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And the struggle continues… but the Clarks march on!

May 16, 2011 2 comments

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

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!

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