Friday, April 8, 2011

Glenn's new role as patient

Hi everybody. I decided to use this medium to keep everyone who is interested in Glenn's health situation informed. Seems like the most efficient way to keep you all informed.
A year and a half ago, Glenn had his regular physical exam and routine tests showed too much protein in his urine. He was referred to a nephrologist who did tests to find out what was going on and to rule out polycyctic kidney disease, which his dad had, and his sister, Adrianne is dealing with now. That was ruled out but there were some results that needed further investigation. That Dr. didn't seem to be concerned enough to keep testing so we went to Adrianne's nephrology group. After many tests, including two kidney biopsies and a bone marrow biopsy, referral to a hematolgy oncologist, (blood cancer Dr.), and a year later, we finally got a diagnosis: Light Chain Deposition Disease. You've never heard of it??? Well, we were totally in the dark, and his nephrologist has never had a patient with this disease. So don't feel alone, that makes all of us! Basically, part of a plasma protein breaks off, clones itself many times, and damages different organs. His damage is in his kidneys, and he is in stage 3 renal failure, (actually, I think with he last labs he had done, it looks like he is in stage 4 now, Stage 5 is when a person is started on dialysis.)
He was referred to Shands in Gainesville, FL, where a plan of treatment was made: chemotherapy and stem cell transplant, to begin relatively soon. This past week we went to G'ville for three days of evauation to be sure he is healthy enough to under go the treatment. In two weeks we go back for several days of preliminary treatment. A week later, we will go back, be admitted and receive the chemo then the stem cell transplant. Because the chemo wipes out all his immunities and his blood count goes down to almost nothing, he will stay in the hospital for 3 weeks, receiving blood products as needed, and basically stays in isolation. After that we will remain in G'ville for about 2 more weeks for daily outpatient treatment. When we are sent home, he will have to stay away from people for several months, wearing a mask whenever he goes out, to prevent infections.
So that's where we are now. He feels fine, aside from a little fatigue and leg swelling and his blood pressure remains difficult to control because of the kidney damage.
I probably won't be posting much for the next two weeks until we start the next step in the process. So many people have been such an encouragement to us in every way and reassuring us of all their prayers going up for us. We have encouragement that this treatment  hopefully give him more years with us than we originally thought. We feel so blessed to have as many people as we do who have expressed love and concern.  Thank you all so much.   Eda

1 comment:

  1. Eda & Glenn,
    Keck and I love y'all so much and we are praying for you all. I praise God that you have Him to lean on during this time of uncertainty and hardship you are coming face to face with. I hope you both know, as well as the rest of your family, We are here for you ....whatever...I mean whatever you need. Please, please call us for help...we have lots of hugs and are able and willing to do what is necessary to be here for you.
    Heather Lynn