7.30.2009

Tomorrow Surgery

Tomorrow is the big day. Surgery scheduled at 7:30 and should take 2 hours. He will be in ICU for at least 1 day and 7 total days in hospital if all goes as planned. You can read my post about Nephrectomy Surgery Scheduled to see the details. It is good the time has finally come to get this over with but Bruce is still a wreck about everything. There is one person being tested soon to see if they are a match. Other than that he has no other donor possibilities.

I will be home on and off to take care of animals over weekend, so I will post an update then. Next week, the boys will be here and I won't be able to be at hospital except during the day while they are at camp and preschool.

7.04.2009

4th of july

"Never think that God's delays are God's denials. Hold on; Hold fast; Hold out. Patience is genius."~ Georges Buffon

happy 4th!
One of Bruce's fav holidays because of one reason- loud fireworks. Inevitably he will burn holes in his clothes. Hope he has the energy to enjoy it this year. The kids are already going crazy. It's going to be one long day.

7.01.2009

Nephrectomy Surgery scheduled

Last week was a doozy. Roan was sick at home all week and Beck was also here. And I had to work at home in the chaos. I missed Bruce's appointment with Dr. Russo. Nothing new happened there, they just discussed the process of hemodialysis that he will go on after they take kidneys out. They took blood but he doesn't know the results yet because he hasn't called them back. Friday we had the appointment with the surgeon then Bruce called today and we have a date now for the Nephrectomy.......JULY 31.

They will be taking out both kidneys. They will do large incision on the abdomen. The surgeon discussed with us why the Laparoscopy is not his preference for this surgery and we both agreed this was better. We would need to go to the Mayo clinic in Jacksonville probably to have it done anyway ( at least I believe from all of my internet research). The recovery time with Laparoscopy would be less but this seems like a safer option. The surgeon said the kidneys are in the back and so large they can stretch up to his diaphragm and he has to move all the organs to get to them. They can also be attached to many other organs, so having him open where he can see all of this just makes sense.

The surgeon will also have to take care of the hernia and probably take out the catheter that is there now for his dialysis. During the same surgery time, he will have a temporary port put in near his collar bone for hemodialysis. This will be used until he is recovered enough to have second surgery to put catheter back in to go back onto peritoneal dialysis. The other option would be to have fistula put in arm and continue hemodialysis. The fistula is not preferred for Bruce because of his age, he may need second transplant down the road and need good veins in arm for that. Sean, Bruce's brother, has Dr. at Vanderbilt who has same opinion on this. The PD has been good for Bruce because he does it at night when he sleeps and he can still work.

Bruce should be in hospital for 7 days and recover at home for 3 more weeks. The pain from the incision sounds like the worst part at this point. Surgeon said he will have pain drip medicine, can't wait for that one! The last time in ICU he was nuts when he was drugged. And as of right now, he has no live donor, so he will be adjusting to having to do more dialysis because he will have no kidneys. The last tests they did before he was at hospital showed his kidneys were still doing half of the function.

For the time being, he feels better, works everyday and has more appetite. He is nowhere near normal but he's not sick all the time. The scheduling of the surgery is already a big issue for him- the worrying has already begun. He looks forward to getting them out but scared to death to go through surgery and new form of dialysis. He is still not comfortable with his dialysis now. He frets over it every night. I worry more about the dialysis, living with no kidneys, going through yet another surgery for catheter, and waiting for years for a donor on the list. I wish he had a live donor and knew that all of this would be done within a few months and he could have a normal life again.

6.17.2009

update

Bruce went to work this week. He still has very very little energy and still getting sick once a day. He has improved from last week though. Dialysis is going good- all at night again and he goes tomorrow to get blood checked and get another shot.

We are not allowed to know if anyone has called to be a donor or is getting tested. LifeLink will not tell us anything.

Bruce has appt on June 26, next friday, with Dr. Burtch the surgeon. He is the one who did the catheter surgery in December and the one that his Nephrologist Dr. Russo strongly recommends. He has said before that IF Bruce has a live donor, he would do the surgery all at one time (take out kidneys, put new one in) But United Health Care has sent Bruce to LifeLink in Tampa not here in Fort Myers. If there was a live donor, we would have to at least try with insurance to find a way to do this all at once.

At this point, he has no live donor, so we will meet with Burtch and get into the details of the Nephrectomy. I know that Bruce, Russo, and Burtch all agree both kidneys should go. I just want to make sure that is best option. Also, the incision is going to be large one down the center, and I want to make sure there is no other way. Laproscopic removal is a possibility but his may just be too large. Then we need to talk to Russo about living with no kidneys and going on hemodialysis through a port until he heals and can get another catheter surgery to go back on Peritoneal Dialysis. It is coming down to the wire, he really has to get the kidneys out. And he worries about it non-stop.

6.11.2009

week after hospital stay

Not much has changed this week at home. He is nauseous and usually throws up in morning. He is barely eating. Nurse told him to eat anything he feels like eating to get some nutrients. He is doing more dialysis at night but not during the day because he couldn't handle it. He has almost no energy. His hemoglobin is at 8.1 from Monday's blood work so that explains the energy level. They gave him shot today to boost the hemoglobin (I think they use Procrit) and he will get more shots next week and check blood again.

His hernia got worse in hospital, so he has to be super careful because it could become a surgery emergency which means they would take kidneys out at same time. Maybe someone will donate kidney and be a match before he ends up in emergency surgery getting the kidneys out. If one of them bleeds again, then I'm sure they will do the surgery immediately. If he gets no news on a donor then we hope he can make it until August to do the surgery. Then just pray he comes through it well and can function on more dialysis without any kidneys while he waits on a kidney from Lifelink which could be another year.

He is working at home in between napping. He doesn't have energy to do anything else. I don't even know if he should have driven himself to Naples for nurse visit today but I had a conference call and a video shoot. I know he couldn't climb stairs or anything like that without feeling like passing out. He started taking his phosphorus binders again today so that his phosphorus levels don't get out of control. He should probably go back to taking potassium tomorrow because the dr. said if he wasn't eating to take them. It's hard to remember all of these things. Especially when he's got 20 medicine bottles and it switches almost daily what he's taking.

6.10.2009

United Health Care and Lee Memorial Hospitals

Apparently they are having trouble coming to an agreement, so all of the hospitals in our area could drop our insurance - united health care.
http://www.floridahealthinsuranceweb.com/blog/lee-memorial-health-systems-at-standstill-with-united-healthcare/

We already have to go to Tampa Lifelink for the transplant, but this would effect our whole family if we had an emergency we would have to drive 30 min to a hospital. I think they will have to come to an agreement, but it's just something more to add to the reasons to be frustrated with the health care in general. Bruce's hospital stay was a total nightmare.

6.09.2009

In the News

Nancy Alvarez at local NBC-2 did news story on Bruce and his brother's disease and need for kidney:

http://www.nbc-2.com/Articles/readarticle.asp?articleid=30635&z=3