Friday, March 23, 2012

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!

Tuesday, March 13, 2012

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.

Wednesday, March 7, 2012

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.

Saturday, March 3, 2012

Bill is home from the hospital. He's doing fine, a little sore at the groin incision from the staples and an eye is bothering him. But other than that, everything is good. His bloodwork is perfect and we don't have to do the shots they were expecting to be needed.

Dr. Hosenpud said he thinks the heart got too cold which allowed the fungus to grow and it was a particularly nasty infection, one of those that would be worse to try to deal with than to just scrub the process. So, we wait for the next one.

Thanks for all the prayers and good thoughts. The right heart will come at the right time.

Friday, March 2, 2012

Last post of the night. Bill understands that it didn't happen and that the donor heart was bad. We thought I was going to have to learn how to give shots since they thought that his blood was too thick, but his levels were great and the shots were cancelled, at least until tomorrow.

If his bloodwork looks good tomorrow, he will get to come home. He was comfortable when I left and starting on liquids. He does have a problem seeing out of his left eye. He says that it is very dry and blurry and hurts. We haven't seen anything in it but it could have been scratched when they taped his eyelids shut. They ordered some eye drops and that should help.

Thanks for all the prayers. They got me through the day. At least now I know how I will react when the call comes again, and know more of what to expect.

Hope all of you have a good night. Will update at some point tomorrow. Don't know if I will take the laptop or not. We'll just have to see in the morning. Goodnight!
Well, it's turned into a dry run. A fungal infection was found in the donor heart. They weren't so far into the procedure that they couldn't stop it, only a small incision in the groin for the bypass machine.

He will overnight in the hospital and probably go home tomorrow.

I'm disappointed, but we knew this could happen. I haven't seen him yet and he probably doesn't know that they had to abort. Will keep you updated on everything when I know more.

Keep the prayers coming.
Came and got Bill about 30 minutes ago. I haven't heard if they have started yet but it should be any time. Now I really need a xanax!!!

Bill was in very good spirits when he left the room and I'm hanging in. I have had my moments but I expected to. I have enough stuff here to keep me occupied and my thoughts from straying too much.

So, keep the prayers really going now for both of us.
Our new approximate start time is now 2:15. The surgery will take 8-12 hours. The first part, reopening the same incision and cleaning out scar tissue will take about 2 hours, after all of the initial stuff is done, anesthesia and catheters and such. The touchiest part will be when the new heart is implanted. It has been out of the donor's body for awhile now and it will have to be cajoled into working again. That part of the process is something I don't really understand.

We've talked to the anesthesist and one of the OR nurses. She will be the one to keep me updated throughout the process. Like I said, it's gonna be a long day!
WE GOT A HEART!!! Dr. Hosenpud called about 11:30 last night to tell us that there was a possible donor...and then told us to get some sleep! Yeah, right! Anyway, he called again at 7 this morning and said to come in to the hospital.

Bill is being prepped with all of the testing, chest xray, ekg, bloodwork and all that other stuff and the surgery is scheduled tentatively for noon. Of course something could happen at the last minute, such as the heart not being viable, but for now everything is "go".

I had wondered how I would feel when the call came and now I know. I'm a little shaky and I've started popping Xanax. Bill is very calm right now, but he hasn't had time to really think about it. They've kept him pretty busy.

I'll keep updating this throughout the day. Just keep the prayers coming.

Thursday, March 1, 2012

We've had an interesting week and it hit it's peak today!

Bill finished rehab last Friday and we've been going to the gym everyday this week. He walks on the treadmill and I sit and read. Everyone keeps wondering why I don't use the other one, but I would rather just take a walk.

Our telephone and internet service has been upgraded and it has been a nightmare. It took 1 1/2 hours to activate the new cable service (only changed the box). It took until Tuesday for the phone to work, and we had to get a new number. It won't work with the answering machine so we bought a newer phone that at least shows caller ID. I think it has voice mail because we are getting that funny dial tone you get when you have a message, but our landlady took all the paperwork with her so we don't know how to access it! The phone number they gave us has been used recently since we are now getting a lot of calls from collection agencies! And, the wireless internet won't connect. But, we have 1 cable and 1 of us can connect at a time.

Today has been the best day. Not only has the weather been wonderful, low 80s with a nice breeze, but Tina called and said that Bill is now at status 1A at the top of the list. This does mean that the other person got his heart. which is also a good thing. So, until the end of the month, Bill is next on the list!

It's exciting and a little scary too thinking about it. So, keep everything crossed that can be crossed and say some extra prayers for us!