Sunday, September 21, 2014

September update

The antibiotics are done, and the fevers have not returned.  John's heart rhythm continues to be normal as well, but the rate is fluctuating.  It was in the 80s for a couple of days, but back up near 100 again today.  He is feeling OK enough to get out last night for a couple of hours at a birthday celebration.  It's good for him to see friends and hear encouraging words.

Dialysis is getting easier--less alarms and less stress.  Our garage is full of supplies, and we have one room dedicated to the process.  The machine itself is not very big:
Dialysis machine--the 'kidney' is the cylinder on the left

There are to points of entry on John's arm:  the arterial and venous lines

We have to monitor his blood pressure and the pressure in both circuits through each treatment.  John records numbers every half hour or so.  He also records his vitals and his weight pre and post treatment.  One of the functions of dialysis is to take fluid off of his body, as his kidney can no longer do this.  He has to watch his food and fluid intake, as they can affect his heart and fluid retention.  

So, we are hoping that we can focus on just dialysis over the next couple of weeks, and that John is able to regain some strength and muscle mass lost over the past couple of months.  He is supposed to take in 81g of protein a day, and that is not easy!

Right now, John is with four 12-year olds at a trampoline park to celebrate our son's birthday.  I assume John is not bouncing, but it is thrilling that he is well enough to take them for 2 hours because one month ago he could barely climb the stairs in our home.

One of John's cousins set up a fundraiser online for us.  We are grateful, as John is not working and we are not sure when he will return.  Of course the house continues to need repair, and the medical bills are mounting...  but we try and stay focused on the important stuff:  health and family.  We still trust that this will all work out, and try not to spend time worrying about the things we can't control.  Fundraiser link:

To all our wonderful friends and family-- thank you for all the support in the many forms it arrives in--snacks, heat, visits, dialysis-helpers so I can go to school functions, silly texts, enthusiasm in seeing John out and about, driving my kids around, listening to me complain as I mis-direct stress, piles of new school clothes for the kids, checking in here,on the blog,  getting tested to see about donating a kidney, sending thoughts and prayers, and all those offers of help that I am not organized enough to make use of yet....thank you.  

Looking forward to the fall foliage!

Saturday, September 13, 2014

Last dose of vancomycin

John is just finishing his last dose of the IV antibiotic vancyomycin right now.  He has been on the medicine for just over one month, and the symptoms of the mystery infection have disappeared. His heart rhythm and rate are within normal range again as well.

Now back to the regular business of getting the hang of home dialysis and focusing on the next step:  treating the Hepatitis C.  That treatment is scheduled for December.  It will be a nice break to have 'only' have to focus on dialysis.  

He had a rough few days with gout in his feet and hands, but that is also resolved with some extra steroids.  Overall, baby steps forward recently.  

After the HepC is gone, we will concentrate on the end goal:  finding a viable kidney donor!

Thanks for all the thoughts, prayers and well wishes.  And the muffins and sauces and crisps.  ;-)  Keep them coming!