Another Bump and Ended Up In The Hospital!

While I was posting the last blog on Friday, Kurt had not been feeling well all day. Then around 5:30 pm he started to throw-up and kept doing several times. I called the hospital around 8:00 to see how to give him his night meds and keep them down. They decided that they should see Kurt tonight. So Kurt was not happy that I had called, but he was really sick. By the time we got ready, and I never know how long he will stay, so I packed some of his things we got to the hospital around 9:30 pm. They had to come and get him in a wheelchair, because he was so weak. I took our things up to the room, and they were admitting him. They gave him IV nausea medicine and then started giving him fluids, because his blood pressure was low and he was dehydrated. I decided to spend the night because he is still suppose to have 24/7 care and I knew that the nurses couldn't sit in there all night. The new rooms do have a chair that folds out to a bed, and I actually slept a little. Kurt took some ambien to help him, and he slept too, in between going to the bathroom and the nurses coming in during the night.
They came in the morning and told us that his counts looked pretty good, and his nausea was much better and after only having 1 IV nausea for the whole night. They told him to eat some breakfast and see if he could keep it down and not get sick. The PA told him that he might get to go home later. So he ate, had another chest X-Ray, (I think they are really watching for H1N1 in these patients) and then by the time they decided he could go home, they wanted him to eat some lunch and keep it down. We told them that we needed to be home by 4:00 to watch the BYU game. The PA being a UTE fan told him if he was going to go home to watch the game, that she wouldn't let him go home. He didn't think she was very funny.
Around 4:00 after they had given him all his meds, he was let go. We listened to the game on the way home, and then watched the rest at home. It was really nice to have to stay only one night.
They did tell us that this process takes a long time and that we will probably have to go back in at some time in the future. We're going to try our hardest to not let that happen. They also started him on another IV, so now I get to give him meds all day long. I really think I should become a nurse!
Cindee

I Don't Think We Knew What We Were In For!

If anyone has known someone who has gone through a bone marrow transplant, please let us know. We were not expecting this at all. I think they can tell you things, but until you're going through it, you just don't know what it's like. I need to talk to someone, and find out if this is normal.
They are having him come weekly to the clinic, because he is taking steroids, it makes his muscles very weak, so he has not been moving too much this past week. Yesterday we had to go to the clinic, and it was hard for him to walk in. Then we were there for a couple of hours waiting for them to come and talk to us. After that we had to go see the cardiologist, to follow-up with his low blood pressure. He told us that he thought things were fine and that we could come and see him on a as needed basis. So by the time we got done, he was exhausted. We had to get a wheelchair to take him out to the car. Needless to say, he rested the remainder of the day and night. Ususally the day after is hard on him, because he is so tired from the clinic, so today has been the same, but a little worse, he has been very nauseated and threw up a couple of times.
It is very frustrating for us. He does okay some of the time, but most of the time he feels miserable! The doctor did say that this is all normal, that it will take some time(months) before he feels better, and that this is a very bumpy road, and also to expect to be admitted to the hospital at least once during recovery. We were very discouraged after yesterday.
So if anyone can tell us that what we are going through is what we should expect, please let us know. We just need someone to tell us that it does get better.
We still are taking one day at a time, and are grateful for all of the help and concern from everyone. We have a great family, and great friends in our lives. We know that we just have to keep having faith that he will soon get feeling better again. Thank you for everything.
Cindee

Doctors!

Wow this week has been eventful. We have not only been to the Bone Marrow Clinic 3 days out of 5, but he has also seen a urologist, and a cardiologist. He has been getting up a lot at night to go to the bathroom, so the urologist started him on a another pill, but that one also made him extremely dizzy, to where he couldn't stand up very well without feeling like he was going to fall, and one morning he did fall. So we stopped taking that pill. Then the doctors thought he should see a cardiologist to help regulate his blood pressure, it keeps going very low at times and makes him very lightheaded. So we saw him and he didn't want Kurt to take anything else, because of all the side effects, and he thinks he has enough to deal with right now. So nothing was really fixed, and they said we would just have to take it a day at a time and see if things get better. When his blood pressure has been low, the bone marrow doctors loaded him up on IV fluids, and it seems to help. So now every day, I have to give him fluids through his central ports which takes about 1 1/2 hours, and also magnesium, which takes about 5-6 hours, then I have to flush the lines out and fill them with heparin. Besides all of this, there is the blood sugar checks and insulin shots, because of the steroids, he has steroid induced diabetes, and all of the medications to keep track of. I can't believe I'm doing all of these things without a nursing degree. I just might change vocations once this is all done.
They still say he is doing well, most people are just getting out of the hospital right now, and he has been home for 2 1/2 weeks! They told us his counts are very good, and in time he will get better. Everyday is different, some days are better than others. We just keep hanging in there, and know that it will get better someday. Thanks again for your concern.
Cindee

It's so great to have him home!

Since last week, things have gotten a little better, except for the fact that he started getting a rash on his arms, the PA said that it was Graft versus Host disease. This is where the body starts to reject the new marrow, they have told us that a little of this disease is good, because it shows that the body is working to accept and make the marrow work. They also told us that it ensures that the Luekemia won't come back. So we're not too worried about this. It can effect the skin, eyes and liver. They have increased his steroids to see if they can get rid of it. Over the weekend it hasn't started going away, but has spread over his whole body. We go into the clinic tomorrow, so hopefully they can do something different. Besides that, this past few days have been better. He went to the clinic last Wednesday, and they told him this will take awhile for him to feel better. They also told him to exercise as much as possilbe, because the steroids will make his muscles very weak. After coming home he decided to walk up and down the stairs a couple of times. Then the next day, he did a few more times and we went for a walk at a park. He has been doing more each day, and walking in the park each day. I hope the weather permits us to keep doing this, I think it is good for him to get out of the house, although home is much better than the hospital.
He has also been awake more during the day, than last week. I think things are slowly progressing for the better. He actually looks great to me. He is eating well and talking more, he has a hard time sleeping at night, this might be because of the steroids too. Gotta love all the meds and their side effects!
I am very grateful that he is doing so well. He opened a fortune cookie and his read, that his current plans will succeed within the year. I don't usually believe these, but this one I do. I know we have been so blessed and continue to be blessed. Thank you again for your concern, thoughts, and prayers.
Cindee

Another Roller Coaster!

Wow, if we had known what this was going to be like, we might not of done it. Kurt did pretty good after the transplant, especially with his blood counts coming back so fast, and they did let him out of the hospital early. But now he does not feel good at all. We read on an internet site, that people experience flu like syptoms for several weeks, and they are so weak and tired that all they can do is eat some, walk around the house a little and sleep. He does pretty good with the sleeping, but during the day, the nights he seems to have to go to the bathroom all night long, therefore we're not sleeping too much during the night. He has been dehydrated a couple of times, needed platelets a few times, been nauseated, lightheaded, and just wants to sleep. Hopefully in a couple of weeks, he will start to feel better. Please keep him in your prayers. Thanks again for everything.
Cindee