Friday, June 20, 2008

Roller-coaster ride of life

Ron’s had two Procrit injections now. I had to look Procrit up because I wasn’t sure what it was, except that I knew it was for anemia; in fact, I didn’t even know it was Procrit he was getting as the office referred to it as “epo.” His hemoglobin was around 9.1 and the doctor said that for him, it should be between 14 and 15, so it was quite low. She said he was the equivalent of three pints low on blood. It’s no wonder his color was gray and he had no energy.

His weight for the past three weeks has really fluctuated. When he was discharged from the hospital on June 3, he weighed 254 and weighed 252 the next day at home. Last week (June 11) at the doctor’s office he weighed 264, which is a big jump in just a little over one week. They had drained a lot of fluid off of him in the hospital (he was admitted at 272 on May 30) and he was really dehydrated and week when he came home.

On our scales on June 18 he weighed 272; at the same doctor’s office but a different scale than the week before, he weighed 274 and that concerned the nurse. She had him go see the nephrologist just to make sure he wasn’t headed into some kidney or heart failure again. She was a bit concerned but only because if he continues on an upward spiral, then he will for sure go into heart failure again as his heart will not be able to keep up with the fluid retention.

She could see pitting edema in his legs and his right foot was really swollen. He said he felt good and had more energy (his hemoglobin was up to 10, which was good) and his color was better. She gave him an additional diuretic to take to help get some of the fluid back off. This week he’s to take one every day, next week he’ll take one every other day for three days and then stop. He’s to check his weight every morning and at the end of this two week period she wants to know what his weight has done. If he loses too much in one day (didn’t really say what too much is though) or has any other problems, he’s to stop and call her. This drug flushes potassium out so she wants him to eat a banana or drink orange juice every day. That’s really a switch for him since those have been banned for months.

Yesterday he weighed 268 and this morning was back to 272. He’s been eating pretzels as a snack, even though I’ve told him they are not something he should be eating (I didn’t buy them for him, either). He has justified it by saying that he’s “hungry” and doesn’t know what to eat. Well, there is fruit in the fridge, there is a container with cut up celery and cucumber slices, there were baby carrots (we finished them last night) and there are frozen vegetables in the freezer. All he has to do is choose those instead of the other stuff.

Last night for dinner I fixed tomato slices, asparagus, and catfish nuggets. The catfish was nasty and neither of us could eat it so I tossed it. I ate more asparagus, added some celery and cucumber slices and left it at that. Ron ate his tomato slices, a few cucumber slices, and one piece of celery - and then came back into the kitchen for more food. He didn’t want more “good stuff” and instead fixed himself a toasted bun with peanut butter and jelly, and then a ham sandwich with Swiss cheese.

I told him this morning that I wasn’t giving him a hard time, but I’ve done all I can do for him and he’s got to start making better choices when he’s hungry. I said the ham has too much sodium in it. He said “but it’s low sodium ham,” to which I replied that it’s LOWER than regular, but not LOW. We actually had this same discussion last time he wanted ham (this stuff is $9.00 a pound).

I know that it’s a lot of sacrifices for him and it’s not any fun. But, I’m making the same sacrifices. I’ve cut out all of the stuff that he cannot eat from my diet as well. I was hungry last night, too but I chose to eat more veggies instead of things that I knew would raise my weight and/or sugar (I was down 2.2 pounds this morning). Those are things that he’s got to take into consideration. (I know I need to go to the grocery store but couldn’t until payday, which is today. I cleared about $300 less than usual because of his medical appointments for the past two weeks – and no matter how you slice it, that hurts the bottom line. I have to pay bills and then see what is left over. Until July 1st, there is going to be slim pickings at our house and we all just have to deal with it.)

On Monday, June 16, he saw his foot doctor. The hole is getting smaller in circumference but not any shallower. In fact, it may actually be deeper. It’s hard to tell because different people measure it differently each week. We’ve been told the main hole was a little over 3 cm and had healed up to about 2.7 cm. Another time, the hole was fan shaped and one area was 1.9 cm and the other was 2.5 cm. Now, there’s a channel with a deeper hole that measures 4 cm and the shallower part measures over 2 cm. We’re just not sure but we do know that it’s not getting any smaller.

Dr. Heady says he’s at a loss as to what to do next. We’ve done everything that he’s instructed us to do. He is hesitant to go back in and re-open it to do another debridement but he may, in fact, have to do just that. Our next appointment with him is on June 25. Ron will have his Procrit injection first, then see Dr. Peterie (infectious disease doctor), and then go to Dr. Heady’s office. Dr. Peterie cultured the wound this past Wednesday so maybe he’ll be able to tell us if the MRSA is gone.

On the 26th Ron will see Dr. Francisco and find out what the heart tests revealed. We do know that his ejection fraction is only 40% (normal is 70%) so not sure what the next course of action will be for that.

I think he’s a bit depressed over it all. He’s been off work since early February and worked only sporadically from December until then. He’s out of FMLA for the year, he’s almost out of medical leave (supposed to return to work on August 1), and sees no end in sight. We have applied for social security disability for him but at the earliest he would get any money is mid-August. That is if he is approved with no problems and I’m sure social security does not work that quickly. The short-term disability payments he’s now receiving through his employer will cease before then. And, if they get wind that he’s trying to retire they’ll probably stop them anyway. It’s quite the mess.

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