DJ'S JOURNAL

FINDING A NEW NORMAL - PART 3

And continuing on now for the third part…..

*Sunday, November 21: Ron’s feet and ankles were still quite swollen when he got up. This situation has not improved at all during the week; in fact, it’s probably worse…..something to be discussed at Clinic on Monday. His neck and shoulder complaints have not improved either, and he has no idea where they came from in the first place.

*Monday, November 22: Driving through the fog at 615A, I took Ron to the train station so he could go to Clinic at the hospital. When I arrived at the hospital, I went directly to the Transplant Center, where Ron was in seeing his Coordinator. When he came out, we went up to the cafeteria so that I could have some breakfast. Believe it or not, we only had to wait a short time before we were called back to an exam room. Even more unbelievable, we waited an even shorter time before the doctor came in. WOW!!!

Ron expressed his concerns about the edema, the Prednisone, and his back and shoulder problem. After explaining the problems with edema, the doctor prescribed another drug that works in conjunction with Lasix. He declined to lower the Prednisone dosage and explained why. He also ordered an MRI to try to determine the cause of Ron’s back and shoulder pain. He DID say that the kidney was working well, but controlling the side effects of the anti-rejections drugs is the hardest part. That’s Ron’s biggest problem.

I then piped up with “When are we going to be able to get out of here???” He laughed a little, and I told him that we wanted to go to Rockport for the holidays. He did assure us that he didn’t see any reason why not. That was encouraging, but we still have 3 weeks to go. We’ll see!!! Before leaving for home, Ron had another Epogen shot to help his hemoglobin level. It’s at 11.1, and they’re trying to get it up to 12. He’ll have another on 12-2, at his next Clinic day.

*Friday, November 26: Ron’s ankles are getting better, and he said that he’s lost 7 pounds in the last few days, despite his Thanksgiving dinner. That’s a good sign!!!!

*Sunday, November 28: In a discussion over the last of our Thanksgiving leftovers, we both complained about the treatment that Ron has received since the transplant. The doctors that check him out are surgeons and don’t seem to have a clue about some of these side effects. Hey, it was my surgeon that okayed Ron’s release from the hospital the first time without a follow-up urine culture and without any take-home drugs. And then he landed right back there a couple of weeks later. I don’t really think that they LISTEN to the patient!!!! Ron’s infection is gone, but this edema problem is still present……something that’s been affecting him for a very long time, even before the transplant.

*Monday, November 29: Ron’s feet and ankles are much better, and his weight is down some more, much better than before this new drug. After we got back, his Coordinator called, but I couldn’t get to the phone in time. She left a message that Ron’s MRI is tomorrow afternoon. He says that his neck and shoulder are better, but maybe the MRI will show if he has arthritis in the area. We’ll see!!!

*Tuesday, November 30: Ron sure seems to be in much better spirits these days. His edema is subsiding, as is the pain in his neck and shoulder. We discussed where we would go after Rockport over the holidays and decided to wait until after seeing the doctor at Clinic on Thursday.

*Thursday, December 2: As usual, I took Ron to the train station early, came back, took the dog out, and got ready to go to the hospital myself. I went straight to the Transplant Center, just in time for the Coordinator’s interview. With some time before seeing the doctor, we went up to the cafeteria so I could have my breakfast. Back in the waiting room, we had to wait quite awhile before being called back for the doctors’ interview, unfortunately. Some days go fast, and some days go really, really slow!!!

Ron’s first interview this time was with a new Nephrologist. He asked questions, clarifying what Ron had already told the Coordinator. Shortly after this interview, Ron’s surgeon came in. Going over Ron’s “numbers”, he pointed out that Ron’s Potassium was down, but his Glucose was up, along with Cholesterol and Triglycerides. The new diuretic prescribed 10 days ago, 5 doses, caused all this. As a result, many changes were made, with doses changed and new meds prescribed.

As for our plans to go to Rockport for the holidays, the doctor agreed that the trip would be OK, as long as everything is fine at Clinic on 12-13. Ron would then not return until 1-6, some three and a half weeks later. By the time that we were all finished with everything, there was only about half an hour until Ron was to have his last blood draw, so we waited for that.

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That pretty much brings everything up-to-date with us. Our insurance Case Manager told me recently that it could take 6 months to get everything on an even keel. In our case, we’ve had some setbacks, to say the least, so we still have no idea when we will be “finding a new normal”. From now on, I will try to post our progress more often.