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The Report Card Cometh….

May 25, 2010 Leave a comment

The change of venue has proven to be a good one (so far!). Mark gets home earlier now, and I feel better knowing that he is practically right around the corner! Last week, the dialysis center had a “Spring Party” with balloons, food, beverages, and snacks. Mark said that Perth Amboy never had anything like that!

He got his first Report Card from the new DaVita center. His numbers are looking pretty good – overall. He was having some problems with his phosphorus levels. They were consistently high. He was put on Renvela which is a phosphorus binder. It helped a little bit, but his levels were still too high. Also on the high side was his PTH (parathyroid hormone) and calcium levels. His nephrologist put him on Sensipar to lower the PTH.

I know Mark did not want to take it — since he felt that he could control his phosphorus on his own. We go through this sort of thing on a regular basis. Mark always thinks that he can “fix” himself, and anyone who has read this blog from its inception, knows this is not true. Luckily Mark has started to take the Sensipar, and his phosphorus levels are FINALLY within normal range. His calcium levels are still high, as are his PTH, but DaVita believes that the Sensipar will help to bring those levels back to normal.

Here is a run down of his Nutrition Report (the numbers in brackets are the goal levels)
Albumin = 4.3 [4.0 or higher] = Protein levels are very good
Hemoglobin = 11.4 [10 -12] = This measures red blood cell count
Calcium Corrected = 9.9 [8.4 – 9.5] = Slightly high – avoid dairy and continue to take the Sensipar
Phosphorus = 4.9 [3.5 – 5.5] = Phosphorus level is GREAT!! His previous level was 6.3 so this is good news!
PTH Intact = 420 [150 – 300] = Level is too high. Vitamin D will be given and continue to take Sensipar
Potassium = 4.1 [3.5 – 5.5] = Level is good!!!
spKt/V Total (Adequacy of dialysis) = 1.56 [1.40 or higher] = Blood cleaning is good!!!
Cholesterol = 99 [100 – 200] = Low? Oh please!! LOL

Overall, this is good. Mark used to have problems with the protein levels being too low, but this seems good, and hopefully with the Sensipar, the PTH, phosphorus, and calcium will become (or remain) normal. Mark says he feels pretty good most days, and that is always a good thing. When we started this journey, he felt crappy ALL the time. He would sleep more than he wouldn’t. We used to take naps on non-dialysis days when I got home from work, but now he doesn’t really need them! I like that he feels good!! It makes life so much more pleasant for both of us!

Now the goal is to stay healthy, lose the 10 pounds to get on the active transplant list, and find a kidney! It seems like a huge task, but I do believe it is feasible and quite possible, if Mark puts his mind to it.

I still spend WAY too much time worrying about the future…. and fearing the worst. It shouldn’t surprise anyone who knows me though. I have been this way for the better part of my life. It would be easier, I imagine, if I had a “take life as it comes” sort of attitude, but that’s not the way that I am. I worry. I fret. I panic. I stress. I take a pill, and it ends temporarily.

Hmmmmm….. wonder what I will be like when Mark gets his transplant? And I am sitting in the hospital waiting? and worrying…. Yikes, do I even want to think about this yet?

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Graft is cleaned out!

May 15, 2010 Leave a comment

With a bit of luck, we are good for another three months.

Mark slept through it and is waking up now!

One “ugly” chore down for the day. I am grateful it went well…

Categories: kidney disease

Graft check up and the annoying wait! And neurontin update!

May 15, 2010 Leave a comment

We got here to the Access Center here in Union for our 8am appointment. We were checked in close to the scheduled time but it is now 9am and no sign of the doctor.

Did I ever mention how much I despise this sort of thing? Why can’t the doctor get here on time? We scheduled the first appointment so we would not be hassled by backups due to other patients slowing things down! But when the doctor is late that sucks. Our time is important too. We don’t care for getting up at 5:45 on a Saturday and then waiting.

All we need is a darn check up! Just hoping all is fine and we can get out of here and enjoy this sunny spring day!

And while I remember, Mark started taking neurontin for his diabetic neuropathy and his (undiagnosed) Restless Leg Syndrome (RLS). Mark was taking xanax for the itching and leg sensations, but that was not really doing much! Finally I went to the American Diabetes website, read the forums and learned that many people were having luck with neurotin. When I read about the neurontin, I found out that it helped RLS too,

So this has been a great drug for Mark. It has completely stopped the neuropathy and the intense foot itching that he would get. It also had stopped his RLS symptoms which included shaking his legs in his sleep.

Obviously neurontin is not the answer for everyone, but it is working for us. It also helps Mark sleep through the night although, as he says, just a bit too soundly.

Changing subjects… The doctor showed up… At 9:10!! And to boot, Mark has some build up in his graft. The build up is not severe, but doc recommends a graft cleaning. He says it is not a big deal. Mark will get a shot of very short acting medication (conscious sedation), then a balloon will be inserted into the graft (similar to the heart angioplasty) and the blockage will clear, and we should be good to go.

That’s what they say! And what is planned, but we will see!

I am still trying to get Mark motivated to get back on the diet track. He has about 9 more pounds to lose before he can become “active” on the transplant list. Mark wants me to do research (when he is finally listed as “active”) to find him an “altruistic” kidney. No point in doing any searches because he is still over the BMI for transplant.

What an ordeal all of this is!! Dialysis, doctors, medications, testing, new symptoms, more meds!! Ugh! I sure do miss my simple life!! And it has been about a year since the hospital stay for the dialysis. Sometimes it seems like we have been doing this forever and other times it seems like just yesterday.

Sigh…..