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Day 24, more blood tests
April 9th, 2008 by Chenell

Today Chris had an appointment to see his family practice doctor to have some blood taken and to make sure he didn’t need any blood. We will have the lab results tomorrow and we’ll then know if we need to continue doing this once every 1-2 weeks or once a month. If Chris’ numbers are back within the normal ranges he will only need monthly labs. While his numbers are still below normal they want the tests done more often.

We went to a new doctor than we normally go to, mainly in part of the previous doctors’ inability to get Chris’ original labs to Johns Hopkins. Thankfully, a new medical building just opened up less than a mile away. Before the closest clinic was 12 miles (one way) from our place. This will be a lot easier for us especial if we have to do the blood draws more than once a month.

So now that we’re back home I had the time to sit and crunch the numbers for this whole procedure. We didn’t given thought to the cost beforehand because honestly we felt we had no choice. It was either this procedure or a home with how Chris was declining. Before this treatment he would have loved to have been what he was like when we were on our road trip and summer vacation just 6 months earlier!! So not including all our turn trips for follow ups this whole treatment has wounded up costing us upwards of $10,000. This doesn’t include the lost wages from having unpaid time off from work. I will get a more detailed break down of expenses so that you may plan accordingly. I am lucky enough to have Quicken and I can track things very easily and I’m a nerd like that. This is a godsend come tax time. Our medical deductions this year are going to be astronomical! This year we owed because we didn’t take enough out of Chris’ disability insurance payments. Hopefully this year we get somewhat of a return.

I am happy to say that Chris seems to be improving every day. Right now the pain in his right knee is keeping him from being very active. He is finding himself getting very bored sitting around the house. Not that he wasn’t before, he is now a bit stir crazy and wants to get out. Yesterday he actually brought our wheeled trash can in from the curb. It may not sound like much but it’s something he would not dare attempt before this procedure. Chris is taking a more active role in preparing our meals. Before the MS really messed with his appetite. He wouldn’t be hungry until I put the food in front of him. We are continuing the fresh fruit and vegetables in our diet. Chris is still not over the anemia so the iron does him good.

I don’t know if I mentioned this before or not, but the tightness in Chris’ muscles has let up significantly. He has reduced his Baclofen (muscle relaxer) intake by half. There were times before this treatment that I would put every ounce of energy I had in getting his leg to bend or to stretch it. He was so tight that I could barely budge it will all the effort I had. This is something I wish I could have gotten video of for you beforehand. It would be quite a noticeable change for you to see. Chris’ right ankle has always been swollen since the onset of his MS. It is still a little swollen now but it’s better than it has been in years. Fluid tends to build up in appendages that you don’t use as much as you should.

I really wish I had more to write about. Life is pretty boring right now and we like it that way. Chris has a million ideas and projects planned for around the house. The hardest part is telling him he has to take it easy and wait. The last thing he wants to do right now is sit still!!

I’ll write more tomorrow after we hear back about Chris’ blood test results. It’s supposed to be cold and snowy tomorrow so it will be nice not having to go anywhere. I’ll be keeping warm in the glow of my computer monitor, diligently searching for my next job!

Till next time.

Chenell

11 Responses to “Day 24, more blood tests”
  1. MaggieMae Says:
    April 10th, 2008 at 6:49 am

    I’m so relieved to hear how you are doing. This is wonderful.

  2. Mike T Says:
    April 10th, 2008 at 7:55 am

    I’m sooooo happy things are going well for you

  3. pvns2005 Says:
    April 10th, 2008 at 8:56 am

    Keep on Rockn and Rolen Bro..

    Chris S.

  4. Jamie Says:
    April 10th, 2008 at 9:53 am

    Thanks for the update!

    We’ve had a bit of bad news in as much as there was a processing error at Hopkins and for the last five weeks whilst we ahve been waiting for UH apparently the application hadn’t even been made.

    So things have been pushed back significantly.

    Frustrating doesn’t even cover it!

  5. Lew (Loobie) Says:
    April 10th, 2008 at 4:36 pm

    Man this is good to read. I’m waiting on my Tovaxin to work (1st ext. shots last week), but I’m REALLY excited that you are feeling better in places that haven’t felt good for in a while. Any type of recovery has got to feel GGOOOOOODDD!! whether you know it or not, you have become the poster child for many of us for this treatment. Thanks so much for keeping such good track so those that follow can know a bit about what to expect. I’ve been praying for you bro. Get that knee better.

  6. Jamie Says:
    April 10th, 2008 at 7:21 pm

    Great stuff.

    It appears there has been an error made at Hopkins and they didn’t actually submit our request to the insurance until yesterday.

    We expected to hear around now.

    Absolutely gutted.

    Built ourselves up, arranged time off work etc now it looks like another 4 – 6 weeks.

  7. Sharon Stew Says:
    April 10th, 2008 at 8:46 pm

    Wonderful to hear that you both are doing fine!! Keep all up.

  8. Jamie Says:
    April 11th, 2008 at 10:35 am

    UPDATE:

    Hopkins have pushed it through, UH have approved.

    WOO HOO!

    Amazing work from JHI.

  9. Jamie Says:
    April 11th, 2008 at 2:23 pm

    Update:

    JH have worked wonders and got UH to approve in around 3 days.

    Fantastic.

    Could potentially be there a week on Monday.

  10. pvns2005 Says:
    April 11th, 2008 at 8:26 pm

    “Chris Had MS.com”

    I like It…

    “MS BE GONE”

    Chris S.

  11. Sandy Says:
    April 13th, 2008 at 8:41 am

    Love that word HAD!!!! Makes me smile and brings tears to my eyes. You and JH made the miracle happen.