Bruce had appointment on Sunday at hospital that went well, then another one at Lifelink on Monday. Him and his dad waited forever. They was there before they opened (7:30) and didn't finish until 11:30. This was apparently because it was a lab, nurse, then Doctor visit. Not all of them are Doctor visits so they should not be as long. His creatin was down to 4.6 on monday - woo hoo! His next appt. is Thursday so at this rate he should be below 2 by then. He has another appointment next Monday, and then there will be other visits where they take out his stitches, dialysis port, and the stint that is still inside him from surgery. They will not allow him to come home and do his visits with his Nephrologist here and they still keep saying it will be 3 months of visits there at Lifelink. That is the worst scenario we hope.
I drove up with my parents and the kids to see him on Sunday, but it was too much to do in one day. The kids were exhausted and really didn't get much time with him. Bruce's blood pressure is dropping too low and causing him to be very light headed and weak. He was pale, freezing cold, and looked worse than when I left him in the hospital. As the kidney works more, the BP gets better which makes the medicines drop the BP too much. On Monday they took off one BP medicine, the patch that he was wearing, and that helped for one day but it is still happening. He had low BPs again today, so they will probably reduce them more on Thursday. This is not great for him at the moment but good news overall that the kidney is making him healthier everyday.
He is getting well-taken care of by his mom and dad and if he was here everyday, I couldn't possibly be around enough to do what he needs right now. His mom has helped him try to learn all the medicines and dosages. Lifelink gave him a huge pill box to organize them since he takes 20 some pills at one time it can be overwhelming. Bruce learned that not taking his Prograf (anti-rejection med) EXACTLY on time makes him start to get very shaky and irritable. That was one other noticeable thing on Sunday- his hands are shaking. He was told that is supposed to slowly go away.
We are planning on getting Bruce home for the weekend so he can see kids more and be home for a little break. :)
Easter Everyday
8 years ago
Posts
I "think" that shakey is a side effect of Prograf. I'll ask Sean to be sure. I'm fairly sure it's the one though that has "neurological" side effects. Did they tell him not to take his Prograf on appt. days until after the blood draw? Sean was told that. It may be different there.
ReplyDeleteWhile it is hard to have Bruce "away" from home for such a period of time, there is now light at the end of the tunnel. He has a functioning kidney and the key is to do whatever necessary to ensure it's long term viability. The Bp thing is important to watch for many reasons. The lower the BP (below normal levels) the less perfusion to all organs, including kidney. Even though patch is removed, blood levels of drug may stay relatively high for some period of time. Stay hydrated, monitor the Bp and keep a recorded list of times of day and Bp to take to Drs on visits to back up his symptoms. All in all, how fortunate you are at this point!!!
ReplyDeleteSo glad to hear that it sounds like the kidney has 'awakened' and is getting him slowly back into normal creatinine ranges...also be great if he could shed some BP meds too! I really hope if he does well for the next month they will reconsider allowing him to do it at home. So sorry for the kids that they can't have much quality time with him though, that must be hard. It was great to see you both, hope we can see more of you as he gets better!
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