Thursday, July 30, 2009

It's now official. After a week of ups and downs, we've heard from Houston. As of Monday it was tentative to be there on August 1 to start the process. As of yesterday morning, it was definite...we were to be in Houston on Monday. Nichole called this morning and said that the project manager had removed him from the study because of his allergy to the cath dye. For those of you who don't know, he breaks out in hives and itches from head to toe. The study doctor had even called in the presciption for Prednisone that will prevent the reaction (we picked it up yesterday). She also said that no exceptions were made but they could not take the chance on the adverse reaction. Bill said right after he got off the phone with her the hospital called and wanted to pre-register him for the procedure. He just told them to check with Nichole and he wouldn't be coming. He did let Nichole know that this was not really good practice. Every time it was at the last minute when things were changed or we knew anything.

But, even though this has been disheartening, we are not giving up. We're going to start searching again for other studies. He was just surfing the net when he found this one, so we'll look for some others. We are going to take off this week-end and get away from everything and just kinda regroup for a few days. Don't know where we're going or for how long but someone, probably Emily will know how to find us and most of you have our cell numbers anyway.

So, until there is some news, hope everyone has a good week-end.

Sunday, July 26, 2009

The last 2 days, today included in this, have not been really good. Bill has been very tired and has no energy at all. He thinks that his blood pressure is really low again, and it could be that. He has had no color in his face, or he's very flushed. Of course, he's feeling the pressure of not hearing from Houston except to tell us there are problems. It seems that he has not patience with anything and every comment he makes is negative, whether it is something under his control or not. An example is our trip to Jonesboro yesterday. I was driving and he didn't like the exit I took from the parking lot, then the traffic didn't move fast enough when the light changed. He finally admitted that he didn't feel well shortly after that, although he perked up a little when we got home. Last night the weather radio went off and granted we both jump since it is in the bedroom. Yet, he didn't even find out what the alert was for, storm or tornado, but turned it off and then unplugged it! Kind of defeats the purpose of having the thing! Today he was almost manic and very jolly, even cooking breakfast. Yet at church he said he was very tired and it was all he could do to make himself get out of bed this morning!

I know that it is mostly the meds that are causing the fatigue and 1 has been cut back. But I have noticed a change in his memory with the lower dose. I also think that he has deteriorated some as far as his heart goes. If he just wasn't so hard-headed about saying when he doesn't feel well!

Well, that's my venting for the day. Maybe tomorrow will be better and we will hear from Houston soon.

Friday, July 24, 2009

It seems there is a minor glitch in the process. The information from Memphis was not the right information. Nichole was all upset saying if she had known...Anyway, I contacted Dr. Burnett's nurse Susan and she got it straightened out, we think. It turns out that the heart cath in March was only a right cath and not a left/right cath as we thought. So there is only a written report, not a CD image of the process.

We have also found out that the cutoff date for enrollment is August 4. We should definitely know something by then. Only another 10 days to wait, if that long! So, we're still in the same place we were before as far as making plans go.

I'll let you know when something happens!

Tuesday, July 21, 2009

Folks have been wondering why I haven't posted anything lately and the answer is...we don't know anything yet. We do know that the tests from Memphis were sent to Houston on Friday but as of yesterday Nichole had not received them. Maybe today. I think that they probably have reviewed the tests they did and will be able to make a decision as soon as they see the last cath, but that is just my thinking. However, since we do know the tests were sent, we should hear something in the next few days.

It's a cool rainy morning. I just wish I had a covered porch to sit on with my coffee and watch it rain. Today it seems to be very peaceful, just rain.

Until the next post, have a great day!

Tuesday, July 14, 2009

We are done with doctors until September! That is unless Nichole calls and tells us that Bill has been enrolled in the study. She did call today to see if we have let the transplant team know that they needed the last heart cath and she said that everything else looks really good.

Spent about a minute or so with Dr. Garrett. Everything was ok with him and he said he'll see us in 3 months. So, no appointments until Sept.1, again on the 8th and then Garrett in October and another heart cath done then. He will have to have one every 6 months. Only lab work in August and that can be done in Blytheville.

Hopefully now we can rest from all of our travels before we pack up and go somewhere else. We still need to make a trip to Illinois and Bill has talked about going to Branson. He's never been and wants to see it. Of course, all of that will depend on hearing from Houston. I'll keep everyone posted. You will know just as soon as we know.

Sunday, July 12, 2009

We are finally home! Got in about 2 this afternoon. Bill is feeling much better today than yesterday. He ate real food last night, although he had too much and had to take some more medicine. But he ate a light breakfast today and let me drive home. It's a good thing we both like to drive. I think, too, he also knows now that it something would happen in Houston, I can get us home with no problem!

We're planning on taking it easy tonight. I have to work tomorrow and he's got some business to take care of before we head to Memphis Tuesday to see Dr. Garrett. And then we should hear something from Nichole about the test results this week.

This was a learning experience for us. We now know what supplies we need to take, and what we don't need to take, that can be purchased after we get there. When the description says basic cooking utensils and dishes it means just that, 1 skillet, 1 pan, 3 plates, 2 glasses, 2 forks, 1 sharp knife, 3 spoons, 4 cups, 3 bowls and a can opener that broke the only time I tried to use it. No dishwashing liquid, but a 1 time packet of dishwasher detergent. Of course there weren't enough dishes to justify using a full size dishwasher! But like I said, it was a learning experience. If we are to go back we'll be better prepared.

There probably won't be a post tomorrow, but I'll let you know about the visit to Dr. Garrett.

Thanks for all the comments and good wishes. They helped keep me going all week.

Saturday, July 11, 2009

We are packing it in and headin' to the house. Stopping again in Texarkana and coming the rest of the way on Sunday. Hopefully it will be another uneventful trip. Bill still isn't at 100% so I may do most of the driving...who knows!

I'll check in with everyone later.

Friday, July 10, 2009

After sleeping for most of 24 hours, Bill is much better today. He had to have some of the labwork redone today and found out that the tech who took his blood Tues is out sick! Kinda makes you wonder who infected who!

The MUGA test has been done and we are free to leave any time we want. Since we are both tired we decided to wait until tomorrow morning to leave. We're going to stop in Texarkana again and be in sometime Sunday.

We won't have any results from the tests until sometime next week. Hopefully he has passed everything and will be put into the study. And if he's included, then we have to hope that he will get the stem cells. It's not a double blind study but he won't know if he gets the cells or not, only the doctor will know.

As of now we're going to pack things up, get a good dinner and get to bed early. Hopefully we'll sleep better than the last 2 nights and be rested to travel tomorrow. I'm just sorry we didn't get to do any sightseeing this time. Oh well, there will be other times.

Thursday, July 9, 2009

He's a little better this evening. He has slept most of the day and has only managed to eat a little broth and a couple of crackers. I ventured out to the Kroger and got some more Tylenol and Imodium. He's so cold that he had to put on a jacket to sit and eat and could barely hold the spoon. We've turned the air off in the room and so far it hasn't gotten too stuffy. We're both beginning to think it's a bug of some kind and not a reaction to the drugs.

He's gotten back into bed now and piled the covers on. Doesn't even want the TV on. Just wants to sleep.

I still have to clean the kitchen up since he's decided not to eat anymore, and he can't eat anything after midnight if they are going to do the test tomorrow, so I'd better get going. This place is so small it can't stay cluttered for too long.
Well, we did not have a good night. Bill has apparently had a reaction to the drug they used for the stress test. He started with diarhea about 8:30 last night and started vomiting around 5:30 this morning. He's still in bed, and sleeping, which for him is not normal. He said he has a terrible headache so I ventured out to a little corner grocery store we found last night to get some Tylenol and soup. He's taken the Tylenol and kept it down and finally took his morning meds while I was gone and kept them down so maybe it's finally out of his system.

We discovered last night that things close early here. We decided against room service and went to Luby's Cafeteria only to discover it closes at 8! And after driving around the only other place we could find was a McDonald's. Since we had McDs. for lunch we didn't want to go there again. That's when we found the little grocery store.

I've spent a lot of time online today finding places. There's a Kroger not too far and a Target not too far in the opposite direction from Kroger. Mayber later today I'll check them out. It will depend on how Bill feels. I don't want to leave him alone for long.

Hopefully later today I'll be able to post that he is better. I don't think they would do the test tomorrow if he is sick. They are using a different isotope tomorrow, but if he's already weak, who knows how he would react.

Wednesday, July 8, 2009

We have "gooder" news tonight! The RNA came in and the MUGA test is scheduled for Friday morning! Now we don't have to come back for it next week. And, the person who was in line in front of Bill has "tested out" which means he is not qualified for the study. Soooo, if all of Bill's tests are good, he's in. Our nurse told us that it will take a full 7 days to get all of the test results so we know we won't come back next week, but it could be the week after.

It was a very long day again today. We didn't have to be there until noon, but the tests were delayed, of course. Bill could not eat this morning according to Nicole, the nurse, but the guys in the lab said he could have had breakfast this morning! As soon as they were done they sent him to get some food. The Big Mac was gone in about 10 minutes! We didn't leave the hospital until 6:30 and we're too tired to go get something to eat. Bill has his holter monitor and he feels like a pin cushion from the IVs. So, I'm going to order online from room service. It's not here in the hotel but an online service. We'll have to see how it goes.

It's going to be strange to have a free day tomorrow. Don't know what we'll do, if anything. Swimming is out because of the monitor and I don't know if we'll venture out. The traffic here is wild! But, who knows. After a good night's sleep we may be ready for anything.

Hope all of you have had a good day!

Tuesday, July 7, 2009

What a full day, and they weren'te able to do one of the tests! We got to the hospital at 9:45 and left at 3:30. So far everything looks good. Our nurse told us that there is only 1 slot left in this particular study and there was 1 person in front of Bill. If he "tests out" then Bill would be in, providing everything is ok with all of his tests. If the other person makes it, the next one would start in 28 days and Bill would be first in line for it. The bad part of that means that all of these tests would have to be repeated to make sure nothing had changed in the meantime.

The test that we're waiting on is supposed to ready next week. So it looks like we will probably be coming home on Thursday, going to see Dr. Garrett in Memphis on Tuesday and then heading back here so they can do the test on Thursday and back home by the week-end. Like I said before, we need frequent driver miles!

For those of you who have left comments or asked questions, I have just now figured out how to see the comments, and to reply. Of course the reply goes into the same post as the comment and question, so I will try to include the answers in the next post. Some of you won't be interested in the info, but right now that will be the easiest for me until I figure out more about using this.

Harris, you asked how this will affect the transplant. He can still have the transplant. He can also drop out of the study at any time. So, if they call with a heart he will leave the study. The only risk is kinda like a false negative test. A test they do for, I think, RPA can show readings that may lead the transplant team to think that a heart is not compatible. But, your dad has weighed the facts and wants to proceed with the research. The nurse said that only 2 have had elevated numbers.

Linda, you wanted to know where the site came from. I went to to start and after I set up the account and named the blog, they set the of the account. You don't have to publish the blogs you set up. I also have one that is my own private journal, even though I keep a handwritten journal. Sometimes I think of things when I'm at work and don't have my journal so this lets me get the thoughts down.

We still haven't found a grocery store to get some supplies and there aren't too many restaurants in the area that we can see.

Thanks for the comments. I'll post again tomorrow.

Monday, July 6, 2009

We've made it to Houston. Bill thought I got us lost when we got off the freeway, but I was right! If he had just kept going we would have gone straight to the hotel with no problem. Our little studio is set up nicely except for the kitchen. The cabinets are all waaay up high. I did not bring my stepstool, so Bill will have to do some kitchen duty to get the dishes down, especiall if he wants me to cook!

We still have to find a grocery store to get some supplies. There's a shuttle in the morning that will get us to the hospital. St. Luke's is across from the MD Anderson Cancer Center and we can see it from the hotel. The entire medical center area is HUGE.

There are lots and lots of cranes in the area. Whether this is new construction, or still repairs from Hurricane Ike is unknown. I was impressed with what I saw coming in. Of course the route we took is different from where we were before, but there was no left over destruction. There also weren't a lot of bare areas from tree loss. I told Bill I would like to go back to the area we were in to see the Chase Building. We saw it before the storm when it was sandbagged, we saw it after with all of the windows blown out and I would like to see it now to see if the area has recovered.

Sunday, July 5, 2009

So far, so good. We are halfway to Houston, give or take a few miles in Texarkana. Weather was good, cloudy but no rain until a few sprinkles right before we got here. Traffic wasn't too bad either, especially with it being the end of a holiday week-end. Tomorrow should be about the same, but we'll have to time it to miss rush hour in Houston since the Heart Institute is downtown.
Bags are packed, van is ready to be loaded. The great adventure is about to begin. It looks like the weather is going to try to cooperate. We're staying in Texarkana tonight and going on to Houston tomorrow so we won't be so tired when we get there. Maybe the holiday traffic won't be too bad. Have a great Sunday everyone!

Friday, July 3, 2009

As usual there's been a slight change of plans. The testing in Houston was supposed to take 2 days, Tuesday and Wednesday. The nurse called late yesterday afternoon and told Bill that they are out of the RNA (some kind of radioactive test solution) that is needed for the mapping of his heart. They wanted to re-schedule the entire 2 days for the following week, but he has an appointment with Dr. Garrett the transplant doctor that week. So, since they may have the solution on Thursday or Friday, we are going to stay for a couple of extra days and be home either Saturday or Sunday, depending on what day they can do that procedure. Otherwise, if it hasn't come in by then he will have to go back to have just that test done. Best case scenario if that is what happens is for the team to have all of the other tests evaluated by then and after the MUGA test, could start the next step which is the actual stem cell implantation.

Did I explain that he has a 15 in 20 chance of getting the actual stem cells? I don't think I did and I don't want to give the impression that getting the stem cells is certain. There are also different "doses" of the stem cells, 25 million, 50 million and 75 million.

All for now, have a great day everyone!

Wednesday, July 1, 2009

Happy July! You know, you kinda expect your family to be interested this stuff. But when your friends let you know, by signing up to follow the blog, or even emailing and letting you know they've checked it out, it makes you feel so blessed!

I'm probably not going to have a new post until Sunday since nothing is changing until then, unless of course the study is cancelled again! But, feel free to come back and read what's here again, or just see if something is new.