Things have been pushed back again. The new time may be 12:30. The donor is in Miami and the last update we got was that they had not started to harvest the organs. Then it is an hour flight time and then 20 minutes drive time. They try to time it so that Bill's heart is removed as the new heart is being brought into the OR.

I will be updated when they make the incision, when he goes on bypass and when the new heart is implanted and beating. After that I won't get any more calls and will talk to the drs when it is over.

We're both holding up and my friend is here with me now and plans on staying all night so that I won't be alone. It's her way of saying thanks for me sitting with her during her husband's LVAD implant.

I'll update again when they take him and whenever I get updates.

I didn't think I would be updating this so soon! Dr. Hosenpud called about 10 this morning and said that there was another possible heart. We've been here, at Mayo, since about 11:30. It appears that this heart is a good one and the tentative start time is 11:30 tonight. At first we were told it would be fast, 4 pm local time but it has been moved. The nurse just told us that the organ is not here yet so we are in for a long wait.

He's finally been given a room and is being connected to all of the monitors. We're both in good spirits. I have my new friend Cindi sitting with me this evening and another one I can call if necessary. So, things are just starting. I'll update this when I know things and probably throughout the night, not that I'm expecting any of you to stay up all night monitoring this. Keep the prayers coming and think good thoughts!

Here, we go again. Blogger decided it needed to be streamlined, much like Facebook. If the way you view the posts has changed for the worse, I'm sorry. It's nothing I did and I will try to get it back to the old format as soon as possible. When the blogger (me) has to search around to find out how to post something, it only stands to reason that the reader (you) will have a hard time. But, in case you can find the posts easily, here's the latest...

John's surgery was successful and, as of this afternoon, their supervised outing is scheduled for tomorrow. He could be discharged as early as Friday! We went out to eat with Cindi last Friday for her birthday and we're all planning to go out when John is discharged.

Bill's still doing very well. We learned a little more last week about the actual process from donor to transplant that was very interesting. The coordinator was actually giving an illustration of a process and it turned out that he was talking about Bill's dry run! He said they have never gotten that far into the surgery before having it aborted!

He did get a call yesterday asking if he wanted to sign a waiver to accept an "older" heart. Generally a donor is between 15 and 55. But, with this waiver, if the donor is 55 years and 1 day to age 60, the heart can be used providing it meets all of the other requirements. So, we ran down to the clinic yesterday afternoon to sign the papers. I told Bill today that since he has been sick since he was 48 he doesn't know how a 60 year old is supposed to feel with a good heart!

Tomorrow is clinic day and I anticipate that it won't be out of the ordinary. He's had no problems except for that pesky little rash that comes and goes. We'll let Dr. Patel look at it tomorrow and see what he thinks.

All for this time. I'll update again when we have some more news.

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.