A Test of Faith and Endurance

Just when you think it can't get any worse, it gets better; then it gets worse before it gets better again. This experience is nothing if not a roller coaster and total test of faith and endurance for all of us.

When I last wrote, Ed was entering a two week period of intense physical strain and exhaustion as he endured the worst part of his GVH of the gut. There were days when he didn't think he'd be able to go on, but he did - with me dragging him on those days when he didn't have the inner drive to do so! We finally had a bit of a breakthrough where Ed slowly began to not feel as exhausted, and his symptoms began to slowly taper off. We were optimistic and things felt like they were starting to move in the right direction. Then the doctors noticed his liver values beginning to trend up. After removing any medications that could be aggravating the liver, they suspected that Ed may be experiencing GVH of the liver; to confirm their suspicions they ordered a liver biopsy this past Monday.

Every procedure has complications and this one is no exception. A patient having a trans-jugular (yep, they go in through the neck to get to the liver - weird!)biopsy of the liver has about a 1-3% chance of bleeding - and you guessed it, Ed had to be one of the special few and have the complication. A few hours after the biopsy, Ed was having some belly pain that wouldn't go away with pain medication. The doctors ordered an ultrasound and just as we were helping him up to get ready to go, he passed out. He had an extremely low blood pressure (70s over 50s!). The team stabilized him with fluids and he seemed OK. Then about an hour later, it happened again. This time he had a distended belly along with the extremely low BP. The team worked to get him stable again and this time, decided to transfer him to the Intensive Care Unit (ICU). The ICU has better and more sophisticated monitoring as well as the equipment and experience to deal with nearly any situation where Ed's life was in jeopardy. A very scary prospect at the time, but absolutely necessary.

After getting Ed to ICU and transfusing blood and fluids to get him stable, he had a CAT scan which revealed a large amount of blood in his abdomen resulting from bleeding on the underside of his liver. Fortunately, the bleeding had largely stopped by late Monday night, so no additional procedures would be required. This was a major relief to me - Ed is so immune-compromised that any additional procedures will greatly increase his risk of infection. The doctors assured me the best approach was to watch and wait - the body would eventually reabsorb the blood in his belly. Meanwhile, Ed was in quite a bit of pain - apparently blood in the abdomen is very abrasive and irritating - but it was well controlled with pain meds; he slept quite a bit the first few days.

After a few more ups and downs, Ed was finally released from ICU Friday and returned to the BMT unit. He's still bed-ridden for a few days; the doctors want to be sure the bleeding has totally stopped and will monitor his blood counts to be sure. Meanwhile, his Liver values which have been trending back down are stable - not normal yet, but stable. And the GVH of the Gut appears to be getting a bit better too as his symptoms there are also slowing down. So, we "might" be trending in the right direction. But, Ed now has some fluid on his lungs and is very weak from his week in bed, so he'll have his work cut out for him once he's off bed rest.

So you see, for the few steps we get to take forward, we seem to have to take a step back. Not the most efficient way to arrive at our "total health" destination, but we'll take it as long as we get there! It's been an exhausting couple weeks, but this is a marathon and I'm looking to get my second wind!

Thanks again for your continued prayers and support. We could NOT do this alone and we feel your presence with us every day.

With love and highest hopes - The Thorps!