Home for good

Bruce has been going back and forth between living at his parents house for a few days then back home for a few days. This week he saw the Dr. at Lifelink in Tampa on Tuesday and they told him he didn't need to return until March 2. (2 weeks) So he got to officially move his things home. He can return to work in about 2 weeks also. He is not 100% of course but he gets better slowly everyday. Most of his issues now have to do with drug side effects. He will get to see both boys play every baseball game now which is something he was very worried about.

He will go see the Neurologist here next wed. to talk about the driving issue. He was supposed to not drive for 6 months from the seizure which will be March 15. But he knows he is not at risk for seizure so there is no reason for him not to drive.

Sometime soon he needs to go back to Tampa General and have a minor surgery to have the stint removed that was placed during the transplant. We have to wait to get a call from the hospital to know when. Maybe by April he will get to start seeing Dr. Russo here and not have to travel back to Tampa but we are grateful that he has progressed this fast in recovery. I never imagined he would only be seeing Lifelink every 2 weeks this quickly after such a rough start. He is very anxious to start work and living normal life again.

Since being discharged they have only cut down his Prograf once, but the steroids have been cut in half 2 times. A few other drugs have been dc'd. We hope he gets off the steroids completely. Otherwise I might have to get another job to afford the food he is eating. I am living at the grocery store trying to keep up because I am not used to it. He is always hungry. He has lost so much weight but now I can see the puffy steroid-look getting to his face and neck. He still weighs the same but I don't see how with how much food he is taking in.

Bruce's brother Sean is pretty much back to routine -working and feeling good except for headaches which are side effect of the Prograf. Both donors seem to be back to normal life also. We are all very lucky.

I opened "the bill" from Tampa General today. I told Bruce to guess at the total- he guessed $300,000 - it was $379,000. Thank you health insurance and medicare! Considering all that was done it's not such a huge amount. The kicker is the pharmacy portion- $73,000 for medicine. As much as the transplant itself. I don't mind big bucks going to the surgeons, doctors, and nurses, but that much to drug companies really disgusts me.

Bacon Wrapped Shrimp

Bruce came home for a few days over the weekend. The boys were thrilled of course. His Dad drove him home on Thursday which was really great for me to not have to drive. He gets very tired, irritable, then full of energy and overjoyed with happiness. He went outside for an hour from 9am-10am then felt like he got sunburned and was wiped out. About 5pm he starts getting the shakes very bad. Referred to as "tremor" under side effects of Prograf the anti-rejection medicine. The other issues are probably the steroids. He went to Lifelink today. His creatin is 1.6 (amazing!) He probably hasn't been that low in 10 years. They cut the steroids dosage in half and eventually he will not take them at all we hope. Doctor was very pleased with his progress. So overall things are lookin' good.

Ken is doing well. He still has some tenderness, the incisions have healed fast- only the larger one is more visible, and he is going out and getting back to normal. He wrote something that I want to share because I thought it was very relevant to his and Bruce's personalities for those of you who don't know them both:

"A word about being nice or considerate and bacon wrapped shrimp. The first time I ever met Bruce, I think I was 20 maybe, I got sick from bacon wrapped shrimp. The beers probably didn't help. I blew chunks, or as Bruce referred to it as "selling buicks" and felt like crap. Bruce offered me his bed to crash in till I felt better. Within two hours I was much better. That is the first thing that came to mind when I read about the PKD and his need for a kidney. As much of a cynic I was and still am, I understand, and believe, that the simplest acts of kindness go a long, long way. That was the worst and best bacon wrapped shrimp ever. Even the smallest things can be huge. Maybe that why they call it Jumbo Shrimp!"

:) thanks Ken

YAY kidney!

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. :)