9.29.2009

Hope is in the air!

My cousin, who is a match for Bruce, called Lifelink in Tampa to get her next round of medical tests done and was told she had to wait because someone else was getting their second round of testing. This was total shock to me! About the same time, Bruce got a call from an old friend who told him that is was him and he's scheduled to start testing on Friday. We had heard months ago that he was interested in calling about being a donor but that is all we knew. Lots of people have said that and we never know whether they get tested or not because Lifelink will not tell us anything, only the donor can give us information. They will also not test 2 people at the same time because of the costs involved.

We had both given up on a live donor and now all of a sudden he has 2 possibilities. Hard to wrap my mind around it yet. It comes at such an important time too- after dealing with the seizure, now the aftermath and worrying about what else can happen to him before he finally gets a transplant. He is obviously having a hard time with no kidneys and hemodialysis. Even though many people can live a pretty normal life that way for many years, he is just not having good luck with it. Having a live donor in the near future would really be a miracle.

I don't want to say much more about the donors because nothing is a done deal yet but I am just in awe of both of them for taking this so serious and going this far to give Bruce a kidney. I am forever grateful no matter what happens.

9.28.2009

Dr. Russo follow up after Seizure

We met with Dr. Russo in his office today. He is thinking the seizure was caused by the Ambien. He said his first assumption would be medicine because there is nothing in his record to show other reason and a seizure is not a common thing for someone in Bruce's condition. He mentioned the fact that Ambien works on the brain. He looked and did not find documented side effects of a seizure, as did the ER doctor, but I believe there are many factors in play with Bruce and that is what caused it - I have always believed that. The sleep deprivation reached it's worse right before the seizure, he continued to take the Ambien even though it wasn't working, and he had dialysis on Friday but not on Sat or Sunday. Then monday morning, his brain probably said enough is enough I can't take it anymore!

He said that Bruce has such large muscle mass makes it harder to clear all the toxins in hemodialysis, so that is why the drugs stay with him for so long. He is still not himself in so many ways. He is much better than in hospital when he was confused about everything. It's very hard for me to deal with because one minute he seems fine then the next I am questioning whether there is something seriously wrong and he's headed toward a seizure or something worse. I think this weekend was just bad (like most are) because he goes without dialysis on one day. He had dialysis tonight so I really hope tomorrow is better and maybe by the weekend he will be out of the "fog". Dr. Russo increased the liquid they are taking off of him which can be hard on his body but it is what he needs to recover. He has muscle aches all over his whole body which has never happened before so he can move even less than after the Nephrectomy surgery.

The high blood pressure seems completely under control now and he is even taking less than what his hospital discharge papers ordered. He is supposed to watch it closely and take it at home. He has been doing that but unless he writes the numbers down he can't remember. I am making a medicine list to post in bathroom tomorrow because it has gotten too complex since we have the same meds from the past with different directions and milligrams. He's gone on and off about 20 drugs in the past year. Every time we get it organized it all gets changed again. That doesn't even include the ones for occasion use.

Next Monday he sees the Neurologist to get approval (we hope) to drive, and get approved to go back on the UNOS donor list. This is my Neurologist and I have already given him heads up on everything so he will address the sleep problems, restless legs, etc.

We had Roan's 4th birthday party on Saturday. It was the first normal thing that has happened in awhile around here. I know this is getting to the boys but I am doing the best I can to keep things calm. I have always made their lives about routine and they both do not deal well when that is disrupted for long periods of time. All I can say is THANK GOD for my mom and dad!!! I know I would not make it without them. Beck and Roan think getting to be with them is like party time no matter what so that helps when they know things are not well with their dad. Trying to explain why he was in hospital again for so long was a tough one.

9.24.2009

Bruce is home

That's about all that matters. No more running to the hospital to battle the process of our screwed up health care system. He was released to go by doctors before noon and I picked him up at 7:15pm. He sat there for 7 hours doing nothing, getting nothing, just taking up a room while they got the paperwork together for him to leave. We have been through this recently 2 other times and I know it can be done in minutes not hours. And of course like last time, the doctor wrote a prescription wrong. So we have to call back and deal with that tomorrow. It is an important medicine (the new blood pressure one) and he needs to know how much to take and when. The discharge papers say 6 a day and the prescription says 2. That's a life or death difference. No wonder they are threatened by law suits.

He will go to the dialysis center tomorrow night but can't get in to see his Nephrologist until monday because he is gone tomorrow. He also needs immediate follow up with a Neurologist to get approval to drive and I have a great one but he is on call at hospital next week so he can't see him until the next Monday. Which means he will need to be driven next week to dialysis and work from home. Bruce needs a week to recover anyway but the no driving part will put me under great strain for yet another week.

9.22.2009

It's getting better

Finally a doctor (critical care doctor) speaks up this morning in the rounds and makes some drastic changes. For 2 days they have been giving him same BP meds and nothing getting better. Yesterday they had to add one that only comes in an IV drip for temporary period and that was only thing helping it from being extremely high. But he cannot leave ICU with that so something had to be done. The dr. changed his BP meds, took him off Coreg all together, increased one of them, took one away and added a new one. BTW this doctor was also the one who finally took the plunge and took out the breathing tube. He said to back off the IV one slowly and get him out of ICU! Way to be a doctor man! And guess what? It worked! So tonight he is off IV and BP is decent and stable. They should move him to regular room tomorrow. And I hope home soon. This experience was so much worse than the Nephrectomy surgery. I regret us both saying that "the worst is over" because that certainly was not true.

Last night he still had bad dreams and woke up not knowing exactly where he was but he saw the poster, it calmed him down and he went back to sleep. He said the simple poster has meant so much in keeping him feeling safe. He wants me to post it on here when he comes home and share with people who may be in situation where they are drugged and alone in hospital. At least he didn't get out of bed and was able to remember without someone telling him what was happening. That alone makes me relieved.

He had a really good day: he was cracking up at Monty Python movie when I got there, he ate well without problems, he had lots of visitors from work, and he called and spoke with Roan since it was his 4th Birthday. He really felt the need to speak to Rob and John and anyone who was with him when the seizure happened because he is so freaked out about it. I think it really helped to talk with them. Tom visited for awhile too and that was comforting because Tom was there for the first unpleasant visit to the ICU when his cyst burst. He is so worried about coming back to work and getting jobs done it's going to be hard to stop him from going too soon. He keeps acting like he's going back to work in a day or two.

I think we may have a new possible cause for the seizure- the high blood pressure. It was like pulling teeth to get the Nephrologist to admit it was actually possible, but we will review with Dr. Russo and see what he thinks.

Other big news...my cousin Jennifer who lives in VA is a match for donating kidney to Bruce! There is a looooong way to go from initial match to transplant but this gives some hope and we could use that right now.

9.21.2009

In the News again Tennesse this time!

Bruce's brother Sean was in the news in Nashville. They did the same kind of story like they did here about them both needing kidneys. Here is the link: http://www.wsmv.com/video/21047012/

I'm pretty sad after seeing that so not much into reviewing the day since there is nothing too good to report as far as progress to get out of ICU. His blood pressure is still high. They have him on everything that worked in the past before he started dialysis when it was at it's worst. They have tried many many drugs and nothing is working so far. Before this incident he was only on one -Coreg. He got sick last night but was able to have solids today and did well so far as about 8:30pm. They got him up out of bed and he is very weak and unsteady. Almost worse than when he had the nephrectomy surgery. This whole thing seems worse than that... a seizure! Hard to believe.

There was an incident last night where he woke up and thought someone was after him or something (i did not ask much about it) so he was trying to get out of bed and he was pulling out lines, etc. He does not remember much. Freaked out the nurses pretty bad, so they really got on the CPAP machine today. Three specialists were in the room about it and he's trying it tonight. They think he is not getting enough oxygen when he's sleeping (duh!) and waking up confused.

I agree that he has sleep apnea but it has never been an issue to cause problems. Before he had his kidneys removed he always slept well was not tired during day and has never woken up confused. If it will help him in the hospital I am all for it, but in order to get one at home he has to go do a sleep study and go through insurance to get it at home. We went through this about 5 years ago and they said he was borderline apnea. We got the machine but he would throw off mask in middle of night and when we found out it was coming out of our deductible and costing $400 a month, we sent it back. We will try it again I'm sure. Once again, no one seems to worry about the fact that he was not sleeping AT ALL.

He told me that the poster I made has helped him many times when he wakes up because he knows "amy has been here and she knows i'm here". There is also a white board with where he is at and the date and my phone #. None of this seemed to matter last night, he said he doesn't remember even seeing anything it was like a dream. I explained to nurse how this happened last time when the narcotics just linger for more than a week and he gets confused. I had to work so I only got to be there for an hour this afternoon. His parents spent most of the day before me, but they left today to go back home so he will be more on his own which makes me worry more than before. If he was mentally clear I would not care at all.

Tonight lets just hope he stays in bed, sleeps with lots of oxygen and wakes alert. No incidents please!

9.20.2009

Making progress

Today was the best day so far. Blood pressure remained too high, but by evening I believe they finally got it under control. He made it all day on liquid diet without getting sick. He is starving but they won't give him anything solid until tomorrow.

He is mentally not quite with it yet. Had I not seen this before when he had his surgery I would be very worried that something was wrong, but last time it took at least a week for the drugs to be all out of his system. He can remember such details about things but then totally blank out on something that happened earlier in the day. He has seen the same Nephrologist everyday since he got there and I don't expect him to remember last week but he has had no drugs at all since friday night and he can't remember seeing this doctor yesterday or today. They had long conversations together both days too. He also says things that make absolutely no sense. I know it just takes him longer to get to normal because of the lack of kidneys and I know he's had every brain test in existence. It's just not great knowing that I have to work next week and can't be there to speak to the doctors when they visit because there is no telling what he will say or remember.

I'm very curious to see if they end up discharging him without addressing what made him have the seizure. They ruled out everything but no one has even entertained the idea that it was lack of sleep (maybe combined with the Ambien). This was complete sleep deprivation not just some trouble sleeping. I made a post last weekend about how I had never seen anything like it. I knew the moment I got the phone call that he was in ER with seizure that was the reason and I said so as soon as I got there. The most response I have gotten is that it "could be a contributing factor". This has to be taken care of or he will go home and the same thing will happen. I know we can meet with Dr. Russo and discuss this but I will be amazed if they let him leave hospital without even trying to do something about it. I have numerous links bookmarked about hemodialysis patients and insomnia, restless leg syndrome and links that sleep deprivation alone can cause a seizure in someone who has never had one. I am ready!!!

9.19.2009

Finally

Bruce got off the ventilator and is breathing well on his own.

This morning they turned the settings down and he was able to tolerate it but they were still getting the blood gas to "follow the rules", meanwhile he was gagging non-stop and throwing up everywhere because of the tube. It was pretty apparent something HAD to be done immediately. The critical care doctor (different than the one from night before that refused to do it without correct blood gas #) came in and said "let's go for it!" I had to leave but when I came back Bruce had just thrown up again but what a relief to see the tubes gone and hear his voice even though its like a rough whisper now.

I had to go over everything that has happened - once again. They gave him the sedative drugs all night last night so it was like the mental clearness he had yesterday never happened. He was back to remembering nothing. All week I have been reminded of that movie "50 first dates" (Adam Sander,Drew Barrymore) or "Groundhog Day"- where we start all over everyday.

I put up a poster few days ago that has large photos of Beck, Roan and one of Bruce and I that says we love you. Just to help him remember things are ok. Apparently last night the drugs got to him very bad -just as I had predicted and warned the night nurse about, but the nurses have no choice but to follow Dr. orders. They said it took 2 nurses all night to fight with him to keep him calm and had him fully restrained. According to him, he woke up and they wouldn't tell him where he was or why he was there. He thought he was in Tennessee he didn't know what month it was or anything. It makes me angry that any of that even had to happen. They should have had that tube out yesterday and NEVER should have put him back on drugs that they knew would make him this way again. One of them is meant to give you amnesia, so they should be more sensitive to this effect on patients.

I spent an hour reviewing everything but that was the most I got to really communicate with him. The rest was talking with Nephrologist and nurses. But all seem to be thrilled he is so much better. He was very tired, had a headache, was hungry, and slept most of the day when he wasn't throwing up. They are trying to get that under control so he can start clear liquids, then jello and such. Same ole routine he's been through before.

Thank God we had Kathy again. She worked her butt off all day for him and she gave me a big hug tonight when she left. She has been our angel the past 2 days. Tonight I told her that last time he had Nexium through and IV and that no blood pressure meds were working on him in IV. She said they had tried the antacids but it was orally and tried the full arsenal of IV BP meds and nothing was working. So she took my input called dr and asked if they could go ahead and try his normal BP med orally and give the Nexium in IV. That was approved and he was waiting on it when I left. If that had been one of the other nurses we have experienced, they would have listened to me and done nothing! I don't know if what I am saying can help but I think they need to know what we have experienced in the past and at least think about trying it. So thankful for good nurses!!!

He should be moved to regular room tomorrow if he stays stable over night.

9.18.2009

Not quite yet....

The day started positive with a wonderful ICU nurse, Kathy, who we had the first time Bruce was in ICU in May for the cysts bursting. She was already on top of the weaning off ventilator situation before I got there and she worked her hardest all day long to progress him along. She turned off all the sedatives so he eventually woke up and we got to communicate where I felt like he was really present for the first time all week. He can't talk obviously but he can write some things down and just give me expressions that I understand. This was the first time he became aware of what happened and he was very shocked. He still thought it was Monday and kept asking questions about work and worrying about his job. He was very upset to learn it was a seizure that happened at work and he was transported in ambulance. He is obviously wondering why it happened and I wish I had an answer. It was simply good to see the real Bruce present. He even motioned to try to hug me with the 3" of slack they gave him on his wrist restraints.

the Bad news: The blood gas levels never reached where they needed to be to take breathing tube out. The last test was done around 2. After that the critical care doctor decided to put him back on sedatives and rest through night and try in morning. The nurse even tried to talk the doctor into it anyway but no luck. VERY disappointing to the whole family. We felt terrible for Bruce because he was awake all day waiting for it to happen and he kept waiting for 2pm test to be done. I think he handled it well considering how miserable he feels. I just want him to be ok so I don't want them to push it if it's not time as much as this is killing me. He has fluid in lungs from aspirating during seizure so he is coughing that up today which may help his oxygen improve. He had dialysis today and they plan on doing it 2 more days in a row. He is still on antibiotics, high blood pressure and anti-seizure medicine. The nurse untied his hands finally and I think that helped calm him down. She really knew how to handle the whole situation and I am SO happy to know she is going to be his nurse again tomorrow.

I hope he rests peaceful through the night and gets lots of oxygen flowing!

In other news....Bruce's brother Sean called Nancy Alvarez from local NBC news who did a story on Bruce back in May when his cysts burst. She called me today and said she reads the blog and was saddened to know about recent events and wanted to do a follow up. There was a short story on the news tonight at 5pm with mostly same video as before but adding the info about the current seizure. I don't have any video links to that and the old one on here is not live anymore but there is a story link from June here. Nancy Alvarez mentioned getting a story for Nashville NBC affiliate where Sean lives.

I continue to be amazed and grateful about the people who have offered support and help. I need all the encouragement to make it through these tough days.

9.17.2009

ICU another day

Basically nothing has changed. It's so hard to go there every morning with hopes that progress will be made and feel like all I do all day is battle it out with the nurse as to WHY more isn't being done. I am thankful nothing has gotten worse but this experience is just brutal.

Nephrologist seemed very happy and thought Bruce had made a lot of progress ? He didn't see any reason why he couldn't be taken off breathing machine but not his call. He said epogen should not have been cause because cases with seizures are if the hemoglobin levels changed to quickly and he said he looked at this first thing and did not see that in his blood tests. He continues to say there is nothing in blood work related to kidney or dialysis issue to cause a seizure. Neurologist said MRI was normal, wanted to do a second MRA to check smaller vessels in brain just to make sure nothing wrong but she said possible to never know why the seizure happened. She saw nothing wrong with him, thought he had improved in the past day and did some mental tests with him where he pointed to answers. She also said didn't see why still needed ventilator. So WHY IS HE STILL ON IT? It is up to the critical care specialist who I asked to speak to but never saw today. I have heard at least 10 times they would start to "wean" him off the machine, but that has not happened.

I guess tomorrow I am going to have to get pissy about it if they don't do something. I really think it's all in the nurse - the first days we had ones that were proactive. They thought of things and called doctors to approve and did them. Today and yesterday we had ones that just followed orders and did nothing else even though she knew that his mother and I were very concerned about moving this breathing issue along.

They have him on 3 meds for sedating now that have him much calmer. And it is less than he was given before so it was just finding the right combination. He wrote short sentences on paper to me today (even though he's that medicated), which is a great sign, but he keeps waking up in total panics. I tell him why he's there and 5 min later he wakes up in complete panic and asks the same questions again. He asked some really heartbreaking things that make me know he is so scared and confused. Apparently one of the drugs is known to give amnesia so this is going to continue until they get him breathing all on his own. It's so hard to take. I feel bad that I'm not there to calm him down but sometimes i think seeing me makes it worse.

Thanks for all the messages! I know everyone wants updates on how he is doing so I am making time to try to keep this blog updated. I hope to have better news tomorrow.

9.16.2009

please please please let him get better.

Today was very hard to take. Nothing has changed. He had an MRI, dialysis, then headed for a CT scan of abdomen at 9pm. I asked about MRI results and was told if something was wrong, they would have called and reported it to ICU but other than that, I would not know results until tomorrow when neurologist visits. The dialysis had to happen immediately after MRI because the contrast they use could stay in his system and damage organs. His sedation was increased to 4 drugs and more amounts of those BUT he was more agitated and moving around than before. It was like they decreased the drugs instead of increasing them. The ICU doctor was VERY surprised and decided to switch some drugs or add even more...I am not sure which ended up happening. He tried to talk but he can't. He kept asking why (why he was there). He shook his head yes when I asked if he remembered Marshall - my dog from 10 years ago that had seizures. And all of that was when he was on the highest dosage yet of sedatives. Nothing about this is making much sense. I've never seen so many doctors shake their heads.

I don't think there is anything physically wrong with him causing a seizure. It could be lack of sleep, sleep apnea, accumulation of Ambien, possibly the Epogen shots? We may never have an answer unless he has another one. But, for now all I want is for him to breathe on his own and get off the ventilator and the sedatives. I hope and pray they will try to tomorrow. He needs enough oxygen in his blood for them to start the process of taking him off. Today they were only concerned with moving him for the tests and keeping him from ripping out tubes. I never even heard if they did a blood gas test. And it didn't help that his nurse was not as experienced and seemed to panic at every little thing. She was a real mess.

We have had nothing but the BEST care from the nurses in ICU until today. I even met with the head nurse and told her how great the other 2 had been and all the issues that happened today with the newer nurse. It didn't seem to surprise her much. She promised to make sure someone was assigned to Bruce that can handle the situation better and apologized for all of it. Bruce's mom heard the same one was planned on being scheduled again tomorrow. I guess we will see in the morning if I made enough ruckus in the ICU to get a nurse switched or not. this is not what i need right now.

9.15.2009

Quick update on Bruce

He was taken by ambulance from work yesterday morning to the ER. He started hallucinating and then went into a seizure. He was thrashing around and fighting the whole way apparently. I got to the ER and fought my way to get to see him because he was so out of control they did not want me there but I told them I needed to tell them his medical history and that he has not slept in weeks and taken ambien. Once I got to ER room, doctor told me Bruce came out of the seizure and was alert to speak to him about medications and medical conditions, then he had another Grand Mal seizure. When I got there he was coming out of that one. He was thrashing about everywhere and breathing very heavy, unable to speak or follow any instructions. They had to sedate him and needed to put him on a breathing machine because his oxygen levels were getting too low.

He was moved to ICU yesterday afternoon. There is nothing in blood work to indicate this happened because of his renal failure or dialysis related. Cat scan and EEG or brain were both normal. There is no apparent signs he is having more seizures but they are giving him anti-seizure meds i think 2 times a day. He is on a ventilator giving him oxygen same GI tube as when he had surgery before- both going into his mouth. He has been given non-stop medication to knock him out. One is Propofol (the "Michael Jackson drug") and then 2 others on top of that. His hands have been restrained this whole time. But despite all that, he can still wake up and pull and kick and strain himself. He's probably just trying to get the tubes out but it's a scary scene that usually lasts for a minute at most then he passes out. His eyes have some issues where he can't shut them all the way but eye doctor today said so far, doesn't look like there is damage from seizures. He got dialysis yesterday. And will get it tomorrow after they take him for a MRI or brain and CT scan of abdomen (just to make sure no stomach issues).

The general look of every doctor is a shaking of the head- NO ONE knows why this would happen or if it will continue to happen. Right now he cannot breath well enough on his own to be able to get rid of tube. But if he has tube in, then he has to be heavily medicated (knocked out). They did take the oxygen from 100% to 50% today and he tolerated it OK. That is about the only progress that has happened. Other than ruling out many reasons for seizures.

I think he knows I'm there and a couple of times I have gotten him to nod at me when I asked him something. Overnight the plan was to leave him alone, not to do bath or unnecessary poking around so he could just sleep in peace without the trashing. Then tomorrow see if they can reduce the oxygen some more to get him closer to breathing on his own. It's extremely scary to see him in such a state.

I will probably have more info tomorrow since more will be happening by then.

9.12.2009

giving insomnia a new meaning

Ambien is one weird drug. He takes 10mg, falls asleep, wakes up about an hour later, eventually goes back to sleep for a few more hours, then he's awake for good around 3:30-4:40. And that is a good night. Three nights last week he only slept maybe 3 hours a night. Some people can function like that, I probably could but eventually I would nap or get a really good sleep. He can never sleep for long periods and can't take a nap. The worst part is that this has gone on for 6 weeks straight! Bruce has always slept like a log and gotten at least 8 hours a night. It has caught up with him and he is just plain miserable. He almost fell asleep driving on Friday.

He has tried every drug and combination of drugs the doctor has suggested so far. Next week he is going to his primary to see what she thinks. I told him try to get Ambien CR. The other options I thought about : maybe be muscle relaxer or some natural supplements.

Bruce has worked for 3 weeks now, dialysis 3 nights a week, and seems to be going good. I feel in the dark about it because before on PD we had appointments with Nephrologist and our wonderful nurse Diane went over all of the blood results showing every level so you could see that he may be retaining too much fluid, having too high phosphorus, or whatever. Then you would at least have an explanation as to why he was having some bad symptoms and what they were going to do to fix it. Now, he can have days where he feels terrible and I never know why. He continues to get nauseous and throws up, usually in the mornings. I just don't quite get how people can be on dialysis for 10+ years and live normal lives? Bruce is just not able to live even a half-way normal life because you never know how he is going to feel from one minute to the next.

Baseball practice starts next week. The kids are really missing him being able to at least feel good enough to play around the house. I hate always having to make excuses for him or tell them they have to wait until he gets better to do things. Especially when that could be a very long time - even years.

9.01.2009

Post-Surgery visit w Surgeon

We saw Dr. Burtch today. He said at this time period it is the most swollen the body will be after the surgery. He felt all around his abdomen and verified that he was indeed quite swollen. I knew that it happened a few days after surgery, there was an obvious change, but it was hard to know what was fluid from no kidneys or what. He said there is no way he would go in now and try to do surgery for PD catheter. The tissues are all connecting together and he needs more time to heal and swelling be reduced. Bruce will go back in 6 weeks and we will see what he thinks at that time. Bruce asked if his temporary port for hemodialysis would last that long and he said "we hope". This is not at all the news we want to hear. Bruce is most upset because fall ball starts soon and he will have to miss games because his dialysis time is at night. He can go in early if they call him, but there is never a guarantee. And if he does the surgery too soon, he could get in and see that it is not going to work. He is an awesome surgeon, we both understand this is best, but it's still a little disappointing. So we wait...

Bruce went back to work this week and sold 2 jobs. WOO HOO (Bruce hates that saying. He thinks everyone is facebook all day saying woo hoo this and woo hoo that) He is much happier working than moping around here all day. His appetite and energy level has improved. He has to take binders with his meals to keep phosphorus from being too high and if he forgets, then he feels sick. I have come up with some meal solutions that I can make for dinner and for him to take lunch all week. I can't say that I got much help in this area. I pretty much had to figure it out on my own. The recipes they gave us were strange or required too much work for everyday meals. I used to cook ONE thing and we all ate it, so I really don't like to be put in the short order cook situation.

He still isn't sleeping! The Ambien worked once, then it didn't work at all. Dr. Russo said to increase the dose last night to 10mg and it worked but I don't think it is going to continue. I have determined that he has restless leg syndrome. I thought that was some wacky made up disease until I've seen it in action. It was there before the surgery for a month or more but now it is out of control. The other night when Ambien worked, he was sound asleep and his legs were still moving like a dog having a dream. I read it can be caused by lack of iron which he is certainly lacking. That was caused by the loss of blood and we know his hemoglobin is low. He needs to tell Dr. Russo but he hasn't yet. A couple more nights of not sleeping and maybe he will call about it. I don't know that is the only reason for no sleep but it is a problem for him. He says that it's just a weird uncomfortable feeling that makes him have to move them.

Bruce's brother Sean now has a confirmed donor and a transplant date of Dec. 29th. They will take his kidneys out sometime in October. He will be in the same boat as Bruce is right now, living with a temporary port and going to hemodialysis 3 times a week until the transplant. We are happy this is all working out for him, but know how scary it's going to be to do all of this at once. I feel terrible for Sean but relieved that he has a donor ready to go.

I did think to myself when Dr. Burtch said it would be a few more months that maybe LifeLink would call with a kidney before then! He gets put back on the List tomorrow....WOO HOO:)