Merry Christmas

YES! It was pretty good! I think Bruce managed to make it through the past few days fairly well considering he's still feeling bad. Same symptoms, occasional vomiting, massive headaches, and VERY high blood pressure. He spoke with Dr. last monday before Christmas and told him his BP readings- 170's over 100's on average. Dr. said to just take Fiorcet for headache pain everyday as prescribed, not just when he gets the headache, and see if it helps. I can't believe he didn't change the BP medicine. I know it was just changed the week before, but he said it would be instant if it worked and call him if he wasn't better. I am not sure if maybe he has decided best not to try new one and get side effects, and he's just waiting it out for the transplant. This is very unsettling. I feel like we are just buying time and hoping to get to Jan. 14th.

Luckily he has made it through most of Christmas without being miserable. He had dialysis early on Sat and was able to come to my parents to have dinner with my family afterward. Usually he is so ill for at least an hour or two and can hardly speak. The kids are doing great except Beck got a sore throat and fever yesterday. He woke up this morning in pain from it again. He has acted normal and hasn't developed other symptoms. I am dosing him with vitamins any way I can and trying my best to disinfect so Bruce does not get it. Anything that could postpone a transplant is on high alert these days.

I sent a list of about 10 questions to our "transplant coordinator" at Lifelink in Tampa. She answered 2 of them and sent me extension #s of other people at Lifelink to call to ask them. I was very irritated. I don't know what her job is if she couldn't answer these questions for us OR go get the answers by emailing the people OR simply walking down the hall to their office. And most disturbing is that these questions were common things that every transplant patient would need to know. Like, What hotels offer discounts for patients?

I have NO TIME to call 10 people on top of everything else it's going to take to plan this out.
Here are the only things I know now:
1. Bruce will be in hospital for 7 days if all goes well.
2. The appointment schedule after discharge if all goes normal is: 3 times a week for 1st month, 2 times a week for 2nd month, and 1 time a week for 3rd month.

We were told for weeks that a "packet" was coming with all information about the transplant. This packet never arrived, Bruce had to call and ask about it 2 times and they would say they were mailing it. The day after I emailed the questions, we get a letter in the mail (one page) telling him what times he has pre-op appointments 2 days before the surgery. That is it- nothing else. And it was dated the same date as when I sent email so they did it because of my email. Said "packet" is either that one page or something they just haven't bothered to mail out yet.

I think I am going to have to make the time to get some things answered tomorrow no matter what. I did what I could on the weekend...I called Tampa General Hospital and left message. A woman called me back in less than 30 min and faxed to us immediately the list of hotels and prices of discounts. She told me that he will go to ICU for a day or 2 and no one is allowed to spend night there. Then he will go to special transplant area and the room has place for me to sleep. I was so impressed that I actually got a call back and real information. Maybe we are going to go to an actual hospital that functions like it should! Boy will that be a change!

Sean is getting his transplant this week! 2 more days to go. What a miracle.

The final countdown

Less than one month now til Bruce gets a kidney. Time is flying by. I know I have not posted in awhile, wish I could say all is well but it's the typical roller coaster ride with Bruce's health. I have been busier with work but still having to plan every day to the minute, juggling things just to get everyone transported and taken care of. I feel like I'm barely getting things done and I'm in constant panic of what else needs to be done. Of course the demands of the holiday season are not helping matters. I still have presents to buy and a million things to do. That would be normal this time of year except I would have Bruce to help and he could actually DRIVE! That aspect is killing us.

Last week, Bruce was very sick. He was throwing up a lot and the headaches continue. He saw Nephrologist on Thursday Dec. 10 because headaches were so bad and we were concerned about blood pressures being so high. Dr. Russo gave him a new blood pressure med. He started it that Friday. By monday he was throwing up and got swollen all over. He did his dialysis that night, but Tuesday and Wednesday were more of the same. Sick all day. Headaches too. I had to go get him from work early and take him to dialysis early 2 days. Dr. Russo saw him at dialysis center on Wed. and called me to tell me he thought he was having bad reaction to new medicine or as a combination with the other 20 drugs he's on. So he called in new one and told me to get it as soon as possible. It's a blood pressure medicine that is a patch. Dr. Russo thought the headaches were most certainly because of blood pressure being too high.

Thursday he was completely fine. Friday he had a little bit of a headache but after I brought him home from dialysis it was worse. Sad for him because Friday was his birthday and it was spent working and at dialysis. Oh yeah, they increased his dialysis time to FIVE HOURS! That happened about a week ago. It is because were not getting good enough clearance. Today we celebrated his birthday...we went out to eat, then he got one of the massive headaches and he had to lay down for awhile before cake or presents. So it seems new medicine is not working OR headaches caused by something else. He has eaten much less sodium and phosphorus this week but it hasn't made a difference yet. Have to wait to see how he does tomorrow and Monday morning, then call Dr. Russo. This is just another typical week of issues ever since he had kidneys taken out and went on Hemodialysis. He is so so so lucky to be getting a kidney soon. We just have to make it until then - make sure he stays out of the hospital and is able to function at work. Only a few more weeks...

Lifelink in Tampa (where he is having his transplant) has been completely undependable and deficient on what they need to do. I'll post about that soon. I am in disbelief.

We have a REAL date

Bruce will get his transplant from Ken on January 14th. They have to go 2 days before that for pre-op. That is all we know for sure now. I can't plan anything until we get a packet of info from Lifelink, then I have about 100 things to coordinate. It's exciting and surreal. We have told Beck but even he seems to blow it off like "yeah right, whatever!"

Bruce saw the Neurologist this week. He continues to have headaches since he cut the anti-seizure meds in half the headaches were about cut in half also. The worst ones seem to happen at work and during or after dialysis. The Dr. said everyone is allowed to have 1 seizure in a lifetime for various reasons (one of which is lack of sleep) and it be thought of as nothing but Bruce's situation was cloudy. He weighed the pros and cons with us of going off meds and getting another seizure or going on a different anti-seizure medicine and risking having bad side effects from that. The big question: Which one would be something that could delay a transplant? He ended up letting Bruce go off medicine completely especially since he isn't driving. He also said something interesting - that Gulf Coast Hospital tends to intibate quickly. Which was the main reason this seizure kept him in hospital for so long. They put the tube in and then took forever to ween him off of it meanwhile drugging him to death to keep him calm. I really believe he won't have a seizure if he stays the same as he is now. I also think the anti-seizure med has so many side effects mentally and physically that he is much better not taking it.

He gave him rx for headaches - Fiorcet, which is the headache med I have taken for 10 years. I needed more so he called both into Target. When I picked them up tonight, there was a note on it that said "same med as wife? is this correct?" I thought it was funny because we know the staff there and they know everything we are on.

For those who don't know yet, Bruce's brother Sean did really well with the surgery. No complications, just a lot of pain afterward. He had same incision as Bruce. Both kidneys were taken out (about 11lbs each). He is recovering at home now and going to dialysis. He is hoping for the transplant at the end of December. Mary's blog is linked on mine "Living with PKD" if you want to read more about Sean.

Lifelink called and said it's "official"

Bruce's donor is approved and he will get a new kidney! Even typing the words seems like a fantasy. I have not had any time to process this yet. We are both so busy then we stop for a moment and think about what is going to happen and still can't believe it's real. I wanted to have an official date before I posted but Lifelink hasn't scheduled it yet. The donor is calling them with the date of January 14th. He already tried for the 7th and they were booked. I haven't mentioned his name or how we know him yet because I didn't want to pressure him in any way. His name is Ken and he is the best friend of Bruce's cousin Tony. We were friends with him when we lived in Tampa. Ken and Tony lived in Orlando and they would visit us, but we have not seen him in about 8 years. So for anyone reading this looking for donors, this is proof you never know who might decide to be tested and turn out to be the one saving your life. I just want everyone to know that this is the most amazing gift and he is an angel to us.

Also this week- Our thoughts are with Bruce's brother Sean. He is having a Nephrectomy tomorrow at Vanderbilt. He got his port put in today for the hemo-dialysis just like Bruce has in his collar bone area. He will recover and be on the dialysis with no kidneys (unless they decide to leave one in) for one month and then hopefully he will be ready to have the transplant from his donor at the end of December. It seems a bit quick because I know what 4 weeks post Nephrectomy is like. It could possibly be put off a bit longer maybe into January. Which would be such a STRANGE occurrence to have both brothers getting a transplant from a live donor right about the same time! PKD is so unpredictable. One could live their whole life without needing dialysis or transplant but Bruce and Sean both started going downhill within months of each other. Sean and Mary have 2 children who are old enough to know what is happening and it is going to be hard on them to see their dad in this condition for the next few months. It breaks my heart because I know the look of worry and concern on their sweet faces.

I had a conversation with Beck about Sean tonight and he was upset that his cousins would have a bad holiday with their dad going through this. I told him to be thankful we will have a good holiday and something hopeful to look forward to for the new year. Daddy will be like a normal person again. He said, "I don't know that Dad". As if he can't remember a dad that wasn't really sick. I reminded him of times a few years ago that I know he remembers but I am now realizing that to him this must seem to go on forever. I am so happy there seems to be an end to this horrible chapter. And it's all thanks to Ken!

Weekly update

It seems like at least 2 weeks since I typed anything here. I never get the time for anything anymore. I know I used to say that many years ago after having children, but the past year has taught me I had no idea of what a chaotic life really can feel like.

Bruce had bad headaches that were not addressed by dialysis center. I know I did posts on this before and thought something should be done so of course they got worse and he had to come home from work one day. For at least a week, he spent most of his days trying to get rid of them- at least 2 a day every day. Finally they told him he should make an appointment with Dr. Russo the nephrologist. He tried that but it was going to be in 11 days and in Naples- 30 min drive so that takes hours out of my day. We got him in to see the Neurologist who treated him regarding the seizures (and who treats me for migraines). He was very thorough about all the possibilities and ruled out many causes. He told him to cut the Keppra (anti-seizure pill) in half and see what happens. He warned this was a risk of seizure but wanted to see if that is the cause, then he could put him on different one. It seemed to work instantly. The next day- NO headache. He has made it 3 days now and no headaches like before.

Transplant news: the donor has to do a test this weekend wearing a blood pressure monitor for days and mailing it back to Lifelink. Then on Nov. 18 this will go before the committee for approval. They will then discuss with the donor possible dates that work for him for transplant. The coordinator told Bruce that with the holidays it will probably be in January. He told her about his problem with the port he has and she just said he should talk to his dr. about that and she thought he would be fine. So that means this is not going to actually be brought to anyone's attention there who matters. I am going to try to remember to get Dr. Russo to write letter before Nov. 18 to them stating that he needs this port out sooner than later and they need to consider that in their planning.

It is not sinking in yet that he could get a transplant. It is SUCH a huge deal that it is hard to think it's real. Right now we are so focused on simply getting through the days and trying to keep him out of the hospital there isn't much time to dwell on it. Bruce is too scared to get hopeful and I understand so I don't really talk about it.

I am so grateful for any help we get. Last week a pipe burst into a water fountain in the front yard from our sprinkler system. I had to rely on my dad, my neighbor, and my landscape person to come to my rescue and get our water back on in the house. Bruce still gets rides to work every day and rides to and from dialysis from Keith, Rob, and my dad- I know it's probably getting old for them to do this for us. I hope we actually have an end in site!

Status = same

Bruce's potential donor completed his last test this week, an ultrasound. He has to meet w the surgeon and nephrologist I think next week. Then the case goes before a committee and they decide to do transplant surgery or not. I feel like they have been less than cordial to the donor by not scheduling this things together so he doesn't have to drive from Orlando multiple times and wait. I plan on saying something to Lifelink about this because we have to call them anyway. I think they should be bending over backwards for him and that is not the case.

Bruce met with his surgeon and he said that the temporary port he has needs to come out or it will get infected. If Bruce is going to have a transplant fairly soon, then he can probably wait. But if this is not going to happen soon, Bruce needs to have surgery to get the PD catheter again. Not ideal, but better than an infection. I worry about anything like that now because we have ended up in the ICU 2 times this year over complications from all of this already. So surgeon wants Bruce to tell Lifelink about the port because he said that it makes them "nervous". Not sure exactly what that means. I wasn't in the room to hear that comment. So I'm hoping that means Lifelink won't find someway to take their sweet time scheduling the surgery if things work out with the donor.

So we have no idea what the future holds as usual. We can only take it a day at a time and not make any plans. That is MUCH harder when you have kids who are always trying to plan their next fun event.

Bruce feels about the same. Terrible right after dialysis, then he gets energy late at night on those 3 days. He is able to work and feel good now during day except for the headaches which no one has addressed yet. The dialysis nurse says blood pressure under control, but if Bruce isn't taking it on his own then we really don't know. The biggest problem in our lives is the driving. It seems impossible to keep it up the way we are going.

Hanging in there

I am so busy and don't see it ending soon. THANK YOU to the people giving Bruce rides to work and to dialysis or home from dialysis late at night. I don't know how I would make it without that help. Bruce is doing OK. It's up and down as usual. He always has something wrong...headache, back ache, leg aches, etc. No energy is the norm. I think he has a headache suddenly appear everyday. It has to be caused by something but doesn't seem to be the blood pressure. I tell him to tell Dr. and nurses but he tends to underplay everything and if I've learned anything from this terrible experience is that you have to take charge and over-emphasize everything or nothing will be done. I can't help but just be so fed up with all of it and feel like he is never going to have even a half-way normal existence until he gets a new kidney. I know he feels it even more and not being able to drive has made him even more depressed about his condition. Especially when everyone thinks he will not have another seizure but it's the law not to let him drive.

He was told he could take ibuprofen! so strange because since I've known Bruce he has never been able to take it because it harms the kidneys. He tried it for back pain and worked a little.

He sent in paper to be put back on UNOS list. We have not heard anything from Lifelink but the possible donor friend is having more tests next week and that should be the end of it and we will know answer right after that. Lifelink told him that the surgery could potentially be done end of Nov. but our Nephrologist said he would be lucky to get done by January. We are leaving all that up to donor. We are both willing to work with whatever he wants to do of course. It really isn't a reality that we even speak about or plan for because it means so much and would be such a miracle that it's hard to imagine.

I will post if I find out more about David Waddington's son on MSNBC. He is waiting to be personally interviewed by Keith O. but his own father is in kidney failure right now so he can't do the interview yet.

The latest grief

It's been over a week since I posted ... it was one of the worst weeks we have had at home just trying to get through the days without losing our minds. Bruce not driving is killing me. I am running non-stop all day long or working until after 11pm. I got sick on friday and felt like I had the flu for past few days. We have to find solutions to help me out or I will not survive. We have several people helping with rides for Bruce starting next week. This is going to be a HUGE help to me. - thank you - But it's still going to be run run run. We have baseball 2 times, 2 meetings at school in evenings, 2 dr appointments, and I have to do bloodwork. Everything has to be planned out to the minute to get it all done. I never thought not driving would cause such problems.

The Neurologist- Dr. Carracino said Bruce would not be able to drive, that is was Florida law. Period. He made it seem that if they could prove this was a one time incident and that he did not need medicine or be under treatment for possible seizures, then maybe we could do something about the driving. He was not really clear on the subject and I was so overwhelmed with all the other conversations we were having that I did not push the driving issue. He is very intelligent and treats the patient in a holistic way, and he knows me so he talked openly about so many things. He does think it's possible that the seizure was the Ambien but if there is no documented medical proof of that from Ambien, then they can't officially blame it on that. He said he agreed with Nephrologist that there was nothing in any of his blood work that showed a reason for a seizure. He wants Bruce to have another EEG since the one in the hospital was when he was heavily sedated. This could show indications that he is going to have another seizure. We go to that test this Tuesday. For now, Bruce will take the anti-seizure medicine. If he is going to get a transplant from one of the potential donors, he will take him off the medicine beforehand and see what happens because he didn't want him to take med he didn't need that could potentially harm the new kidney. I think he will take him off the meds anyway after he sees that he is healthy enough. Bruce did not make a good impression the day we were there. He was feeling really bad and out of it. So officially he can't drive for 6 months... 5 more to go!

Dr. Russo increased dialysis time to 4.5 hours because they are still trying to give him enough clearance, so just now starting to get that where it should be from having no kidneys. The social worker popped in one day and left without speaking to Bruce. He was supposed to see the Dr. last week but he didn't come there. I don't understand if this is just the way hemodialysis works and we were spoiled from the attention he got when he was on PD or what? It just seems like he is not getting the attention he needs.

For all of my non-facebook friends... David Waddington is someone I met on Facebook who has PKD and had a transplant. His family has all of a sudden been thrown into the news about Health care issues. This was the article written about him and his sons dilemma over being tested to be a donor and finding out if they have PKD. - Article in NYtimes -
It's something to think about if you have children that could have the disease.
His son will be on Countdown/MSNBC with Keith Olbermann on Monday. David's blog is also on my blog list.

Amy's Taxi Service Must End

This week has been a killer. I am being run to death and pulled in every direction. Bruce not being able to drive and needing to go to Dr. appointments, dialysis for 4.5 hours, picking up things from work on top of taking kids to schools and picking them up at different times, baseball practice, etc. etc. etc. is too much for me to do and try to work also. It's been a scheduling nightmare. Whatever it takes, I will not leave the doctor appointment on Monday unless he gives him permission to drive to work!

Bruce seems to be stronger and have a little more energy today so I hope that can last over the weekend. Yesterday he got a pain in his back - flank pain like where a kidney would be but since he has none, I thought it could be something to do with the nephrectomy surgery. Tonight the dialysis nurse said she thought it was scar tissue healing. He had to take pain medicine yesterday which he hasn't needed in a long time so I knew it was bad. Still hurts today but not as bad. He still has the all over aches that he has had since he got home from hospital. Dr. Russo mentioned that it could be because of the uremia. It seems that he is just not getting enough dialysis but I am wondering if this was happening before the seizure or is this just a set back from the seizure and hospital stay. The definition of uremic poisoning (link above) is exactly how he has been acting. I hope since today was an improvement that means the dialysis is doing a better job. They have started giving him some nutritional shakes this week also. The blood pressure is staying good and he is sleeping much better than before seizure. ~knock on wood~

We got the latest hospital bill. I don't want to dwell on the financial aspect of all of this or I will get crazy, but I found it very interesting to compare each of his hospital stays and their costs. This "seizure incident" was double the cost of the Nephrectomy surgery. One main reason was the amount of drugs given this time $34,812.00! When he had surgery it was $6878.00 including anesthesia. I thought the respiratory part would be high, but it wasn't at all. So there's something to think about in the big picture of what health care costs. The drugs costs more than the room charges or anything else.

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.

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.

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.

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.

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!

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!!!

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.

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.

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.

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.

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.

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.

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:)

A sad day for Bruce :(

This is the first and only post Bruce has actually asked me to make (and he told me the title). On Friday his PD nurse Diane (aka Mrs. Claus) retired. When Bruce found out, he was very sad because he liked her so much. We both know that when he goes back on the PD he will be just as well taken care of by Anna the other nurse at the Kidney Institute. They have all been wonderful there and having someone you can call 24/7 when you have a problem is just priceless in this situation. He has been through so much this past year, starting last fall when he was so sick all the time, and the surgery last December and training for the dialysis at home, all the ups and downs with his health in the middle, the big scare when he lost so much blood, and so on....and Mrs. Claus was there helping him through all of that. He said she has a way of making him do the things he needs to do that he is so scared of. He went to visit her on her last day and this is a photo of them. Thanks Diane for everything you did for us!

I haven't posted in awhile because I have been overwhelmed with work, school starting back for Beck and Pre-K for Roan. I think I needed a rest after living in crisis mode for weeks. For Bruce, everyday does get a little better. He goes back to work on Monday and I think that is going to be hard for him because he does not feel well all the time and he has little energy. The day after dialysis is better than the day of. His hemoglobin was only around 9 last week so that could be part of the reason he feels bad. He is still swollen and loses about a pound each dialysis visit.

The number one problem is lack of sleep. He has not slept at night since he went in for surgery. It has been a month now. He is up until 1 or 2am. He gets up early and only has a little nap if any. He has HUGE bags under his eyes which has never happened in all the years I've known him because he always sleeps well. I don't know if he's ever been up until 1am with me except maybe a New Years Eve party. I look at him around 11pm every night and see how exhausted he looks but nothing we have tried has worked. He finally got Ambien after insurance approved it and he took it last night and hallelujah it worked!

Dr. appointment on Tuesday with Surgeon to discuss next surgery for getting catheter back to go on PD, get back on the list for a donor, and see about getting the hemodialysis port out. That could end up being yet another surgery. At least none of them should be as bad as the last.

Recovery Time

Bruce has another week and a half off from work to recover. I think he's doing pretty well considering the major surgery he just had, and the fact that he is doing new dialysis with no help from kidneys. He gets hemodialysis on Mon, Wed, and Friday at a center for 4 hours each day. He has now started to drive himself so that takes some pressure off of me. He got his stitches (staples) out on Monday and he says he can move a little better now. They told him not to put anything on the incision just soap and water. It looks like it's irritated to me and my natural instinct is to put some neosporin or cocoa butter on it so I can't even look at it or it makes me crazy. He is not supposed to lift anything and still can't take a full shower because of the temporary dialysis port, so we are washing his hair in the sink with towels wrapped around his neck...brings me back to my days at the Aveda salon.

The diet: He has felt better by actually sticking to the fluid intake limit. We measured it out as 3 water bottles per day. That is total of all liquids including some foods that are liquid. So he can't have any smoothies, most fruits, soup, etc. He used to drink tons of water so this has been a big adjustment. We bought lots of candy to help him not feel dried out. I don't have time to make recipes everyday and I can't seem to find any info on some samples of things he can eat. Of course there are lists everywhere of food items to avoid and what is ok, but I want an actual example of meals, snacks, etc. Something I don't have to spend hours making and shopping for everyday. He was on this diet before he got on dialysis (last fall) and it was a struggle then too but it seems worse now for some reason. The basics are: No high amounts of sodium, phosphorus and potassium. Which eliminates a lot of foods. He is supposed to meet with a nutritionist this week and I told him to make sure they don't just hand him a list!

I think everyday gets a little better. He is still very tired and doesn't have normal face coloring- he seems very pale. After dialysis he is freezing cold. Last time he wore a sweatshirt and socks and turned on the heat in the car when it's 80 outside. Sometimes he gets nauseous for no apparent reason, but that has been the case with him for almost a year now. He can't eat much which is good considering his options. He meets with Dr. Russo next week at center to talk about everything, but right now we know nothing about his blood levels. He continues to take off fluid that he gained after surgery, so that is good. He hates going to dialysis of course, and is getting very bored but when he tries to do things he ends up feeling bad. I think by next week he will be dying to get back to work.

In 2 weeks he sees surgeon again and will get the sign off to get taken off hold on the transplant list. They put him on temporary hold during his surgery and recovery but he doesn't lose his "place". He has been on transplant list for 1 year and 2.5 months. Maybe one day soon it will happen!

Well Spouse post

I have kept this blog focused on Bruce and his disease, but as you know, the toll this takes on a family is overwhelming. I would like to thank everyone for thinking of me and what I go through in this long process. A friend emailed me something last week that I would like to share...Especially to the several wives who read this whose husbands are dealing with same situation as Bruce, and also to someone very close to me whose husband has courageously battled cancer for over a year now. It was just too poignant not to share. All I could find out about the writer is that it's a woman who wrote a book about her husband with cancer.
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"What about the person who is not the one with the illness? yes, how about me? How am I doing? No one ever seems to ask. A selfish thought when I am not the one who has the disease. No, my pain doesn't have a medical label, my fear is abstract, there isn't any medicine that can take it away. It is the pain of sharing my life, my love, my hopes, my dreams, my future with someone whose life seems to be shattered and all those things stolen from him. How am I doing? Well, since you asked, I'm scared shitless. I'm scared to love all the way now, because the loss is too great. I'm scared because I'm real angry and I want to scream out to God, "Are you nuts?" Or to my beloved who is sick, "Snap out of it and make it go away, " or to friends and family who have become distraught over trivialities, "Shut the hell up, you don't know how lucky you are." I'm scared because my own life and love, and hopes and dreams and future are so connected to my love's that I wonder what will become of me. I'm scared because I see and live the reality of what is and still reach for the idealism I've always had and wonder if I'm fooling myself. Maybe you could say a prayer of courage for me, so I can continue on and care." ~Anita Tejedat

hemodialysis starts

Last post I wrote: "We have to go back to the hospital Monday for dialysis... we hope. We have a name and number to call at 9am Monday to get it set up." As with most every aspect of that hospital, it turned out to be a complete disaster.

We were on phone from 9am-12pm non-stop sometimes on both cell phones. We spoke with hospital, Dr.'s office, and a many people at United Health care, but not the exact person in charge of the case. I was told it could be 24 hours before they call back even though they put the case in the computer as "life threatening". Bruce started to get pale, weak, vomiting, etc. So it was even more apparent how much he needed the dialysis. The hospital said he could not come back there and get it because they only do that for patients, but they were not supposed to release him without an appointment for dialysis somewhere. They did not get that because no one got through to insurance in time, but they still sent him home on sat. and now won't let him come back.

Eventually Dr. Burtch (surgeon) sent us to the ER and told us to tell them that Bruce needs emergency dialysis and call him in the OR if they had questions. We got to ER at 12:30. Someone told us that they were going to "admit" him instead of going through the ER. So here we go again..... Wheelchair!

We went to admitting, had to explain the story to person at desk ( this was after I explained it at least 8 times on the phone to various people), they send us to sign all papers and get bracelet and sent to an actual hospital room. Of course they wouldn't let me push the wheelchair because it's against hospital policy and the lady pushing wheelchair just would not let it go until she knew what we were doing there. Both of us tried short answers because we were so sick of talking about this huge mess and both were in total shock we were being sent another hospital room.

Right when we got to room, insurance calls me back and I tell them that they are paying for a hospital room and all of this instead of just getting approval and letting him go to a center. They got approval in less than 10 minutes and we got head of care services at hospital to make the whole thing disappear like he never was admitted (yes, something went right for once!)

The nurses on the floor thought we were nuts because as soon as they came in the room to start their routine, I said "wait! don't do anything! we might be leaving!" Of course we had to tell the story to them and one other person! And I pushed him out of there all the way back to the ER exit in the wheelchair. It's not that I enjoy pushing it, but when they let me do it without question, then freak out like it's a crime, it becomes a joke.

We made it to the center and they took him right away because they had opening. By the time I left there it was 3:30. Our entire day spent trying to get him dialysis all because of bureaucracy!

He had his second dialysis today at 3:30. He has a tv he can watch and he can read but can't talk on cell phone and they officially say no drinks or snacks but when he's there for 4 hours, that seems extreme. Dr. Russo was there today but he won't review Bruce's charts until the Friday visit.

Bruce is pale, weak, very sore, and tired most of the time. He says that he only remembers small parts of what went on last week in hospital which is probably best!

Home from hospital {once again}

Bruce came home today! Such a relief to be out of that warped place. There was a debate about discharging him since Friday morning. I was unsure he was stable enough yesterday because he could hardly walk on his own, having dizziness, and just didn't want to get out of bed. Today he suddenly got energy and was able to walk around on his own. He had the dialysis yesterday so it probably helped him feel better and get rid of some leftover drugs. It is hospital policy that he has an appointment somewhere for dialysis before he is discharged. The hospital did not get the coordination started with the dialysis center in time and insurance was not going to get approval until Monday, so he was going to have to stay until Monday after he has dialysis at hospital. Dr. Burtch (surgeon) fought this rule all day starting at 7:30am.

At 12:45 we got approval to leave. Papers were ready so all we needed was a person with a wheelchair. We waited for almost an hour and a half for that wheelchair! I went to ask what is taking so long and the nurses decide he can just walk out if he wants to and is able to. They also had to let him leave with 2 hospital gowns on because they made me take his belongings home and he had no clothes there since we did not plan for this today. We walked to the elevators and I started thinking that is was going to be long walk so we see a wheelchair parked near elevators with no one around so we stole it and took off. Perfect ending to this completely insane stay at this hospital. When we were on main floor, with his gowns on and me pushing the wheelchair fast, it really looked like we were leaving AMA.

So Bruce is much happier now and has not even had a nap- because he is so glad to be home maybe? He is certainly in better spirit and moving around normally. There is long way to go before he has no pain. We have to go back to the hospital Monday for dialysis... we hope. We have a name and number to call at 9am Monday to get it set up. Dr. Burtch went to great lengths fighting it out with the head of social services at the hospital all day so maybe it will go smoothly. He is swollen from holding too much fluid but it should get better with each dialysis and keeping diet in check. He has to go on a different diet than before and limit fluid intake to 1 quart a day which includes water in foods. We have to get dialysis place to order some special thing to protect his dialysis catheter so he can take normal shower. There is a follow up with surgeon on Tuesday and the stitches will come out in 2 weeks. The incision is no where near as bad looking as what I thought. It is just stitched (with staples) skin, not scabs or anything. AMAZING. He will see his Nephrologist Dr. Russo sometime when he goes to his dialysis center.

Overall the hospital stay was pretty horrific but most of it was made that way by bad care and organization. The physicians were all wonderful we have NO complaints there! It is just hard to figure out how it can be run so badly. Also Dr. Burtch said at least 4 times about how much infections are in the hospital. Kind of alarming don't you think?

Tomorrow = one week since surgery

The past 2 days he had significant progress because he kept liquids down all day yesterday and today at lunch and dinner ate solids- so far so good. He was hungry and ate quite a bit. He has discomfort inside abdomen from things starting to move around and try to work again. The incision hurts when he moves a lot but he's not in any major pain. He had hiccups for many hours yesterday and today which makes his stomach hurt. He is very very tired all the time and gets frustrated which is totally understandable especially when things move at a snail's pace at the hospital.

Mrs. Claus has given me comfort by telling me that it is common that dialysis patients can have the anesthesia stay in their system for very long time. On top of that there was the morphine. Which explains why it seems like he's still on it and he has not had much pain. It is still lingering but has gotten much better.

He had dialysis yesterday in the hospital center instead of his room like they did in ICU and he gets it again tomorrow morning. Hopefully he is home by Monday and will be going to the hemodialysis center run by Dr. Russo on Mon, Wed, and Fri for 4 hours a day. He cannot move around without assistance at this time. He is very unsteady and can get lightheaded easily. I don't see how he could get around our house without help and I am not trained on that so I am scared of him coming home too soon before he is able to move on his own.

A case worker came and said he was being possibly discharged tomorrow. She also said that he was going home with IV antibiotics!!?! I had to question that 3 times before she looked it up and said- oh maybe not, is he going to a dialysis center? Doesn't give you much confidence in this place when they are reading charts wrong several times now. I can see the confusion if he was even on any IV antibiotics but he's not. And he NOT going home tomorrow. My best guess would be Sunday.

Today his daytime nurse who gets there at 7 only popped in to say hi to him, then I got there at 8 something and he was not there. She came in to tell me he went to get an ultrasound which concerned me so I asked why he was getting one? (don't know) who ordered it? (don't know) so I just let it go. We talked about how important it was for him to get up and walk and I told her that yesterday only one person came in morning to do it, then nothing the rest of the day. His dad had to get up him and walk him 2 times last night. So she said they would make sure he got up today. Then she disappeared and did not come back. The ultrasound turned out to be just x-rays.

I started asking for her at 11:15 and by 12:15 still hadn't seen her. This is her patient and she had not even taken his vitals or checked his chart and it was 12:15. That's when case worker came in so I asked her who we need to talk to about concerns that things were not happening. She asked so I told her everything that was not being done that the doctors have ordered, then we started to see some results. The CNA came in several times and helped Bruce get in bathroom to take bath, she changed sheets and got him some things he needed. The case worker got his lunch tray changed from liquids to solids because it was after 12 and the nurse hadn't done it yet even though the surgeon at 9am said he could have solids for lunch and he needed to get up and walk! The CNA helped him up but left it up to me to walk with him which I do not feel comfortable with when hes wobbling all over the place. The surgeon said IV fluids to be stopped- also at 9am and it was probably 1:30 before it happened (and I had to ask her about it 3 times). The stupid machine was beeping non-stop but the nurse just came in looked at IV site and left it to beep. After 10 minutes of it I couldn't take it anymore so I went to the desk and asked for our nurse once again. The head nurse came in and took care of it all finally and was very nice about it.

Nurse finally took vitals and she told me they gave him an oral pill this morning of a blood pressure med I had not heard of before and I asked why not Coreg (his normal one) especially since his blood pressure was still 158/97. I told nephrologist that and he couldn't believe he wasn't taking the Coreg. Nephrologist also said he would look at his chart and order him back on some meds he was previously taking before surgery- this was about 1pm. Nurse came back to explain that he really didn't take a pill, it was in IV form and the way they wrote it on chart was confusing. The GI doctor ordered Miralax and Prilosec about 2pm. Nurse came in around 5:30, mom asked about meds and said she would go get it. It was after 7pm before he got ANY medicine.

This kind of thing happened all day long! I really have no idea how things can be ordered my the doctors and not be carried out unless I ask about it over and over. No one came to get him up walking of course! The first day the CNA was awesome, she was in there 3 times getting him up to walk and maybe 10 more times doing other things and a bath. Yesterday was pretty much nothing except one walk and today was a total battle to get what little we did. I just think what in the heck would happen if I or his parents weren't there? There would be no walks, no movement, wrong medicines, wrong discharge plans, wrong food, and on and on.... This is just plain disgusting. Especially since this happened last time he was there 2 months ago.

I know lots of boring details but the hospital sent out a survey last time and it's long so I never had time to fill it all out and write explanations. This time, I will have it in my blog to copy from!

Oh and I got asked to leave the room by an IV woman who said husband's do better without their wives in the room. I was speechless.

I will give Bruce his cell phone back tomorrow but I don't think he will be calling anyone quite yet. If you want to visit him, feel free. He was cheered up by visitors from work today even though he is still a little up and down.

Moved to regular hospital room

For everyone who has called and left messages, sent texts, comments, emails....thank you ! and I tell Bruce everyday who has asked about him. I have his phone, so if you are calling it, I am checking messages until he is able to speak to anyone. He can have visitors, but he is in too bad of shape to talk right now. I will keep this blog updated and let everyone know when he's up to calls and visitors.

Today was typical day and Slow Central Hospital. He was moved to room last night about 10pm. He was able to get up 2 times today and move around!!!! We had awesome nurses today. I made sure to let tell them "NO MORE MORPHINE!" and why. It is a miracle that he doesn't need any pain meds. He does have a lot of pain when he moves but he doesn't complain much or feel like he needed medicine for pain in a few days. One good thing in this recovery I guess.

BP was high so he was given meds for that late in day. He looked more "with it" and I didn't notice any confusion but he was feeling terrible. He said he felt worse today than before. We could barely have a conversation because he was throwing up so much. Nephrologist said it was becoming too much so they put tube back in nose. This goes down to his stomach and sucks out everything so he doesn't throw up. He was very frustrated with it but his mom explained again to him what it was doing and why it was necessary and he seemed better.

They called a Gastro Intestinal Dr. to consult and he thinks it is a ileus which means bowels not woken up from surgery yet or just not functioning and building up acid in stomach. They did an xray around 3pm to verify but we didn't get results today. He thinks he is not sleeping well so they tried to give him attarax tonight but that is pill that he swallowed with sip of water while they turned off the suction of the tube for 5 minutes or so. There is a chance some of it got dissolved in him. I hope he has a nice restful sleep for once. So hard to sleep in ICU. I couldn't do it.

So tomorrow is for hoping they find out why his stomach cannot hold down anything and get a solution that works. I think sitting up and moving around more is going to be the key.

Day 3 after surgery (i think)

A lot has been happening but not a lot of progress in health. The tube in his nose was taken out yesterday which alleviated the throat pain. His BP remains stable without medicine- very good! He was given anti-nausea meds but they haven't worked. He cannot keep anything down. He was allowed sprite and jello yesterday and liquid diet today. The tray for breakfast, lunch and dinner all came with tea, juice, jello and some sort of broth or tomato soup. He did not eat anything except jello. I think sprite stays with him better than juice, tea or water. It seems like it is more of a mucous buildup than stomach nausea which we told every dr. and nurse but no change meds for that.

His hemoglobin has been lower than 8 so they have had to give 3 units of blood all together since surgery. Surgeon wanted to hold off on it unless dropped to 6 but Nephrologist did it when it was 7.5 or 7.8. Crazy how the opinions range on everything. We want to avoid the blood transfusions because it makes him a harder match for a transplant kidney. They have upped the epogen shots which will improve the hemoglobin but they take a long time to work. Dr. said if he eats and gets moving it will help.

Dr. Burtch (bruce's surgeon) was not there sat or sunday. He came today and asks Bruce what he's still doing in ICU. I spoke with him and he seemed little pissed they haven't gotten him up moving yet. I have asked them to do it since yesterday morning. Every nurse has a reason or excuse but they all say it would be good for him. They gave him a sponge bath and changed his sheets 2 nights in a row but they couldn't let him just sit up in bed on the side of it for awhile?!?!? I'm not talking about walking down the hall, just MOVE HIM AROUND ON THE BED! Dr. Burtch just shook his head and said we have to get him out of ICU now and get him moving. He assured it would happen today. Nurse put in request by noon but it did not happen and his still there tonight! sigh....

The worst part of this for me is that he is STILL acting like he just came off anesthesia. Without getting into too much detail...he says VERY strange things that make no sense, has no short term memory, gets very confused and agitated, and I can look at him and just see he's not there. Today he looked at me with a really scared look and said "I really don't know what is going on." It broke my heart. I talked to Nephrologist about it and he said nothing in blood chemistry would make him act this way. Phosphorus is high but that is all he mentioned. He blamed the morphine. Dr. Burtch said it was morphine but he thought he was on continuous flow. I told him we stopped that the first night and he has barely had any. Then he said not to worry about it and he needed to get out of ICU. The nurse said that he could possibly have something called ICU psychosis. I looked it up and suppose it is possible. Nurse thought it wasn't morphine because she knows that he has not had ANY all day today and he was even worse mentally than days before. It could be combination of things and once he gets more dialysis and eats, his system will get rid of toxins and left over medicine if that is what is causing this. I know it will get better but it is very disturbing and scary to me.

He had full 4 hour dialysis this morning. They pulled 2.6 liters off of him. I know he lost weight from it but I asked dialysis nurse if he lost weight and she said she didnt weigh him. But I know she did because it is part of her job and I watched her do it 2 sec before I asked. I'm not even going to get into how rude she was! I hope I have time to speak to head of dialysis tomorrow and get new nurse for next time which is wed. I can't take same person sitting in room for 4 hours again and Bruce is really bothered by her.

I hope moving to new room tomorrow helps and hope he can get some food or drink to stay down. I am a postive person but I am becoming very frustrated and might get kicked out of hospital before this is all over.

Day after Surgery

First of all here are the kidney photos;
WARNING!!! DO NOT CLICK if you get sick at the site of body parts. It's pretty graphic. But very interesting to me now. CLICK HERE for PHOTOS

Not much progress - very frustrating. He can't be moved out of ICU until blood pressure is stable because it is still too low unless they are giving him IV medicine. He can still only have ice or sips of water. His throat is killing him and he complains about it all the time. He is still out of it and starting to get very pissy.

They say this is normal for such a long surgery and the fact that they moved his intestines 2 times to get kidneys out. They have to adjust and start working again. I just called nurse and mentioned trying to get him moving a little at least to sit on side of bed. The surgeon said they would have him up the next day so maybe he will make it happen if nurse does not. He had the hemodialysis today for 3 hours. It seemed very normal to me even though its different than the PD. Bruce was about to come unglued the last hour though because the machine was so noisy and it was right in his face. Normally noises don't bother him. They only cleaned the blood, they did not pull any liquid out of him because it would make his BP drop more. He is starting to swell especially his hands. I've never seen them look like that.

He is not in pain from the incision yet because he has not moved at all. He is hooked up to everything:
small oxygen tubes in nose, large tube in his nose in case he starts to vomit badly from anesthesia, heart monitors on chest, IV monitor in artery to monitor every heart beat blood pressure, blood pressure cuff, IV with fluids and the blood pressure medicine or antibiotic, legs wrapped in things that inflate every few minutes, pulse and oxygen thing on finger...

Let's hope tomorrow things move forward.

surgery detail

In icu now nothing to do but give ice chips when they allow it.no food or drinks until stomach has "woken up".

Yesterday we got here at 5am surgery started at 7:30 and ended at 11:30. I waited w both bruce's parents and my own. We were told sugery was only 2 hours so I got worried when it took so long but surgeon met w us after and said it all went well with no problems. We have photos of the kidneys which I need to find way to post on here where it is link to click on because I know most people can't handle seeing it. Had I not done so much internet searching on it, I would not be able to look at them. They said they weighed about 7 pounds each but when they weighed bruce last night he had lost over 30 pounds.

Last night was little rough because couldn't get blood pressure up. Still waiting to do dialysis because of that. He's very very out of it and has wires and tubes everywhere. He's dehydrated but can't let him drink and can't push fluids cause no kidneys and no dialysis to get rid of fluid. He has a huge bandage on incision but stomach bloat is gone! Its a major difference. I keep telling him how happy he's going to feel when he wakes up more. He is so loopy though, he asked me this morning and yesterday if they took the kidneys out yet! He has asked me if its raining 3 times and its not plus he couldn't hear it if it were. He has asked for drinks non stop and I feel bad I can't give him anything. I know they don't want him to get sick but its been a whole day now. They reduced the morphine last night to help get bp up and he doesn't seem in pain but he hasn't moved. They said they need to hear bowel sounds before they give food or drink so I think they need to wake him up and get him to sit up and get this going! Of course I'm sitting here giving orders again ;) but last night I can say we had an awesome nurse who really made all the difference. Icu was a total mad house and SO loud I left at 11:30 and came back at 6 and all is quiet now.

Will go home for nap- I hope and try to find way to hide/post the kidney photos.typing on blackberry now and I have to keep getting up for some alarm going off or bruce panicking.

Thanks to everyone sending msgs will post more when I can.