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.

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.

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.

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

post-hospital visit

We went to Kidney Institute to get Bruce's blood taken and talk about medicines and dialysis with nurse. This time it was Ana because Mrs. Claus is out of town. Dr. Russo made time between patients to come visit and he adjusted the dialysis temporarily for a few days. Bruce has to do one manual exchange during the day and they added an extra hour of dialysis on machine at night. They are trying to get the functions and levels back where they were before the bleeding. They will call us on Tues or Wed with blood results and then probably draw more blood and make more adjustments. He has stopped taking blood pressure medicine at this point- which has NEVER happened since I have known him. He has zero energy, he actually looks worse and feels worse than he did when he left hospital. He will not be back to work for at least a few more days.

We told Dr. Russo how we learned in the hospital that Peritoneal Dialysis was such a strange mystery to everyone - they did not know how to do it, they didn't have the machine or the supplies, they put him on the wrong diet, etc. He said that Bruce should have had a dialysis specialist there working with him the whole time, which did not happen. One person came once in the beginning and had no idea how it all worked. Russo was pretty mad about it so he said he was going to call the head of dialysis at that hospital immediately. Russo is part of the Naples Hospital and that is about 30 min from here so Bruce was taken to one of the Fort Myers Hospitals (Gulf Coast Hospital which is part of Lee Memorial Hospital). Russo was not allowed to consult or be a part of the care while Bruce was there because he's Naples and this was Fort Myers. It was a brand new building, very nice, state of the art, but totally incapable of helping him with his dialysis. Sad, huh?

Hoping for a better week

With that hospital stay behind us, I am hoping things improve this week. Last night was a little scary. Blood pressure dropped to 70s/30s at one point yesterday. I called his nurse about every hour. I had to give him liquids and salty foods and then check it every hour or more. Thought he would end up back at hospital but he woke up and it's been fine all day (about 125/70). He hasn't had any blood pressure medicine since yesterday morning. Which is very odd for him to stay this low for this long without it. We are going to Dr. Russo's office Monday morning. I'm sure he's hemoglobin is still in the 8's so he won't be feeling good until it gets back to 11 or 12.

Local news station interviewed Bruce at hospital and will be coming to house tomorrow to film the kids. My sister in law, Mary, posted a story about Bruce going into ER bleeding and needing a kidney on Facebook and Craigs list. Someone saw it on Craigs list and sent it to reporter to try to help. The power of the internet at work! Someone else called to try to get tested to see if they are a match. We don't know who at this point. But it seems like this terrible experience has brought about some possibilities of a donor.

A living donor could make SUCH a difference in the out come. A living donor kidney lasts many years longer because it can be better matched. The donor kidney is taken out and put in quickly so it never "sits" like a kidney from a deceased donor would. And because Bruce needs his kidneys removed, this can be planned out so it's done as close as possible to his nephrectomy surgery. That means less down time for Bruce, he won't have to deal with trying to live on no kidneys and hemo dialysis and yet another surgery for PD catheter. He could end up not being able to work again until he got called on the transplant list. It would be a real miracle to get a living donor. I think it is something that he had given up on, so this has given him some new life.

Home from hospital

Bruce came home around 4pm yesterday.

We saw his surgeon who had returned from transplant conference in Boston- he ran in quickly to tell him to make sure if he bleeds again to get filters on the blood transfusion. Bruce in his drugged up state at least remembered that last sat. when they told him he needed blood. He refused it and then Tom called me called nurse to verify it was ok to have it if they did with filters. The reason is because its entering a foreign substance which makes body produce antibodies to fight it off and that would interfere with a transplant and make your body reject the new organ. The Surgeon also acted a little strange about us wanting to wait until August to have the Nephrectomy. But then he said if he doesn't bleed or have complications then he could wait that long.

We left hospital with RX for anti-nausea medicine and Potassium pills. I went to Target to get it and ended up waiting for over an hour. The Dr. from hospital did not write down the quantity of pills or days. The pharmacist called nurse, and nurse called back with a quantity but then changed the dosage so there was a discrepancy between the written RX and what nurse said on phone, so we had to wait some more. He and I both called the hospital and waited on the Dr. to get us the correct dosage. I got fed up and left with one of them, I thought it would be okay to wait and come back but they never got the call from hospital. I went back to Target this morning and he had to call again and ended up paging the Dr. to get this settled. This was just one more frustration and lack of urgency on the part of the hospital. I thought once we were out of there it would be over but they are still causing us issues. I don't want to be harsh on them because there has GOT to be a reason for such lack of care.

Meanwhile Bruce's blood pressure is dropping VERY LOW. He insisted on going with me but staying in car. He can barely stand up now, he is very dizzy. Blood pressure is 86/45 ! I called nurse and he is eating potato chips and drinking lots of fluid and has his legs raised up on bed. She thinks he is pulling too much fluid out of him and not eating enough to make up for it. He has only nibbled at food since he left hospital. BUT I have made sure he is eating high potassium foods. He had bananas and a baked potato. He took one of the potassium pills. If it is the fluid problem then it could take a day or more to get it better. If it is potassium causing the low blood pressure, it should come back sooner.

Kids are with parents right now having a blast at Chuck E. Cheese. We are supposed to keep checking his blood pressure every hour and he needs to keep eating handfuls of salty things and drinking liquids.

When he feels better, I will post on some GOOD news for once.... Bruce was interviewed by local news in hospital and they are coming to our house on Monday to film the family. :)

bruce in hospital

This post if for everyone who has called, concerned and offering help. I have been way too busy to call anyone back. So here is what has happened...

Friday May 22nd: A cyst burst and Bruce started bleeding. This is a common occurance with his PKD. He had one-sided kidney pain on Sat the 23rd. He spent friday, sat, sun, and monday in bed most of the time with nausea and vomiting on and off. On Tuesday He went to Dr. Russo's office (nephrologist & the kidney institute with Mrs. Claus his dialysis nurse). They thought he was getting dehydrated from the dialysis because his blood pressure had dropped. They had him stop blood pressure and diuretic medicine for a day or so and he seemed better. They sent him to a Urologist on Thursday. He was feeling bad that day and was back to throwing up. The Urologist looked and saw that there was blood squirting from the kidney into the urethra and gave him a prescription to stop the bleeding because for some reason he wasn't clotting. I ran to 3 pharmacies when he got home from dr. at 6pm. No one carried the medicine, so it was ordered for next day - Friday the 29th.

We had a Disney trip planned with my parents for that day. We had free tickets so Bruce chose to stay home and we left at 9am. He went to Dr. Russo again that day. Mrs. Claus checked his hemoglobin because she thought he was maybe bleeding too much. They couldn't get the result back that day though. She said he should go to hospital because she was worried. He decided to wait to tell me this at 6pm when we are on our way to Downtown Disney. Tom Mizwa a long time friend and business associate drove to get his medicine and brought it to the house. Bruce said he wanted to give it a try before going to hospital. I was worried so kept calling him. At 9pm I told him he needed to go to ER, so he called Tom to take him. Roy came over and cared for Luna and made sure Bruce was ok until Tom got there. Tom and his wife Robin stayed with Bruce until about 1am getting him settled and Tom came back and stayed with Bruce in ICU. I was on phone all night and did not sleep at all. Bruce told me to stay there and not ruin it for kids so I tried to do so, but the whole time we were in Magic Kingdom i was on phone trying to help Tom because the hospital was clueless about his type of dialysis. Roy had to help out with Luna and getting dialysis machine from our house to hospital. Thank God for Tom and Roy:)

We found out that his hemoglobin was around a "5". He is normally a "12". A "5" means you should be dead. If he would have gone to sleep like he was planning on doing, he would have gone into a coma. He got up to let Luna out and fell over... so thank God for Luna :)

Tom was stuck dealing with everything because Bruce was completely out of it and drugged heavily, so I needed to come back but driving home for 3 hours at night was bad idea since i had no sleep and had taken migraine medicine all day. I also did not want to freak out the children so I was trying to at least be there with them for awhile so they didn't think something terrible happened. I tried to get a rental car brought to me but that was not working beacuse it was late in day, a Magic Kingdom employee drove me in a Disney van back to my hotel and my friend Daniel drove all the way from Tampa to pick me up and take me home. That was a 4 hour drive for him and then he drove back home for 2.5 more hrs. Thank god for Daniel :)

Bruce's dad drove all day long from Nashville and got there around midnight I think- things start to get blurry about that time. His mom flew into town on monday. At first they thought they were doing surgery to take out kidney on monday. Sunday morning they said they decided that he was in no condition to deal with that massive surgery at this time and wanted him to get better and schedule it later.

We have spent since Sunday trying to get him better. His hemoglobin has stayed in the 8 range so the bleeding stopped. He moved out of ICU on Monday evening. His parents stayed with him until last night, I have been able to be there mostly during day but tomorrow that is going to stop because I have to get back to work, I have to take care of kids and I think he is well enough to be alone. Basically someone has to ask for something a couple of times or it never happens. Even if the Dr. orders it, they don't do it unless we remind them and it's always hours after it was supposed to happen. Bruce is alert enough now to do that himself as long as he is not feeling the nausea.

His dialysis has not been good, so toxins are built up. He is very weak and throws up at least once a day. It's a day by day thing right now. The earliest he could come home would be Friday and that is if he really improves tomorrow. He will stay there until they can get him stable. I took Beck to see him today which helped both of them.

I am truly thankful to everyone who has offered to help and said prayers for him.

I will try to keep this updated now that i can breathe....