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.