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.

Finally out of ICU

Thursday and Friday Bruce had to stay in ICU. On Wed they were planning to move him then Thursday morning the Nephrologist changed the orders because Bruce was nauseous and thought they should keep eye on him in ICU. Thursday night Bruce felt worse and got very swollen with fluid. He got no sleep because he threw up several times from dinner and they were doing major construction outside his room window in middle of night. Friday morning he was in a terrible mental state. They gave him dialysis that morning to help with the swelling. They were trying to hold off on the dialysis because they wanted the kidney to function by itself but he really needed it. After it was over he got his typical headache, took some fiorcet, and then he felt much better. He ate dinner and he was more positive. They put in orders to move around noon and it took until 10pm before he got a room.

Today is Saturday and he is back on the transplant floor in nicer room. He has been unhooked from all the IVs and monitors again and catheter is gone. He is finally free to take shower and move around. The incision pain is much better and he hasn't used pain medicine in 2 days. Bruce's spirits have been lifted so much from the changes happening today. Thursday and Friday were really rough days. I had a hard time being in the ICU room for that long feeling like he would have been progressing more if he could get out of there. Not to mention it was a small room, everyone gathered in front of it for social hour, there was a phone on the wall right next to his door that would ring forever before someone answered, it was right next to the pediatric ICU and I could here babies crying which was enough to push me over the edge and make me have to leave for a break. So I am feeling positive today and relieved to be back on this floor and see some progress. All of the nurses on this floor have been excellent.

All of the Dr's say that there is no way to judge for certain how the kidney is functioning until sunday because it was put through such shock and then he had dialysis yesterday. The only thing they have to go on right now is urine output and that is very good. His creatin is 8.8 today. It was 5.1 before they did the second surgery. So it has a long way to go to get below 1. He may get to leave before then if they see it coming down everyday and all levels of everything else look good. There is no real time frame because everyone says it could go slow or fast and they can't give a real answer. His right leg is swollen so they need to do a scan to make sure there isn't a clot. Other than that it is just a waiting game to see the blood work results everyday and output.

Post-transplant day- version 2.0

Bruce was taken to ICU early and taken off breathing machine and sedation at 8am. He did very well and was aware of the time so first thing he wondered was what took so long and how in the world it was 8am. So I told him a little bit but the Dr. and I filled him in more later.

The Nephrologist that was the one concerned about the kidney not reacting like it should came to see us this morning. He was basically the one who pushed to do the surgery thinking something wasn't right. Not everyone agreed. He said he felt confident in the outcome now. He mentioned how much work the surgeon had to do to the kidney and that it can take it awhile to wake up and function. It could be hours or days. Bruce may need a dialysis treatment tomorrow if his blood levels look worse in the morning. Today his levels were not that bad considering what he went through. He actually started making urine again already....so that is a great sign. And his BP is normal. As in normal for the general population, not normal for Bruce and that never happens. The weird thing about it is that he was not given as much BP meds as he was getting the day before. It could be the pain medicine but I don't remember that ever making a difference before. So it is remarkable if that is because of the kidney working. We will soon see...

Basically he is starting all over like last week never happened. So today was the typical day of narcotic pain meds for the intense pain that makes him not want to move an inch. He only got liquid diet and slept most of day. Pain should get better by friday and he should be up again moving by then. The big deal is the creatin level but it may take awhile to see a drop in it after putting the kidney through shock.

Around lunch time they put in request to move back to the transplant floor to a new room. At 10pm tonight, it had not happened. I hope they don't do it to him in middle of night. No matter what, it's a good sign that he is stable and doesn't need the ICU monitors. I tried to nap in ICU today and it was like being in the middle of the ER tv show. Mostly because of the people working there being so loud, constant yelling, socializing, banging things around right in front of the room. I thought the ICU was a quiet place. Poor Bruce, he will have a horrible night. They also kick you out, no visitors can stay at night.

Tomorrow I am positive he will feel better from the pain and hopefully he progresses quickly.

Record breaking 2nd surgery

2am. Waiting with Bruce's mom and dad to see him for few minutes in recovery. There are no available beds in ICU yet so he will stay in recovery for now. They said it would be an hour before we can see him so I'm killing time until my battery runs out.

I will try to explain what happened the best I can at this hour. The head surgeon from Lifelink who did Bruce's transplant also did this surgery. After at least 6 hours of NO WORD at all, he walked in the room and first said- "he's ok, the kidney is in, i think it's going to work".... then we sat down for a long explanation of what he actually did. The renal vein had 2 parts that were a circling around the kidney in a way that anywhere the kidney was placed in the body, it was cutting off flow to one or the other side of the vein. He tried it in different positions, so then he took kidney out and modified the vein so that it would sit in the body without this problem. He had to shorten both parts of the vein. I asked him if he ever had to do this before and he said this was VERY rare and it took him forever. This is a surgeon with at least 20 years experience in transplants at the hospital that does the most transplants in Florida. Thank god Bruce had him!

So the outcome is that he will take awhile to wake up from this, they will keep him on ventilator and sedated ( where have i heard that before?...hmm september, seizure?) then let him start to wake up on his own slowly. He will need to get dialysis a couple of times because they expect it to take days for kidney to start really working after all it has been through. But we know it was working before, it just was getting it's flow restricted. He sounded very confident that the problem is resolved and he should be ok. Just not the road we expected and going to take longer.

After day or 2 in ICU he goes back to transplant floor. We just went and cleaned out his old room and we are still waiting to see him. Then I'm going to go to hotel and sleep until they call me to say he is moved into ICU room. This whole thing very surreal at this hour. Battery going...
praying for smooth recovery in next 2 days.

thanks to everyone!

Day 5- back to the OR

Things took a new turn today. The head Nephrologist said he was worried about Bruce's creatin level not rising and wanted to go back in (do surgery) and see what was wrong. Bruce panicked of course because we were just told an hour before that from a transplant surgeon that everything looked good on the 2nd ultrasound and they weren't worried. The surgeons and nephrologists all met and decided to do a test where dye was inserted into the main vein of the kidney and pictures taken to see if there was good flow in the vein. They took him to do that and immediately knew from the images that they were going to surgery. It was not a blocked vein, but the vein did not have the right flow and it seemed like something was maybe impairing it. So off to surgery he went- STAT.

He left the room at 6:30. It's 11pm now and I haven't heard a word. The surgery was supposed to start very soon because they were waiting for him. It was supposed to only be about 2 hours, so this is talking much longer and I am worried. The surgeon is supposed to come talk to me in waiting room as soon as he's done.

For everyone texting wanting to know what has happened, I am going to post this for now and hope I have better news soon. I might be staying at hospital tonight.

transplant day 3 - lookin good

Big improvements today. Bruce was walking in the halls and sitting in chair all day- awake and feeling good. He felt like eating more, his BP is better, and no headaches so far.

The Nephrologist ordered an ultrasound to make sure everything looks good because his creatin is not rising as fast as it could. He said it was nothing to be alarmed about it was just to make sure kidney looking good and no blood clots. He IS making lots of urine but the kidney may not be filtering the way it should yet. He explained that the laproscopy surgery is good for the donor but not as good for recipient because the donor is pumped full of air before the surgery (which explains all of the bloating and pain Ken has had). The air changes the pressure in the veins of both kidneys. Sometimes that makes it take longer for it to wake up and function to its capacity. The ultrasound did not show anything was wrong, but then the surgeon looked at it and decided it wasn't a clear enough picture so they will redo it.

He is supposed to start eating and drinking more. Yesterday he was feeling rough so he didn't want anything. Today his intake was much higher. There is no doubt Bruce's eyes look more normal. Dr. said that could have been from too high phosphorus.

Ken's mother pushed him here in a wheelchair so that they could visit for awhile. It was interesting that they both seemed to get much better today compared to yesterday. Ken was told it will be tomorrow before he can be discharged. He has a fever around 99 that appears and goes away and he has an elevated white blood cell count so they want to monitor him another day. Hopefully it is a minor respiratory infection that goes away on it's own. It has been wonderful having him and his mom around but I know they are ready to go home. Sleeping in the hospital - as lots of you know- is next to impossible. When Ken found out he was staying another night he put a sign on the outside of his door that says "No checking vitals past 10pm" so that they would leave him alone. It cracked me up to see it. Even in his misery the past few days he has managed to make me laugh everyday.

Bruce cannot leave his floor because of infection risks. You have to get fully geared up in mask, gown and gloves to be in his room. No children are allowed on this floor so even if our boys were in town they couldn't come in the room. Ken's uncle and some of our friends came to visit today. At first Bruce thought he couldn't handle visitors but he felt better as the day went on and it turned out to be good for him to talk with them.

No one can guess how long he will be staying. The Dr. just said they have to monitor the kidney function daily. Even if he stays longer than normal, I know that he looks significantly healthier. That is a really good sign to me.

transplant day 2

Yesterday was up and down for Bruce. The head Nephrologist was there again and said his creatin is slowly coming down, so they will just see what it is tomorrow and hope it continues. If it doesn't go down, they may do an ultrasound to check things out. His urine output is supposed to eventually have no blood in it and this morning it got more red so they started a drip of a solution that irrigates in the catheter to prevent any blood clots. He said it was not abnormal. Later in the day Bruce had some intense pain and it turned out the catheter tube was blocked where there is a connection. They flushed it out several times and he was better. They started a second anti-rejection drug mid-day. Throughout the day his blood pressure started rising. The anti-rejection drug can also contribute to that so they changed BP medicine. Then he started getting the massive headache like he has had before. The BP did not get better, it actually got worse so about 8pm they upped the dosage of the BP meds. I believe he is now on 2 of them. (maybe 3?) They had to give him tylenol and benadryl before they started the 2nd anti-rejection drug. It all gets to be confusing when they come in with so many things. And his nurse has a Russian accent so I rarely understand the pronunciation of the medicines so I look at the labels and peek at the chart.

He has no appetite and is only taking small bites of food all day. Ken also has no appetite and has barely eaten anything. Both of them still have the bad bloating gas pains. For Bruce it only gets better by getting up and moving around. Tonight getting up made his blood pressure go way up and when he sat back down he was nauseous and threw up a little. But he quickly recovered and took some BP med and ate a little. Right now he's feeling very frustrated because he can't ever feel stable- it's one thing after another. He's just miserable most of the time. All of these issues should resolve as the kidney starts to work more then the BP should get itself under control. As he moves around more and gets an appetite, his stomach will settle. The doctors all think he's doing well and tomorrow's creatin level should be better. He did get up 3 times and was doing very well with that. It's a shame there has to be other issues making him feeling so rough that he can't be positive yet.

Ken could possibly leave tomorrow if they see his blood is ok and he doesn't have a fever. If not he may get an antibiotic or stay till monday. They didn't visit each other today because neither felt good for long not to mention that TGH is one huge hospital that is a maze to get through.

Post- surgery day

Both Ken and Bruce feeling very sore and bloated. Ken was able to get his pain medicine switched to Delotted and that made a difference for him. Bruce was on a low dose, so they upped the dose. But he only used it 2 times. The pump is there for his use every 10 min but he doesn't want to push it because he knows the side effects of the pain meds, but he kept complaining he was in so much pain. He's having his typical out of it and irritable reaction to the pain medicine. Later in the day he was much better without it.

The head Nephrologist from Lifelink came to see him. He said Bruce was doing very well. They did dialysis last night for 3 hrs. in middle of night because he had a high potassium reading. Today he said he didn't see need for anymore dialysis. His creatin is coming down slowly and all the other levels look good. He reduced the bloodwork to just once a day now. That means the kidney is WORKING!!!!!!!!!!!!! yahooooo!

He told him it was ok to have pain and not feel like moving today but tomorrow they were getting him up. Later in the day the pain that was worse was GI abdominal pain. They gave him something like a mylanta. The pain made him want to get up and see if sitting up helped. He tried to get up and sit on the side of the bed, we got half way there but all the cords were pulling on him making him twist in a way that hurt the incision. He needed someone there who was a little more prepared to handle it I think. He wanted to go out on the other side of the bed. But the nurse couldn't get the cords to reach that far. He's got about 6 coming out of him in different places.

Meanwhile they brought him his first real food for dinner. Dr. ordered a "soft" diet. He ended up taking bites of different things but the bloating is keeping him from being too hungry. At least he's not throwing up like all the other times in the hospital.

I told him that he looked good and that if gas and pain from incision is the only problem he has right now then he should be so thankful. I know he can't remember the pure hell we went through the other times in the hospital, but I sure do, and so far this is a huge improvement. I told him I am so happy that everything is going so well. I don't think it has even sunk in with him yet. He said he's just overwhelmed and feeling like it's surreal (and he's still drugged). After they get him up and moving and his stomach settles, he's going to be really happy. He said there was always a pressure and weird feeling in his eyes and that is the first thing he has noticed has gone away. Ken called and they chatted a little, tomorrow Ken might be able to go in wheelchair to see him.

And another thing - everything has gone very smoothly at the hospital. You push the button and a nurse answers immediately and someone comes in right after that. Not like before in Ft. Myers where we could wait 15 min for a response to the button. Everyone who has entered the room knows their business. They don't look lost, confused, irritated, etc. When the Dr orders something it happens very quickly. I haven't had to ask for one darn thing! wow!

Transplant Update- from yesterday

Both patients doing well. Ken went into surgery around 7:30 and was done about 11:15. We got to hospital at 6am and Bruce was taken to surgery around 10:30. Ken's surgeon updated us when his surgery was complete. He said it all went well (it was laproscopic) and he had a big healthy kidney. Ken woke up in lots of pain but we visited him after he was sent to regular room and he was doing a little better. Bruce's surgery was about 3 hours long and he was out of surgery around 2. His surgeon said that it went totally normal and the kidney was already making urine halfway through the surgery and continued to after he was out.

Bruce got to regular room- no ICU- yay! around 10pm. The nurses have been very attentive and informative. They are taking blood every 6 hours and to monitor all kidney function. Everything seems to be going as expected. He is on a lot of medication including anti-rejection drugs. He is allowed liquid diet today and seems to be handling it well. The biggest problem for him and Ken is the pain. Both of them are complaining the medicine is not working. I think they are switching Ken's from morphine to something else. Ken will be getting up to walk a little today but they wont try that with Bruce until tomorrow.

I believe he looks really good compared to the last surgery and especially after the seizure and the bleeding to death incident. All things feel really positive right now and I hope it continues down this road.

Planning for the big day

Whoa...time is flying. Just as the holidays are over, it's the typical struggle back into work and school routine. I was enjoying the help and days off but now we are back in the scheduling nightmare of getting everything done and everyone where they need to be. Top that off with the hundreds of details to be planned out for the following week which is the transplant surgery! YES one week from tomorrow Bruce will get a kidney. It brings up many complicated emotions that I can't express. I am excited, anxious, worried, skeptical, scared, ...you name it! I feel like any second someone is going to say- sorry, not going to happen. I want to look forward to a more normal life but too scared to believe it.

Sean had his transplant last Tuesday at Vanderbilt and was released on Friday with the donor as well! They told him to expect just 3 days in hospital, which I have never heard from anyone else in all of my reading blogs and information about kidney transplants. He is doing well though, he had a few scary things happen so far but overall things look excellent for him. From what I know, his donor Jeremy did well enough to get out and then travel to Orlando to stay with parents to recover before going back to California. The whole thing is a miraculous event.

Bruce's health seems stable the past 3 days. He caught the throat infection Beck had with the soreness and a fever. He got an antibiotic immediately and felt better within 2 days of first getting symptoms. The Dr. said he is not getting enough clearance and needs even MORE time on dialysis machine. (he's already at 5 hours). But he's not going to increase it since transplant is so close. His BP was still very very high but they dont want to throw a new drug in the mix of all the others at this point. However, on Friday Jan 1st, when he got to dialysis his BP was low and dialysis dropped it even lower! That is the norm for most people on hemo dialysis but that has never happened to Bruce. The headaches and nausea still occur and he has times where he is very ill. It's up and down all the time. A transplant cannot come soon enough.

I called 2 people at Lifelink who answered my questions. It was a quick conversation and they were very helpful. Then right after that the Head Transplant Coordinator called me to ask if there is anything she can answer or help us with. That was very nice but by that time I already had all questions answered. It just made me wonder why our own transplant coordinator did not do that or even answer things when Bruce called many times. He was told to just wait on the info to come in the mail. Which was the one sheet of the schedule for pre-op visit. It's just a little odd. In the beginning of this process, I was thrilled with how informative, professional, and on top of everything they were as a whole organization. It's good to see that again.

I wish money was no object and I could take 2 months off, rent a place, take the kids, my parents, and the animals with me to Tampa and we see Bruce through this process, but that is not the case for us. That means a scheduling fiasco for me and the family. The few days before the surgery are a real issue since Bruce can't drive, I have to take him to Tampa on Monday night, then come back home to care for kids and work until Wednesday night. Bruce needs dialysis here early on Monday and in Tampa somewhere on Wednesday. We have been trying to get that verified for over a week and still no luck. Our insurance says the social worker at the dialysis center should do this, but she is MIA. Literally now. Bruce has only seen her once in 6 months and now she just had a baby. Why isn't someone taking her place? I don't get why things have to be so difficult.

And of course there has to be 3 vacation days and 3 1/2 days in the month of January for Beck's elementary. They aren't on a year round schedule, but every month there are days off. Some of them are hurricane make up days. Both my parents are working and I have to continue to work. The post transplant visits for Bruce- driving 2 hours to Tampa 3 times a week for a month - are going to be impossible. I just pray he does well and they let him do some visits here at his dr. in Naples.

I have started making lists of all that needs to be done and its not looking good for me for the next week. But it's all for something that is hopefully going to change his life.