Coming Home

As you all know, I was supposed to start chemo on Tuesday. However, there was a huge change of plans.

On Monday, we got a phone call from my nurse here in Minneapolis who said that one of my tests had come back with some very bad news that could effect transplant. We met with one of my doctors on Tuesday (the day I was supposed to start chemo) and basically told us that transplant is now off the table for now. Here's why:

I've been getting frequent transfusions for probably close to two years now. The downside to getting so many transfusions is that blood is filled with iron. A normal person has a certain amount of iron in their body that will never go away. When transfusions are given, more iron is given that can build up and end up causing iron overload, which is what happened with me several months ago. My body has tons of extra iron and no way to get rid of it. This can be harmful because iron overload can cause problems with your liver, spleen, etc. I started a drug called desferal back in august to help lower my iron levels. This is the only way to decrease/get rid of iron overload. When we started the transplant process we tested my iron levels and sent them to my doctor here in Minneapolis and he said that it wouldn't be a problem for transplant. Unfortunately, now he's telling me it would be foolish to transplant now because my iron levels are so high.

Sooo....what now? Basically I have two options.

1) Do the transplant now despite my high iron levels. That would double my risk of death, putting it at about 60%. My high iron levels can lead to fatal problems during transplant. There is no way to treat the liver problems that could occur within the first 20 days of transplant.

2) Go home and do iron chelation (the only way to lower iron levels) for several months/ up to a year. This would require me to live with a needle in me 24/7My doctor said I can't go more than a year without transplant so the hope is that my iron levels would lower enough in that amount of time. However, he says I only have a 50/50 chance of that happening. So, if I go home and wait a year, I could be in exactly the same position that I am now. The risk of waiting is that my health and moral has been deteriorating for the past several months and waiting longer can put me at an even greater risk. IF my iron lowers enough then my risk of death would only be 10-30%. My doctors "say" it's my choice. But, I would never ask my doctor to do something he isn't confident in so basically the decision has been made for me.

So basically the decision is #2. I'm coming home. Hopefully on Saturday. The next several months/year will be spent on the medicine 24/7 in hopes that we can get my iron levels under control so that I can return and get a transplant. I will not be returning to school and now I can't even start college on time. This disease continues to ruin my life. As you can see, I'm not very happy about the situation. I was originally diagnosed 5 years ago and have known for several years that a transplant was unavoidable. I literally got within 24 hours of FINALLY starting this process in order to move on with my life as a normal, healthy human being....and it was ripped away from me. Again. Now I will wait. Right now, I'm feeling pretty devastated, depressed and hopeless. My family and I mentally and emotionally prepared ourselves for this difficult journey, we got rid of our cat, packed up our things, accepted gifts from supporting family and friends and left everything. To now postpone this for several months is unfathomable. When will I get a break?