Hello Friends and Family! – The Latest Note From Jim!

Hello Friends and Family!

Thought I would send out a little mid September missive, now that Labor Day festivities are behind us.  Hope you all had a good holiday.  Just prior to the Labor Day break, our dear friends the Machado’s and the Thom’s hosted a wonderful get together for friends and family here in Lake Forest.  About 140 of us got together for a night of laughter and entertainment.  It was a great time, and it felt so good to be out and about with friends.  There also was a person helping people sign up electronically to be an organ donor now that the law has been update in Illinois as of January 1.  I think over 50 people agreed to become donors that evening, and it was great to see that much support.  Sue and I want to thank everyone that helped with the Lake Forest evening, it was a great event and a wonderful showing of community support for our family.  There is a group of college and sailing friends organizing another get together for Nov. 5 at Chicago Yacht Club.  Please mark your calendars as I hope to see you there!

Now that we are past the holiday, we are definitely back in high gear at the Armstrong house.   Kids are all fully entrenched again with their school work, and of course they keep their afternoons and weekends busy with a variety of activities, including, choir, dance, soccer, and a new addition field hockey.  We have some great carpool helpers which keeps it all manageable as Sue an I are no longer able to “divide and conquer” when it comes to kid’s activities.  We still find plenty of time to hang out together, and that is of course the best time spent!

Sue and I keep pretty busy as 24/7 buddies.  We make a point of getting out of the house for a few hours each day.  Sometimes it’s running errands, sometimes a long lunch, or even a long walk.  Neither of us have tried to make a run for it, so I guess all’s going well as we go through life joined at the hip!  It helps to have a partner that you enjoy spending time with.  Our routine will be the same as long as I’m on these heart pumps.

At our last weekly visit to the hospital (last Thursday) we were introduced to the young nurse that has the responsibility of cataloging all my medical records for the FDA and the maker of the heart pumps, HeartWare.  I made a comment that the records probably took a little time to compile.  She replied that I currently have a 6” thick binder of medical data and records as part of the medical study.  Fortunately she kept smiling so I don’t think I hit the nerve too deep!  Probably the most memorable part of our discussion was when she said how nice it was to see me up and about.  She and others in the hospital really hadn’t expected me to leave the hospital until after the heart transplant.  I had heard that comment other times, but for some reason it stuck with me this time.  Made me think about how sick I really was, which is something I really didn’t focus on before. I never really bought into the idea that I would not get up and about quickly, it’s just not the way I look at things.  The funny thing is the difference in how I look at my situation with a different focus from the doctors and nurses. I’m always anxious to move to the next hospital floor, stage of treatment, and now the transplant itself.  They take a much more measured pace as you might expect, and one that has the memory of how far we’ve come. They are never in a hurry, and make sure we account for every variable.  I guess we make a good team – I keep pushing to move on, and they make sure I don’t try to go to fast!

So at the moment we’re in a bit of a friendly stalemate.  I continue to get stronger, and the vast majority of excess fluid on my body has come off thanks to a diuretic treatment.  I’m down to a mean fighting weight of 160 lbs which is a far cry from the bloated post surgery Jim in the hospital that was over 210!  So physically I feel great.  The best part of having all the fluid off my body is that it makes it easier to walk, to sleep, and my appetite has returned to normal.  Over time my muscle mass will come back too.  So why I feel physically ready for the transplant, there’s still a number of measures the Dr. is watching before he’ll pull the trigger and put me on the list, hence the stalemate!   My kidney function continues to be good, but they would like to see it stay stable for a few more weeks.  They are also tracking a few other markers that need to be in line before they move forward, particularly some antibodies I developed to certain medicines that they need to use in the transplant surgery.  The good news is that they still see the end of September as a reasonable window for me to go on the transplant list.

So in the coming weeks we’re basically in a holding pattern so I probably will not put out another update until end of September, or if I get news that I’m moving to the transplant list.  In the meantime, we will continue to enjoy our days together as a family, and look forward to more days to follow.  Thank you to all of you that continue to pray for us, we truly appreciate the outreach.  We in turn will keep all of you in our prayers as well.

Until we talk again…….



3 responses to this post.

  1. Posted by nancy on September 14, 2010 at 9:50 pm

    I just heard about this as I have been involved with my own heart surgery saga (hypertropic cardio myopathy) at Mayo in Rochester, MN . Know that my thoughts are with you! You will come through this with flying spinaker colors.



  2. Wow! I just found the link to your blog for a posting Kevin did on Facebook.I missed the Chicago event this year with medical issues of my own. I had now idea!
    It sounds like you are doing great. Remember to build your strength for the final surgery. We support you out here, Jim.
    You have a cheering section in Florida!


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