Hello everyone. I want to thank everybody for their your thoughts and prayers. It's really meant a lot to myself and my family. I'd especially like to thank all of the Campbells, Floras, Gotschs, Hesters, Wisthuffs, Rexeisens, Moeschbergers, Louis, and the Guidos who all went together and purchased me the laptop that I'm using to write this.
Sara has returned to NC, my parents back to IL and Melissa is getting back to work again so I'll try to keep everyone updated on my progress.
I have had quite a bit of progress in the last two days but wanted to let it all play out before posting.
As Melissa said, we've been having some trouble with my insurance accepting my next step of rehab. All of the medical professionals agreed that I needed to go into an acute rehab center which would give me the attention and therapy I am requiring to get stronger. United Healthcare (my insurance provider) wanted to send me to a nursing home since it'd be cheaper. Melissa had done a lot of asking around and settled on Rehabilitation Hospital of Indiana on the west side of Indianapolis as our preferred acute rehab facility so a representative came up and talked with us yesterday around 3pm. She made some calls and by 5:30 we were approved by insurance, accepted by RHI and my discharge papers were signed. I was transferred down here early this afternoon. The goal set forth by my hematologist is to be able to walk into his office and sit down under my own strength in his office on March 29. If I'm able to do this, they will check me in for ~4days and give me my first round of maintenance chemo through an IV, the same way they had done before which worked extremely well. If I am not strong enough by then, they will have to back down the dosage and administer it differently. So that's my goal, getting walking in 4 weeks.
Now I said that there was a lot of good news and this is true. Not only did we get over the insurance obstacle yesterday, but I also was able to transfer myself to a wheel chair, stand up and take my first steps (with the help of a walker and two physical therapists). I don't remember sweating so much last time I walked...
I start the intense rehab tomorrow morning at 6am so I'm going to roll over on my good ear and try to block out my roommates blaring tv and get some sleep. I'll write an update tomorrow with a summary of how therapy went, if I don't end up sleeping the rest of the day.
Eric
Tuesday, March 2, 2010
Friday, February 26, 2010
Follow-Up Visit with Hematologist
Hi Everyone,
Yesterday, Eric had his first follow-up visit with the hematologist. We had a pretty nice ride down to Indy. The ambulance drivers were nice and joked around with Eric quite a bit, and we listened to Bob and Tom all the way down (which Eric hasn't heard in a while). When we were going down the hallway to get to the hematology center, we just happened to walk past one of Eric's old critical care residents. She saw Eric when he was going through his worst times, and the look on her face when she recognized Eric was amazing. :) She was so astounded by how good he looks compared to when she saw him last (the day he woke up for the first time, so Eric doesn't remember her at all).
We had a good visit with the hematologist. This was the first time that Eric met him. The hematologist wasn't NEARLY as depressing as the last time I saw him, so that was good for me, too. We were able to talk about the plan of action where chemo is concerned, and get some help from him for the insurance company as well. The doctor said that Eric will have to go through at least 2 more rounds of chemo, the first starting a month from now. If Eric is strong enough to walk into the office, then he'll get the same chemo he got before, but in a much lower dose. This is the best option, because we already know that this form of chemo is very effective at taking care of Eric's leukemia. However, if Eric is not strong enough, they will give him some chemo to take orally (via pill). This type of chemo is not as strong, but will provide him with something until he gets stronger. All in all, it is very important for Eric to get stronger as fast as possible. This leads us to our discussion about acute rehab. When we had talked to the insurance earlier this week about acute rehab (where they provide a very intense rehab schedule), they came back and said that he won't get approved for acute rehab due to his diagnoses of leukemia and acute respiratory failure. (For some reason, they don't typically approve those cases, so Eric won't get approved.) So we spoke with the hematologist about this, and decided that he would write a letter to the insurance company to outline exactly why it is so important for Eric to get stronger as fast as possible. So hopefully, this will solve that problem. The hematologist went on to say that Eric will have to get several more doses of the chemo to the cerebral spinal fluid given by spinal tap. All of these chemo treatments are given prophylatically, to help prevent relapse. Eric started out with an extremely high white blood cell count, which is not normal for this type of leukemia, so they are trying to be extra careful with him to prevent relapse. In between chemo rounds, I believe they will also give the ATRA drug again (which helps keep the gene transfer that occurs with APL from happening).
I think that sums up what we found out yesterday. His blood work came back completely normal, which is great. Also, around 1pm yesterday, they took out Eric's feeding tube! That was the last tube that was in him, so it was a very good feeling to have that taken out. Plus, I think it was very annoying to him, since it went up his nose to go down to his intestines. So, the end of the tube just hung from his nose all the time...not fun.
Love,
Melissa
Yesterday, Eric had his first follow-up visit with the hematologist. We had a pretty nice ride down to Indy. The ambulance drivers were nice and joked around with Eric quite a bit, and we listened to Bob and Tom all the way down (which Eric hasn't heard in a while). When we were going down the hallway to get to the hematology center, we just happened to walk past one of Eric's old critical care residents. She saw Eric when he was going through his worst times, and the look on her face when she recognized Eric was amazing. :) She was so astounded by how good he looks compared to when she saw him last (the day he woke up for the first time, so Eric doesn't remember her at all).
We had a good visit with the hematologist. This was the first time that Eric met him. The hematologist wasn't NEARLY as depressing as the last time I saw him, so that was good for me, too. We were able to talk about the plan of action where chemo is concerned, and get some help from him for the insurance company as well. The doctor said that Eric will have to go through at least 2 more rounds of chemo, the first starting a month from now. If Eric is strong enough to walk into the office, then he'll get the same chemo he got before, but in a much lower dose. This is the best option, because we already know that this form of chemo is very effective at taking care of Eric's leukemia. However, if Eric is not strong enough, they will give him some chemo to take orally (via pill). This type of chemo is not as strong, but will provide him with something until he gets stronger. All in all, it is very important for Eric to get stronger as fast as possible. This leads us to our discussion about acute rehab. When we had talked to the insurance earlier this week about acute rehab (where they provide a very intense rehab schedule), they came back and said that he won't get approved for acute rehab due to his diagnoses of leukemia and acute respiratory failure. (For some reason, they don't typically approve those cases, so Eric won't get approved.) So we spoke with the hematologist about this, and decided that he would write a letter to the insurance company to outline exactly why it is so important for Eric to get stronger as fast as possible. So hopefully, this will solve that problem. The hematologist went on to say that Eric will have to get several more doses of the chemo to the cerebral spinal fluid given by spinal tap. All of these chemo treatments are given prophylatically, to help prevent relapse. Eric started out with an extremely high white blood cell count, which is not normal for this type of leukemia, so they are trying to be extra careful with him to prevent relapse. In between chemo rounds, I believe they will also give the ATRA drug again (which helps keep the gene transfer that occurs with APL from happening).
I think that sums up what we found out yesterday. His blood work came back completely normal, which is great. Also, around 1pm yesterday, they took out Eric's feeding tube! That was the last tube that was in him, so it was a very good feeling to have that taken out. Plus, I think it was very annoying to him, since it went up his nose to go down to his intestines. So, the end of the tube just hung from his nose all the time...not fun.
Love,
Melissa
Tuesday, February 23, 2010
Quick Update
Hi Everyone!
Eric continues to do well with gaining his strength back. He's still having a bit of trouble sitting and standing, only now his limiting factor is dizziness, not necessarily weakness. This dizziness is expected, since he was laying down for so long. When this happens, the pressure sensors in your carotid arteries do not respond as well as they used to, and do not regulate the blood pressure to your brain as well. This will resolve in time.
Eric still has the feeding tube through his nose and is trying at all costs to get it taken out. Before this can happen, he has to prove that he can eat all the calories they want him to in order to stop losing weight. In fact, they really want him to gain weight, so Eric is trying to target all the high calorie items he can. :) I told him to enjoy this while he can, because doctors won't tell him to do this forever! Yesterday, the speech therapist opened up his diet to basically any kind of food, as long as there were no thin liquids (He's still having trouble swallowing really thin liquids like water). So today I promised to pick up beef brisket from South Street Smokehouse (one of his FAVORITES), so I think he is pretty excited.
We have Eric's first follow-up with the hematologist on Thursday, which means Eric gets to take another ambulance ride down to Indy and back. :) It'll be interesting to see what he has to say. I'm hoping to get a more definite plan for the rest of Eric's treatment (the maintenance chemo, more ATRA, etc). This will also be the first time Eric meets his hematologist. This is the one that did not have the best bedside manner, and it'll be interesting to see if that changes at all now that Eric is no longer in the ICU. Hopefully, the doctor won't be quite as pessimistic. I'll be sure to write what we find out from that visit.
Until later!
Love,
Melissa
Eric continues to do well with gaining his strength back. He's still having a bit of trouble sitting and standing, only now his limiting factor is dizziness, not necessarily weakness. This dizziness is expected, since he was laying down for so long. When this happens, the pressure sensors in your carotid arteries do not respond as well as they used to, and do not regulate the blood pressure to your brain as well. This will resolve in time.
Eric still has the feeding tube through his nose and is trying at all costs to get it taken out. Before this can happen, he has to prove that he can eat all the calories they want him to in order to stop losing weight. In fact, they really want him to gain weight, so Eric is trying to target all the high calorie items he can. :) I told him to enjoy this while he can, because doctors won't tell him to do this forever! Yesterday, the speech therapist opened up his diet to basically any kind of food, as long as there were no thin liquids (He's still having trouble swallowing really thin liquids like water). So today I promised to pick up beef brisket from South Street Smokehouse (one of his FAVORITES), so I think he is pretty excited.
We have Eric's first follow-up with the hematologist on Thursday, which means Eric gets to take another ambulance ride down to Indy and back. :) It'll be interesting to see what he has to say. I'm hoping to get a more definite plan for the rest of Eric's treatment (the maintenance chemo, more ATRA, etc). This will also be the first time Eric meets his hematologist. This is the one that did not have the best bedside manner, and it'll be interesting to see if that changes at all now that Eric is no longer in the ICU. Hopefully, the doctor won't be quite as pessimistic. I'll be sure to write what we find out from that visit.
Until later!
Love,
Melissa
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