8/30/2012

I have discovered that I don't like blogging when I have nothing positive to say and unfortunately that has been the case for the last few months.

I am on dialysis. I started at the end of June. Unfortunately my fistula (Hemodialysis fistulas are surgically created communications between the native artery and vein in an extremity) did not mature properly so I had to have a permcath installed. This functions as a bridge device during fistula maturation or a long-term vascular access for hemodialysis. I am having surgery to redo the fistula in the next couple of weeks. Keep your fingers crossed this one takes. I put off dialysis for as long as possible and I feel better overall.

The amyloidosis is not in remission so I am not eligible for a kidney transplant. The best that can be said at this point is that it is being managed. I would like to be more aggressive in going after it but when we have tried that my platelets have dropped. Platelets help the blood clot. I am thinking it's time for another trip to Mayo but my dialysis schedule complicates things and I'd have to make arrangements  to have it done there. I keep thinking it would be easier if I was accessing the fistula as opposed to the permcath but I am weeks away from that.

As I mentioned, the last few months have been challenging and the summer has flown by. We take Ben to The University of Denver this weekend to start his freshman year. He seems ready and I am so proud of him but he will be sorely missed by us all.

To those of you who follow the blog and have provided meals and rides, a big thank you. It is so appreciated. I am in dialysis 3 days a weeks for 3 and a half hours and I am pretty drained afterwards. 

2/29/2012

Never will I be so happy to see a month go! February has sucked. I won't go into the litany of all the things that have gone wrong this month, just trust me when I say March 1 can't come fast enough.

My amyloidosis is back with a vengeance. I am back on chemo, this time Melphalan. This is the same stuff they had me on for the stem cell transplant. I begged Dr. Buadi not to put me on steroids and he agreed to try it but I’ve found a new doctor here who strongly urges me to reconsider. So I have been looking fondly in the mirror trying to enjoy for the moment the face I have in preparation for the bloating and misery of life on steroids.

I don’t want to go into all the details of my lousy prognosis from Mayo. I’m exhausted and depressed by it. I feel like it’s 2 steps forward 3 steps back. Whereas before I had Amyloidosis with kidney involvement I now have Amyloidosis with kidney failure.

Here’s the thing. I am consulting with some new doctors at Loyola for second opinions and I am feeling less hopeless about things. However I am not in a great place in dealing with this latest spate of bad news. I’m working on it but it’s a process and Amy and I have been at war now for three years.

While I hope I will be kept in your thoughts and prayers, please, please, please, I beg of you, no platitudes, nor emails of people handling adversity well or even ones that are supposed to be life affirming. I am in a place right now where all these things do is make me feel worse about how much trouble I am having right now accepting all this. I will get to a better place. I am getting help and as I said feel more hopeful. All I need from my family and dear friends is understanding and patience. I good joke or two wouldn’t hurt either.