ve come to the conclusion that “it is always something” when it comes to kidney disease. You just can never really relax. It is a struggle for a balance of fluids, diet, exercise, phosphorus, potassium and sodium.
I have to wonder about it all. It’s been almost two years since we were first started the walk down the road of End Stage Renal Disease. It has not been a fun walk. It is filled with struggles, waiting, and frustration. We are tired. From what I can tell, we are still a few years away from a kidney transplant. And then that begins a whole new series of worries, medications, and the like.
I honestly miss the “carefree days”…. Some times it is really hard for me to write about all of this. It wears me down. And it wears Mark down. Some times I think about running away from it all. Not practical, but it is certainly an form of escape.
I do remember when Mark first started on dialysis, and he was sick ALL of the time. Just when he would start to feel better, it was time to go to dialysis again. Now for the most part, he feels pretty good except for the constant fatigue. I guess that goes along with the ESRD. He also sleeps a lot more than a healthy person would. He can also nod off at the drop of a hat.
When I first met him in 1999, well before he had ESRD, I always thought that he slept more than anyone I knew. But that could be because I am one of those people who doesn’t need/want a whole lot of sleep. I’m pretty good with about 5-6 hours. When I sleep too many hours, I feel like I am drugged.
But anyway, I suppose that is the latest going on with us. It’s pretty much still one day at a time. And for the most part, I live my life in a constant state of worry and panic with some hope tucked in for good measure!