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Hi Lori, He is doing good so far. He fell a few weeks back and has a fracture on his T10 thoracic spine, so he is in a lot of pain. He is taking oxycodone and he may have to wear a brace. They are trying to get a consult with Ortho, but they are so far out, so he will see them when he is admitted after his transplant. He is weak and tired. He takes naps often, which is good. He had some issues with his port. It may have gotten caught when he took his shirt off. It was bleeding pretty good last night so we went in and they redressed it and used some powder to stop the bleeding. We go in at 7am and 7pm each day for his Lovnox shots. Then chemo at 1pm. He woke up today and said his throat felt sore, so the mouth sores must be starting. I am noticing a change in his memory and attitude. Grumpier and more short if that makes sense. Today starts his longer chemo treatment, so we will see how he is doing after that . His transplant is still on for September 3. He is getting a fresh, international donation, so we don't know for sure what time he will get that. Thanks so much for checking in. Feels good to talk to someone who knows what we are going through.
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Hi Wendy. This whole medical odyssey for your husband is quite the adventure with all the twists and turns! His spinal fracture was surely not anticipated. Poor guy! I hope he can get the ortho consult soon. If he needs a brace, they’re actually pretty comfortable and can help minimize the pain of movement.
I cringed about his issues with the port! Yikes, my hand immediately went to the little scar on my chest where my port was! I remember inadvertently tugging on one of the lumens in my sleep. All was well, but it did feel uncomfortable for a day or so and of course I was worried about getting an infection. But the inflammation settled down fairly quickly and that was the only incident. I actually liked having the Hickman port. Saved a lot of hassle with blood draws and such. The only thing that seemed to take the most of my strength every morning for the first few weeks after transplant, was trying to put one of those big Aqua guard covers on before showering. By the time I got that protective plastic stuck I was exhausted!! LOL
I feel sorry for him if mouth sores are already starting.
Make sure you tell his team right away if he’s getting sores in his mouth and throat. There are oral rinses that can help. And if the sores get worse there are other measures the BMT team can take to help him stay comfortable.
I’m counting the days down with you! I know it seems like it’s taken forever to get to this point. And as I tell everyone going through this, the actual infusion of cells is so anticlimactic after all the hype leading up to having the stem cell transplant. But even though the event itself is rather quiet without a great deal of fanfare, it is your husband (and your) opportunity for a second chance of life together. We don’t often get do-overs. So this is quite a gift of life. I wish him smooth sailing through the rest of his chemo and then to Day 0!
If you ever have any questions or concerns, I’m here for you along with so many others of us who have walked the bone marrow transplant path. It really helps to be able to speak with someone who has walked that walk! Sending an air hug!