Better Now

I was trying to wait until we got the latest lab results prior to posting something. Tuesday we had the first appointment since release. It was a bit crazy. Apparently it is called "clinic" so that implies a huge wait time. It was nuts!!! They wouldn't do the labs prior to our appointment which proved to be a screw up.

Tues. night Sean got a call about his potassium levels being dangerously high. He was required to drink some prescription medicine (which is nearly impossible to find in Clarkville) to help eliminate potassium. Then off to a local doctor for blood work to check to see if it's back to normal. During the call the doctor kept asking if Sean's heart was well and did he feel okay. It is difficult to go from you are near deadly numbers to complacency as we spent the last two days tracking down results.

So with no one calling us back today, we went to our local doctor that drew the blood and told them we needed the lab results. With those in hand, we know that they are better, but still no input on if he's to maintain a low potassium diet or resume a regular diet. So he called his aunt to get some advise. He will stear clear of beans and potatoes, but will have tomato on sandwhiches. Then on Tues. we will clarify what kind of diet if any he must maintain.

Out of this, we have insisted that labs be done prior to the appointment so we can discuss the results as part of the visit. Otherwise it seems too very stupid to go all the way there. The point is to be relaxed after a visit not relaxed then all in an uproar. When they call at night and you are shocked and think of questions later. The downside if there is one (of drawing labs prior to doctor visit), is that Sean might have to be stuck a second time IF the doctor wants additional labs drawn.

This whole thing is getting confusing. We used to have a doctor and then a coordinator. Now we have so many doctors and one main number to use. I am not quite sure if we are to contact each doctor depending on the issue or this main number. Whatever the procedure, it was not working today. We called all numbers, emailed and got no response until we kept calling. I don't want to be "that" patient, but like I said, near "deadly" (the word they used) is a bit scarey and requires some contact. So you know I'll be asking who gets called and for what so this doesn't happen again. I'd also like to know the time frame for a call back.

Tuesday (12th) they are supposed to remove staples and dialysis port. It's time for the port. It started getting a little red/irritated yesterday and today. The following week on the 21st, Sean will see the kidney doctor, have a bone scan, have a stint removed and see a urologist. That will be a busy day! After that, if things look well, I think he'll go to his appointments without me. I might go to some a little later. Lab work from Vandi goes onto the website so we have access to it almost immediately.