"Day 13" - NOT Good

To those following my Facebook posts, much of this will be a repeat but necessary because not everyone reading this is on Facebook. I am providing much more information here within this blog.

Sadly this update will not be the good news we had hoped for. In fact, many of the possible side-effects we had been warned could happen are now showing their ugly face. We had hoped Ray would escape this but apparently that isn’t in the cards.

Ray is really struggling right now but he's keeping a positive attitude. Even several of the nurses have commented on his upbeat attitude even though it's obvious that he feels horrible.  A few days ago, the mouth sores were his biggest complaint. That issue is beginning to subside somewhat but the sores reaching down his throat & esophagus is plaguing him more now. Swallowing is painful & now he’s pretty much lost his voice because of it. His voice is very raspy.

Not surprisingly his appetite continues to be non-existent. It's all I can do to get him to eat something. He will stare at his food for an hour or more & try to eat but he just can't make himself do it. I keep coaxing him but naturally he gets somewhat upset with me. I have no doubt that if the tables were turned, I’d be the same way. Ok, so I don't think a few days with little food will hurt him much, so if we can get past this part of it, hopefully he will begin to eat again.

But the above issues are proving to be minor in comparison to several other things that have developed in the last two days beginning with his body retaining fluids. In just one day he gained 12 pounds! And that’s with him not eating enough to keep a bird alive! Not good. He is swollen everywhere but his hands are the worst causing him constant pain.  Because his right arm is twice the size of his left & his left leg being more swollen than his right, they got concerned about a possible blood clot so they sent him for a sonogram yesterday. The results came back negative for a clot however the doctor in not convinced. She says it’s still possible that there is a clot there & they will watch closely because the real danger is if there is a clot & it travels to his heart or lungs.

Because of all this fluid retention they are now becoming concerned about his kidney & liver function. The blood work is showing some unwelcome results in that department as well. Today they did an ultrasound of his abdomen in an attempt to find out what’s going on there. We probably won’t get those results until tomorrow morning. We were told that there is a possibility that there could be permanent kidney & liver damage but that won’t be determined for awhile yet. They just want to make us aware of the possibility. This really wasn’t news to us because we had read about these possibilities prior to the transplant.

Yesterday Ray’s platelets were low so they gave him two units of blood. That’s pretty common & not really too worrisome. But of real concern is his heart rate which has become real whack-o. His heart is continually going into A-fib (an abnormal irregular fast beat) & they give meds to try to bring it back into rhythm. But they hesitate to do it because his blood pressure is a little low now & the meds tend to lower ones BP. The cardiac doctor told us today that he is now at a high risk for a stroke therefore they are starting him on some preventative meds to keep that from happening.

The nurses tell me that while I was gone doing laundry yesterday, he was seeing billy goats in his room. They're altering his pain meds to hopefully stop the hallucinations & confusion. He thought we had switched rooms too.  He is a fall risk so they're cautioning him to not try to get up on his own. And the poor guy is also now having problems with his feet. Nothing that we can visibly see but he says the bottom of his feet, especially the heel hurts like the devil when he puts any weight on it, making standing or walking painful for him.

Ray is hooked to tons of wires as they monitor things around the clock. The heart irregularities are constantly setting off the monitor’s alarms. Then there’s the IV pole that is hooked up to him 24/7 now too, which we must drag with us wherever he goes. Being hooked to all this sure makes taking care of bathroom issues & moving around a real challenge.  

Whew, this is some roller coaster ride!  And we thought the last two days would be the worst. Wrong! The good news is that his blood counts are just beginning to turn around & slowly head in the right direction. We fully expect that as soon as they get back to good levels, all this bad stuff  Ray’s now experiencing will cease. As I said earlier, Ray is trying his best to maintain a positive attitude. He is amazing. Even when the nurses come in & ask how he’s doing when it’s obvious that he’s not doing very well, he’ll reply “I’m good”. So far he’s not once said he regrets going through with the transplant because we knew going in that there could be some mighty rough days, weeks & months. But he didn’t like the alternative, nor did I.

Many ask me how I’m holding up through all this & I must admit that early on when contemplating & worrying about how I would deal with it all when & if the bad side-effects happened, I was truly worried I wouldn’t be able to handle it emotionally. And maybe not even physically. Yes it is very hard to watch Ray go through this & I feel so helpless. There are times I must hold back the tears I feel welling up so that he doesn’t see them & worry about me. I am proud to say that I am holding up surprisingly well. The reason being that I MUST for his sake. I have a job to do so that he can make it through this! I pretty much am taking charge trying to ensure that he does all the things that the doctors & nurses tell him to do. And with all my nervous energy, I just keep on doing whatever I can, whether it’s helping him eat, walk, get dressed, & taking care of lots of medical things that I’m learning how to do to aid the nurses. He’s more comfortable with me doing certain things for sure. Plus I figure I might as well help the nurses out when I can, especially with maintaining a clean environment in his room, etc. It breaks my heart to see his suffering but I'm going to do everything in my power to get him through this!

Tomorrow has just got to be a better day, but whatever it brings, we are ready! Bring it on cause we refuse to be defeated!!!