Just a quick entry to let you know that John's implant has been postponed until tomorrow morning. I think we've helped them some just answering their questions. I know it would have helped me to have someone who had been through it to talk to before the fact.

We've spent a quiet week-end. It was rainy and since water is not Bill's friend we stayed in except for getting the mail. Haven't left at all today. It has finally cleared off and is now going to be cool. Only in the 60s tomorrow and 40 at night. May have to turn the heat back on instead of the air!

We have no appointments this week, so there may not be many posts. Until next time...

We have had an interesting couple of days. When we went to the support group meeting yesterday our social worker asked if I would be willing to talk to another VAD caregiver who is having a hard time dealing with everything. Of course I said I would so she was going to give them our contact information today. Haven't heard anything yet but this person, I don't know if it is male or female, may have a hard time asking for help. There were several new people at the group and one woman was a wife whose husband is too sick for a transplant and is having the VAD implanted tomorrow. She made the comment that they were both terrified so we talked to her for quite a while after the meeting and then spent about an hour with them today answering questions. They are also not local to Jacksonville and had lots of questions about shopping and things. I'm going to spend some time with her tomorrow during the surgery. I know how scary being alone at that time can be!

Bill had a good report again from the team. He has a little rash near his drive line that has concerned me for a few days. Both Lorraine and Ginny looked at it and they think that it is more a heat rash than anything. The supply company also sent us a new brand of drain sponges and I wondered if, even though those are sterile, it was something to do with that. We got a new order of supplies this afternoon and the sponges were the old brand so I used those when we did his dressing change today. We shall see tomorrow.

I've been reading lots of blogs related to LVADs and transplants and one thing that has been brought out is the fact that this illness and treatment doesn't just affect Bill. It also affects me and our children and other members of the family. Sadly, a lot of times well intentioned people ask how the patient is doing and how the kids are doing, but never ask the spouse how they are coping. That is where I have been so very fortunate. Through all of the comments here, on Facebook, the emails, texts and phone calls, never has anyone neglected to ask how I am. And, even though it's such a little thing, it makes all the difference in the world! So, to all of you who have asked and continue to ask, THANK YOU! And, tonight as you pray for me and Bill, please add John and Cindi to your prayers. They are just starting on this journey. They told us today that they are believers, so they have also put it in God's hands just as we have.

Got Bill's equipment straightened out. It turned out that it wasn't his power module but his system controller. This is the part that is connected to the pump through his abdomen. He's been using too much pressure when he goes to and from battery and power module and bent one of the pins. So, we connected him to his backup unit and he got a new backup. He doesn't like for the alarm to sound when he's switching over and tries to do it too fast which uses too much force.

Tuesday we went to the support group meeting and met a couple from Bentonville, Arkansas! He is just now being evaluated for transplant and had lots of questions. There was also another couple there waiting for transplant and he may have to have a VAD so we pulled out some of the brochures we carry for EMTs and then Bill showed them how things are connected. Gave them some of the pros and cons of the VAD. There was more discussion in this group meeting than there had been for a long time, especially among caregivers.

Today Bill had his pacemaker checked and it showed that he had a couple of episodes of arrythmia. They only lasted a second or two and the pacemaker kicked in immediately. But, Dr. Yip doesn't want to take any chances so he tweaked one of his meds which should take care of the problem.

There's a brush fire in the Osceola National Forest and it's close enough that when the wind is from the west, the city fills with smoke. Monday is was very thick and I've had a hard time breathing since then. I finally pulled out my asthma inhaler that I hadn't needed for many months and it has helped some. The air quality is supposed to be better tomorrow and through the week-end.

So, we've had an interesting week and there have been some family issues come up at home. There is nothing we can do about the situation from here other than what we have already done, and although it was a hard decision to make, we think we have done the right thing.

Bill's next appointment is Wednesday. I don't know if they will want another device check to see if the med change has helped or not. I'm sure they will let us know.

We've had a very quiet week and week-end. Saw Dr. Patel this week and everything is fine, we're just waiting for the call. He did say that they are going through a dry spell across the board with all blood types. We also saw one of our social workers to make sure we were dealing with everything.

There's been a problem with Bill's power module. This is the unit he connects to at night. It shows the readings from the pump that we have to keep logged. It is not showing that he is connected to the unit. It is not giving any alarms, and we can tell that he is connected to the power. If he weren't connected his system controller that is attached to him would sound an alarm. So, tomorrow we have to take it in to have it tested.

Tuesday we're going to the dentist to have Bill's dentures adjusted. He's hoping the dentist will decide that his gums have healed enough to make his permanent set.

Thursday he gets his pacemaker checked and, other than going to the fitness center that's it for this week.

We've spent a quiet Easter. Watched services on TV and then had a nice dinner of Cornish Game Hens, stuffing, mashed potatoes and gravy, corn and rolls, apple pie and ice cream for dessert. The weather was perfect, sunny and mild and we had the door open all afternoon. Just a nice spring day.

All for this time. Hope everyone had a good holiday.

We've had a great week! Nothing new on the heart front, but we got a new grandson, William Joaquin Haven Palacios. He was born on the 14th, his mom's birthday! Everyone is doing fine and we can't wait to meet him. Pictures just aren't the same but they will have to do! Plus, Emily, Bryan, Christopher, Brianna and McKenna have been here for Spring Break. The weather was wonderful and they had a good time. Sadly, they had to head for home today and the house seems very quiet, even though they've only been gone 10 minutes! Seeing family made us both feel a little better about being so far from home.

Got a good report from the dr. this week. His drive line site has finally closed more again after the rough handling during the surgery. And the incision that was made looks good, too. Dr. Patel would really like to get him transplanted. We really like him. He gave us some interesting stats the other day. He has done a study about the number of transplants done during holidays and, surprisingly, the number goes down around holidays instead of up. He said the highest incidence of transplants doesn't happen around New Year's Eve as most people think but the Fourth of July. He has also shown us some new advances in stem cell research using pig hearts that was interesting. He did say that good stem cell procedures are still 10-15 years away.

We don't see the dr. again until April 4th, so there may not be any posts until then...unless of course a heart becomes available. Check back often to see if there is anything new, but don't be alarmed if there isn't anything. Again, this is a waiting game right now.

Thanks for staying interested in this. I've noticed I've got a couple of new followers which always surprises me. Thanks also for your prayers. Several of my facebook friends put out a prayer request to their friends when we thought the transplant was going to happen and the responses were overwhelming! We appreciate all of you, however you are remembering us!

Got some bad news/good news today!

Bill got his staples out and is greatly relieved to have them gone. He's actually missed not being able to be on the treadmill! He can start again, but he was cautioned to work slowly back up to where he was.

Now for the news. We found out today that a piece of his pump is now defective. It's not a defect that, at this time, will need replacing. It is a sleeve that covers the lower end of the line that connects the pump to the top of his heart. This sleeve is like an accordian and is supposed to adhere to the bottom of the connection to keep the line from getting crimped and twisted. This has happened to another patient and it would mean another surgery to replace the line and sleeve. That's the bad news.

The good news is that because of this, Bill will stay listed at 1A, at the top, until he is transplanted! There is an exception that can be used because of the problem and he will stay there until either transplant or pump replacement. The last 2 weeks will not count against his 30 day period and that will now only be used if the pump does have to be replaced.

So, it is working in his favor and since he's having no problems with it, there is no need for worry. Dr. Patel is determined that Bill will be transplanted sooner rather than later. He also thinks that Bill needs to go back to work after transplant! We discussed it some and don't think that he will do that. It may be time to just enjoy retirement and the grandkids. We also have a lot of things left to do with the house so I don't think he will have any problem finding things to do when we do get to go home.

So, we are excited about this new development. We don't have to keep an eye on the calendar as much as we did before, watching the days creep closer to the end of the 30 day period. Keep everything crossed and the prayers going. I'll let you know as soon as we know something new.

After all of the excitement from last week, this one has been much quieter.

Bill is recovering nicely from the "almost" transplant. He saw the dr. and nurse today and the small incision that had been made is healing nicely. He will get the staples out next week. His drive line site is a little irritated from being handled so much during the prep. Of course, all of the technicians and surgeons were expecting to remove it so weren't being really careful with it.

Our spirits are still good and we are ready for the call again. Our new dr., Dr. Patel, said he would like to admit him over the week-end while he is on call for an "elective surgery" and not for an emergency! he wants to be able to tell the surgeons to remove the staples instead of having Tina do it!

We're having lunch Friday with a couple we have met through Bill's rehab. Abner had a valve replacement and while they were off playing on the treadmills, Faith and I got to be friends. They are an older couple, but good Christians, and we have had some very good conversations.

So, everything is back to normal, at least as far as normal goes for us. Will post more in a few days, probably after he sees the dr. again.