Had to visit the emergency room again Sunday night. I started passing a fair amount of blood and clots through my bladder. Since 99% of the urine drains into the nephrostomy bags, this caught us off guard a little. We called the on-call doctor and she advised, with my low blood counts and the fact we did not know where the blood was coming from, that we had better get it looked at. After our visit with the Urologist today, we are going to see if begins to let up or gets worse. Today was better with the blood, so hopefully this was something that began to bleed from the Lovenox and drained to the bladder. So we will stay the course for now and hope that it continues to lessen and stop.
B.

Yea Kidneys!!

Nothing that exciting about my kidneys this month, just trying to give them a little encouragement. The hemoglobin dropped a little this week and I will have to have it tested next week again. It dropped from 10.0 to 9.4. If it gets back down into the 8's, then I will have to borrow some more blood. This will likely settle down into a quasi-scheduled activity. It is an amazingly different energy level from the 9's to the 8's, and especially the 7's where I found myself a few weeks ago. The creatinine that monitors kidney function is holding very steady at 1.0, which is a normal reading, and exceptional considering my right kidney is non-functioning and very likely to remain so. The big battle that wages in the back of my mind tends to be the potential for bloodclots. I have been injecting Lovenox for the last 6-7 weeks. It is a twice a day injection in your stomach and will need to happen for at least 4-6 months. It is a small needle, so it is more of a nusiance, like a small bee sting, but it does get old pretty quick. I will go back on Wednesday to the doctors who implanted the bypass (nephrostomy) tubes from both kidneys. I have a tube coming out of my back at each kidney. The tubes each drain to a bag. That is how I have to urinate now. Since we can't shrink the lymph nodes at this point, removing these tubes could lead me to a repeat of my weeklong hospital stay in December of last year. So, while I wish they could install stents and make this an internal deal, it is not likely to happen. Not now, and most likely, not ever. Other than that, things are going pretty well here. I am still writing for the kids, and trying to take one thing at a time, one day at a time. I wish all of you my very best!
B.

There isn't much to report lately. My hemoglobin has been maintaining betweeen 9-10, which for most people would be low, but I seem to do okay with. I don't have a ton of energy, but enough to do the things that I need to. I still get tired in the evening and I need the extra sleep. But at least I am up when I want to and need to. The kidney seems to be operating fine. I will go back in to have the Nephrostomy tubes looked at in early Feb to see what the long term solution for drainage will be. The retaining of the fluid from extreme swelling of lymph nodes is what caused that part of the problem, so unless we know that the swelling has decreased drastically, which we don't right now, then we need a backup plan to make sure that I don't retain fluid and end up back in the hospital. Other than that, things are pretty quiet right now and I like it that way.
B.

I vant your blood!!!

This week all seemed to be going pretty well except for some strong fatigue on Monday and Tuesday. I was in anyway for blood work so they checked kidney function and hemoglobin to see if I was still anemic for some reason. The kidney function looked great. Better than it had since before the hospitilization before Christmas. The hemoglobin, however, for some unknown reason dropped to 7.1. I definitely noticed a drain in energy. They decided to give me 1 unit on Tuesday and one on Wednesday. I started to feel a little better after the first one, and a lot better after the second one. Hopefully, we can get my body to make the adequate number of red blood cells and get away from the transfusions, but at least I have a good option if I need it. It is a great reminder to me, even though I can't donate now, please help to keep these blood banks full. It is a great way to help your fellow man, even if you don't know who it might be. It is used for so many emergent and non-emergent situations, but it truly saves lives. If you see a blood drive, and it's been awhile, and you have a couple extra minutes, picture someone you know or love that might depend on this type of gift and give a little bit of yourself.
All my love and thanks!!
Brian.

Christmas Love

The events leading up to Christmas this year, including my week-long stay in the hospital have confused my state of mind. I try to keep things in today and not look too far down the road or project situations that can't be dealt with yet. So while I believe that overall I am still accomplishing these goals, the feeling of being not well and definitely not up to the standard I would hope for myself, causes me to feel a little more mortal than I want to. The thought pops up in the back of my mind about how many of these Christmas's do I get. The cavalier part of me says that I will fight and get as many more as I want. The realistic part says that if I see another one after this one, I should count myself among the very fortunate. I hope to feel better soon, and to be truthful, I do, day by day, little by little. But I also know that my treatment options have been reduced to a very few. And those are real long shots for me now. My reason for this post isn't to whine and elicit sympathy. It is to help my put some things into perspective as I go forward with my day and turn the corner on a new year. The thought goes that you always find out who your friends are when the chips are down. I wish I knew what I did to deserve the friends and family that I have, because I would have done much more of it. Our Mormon Church family, has just taken my belief in support, love, charity, support, and Christ-like service and exploded it into something that I could not have imagined if I tried. I am not saying this lightly. They have brought dinners, members to visit and pray, friends to distract the kids, heartfelt beautiful gifts for Christmas, and just their love to help us know that Heavenly Father is not punishing us, but is loving us with all of His strength through this necessary trial. I feel His concern for us and know that we are not going through this in the background of His Mind, but cradled in His Loving Hands. For non-religious people, that may sound far-fetched or even irrelevant. When you enter this type of situation with a young family and a young wife that you adore, I assure you, it is everything. And it is not just the feeling of God's love coming to me from a distance, it flows through every handshake, every hug, and every smile from those that know that we are meant to love each other. Everything else in life will fall into place if we have the type of unconditional love that true charity for our fellow man brings us. I am probably in a preachy place today and feel that I need to get some of this amazing gratitude for my family, who just loves me and the friends that I feel has done so much more for me than I have ever done for them. My Christmas message then is this, Thank you so much from the bottom of my heart. Not just for the gifts, but for showing me and my family how to give of ourselves and belong to a family and a church that stands tall for what it believes. And when the chips are down, and you are digging through the scattered remains of your life and belongings, a Christ-like family is there holding a Lasagna.
I love you all with all my heart!
Brian.
Merry Christmas!!!

The tubes started to work again and I had a good visit with the Doctor. We are still considering Chemo , but the blood levels and kidney function are having a hard time supporting it. We will continue to monitor and meet with the doctor on January 6, 2012. If I don't write again, Merry Christmas and all my love to all!!
B.

I'm off to what I thought was a regular visit to the doctor this morning to discuss chemo, etc, but now I have to find out what happened to the tubes and bags that collect my urine before they make it to the bladder. Last night about 3 am, both tubes decided to stop collecting urine. Fortunately, I am still piped the regular way also, so I was able to relieve the normal pressure, but hopefully this is something minor and doesn't land me back in the hospital, especially this close to Christmas. We will keep you posted.

B.