Wednesday, January 28, 2009


Well today we had our appt with the dr we chose as our PCM for now.. After waiting around an HOUR we were seen. Blech! Took forever. Anyway we talk to the nurse (the normal how are you feeling, what are you here for, basic medical information, do you smoke, drink, and caffeine usage (that's a new one!!). Finally the dr comes in and we chat with him.

I had brought our drs notes with us with CBCs, biopsy notes, etc. I then tell him who we've been talking with and gave her phone number and fax number. The dr said that they would fax off the referral today! WooHoo! I hope it works! :-)

So I am going to call tomorrow to see if they received it and what is our next steps! So that is the update for now! :-)


Well we finally got a policy number.. Then we find out that we have to pick a PCM and have them refer us to MD! UGH! So frustrating...

So we finally find a dr here in town. James calls them and gets an appointment. Only we have to have our cards! Well, supposedly they were sent on the 16th and we still haven't gotten them! Then we find out that they won't be good as we have to have cards with the PCM to be good! WTH! So the ones we get will be trash.. Thanks!

So we call to have the Insurance people fax information to the drs office. Well the insurance people won't fax confirmation, said to have the drs office call them. Call the drs office to learn that they won't call! UGH!! So finally the drs office lets James talk to billing who called the insurance people and have the information.

So all of that for our appt Wednesday morning at 11am. Let's hope we get the referral. I did fax the information to MD Anderson, so we'll see! This is too UGH!!

As far as how is James doing.. He is great! He is holding up really good (besides frustrations!) and is staying fairly healthy! He and I are both ready to get done with treatment, but we'll hopefully be able to get the ball rolling in the morning! I think that's it for now! :-)

Friday, January 16, 2009

Today's Flushings! LOL

Today we went back to the Topeka VA so that Marlene could look over things and get his caps changed. She sent us home with the stuff to flush his catheter with and also with new caps, in case I need to change them again before he gets into treatment. She also looked at both insicion sites, and the one by the neck looks great! The other one is doing as it should, but she is thinking the stutures should be taken out. She will be doing more research and told us to call back Tuesday afternoon and she'll let us know if they stay or go.

James says he feels a lot better now, so that is really good! :-) We also talked to his superior HR person about the insurance. For some reason it's not going through, so they are having high level people work on it and we should have something Monday. I really hope so! :-)
Oh, and we saw Dr. Stone today too. He looked at both spots and thinks they look good. He said that if we need anything else, let him know! We also got the forms we need to fax to MD Anderson so that is good! Now to fax them and send the policy number, and we should be good! ;-)

I think that it all at this time. Thanks again for all the prayers and postive thoughts! I really believe they are helping! :-)

Tuesday, January 13, 2009

Insurance Blech

Well not too much since last report. We went to the VA tonight and got his Catheter flushed. We've got conflicting reports on whether it should be flushed daily or every 48 hours. Still not sure, so we will do one or the other. Hopefully they will just send home the supplies so I can do them for him. The nurse tonight said that he is surprised they didn't already do that. Hmm..

He called the benefits people today. They said the paperwork hasn't been pushed through and they aren't sure why! :-( We should have already had the cards! So he told them we have some medical things going on, so they are supposed to be making it urgent which will still take 48 hours! UGh!

Otherwise things are about the same. He's feeling a bit better, but still weaker than before the diagnosis. This weather isnt' helping, but what do you do in Kansas, right? LOL Thats all for now I think! LOL

Sunday, January 11, 2009


Today we had James' catheter flushed. We had to go to the ER to get it done since no offices are open on weekends! LOL The ladies there that took care of James were really nice! I was really pleased.

We got back there and at first they weren't sure what they were supposed to be flushing. I explained it to them and told them it needed a regular saline flush and what the catheter was. They then understood and took care of it.

I asked about the bandages since we had ran out of the clear things that go over it (tanagarm or something like that). They then cleaned the area around where the tube goes in and put on a fresh dressing.

James later said it felt like fire ants around it! :-( Poor guy! I felt bad for him! I noticed later there was a bit of blood so maybe that on top of the cleaning stuff felt that way? Not sure. He said it stopped.

Then he has been feeling really tired tonight! :-( I hope he will be felling better and have energy! I need to call the benefits place tomorrow to see if we can get to MD Anderson! I really hope it works out! I'll update tomorrow probably!

Friday, January 9, 2009

Nothing new really

Well since I last posted, James is doing well! :-) He's feeling fairly comfortable, it's just taking some getting used to. Especially the tape to cover the dressing! Poor guy! ;-)
I finally heard back from MD Anderson. I am supposed to call our insurance to make sure they will allow us out of state, and the paperwork will start rolling! I hope it goes through!

Then the VA called too. They were talking about flushing the catheter. I had asked at the time of insertion and they said once we started treatment it'd get flushed. Well our nurse believes it needs flushed daily so she's investigating and will call us back. I should know something soon.

Did I mention the email sent by a lady at the VA? I still don't know who she is which is probably good. Otherwise she'd hear a thing or two from me. She said that I said we were waiting and Jerkwad thinks we need to do the treatment, so we need to. It'd be nice to know who she is if she's gonna be sending stuff like that out! IGITS! ;-)

Otherwise, same old same old, which is good. The bleeding around the catheter has slowed down/stopped now. Not that it was ever gushing, but you know. That is a good thing. i'm not having to change the dressings twice a day which is nice!

I will let you know when I know more. Right now it's limbo!

Tuesday, January 6, 2009

I didn't get arrested! ;-)

Last night was a sort of night of discomfort/ and trying to get used to having something hanging out of James' body! ;-) When we got home he took some Tylenol, but it didn't do anything really for the pain/discomfort. So we found some pain pills that are like Tylenol just stronger and he took them. They help a lot! (He had these about a month ago from a biopsy that was done, so they were his! LOL)

I changed his dressing last night because I could see some of the blood from the procedure, and he was uncomfortable so we thought we'd fix it up. The 3 tubes that pertrude that the nurse had taped to his chest actually had had the main tube bent and I think it was pulling. Once I realsed the tape, he already felt some comfort! Thank goodness! ;-) So I got him all cleaned up and put to bed. That was interesting! It took him quite a bit before he got comfy, but finally was able to sleep after a couple adjustments!

This morning he was just a bit tender but not too bad. So I bagged him up with sandwhich bags for his shower. Then cleaned up the sites again! The lower one had bleed again, but seems to do that whenever the tube is slightly moved. Hopefully that stops soon (although the bleeding is really minimal, we would rather none!). He was feeling good for most of the morning too, and best on the road to the VA for the dreaded appt.

Well, we were running behind, and not minding at all, so got to our 11:20 appt at 11:40! ;-) James gave his vitals and they were great! The nurse and his co-workers all keep saying how he doesn't look sickly at all!! Well 55 minutes later we got called to our room to visit with dr!
Well we were placed in the room across from where the drs hang out (and this room was MUCH better than the last one.). We were hoping to see Dr. S to talk to him and I saw him walk by. He then saw me and waved and shortly came in! It turns out Jerkwad got sick and went home early (Darn it! ;-) ) and so Dr. S was taking his place! WOOHOO!!

So I told him I had done the patient self referral to MD Anderson and was waiting to hear back. He KNOWS how I feel about Jerkwad and completely understands and thinks good things about my plans! LOL He said that if I wanted him to he could call them and try to get things rolling! I said "Please!"! LOL He said that he'd call today and get back to me tonight! I can't wait for that phone call! Needless to say James is ready to start treatment Monday and we're hoping to hear back about MD And. and get him there by then!

Hopefully it all works out! ;-) Dr. S is so understanding and keeps things in good perspective! We couldn't have asked for a better person to talk with! Oh, and while in the appt MD Anderson called. Of course we didn't get the message until we left the hospital since our phones had to be shut off! Blech! We called her back and just waiting to hear. When I hear something I'll be sure to let you all know!

Thanks again for all the support, prayers, thoughts, etc. I really believe they are working for us and will continue to do so! Thanks again! ;-)

Monday, January 5, 2009

Catheter Day

Well today was Catheter day. I received word around 10:45 that the one VA had received the tube and so the procedure was still scheduled for 1pm. We arrived shortly after 12:30 and went to the floor.

While in the waiting room we talked with several nice couples. On the elevator ride up a patient was there. I asked her how her treatment was and such and see said the nurses are nice but they make a lot of mistakes! Oh my! That right there secured my belief that we should be treated elsewhere!

James went at about 1:30pm to get the IV in before hand. The lady couldn't get the IV in his hand so did it in his right elbow area. She said he was scarred up there?? Whatever! LOL He came back to get me and we went to the next waiting area.

The dr came back and got us and explained the procedure to us. Basically they numb up the area where they are working and then insert the catheter through the vein that runs from your neck to the top of your heart. He explained the possible complications from it, but said "Knock on wood I haven't had that happen and I've done it for a long time." That was reasurring to a degree! ;-)

Then they brought him in to do the procedure which would take about 30 minutes. That was at about 2:05. At about 2:45/2:50 they wheeled him out and brought us to recovery. The ladies there were really nice and talked to us. I was supposed to leave after they got him situated, but the lady let me stay! We had to stay for an hour, then they would let him go.

We let right at 4pm and came home. James is in a bit of discomfort and feels like a freak, but otherwise is good. We were told he could take extra strength tylenol for pain, so he is. He can't get the sites wet, and they gave me more bandages for it. The staff today were really good!
Tomorrow we have an appt with Dr. Jerkwad that our original VA set up. I keep trying to get James to reschedule it until after we hear from MD Anderson this week, but he hasn't yet. Please pray I don't get arrested tomorrow for punching out a dr! ;-) James is ready to put him in his place! I think that is really it at this time! I will update again tomorrow! :-) Thank you everyone for your support! It's much appreciated!

Saturday, January 3, 2009

More appt news

On Monday James is scheduled to have his Hickman Catheter put in. That is only if the tube is brought to the VA. They originally (I guess??) wanted us to pick it up from the VA we most often use, only since we moved they said we could do the CBC Blood test at the local VA instead. So we didn't drive the hour to the other and obviously didn't get the tube.

So on Friday I got a phone call from the VA. The lady asked if we had the tube. Of course I explained we didn't and why we didn't (which I didn't know we were supposed to pick it up, Thanks James! LOL). Then I asked her if she knew what the appt. on Tuesday was that the automated message told me. We didn't schedule one with them so I wasn't sure.

She looked it up and said it was with Dr. Jerkwad. UGH! I asked if she knew what it was about and she connected me to another office while she looked into the tube issue. I talked to a lady that was so oblivious to anything! I asked her what the appt was for and she said she didn't know but we were meeting with the dr. I get this, but what for, is there anything going to be done? She said "We're just a clinic, we don't do anything here." UGh! Stupid people. Didn't get anywhere with her.

The first lady called me back and we talked for a bit. The dr that diagnosed us was at our old VA so he is supposed to bring the tube with him on Monday. If she doesn't receive the tube, she will call me. IF I don't hear from here, she left me here number to call her! Nice lady! When I told her what the lady said about the other appt and why I didn't like that dr, she completely understood! She said that she wouldn't either and he should answer me! She also gave me a name of another dr that we might ask for or told us to demand we get to use our original dr istead of this other one! Glad I'm not alone on this!

In other news, I sent a patient referral self form to MD Anderson in Houston, TX. I am hoping they are able to let us go there instead so we don't deal with dr. Jerkwad EVER again! ;-) Also James is now retired from the military! It's a whole new year of lots of changes! I think that is it for now! I will update as I get more information! :-)