Finally a REALLY good report card!

Yep, it’s me. I’ve been absent again. I know, I always say I will do better, but it just doesn’t happen. I have so much that I want to write, but time is short. Life just always seems to get in the way, and before I know it, time has passed, and I just wonder where it went.

So here’s the latest on our life with Kidney Failure. Mark just got his latest report card. He very willingly HANDED it to me (which is not something that he often does — even when I ask him).

This Report Card was very good, and I am quite proud of Mark for his efforts because I KNOW that this is not easy.

Here’s the scoop….

Albumin was 4.1 (it should be 4.0 or higher)

Hemoglobin was 10.7 (still slightly below normal, but it has been consistently rising from 10.2 to 10.5 and now up again)

Calcium Correct was 9.6 (it should be in the range of 8.4 – 10.2)

Phosphorus (always a problem for him) was 5.4 (should be 3.0 to 5.5). It’s finally in normal range!! Woo hoo!

PTH Intact was 320 (the normal range is 150 – 600)

Potassium was 5.3 (the normal range is 3.5 to 5.5)

URR (measurement of how well the blood is being cleaned) was 66%. It should be above 65%. A little on the low side, but he’s never been extremely high, and the doctor seems pleased with this.

Cholesterol was 127 (the normal range is 100 – 200)

Glucose was 124 (the goal is 80 – 180)

HGB A1C (measure the average blood sugars for the past 2-3 months) was 6.2 (which is what it’s been for the past few months).

And finally………..

Fluid Control was 3.8 kg (should be below 4kg) so his monthly average is actually GOOD!!

I am pleased with this. He obviously was too since he gave me the report willingly. But it’s all good.

Now if we can just get the weight of him. He’s still at 146 kg (which converts to about 321 pounds). That gives him a BMI of 43.50. He needs to be 30 or below for a transplant. They gave him some leeway (at 35 BMI) but he needs to lose about 75 – 80 pounds. I know it’s hard. But he needs to do it.

He decided to take sick leave for the rest of the year. He’s going to concentrate on rest, exercise, and healthy eating. He wants to get on the treadmill, get more sleep (5-6 hours a night has not been working for him), and eat at consistent times with good solid meals. I have no problem with this. Nothing will really change for us. Except that he might get healthier…. and he is home in the evenings (because he’s been requesting an earlier dialysis shift). If this is what he feels he needs, that is fine with me.

I just want him to get the weight off so that when his time comes for a call for a kidney transplant, he is healthy and ready to go.

He just went to see his nephrologist (Dr. Ossama Hozayen) for a checkup and all was well. He goes again in a month. He also saw Dr. Mona Awad while he was there. She was the doctor who recommended the sleep study and ultimately the BiPAP machine.

And speaking of the BiPAP machine, Mark has FINALLY agreed that it is helping him. He says that when he uses it, he does not wake with a headache or a feeling of nausea. I also noticed that he sleeps very peacefully. He doesn’t “kick” and move his legs like he used to do. He also doesn’t wake up gasping for air. He sleeps peacefully and quietly. The machine makes no noise at all. Sometimes I hear the air rushing through the hose, but most times I don’t.

My biggest problem is that when Mark is facing me, the output of air often blows on me. It will dry out my eyes or give me an earache. Sometimes I wake with a stiff neck but I’ve adapted a fix. I put up a barrier between the hose and me. It’s usually a small stuffed bunny, and then I have no problem! 🙂

We also had another issue arise. It’s not really health related, but more of an insurance matter. When Mark was first diagnosed with kidney failure, his insurance company required he pay a $35 copay each time he had a treatment. That was about $420 a month. Davita suggested that he get Medicare. We signed up, and the cost was about $125 per month (which is a sliding scale based on our income). Not a problem.

When his employer switched health insurance companies, the new company did NOT require the $35 copay for each treatment. Mark was not required for to pay anything. Only his doctor visits were $5 and his prescriptions were $5, $10 or $15.  We decided that there was no need to continue the medicare, so we cancelled it.

Now after nearly 33 months (GULP!!) of dialysis, the insurance company requires that he obtain medicare as his primary insurance for his ESRD procedures (which include dialysis and transplant). We were worried about the rise in cost. We were told when we cancelled it that when/if we needed to enroll, the price would be higher.

When Mark called Medicare, were told that the monthly cost would be around $100 (which is less than last time). The representative told Mark that it was due to lower costs in medicare by the Obama Administration. Well that was fine with us!!!

We are now getting close to the three year mark of kidney failure and dialysis. It’s hard to believe that it’s been this long. Our life has changed dramatically. In some ways it has changed for the good, but most ways, it has not. The constant stress of this condition is draining – for both of us. I have always lived in a constant state of worry, but this just makes it even more heightened.

I know that a transplant is not the solution. Sure, it will give him a working kidney, but it also will be a whole new set of issues such as rejection, immuno-suppressing meds, and a hectic (first) six months filled with constant doctor visits. Oy!

But all in all, we are hanging in the best way that we can. It’s really all we can do.