Back to Normal?

That's what everyone wants to know. I have been hesitant to say that is the case. Probably because it has been such a long road of health problems for Bruce over the past 2 years. I feel like the rug is going to get pulled out from under us at any moment. I keep waiting for the next problem.

Bruce has been back to work for 2 whole weeks. It was not a slow process, he is working more hours and busier than ever before trying to catch up and make sales. I am working in the office now and busier than before also. We have hardly had the moment to enjoy his new found health. But we are slowly doing more "normal" activities and it has been lots of fun in the household lately. We can actually make plans! What a new concept! We are going to Disney at the end of April. Last year we were all supposed to go, but Bruce ended up staying home and then taken to the hospital. Roan got to enjoy Disney for the first time, but without Bruce. For a whole year, whenever we said something about Daddy getting a surgery or going to the doctor, Roan asked if he is better yet and if so, can he go to Disney? So this one is for Roan. And he is SUPER excited. I probably should have kept it a secret for awhile longer but I was so happy about it too that I blurted it out without thinking that I'm going to hear about it everyday until we go. He has already added that we must go to Tennessee to see Eldonna after we go to Disney.
It is great to not have to tell them we can't do something because of Bruce being sick.

Bruce has to go to Lifelink in a few weeks for another check-up. He gives blood once a week here and then calls a message service to see if he needs to change his medicine. He saw Dr. Russo here last week and will be under his care completely soon we hope. Medicines have not changed much yet, he still takes about 10 pills 2 times a day.

Bruce has been having very bad headaches. They end up ruining a whole day because he can sometimes have 2 or 3. He was taking Fiorcet which worked only some of the time. Dr. Russo thought it was a side effect of a blood pressure medicine so he switched him back to one he was on previously. He said it could take a few days to get out of his system but Bruce made it all day today without a bad headache so we are very hopeful this is finally taken care of. He still is on 5mg of steroids a day. Dr. Russo said that because of his need for that second surgery the hospital kept him on the steroids for longer than normal which means he will always have to take them. That is something he is not happy about but hopefully his body can adjust to them in time. He will get taken down to 2mg per day at some point. Steroids have some vicious side effects. He still eats much more than normal and always feels hungry. It has slowed down some since he first came home. I am back to cooking real meals again which makes me happy but also takes up lots of time. The doctor told Bruce he could not do any real exercise yet other than walking. The second surgery was much more extensive than a normal transplant because they had to rebuild the arteries/veins going into the kidney. So they want to be very cautious about everything still even though he has recovered a month before they predicted.

Baseball season is in full swing and we have both boys playing for the first time. It means the world to Bruce to be there for it all this time. Beck and Roan are both born to play.

If he can get the headaches under control, things will be much better. And if we can take a break from working so much that would help! More updates sooner than later I hope.


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. :)


OUT of the hospital

If you haven't already heard, Bruce was released from the hospital yesterday (Friday). They thought about keeping him another day but Gasparilla was taking over the Tampa Bay on Saturday and they knew how hard it would be to get in and out of the area with traffic and people that have been drinking since 10am. He has to return to the hospital on Sunday morning for blood work and then the doctors will adjust medicine if needed. If his numbers look worse, they could possibly re-admit him. His creatin was 9.6 on Thursday and then 8.6 on Friday so its making the progress they wanted to see. Still long way to go to get to 1. By then he should be feeling 100%. He already feels amazing compared to how he has felt for the past year. I can tell by just seeing his face that he is healthier.

He will be staying with his parents in Tarpon Springs for now. It is quite a drive to Lifelink in Tampa but still better than driving from here which is 2 hours. I cannot take the time off work to drive him back and forth 3 times a week. That will be the schedule for awhile, then the visits will reduce down as he starts to get the right balance of meds. We will still try to get them to let him start to be under the care of his local Nephrologist Dr. Russo as soon as possible so we can avoid the drive. Dr. Russo called me a week after Bruce was in hospital to check on him and I told him about the second surgery. His office called Bruce after that to check up on him, which I think is so great that they take the time to check up on him. The social worker from Lifelink said it was not very common for them to let patient be under care of different nephrologist but if they had a relationship with the particular doctor and knew he was experienced in after care of transplants, then maybe... I know he has plenty of experience so I am hoping it works out.

My parents and I are taking Beck and Roan for a visit tomorrow. They are both excited to see him and keep talking about when he gets to come home. Baseball practice starts next week and this is Roan's first year in Tball. It is going to be SO much fun to watch.

Today Bruce is very tired but it could be just the first day home from the hospital. He never slept there unless they gave him a xanax and then Restoral a few hours later. And even then they have him up by 6am taking blood. His blood pressure is down to a normal to low range. I'm guessing he may need to go off some of the blood pressure medicines as kidney starts working more. He has to take an enormous amount of pills a day. He took 23 this morning. We knew to expect that but its still a little shocking. His medicines and dosages will change a lot in the beginning but the prescriptions he left hospital with right now total $4000 a month. With United Health Care and Medicare our cost is $333.00 a month. Insane. Thank goodness for medicare.

I'm trying to figure out WHO our little pool boy angel is? Someone cleaned our pool while we were gone because the bottom and sides were green when we left and now it is crystal clear. If you did it, thank you! I feel like the house is falling apart around me since we have had no time or money in the past year to do anything to it.

Ken got the approval to go back to work now. He says he's feeling much better when he visited with Bruce on Thursday. Not only did he give him a whole new life, he is a great inspiration to Bruce because he has such a great attitude. I hope we all get to visit soon so the kids can meet him and his mother. It's still a strange thought to me that we may actually get to travel again.


One week since surgery #2

Last Tuesday evening / Wed morning was the second surgery. I'm happy to write that the past 2 days there has been lots of improvements. Overall Bruce feels SO much better. No matter what the tests are showing, his attitude has been nothing but positive and he's finally seeing the light at the end of the tunnel. Actual talk with the doctors about being released has stopped some of the worrying that he's going to end up back in surgery or worse. He hasn't had to do dialysis since Sunday. His output is great and he has lost tons of the water weight all on his own without dialysis. The creatin has not come down yet - it was a 10 today. The doctors want to see a pattern of it going down and all other blood work looking good, then they will let him go home. So that could possibly be Friday or Saturday if creatin starts to go down tomorrow. The wonderful new kidney seems to be doing it's job.

Ken and Bruce talk pretty much everyday now that Bruce is feeling better. Ken is still recovering at home in Orlando. He continues to have quite a bit of pain. He feels like something has hit him very hard in the lower back. This really was a rough recovery for him but I believe that is normal because it is known to be pretty hard on the donor. His mother has been taking care of him. So I am grateful to them both for uprooting their lives to give this unbelievable gift to Bruce. Everyday Bruce realizes a little more what he has been given and the feelings are very overwhelming. Ken has his check up at Lifelink tomorrow and he is going to visit Bruce at the hospital. I will find out more about how Ken is feeling then.

I'm home now...glad to be back with the boys. They are missing Bruce like crazy so I am trying to find a way for us to visit this weekend. Beck has asked me about it over and over so I know it's really bothering him.


More of the same waiting game

Saturday was good, we had lots of visitors and Bruce felt well and looked much better. Then Sunday morning he was miserable again. He got even more swollen and felt nauseous. The creatin went up to 11 so they sent him for dialysis for 3.5 hours. He was very discouraged, worried that he will have to go on dialysis again, kidney won't ever work, etc....When he came back from dialysis, he felt better, had some dinner and was more relaxed.

Today was a pretty good day. The doctor team consensus today is that it is a "sleepy kidney". They did a contrast renal scan to see more detail than an ultrasound and this confirmed that the kidney is working but needs time to wake up. He was told that first his urine output will increase then the creatin will start to drop. Today he has increased his output by probably double since yesterday so that is ONE hopeful sign. We got to push him outside in a wheelchair and hang out with our friends in the sunshine. Actually the doctor ordered him to go outside because they can see that he is going stir crazy being here so long and worrying.

news flash from nurse: renal scan report said "excellent flow to the kidney"

He is over his normal weight by 30 lb.!!!!! So he is holding a lot of fluid, but doctors are hopeful that the kidney will start to wake up and get rid of it. If the morning blood work shows his creatin went up then he will probably get dialysis tomorrow. It's not a bad thing it can just set back the blood work to not be accurate of what the kidney alone is doing so it prolongs this hospital stay even longer. So if tomorrow the creatin is lower than 8.1 then there is progress happening! If it is higher then he will get dialysis and have to wait 2 more days to get accurate blood results. That would be Thursday.

So I have decided after much distress to go home tomorrow. Hopefully I can come back on Friday. I am torn as to where I need to be right now and I hate to leave without actual evidence that he is on the track to go home. Also I will be leaving the super deal I have at the hotel. Someone decided to cut my already discounted hospital rate in half. I don't know who so I can't ask the right person- if I need to come back will they give me that again? I doubt that but it was an incredible gesture by someone there. Bruce obviously doesn't want me to leave until he's out of here, but he said he wanted it to be when his creatin started to get better. I hope tomorrow morning the tests show better results.