Mark with Dr. Eric DeLaura

And so here we are at Image Guided Surgery on a Saturday morning. Why are we here? The graft for Mark’s dialysis is clotted again!

Mark noticed that his clotting time after they removed the dialysis needles on Wednesday was longer than normal. When Mark told me this, I suggested we call the office to get in for a cleaning. Mark poo poo’ed it because he wanted to be sure it wasn’t a fluke thing and because he didn’t really want to come here again. I learned not to argue these things because it does me no good!

Last night Mark said he took a long time to clot. Nearly 20 minutes per needle when his normal time is 7 minutes each. He finally admitted he needed to get it checked.

This morning he felt the graft to feel the flow. It was dead no blood flow through it at all. Mark called Image Guided Surgery, and the receptionist said that Davita had to send them paperwork. Mark then calls Davita and they send over the paperwork needed. We are told we are the second patient, and to come in right away.

Off to Union we go. I drove. Good old leadfoot is driving up the Garden State Parkway, and I see a police officer watch me speed by. I look at the speedometer. 84 MPH. Oh great! Moments later a New Jersey Trooper is behind me with his lights on.

I pull over. I think here it comes my first ticket in 30 years of driving. I give him my license, registration, and insurance. And I hand him my Newark FOP badge. Mark tells him he is a dialysis patient and we’re on our way for surgery to clear a clot in his graft, and we are running late and that I lost track of my speed.

The very nice Trooper hands me my documents back, tells me to drive safely, and lets us go. I’m not sure if it was the doctor appt, the FOP badge, or because I’m so cute, but luck was with us and some one liked us today. I was grateful! And we felt blessed!

So anyway, Dr. DeLaura is now clearing the clot, and hopefully all will be fine (until the next clot). I like this doctor! He’s got a good office, and he’s a straight forward doctor who really knows his stuff. I don’t feel like he’s a doctor who performs unnecessary procedures (like many do). He’s confident, but not cocky or condescending. We’re happy with him, and we trust what he says and does.

Just waiting til we are out of here. We have to go grocery shopping after this, and then relaxing for the rest of the day. I hope it’s a good day!

Now I am looking forward to the end of the year. I can’t say I am sorry that 2011 is ending. It’s been a tough year for us, filled with lots of change, stress, and loss. Yet, the prospect of the new year bring much hope for us.

Like many people, I got caught up in the holiday season. I’ve lost track of time! I’ve been decorating the house for the holidays. I’ve been trying to get things in order for the new year. I’ve been shopping for holiday gifts for family – and friends. I designed all the Christmas cards, and I mailed them out! I wrapped, I celebrated, and I ate (a lot)!

On a different note, Mark got his Bipap machine for sleep apnea. It’s relatively small. About the width of a shoe box, but half the length. The mask that they initially gave him was not comfortable for him. It kept slipping off his face, and it would make a hissing noise as the air escaped. When he didn’t adjust it fast enough, the darn thing would make a trumpeting noise. And it was not a nice trumpet sound. It sounded like someone who had no clue how to play a trumpet!! It would startle poor Belle, and she would charge up to the top of the bed and stick her face into Mark’s to see if he was okay! It was actually kind of cute.

He called his doctor and he got a different type of mask. It seems to be a better fit. Mark claims that the machine is not helping him – and if it is, is a very minimal improvement. I see it from a different point of view. I have noticed that Mark sleeps so much more peacefully (except for the occasional mask adjustment). He does not snore, snort, gasp for air, or hold his breath. He also does not kick in his sleep anymore. He doesn’t move his feet and legs around like he did. And he does not shake his legs either!

Mark says he is still exhausted and still feels tired and sleepy at the most inappropriate times. I don’t see that nearly as much as I did. He seems more alert in the evenings. He says he is not. He says he still naps during the day. I am not sure what to think. From an outward appearance, he seems much better, but I don’t know what he is actually feeling. He is going to see the sleep specialist after the first of the year. I suppose we will see what she has to say about all of this.

I know he finds the mask and hose to be restrictive, but he (begrudgingly) does wear it for most of the night. During week days, I have seen him pull it off about 5AM which is about 30 minutes before the alarm goes off. I don’t fault him for that. He’s been wearing the darn thing for 7 hours at this point.

This morning, he was still wearing it when I got out of the shower about 8AM. I was impressed. He looked so peaceful. His breathing is so quiet now that I have to actually see if he is alive!! LOL Did I mention that I can hear the music station at night? It’s been something I have been missing out on for AGES because Mark would snore and snort over the music! It was so wonderful to listen to the holiday music as I was trying to sleep!

Last night Mark told me that he got his “dialysis report card”. He said that overall it was pretty good except for his weight. Well, we all know that weight gain is something that Mark (and I) excel at. But it’s “crunch time” right after the new year starts. I definitely need to get on track to lose weight, eat healthier, and get more active. Of course, getting organized, finishing up a gazillion projects that I’ve started, and writing more regularly are also some things that I need to tackle as well. Sadly I say this every year, and every year, I fail miserably!! Oh well at least I tried!!!

If I don’t post again this year, Happy and Healthy New Year to one and all!!

All Hooked Up for his sleep study!

Mark had his second sleep study on Saturday, November 12th. It’s official. He has sleep apnea and his CPAP machine is ordered.

Mark didn’t get a copy of the sleep study like I asked him to, but he did tell me bits and pieces of what he learned.

He was told that his oxygen saturation goes very low at night. His heart stops 90 times an hour, and his breathing is worse when he sleeps on his back.

The technician told him that the settings for the CPAP machine had to be set very high because he’s got one of the worse cases she’s ever seen. The study results will go to the doctor, and the CPAP machine is being ordered with factory pre-set settings. He was told when (if?) he loses weight, he will need to go for another sleep study to see if his CPAP machine will need to be reset.

We are not sure when the CPAP is coming. Mark didn’t find that out. He also didn’t call the doctor. No use nagging him. He will do it in his own time.

I hope this helps because I have never seen anyone just fall asleep on a dime!

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!!

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?

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!

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……

We’ve been “hanging in”  and trying to stay healthy. It’s been a stressful summer for us. Not sick stressful, but life stressful. We are planning to move in a couple of weeks, and it’s been a job finding a new home, selling the one that we have, and packing to get it all together.

Moving is never fun. When we moved to this home, I did most of the packing. I guess that’s because I am the better packer, and with the kidney disease, Mark doesn’t have the energy to do it.

Mark’s been feeling okay, although the fatigue is a big factor for him. He’s always tired, but I guess that comes with the territory of kidney disease.  Mark’s Davita Report Card has been decent. He struggles with his high phosphorus levels, even though he takes his binders regularly. I think it really has to do with his diet. He doesn’t always follow the guidelines for his phosphorus intake. He loves things that are canned, and that is a no no. He also likes chocolate. Again, a no no. He likes processed meats. Another no no. I can’t constantly nag him, so I have to just suck it up and let him do what he wants.

He also struggles with his fluid intake. He always gains too much weight. And speaking of weight, he “report card” brought that up. He has gained TOO much weight, and if the transplant center finds out, he will be back to “inactive status” (or worse???)

I know it’s hard to lose weight. I know it’s hard not to drink fluids (especially in the summer) but he’s GOT to do it. Or there will be no kidney for him.

He’s been having some blood pressure problems too. His BP is getting way too low after his treatment. He always had HIGH BPs even at the end. No one seems to know what’s going on. Both nephrologists don’t seem all that concerned, but to me, 90/35 is WAY too damn low!!

This journey is a tough one. It’s one of constant worry and fretting. Not fun for me. It’s filled with frustrations (for both of us) and it requires more patience than I often have. I am trying. It’s all I can do.

Mark was due to have his three month check up at Image Guided Surgery and Aesthetics later in the month. But he started having some excessive bleeding after his needles were removed. Usually he clots in about 5-8 minutes, but it has gone on much longer in the past few dialysis session.

He called Image Guided Surgery, and Eric (the manager there) was able to get him in on Saturday (which they reserve for emergencies only). We had an 8:30 AM appointment which is not so bad considering that the traffic on the Garden State Parkway is wonderfully light on Saturdays.

The problem that Mark was having was a combination of scar tissue build up around the stitches (where the bovine graft is sewn to the vein) and a narrowing of the graft due to the build up.

The procedure is done in the office, and it does not take all that long. Mark is given some medication to make him sleepy, and an incision is made in his arm, and a balloon is inserted through the graft and into his heart. It clears the clot and widens the graft. Then he sits for about 30 minutes to allow for the single stitch to clot. The stitch is removed, and we were good to go home.

It’s amazing how they care for this graft. So all is good right now…. We are scheduled to go back to get the graft checked at the end of August…

Here’s to a healthy summer!

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

Then…WAIT

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

What was the treatment? More dialysis treatments to remove fluids. The hospital gave him treatments on Sunday, Monday, and Tuesday.

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!