You may or may not have noticed, I came home from Salt Lake and dropped out of the blogger's universe. I thought about it several times, even sat down a couple of times to write a quick word or few, but never signed in and actually wrote and posted anything.
Aside from my being extremely lazy was the fact that I really don't have anything much to write about. Since we've been home, everything is going very well, I have seen Dr. Te a couple of times and had standard blood tests taken each week. Everything they are testing for is coming out entirely normal. I am back to work full time (nearly) and am nearly weaned off any nausea medicine - not totally, but not too much. The testing that will probably be extended to bi-weekly will go until the end of September when I get the full range of tests done to see how well the second transplant went. At that time the doctors, both Dr. Te and Dr. Peterson from LDS Hospital will make the determination on what kind of maintenance drugs and how long I will need to take them. We should know this by the second week of October or pretty close to there.
My hair is just starting to grow back, I'm still pretty much bald and don't have to worry too much about shaving more than every 3-4 days. I think the results are probably a little cumulative to make the hair growth a little slower this time.
I doubt I'll be very timely in my posts, but I'll try to do a little better, maybe after we go to Utah for the holiday weekend. Hope everyone had a good summer, and everyone is doing well. OK, until next time.
Monday, August 22, 2011
Thursday, July 21, 2011
7/21/2011 We're coming home - we've done our time
We got good news yesterday, all my normal blood tests were normal, and so they went forward with removing my central line yesterday afternoon. We had our exit interview and were released from LDS Hospital care. We'll be packing up today and plan on taking to the highway tomorrow morning that will put us back in Vegas sometime this weekend. We are ready to come home.
I'm not completely finished with doctors yet. I have an appointment with Dr. Te next week and at day 100 (currently about day 31) I get another complete round of blood and other tests to determine just how good everyting went this time around and they plan for my maintenance medicines and procedures that I'll have to do for a while. So keep us in your thoughts and prayers for a few more weeks at least to help with this phase of the process then hopefully we'll be in great shape and hear the "full remission" words we are waiting for.
Thank you for all your support and until next time, hope everyone is safe and well.
I'm not completely finished with doctors yet. I have an appointment with Dr. Te next week and at day 100 (currently about day 31) I get another complete round of blood and other tests to determine just how good everyting went this time around and they plan for my maintenance medicines and procedures that I'll have to do for a while. So keep us in your thoughts and prayers for a few more weeks at least to help with this phase of the process then hopefully we'll be in great shape and hear the "full remission" words we are waiting for.
Thank you for all your support and until next time, hope everyone is safe and well.
Wednesday, July 13, 2011
7/13/2011 Playing the waiting game again
As I wrote last week, I got out of the hospital a few days earlier than I thought I would and several days sooner than I did last time in April. I think that was a good thing, but it remains to be seen. I'm not as strong as I was last time and I think that follows up with what happened this week.
Don't get me wrong, I believe I was ready to get out of the hospital when I did, they were keeping a 24/7 watch on me, but I don't think it was needed any more this time around which has been backed up by how I'm doing.
It was real nice for Amanda to come up and see us last week and weekend and I was real glad she was able to make it out to see the Pronk family, we would have wanted to go but I have to be pretty careful right now. Amanda said they were all doing pretty well.
So back to me, We met with the doctors yesterday (Tues. July 12th) and didn't really know what to expect going in but many of them were trying to get my line removed and to get the exit interview at the end of this week. - Well, that's not what is going to happen. This is how we are expecting things to go if my mind and body follow the plan. Next Wednesday morning I will go into the clinic to get what is hopefully my last set of labs for a while. Then just after noon, we'll have our exit interview with the medical staff and if everything goes well with that, they'll send me downstairs to get my line removed and they will kick me loose to go back to the care of Dr. Te in St. George until about day 100 when they will run all the labs and tests again to see how we did this time about getting all the little buggers. Hopefully things will be good enough that I'll just have some maintenance medication for a while and can achieve a full remission.
If all goes as planned, we should be leaving Salt Lake Friday morning July 22 to start heading south. Since it's the holiday weekend we haven't really talked about how long it will take us to get to Vegas, but I suspect it will be a couple of days.
We'll write again next week after plans are finaled or we know anything else to tell everyone.
Don't get me wrong, I believe I was ready to get out of the hospital when I did, they were keeping a 24/7 watch on me, but I don't think it was needed any more this time around which has been backed up by how I'm doing.
It was real nice for Amanda to come up and see us last week and weekend and I was real glad she was able to make it out to see the Pronk family, we would have wanted to go but I have to be pretty careful right now. Amanda said they were all doing pretty well.
So back to me, We met with the doctors yesterday (Tues. July 12th) and didn't really know what to expect going in but many of them were trying to get my line removed and to get the exit interview at the end of this week. - Well, that's not what is going to happen. This is how we are expecting things to go if my mind and body follow the plan. Next Wednesday morning I will go into the clinic to get what is hopefully my last set of labs for a while. Then just after noon, we'll have our exit interview with the medical staff and if everything goes well with that, they'll send me downstairs to get my line removed and they will kick me loose to go back to the care of Dr. Te in St. George until about day 100 when they will run all the labs and tests again to see how we did this time about getting all the little buggers. Hopefully things will be good enough that I'll just have some maintenance medication for a while and can achieve a full remission.
If all goes as planned, we should be leaving Salt Lake Friday morning July 22 to start heading south. Since it's the holiday weekend we haven't really talked about how long it will take us to get to Vegas, but I suspect it will be a couple of days.
We'll write again next week after plans are finaled or we know anything else to tell everyone.
Monday, July 4, 2011
7/4/2011 Independence Day +1
I got a pleasant surprise yesterday on the 3rd. Everyone was happy with how my numbers were looking and they kicked me out of the hospital. I kind of thought it might be coming but didn't dare speculate incase it didn't happen.
Although, I almost went AWOL the day before on Saturday. Something happened to the air conditioning system throughout the hospital and most of the rooms were in the 85 - 90 degree range that wasn't good for many of the patients up there. some of us found a little corner or a room that for some reason was working and was much cooler than the rest of the place. Patty and I took a spot in the waiting room of the BMT Clinic and watched a movie but that was lucky for us, there were some patients with fevers that the staff was really working hard to keep stable. They said the ICU and the NICU were both affected, but we never heard of any bad news, that was very fortunate. They had A/C workers up on the roof working on it and finally got it fixed so we could all go back to our rooms, but they were waiting a while before taking some patients back to be careful.
So, yesterday July 3rd they got me ready to go home, somehow I had eaten enough for them and I had drank enough liquids for them to let me go. I guess I am one of a very small group of patients that get out of there without having a red blood cell transfusion, which is OK with me. I had two units of platelets but that was all.
Patty came up and while she was there, they let me go. I came back to the apartment and went in for a nap that other than waking up to eat and use the facilities a couple of times got over about 11:00 am this morning July 4th, so I had to leave the hospital to get the rest I really need.
Now I don't know what we are going to do about watching some fireworks, maybe we won't since they'll all be past my bedtime anyway.
I am losing most of my hair again, it just started of the past couple of days, I'll probably find a barbershop on Tuesday to take everthing down to the number 2 blade length again.
I have an appointment at the clinic tomorrow morning, that should give me a better idea as to how long we will be expected to stay in Salt Lake. I don't know what their perameters for sending me home will be exactly. I still have the Central Line Catheter in and don't expect they will order it to be taken out until next week some time when they are certain I'm ready to go.
We'll let you know as we know more. I think Amanda is coming up to see us for a few days, that will be very nice. We do thank everyone for their thoughts and prayers, I know they helped.
Although, I almost went AWOL the day before on Saturday. Something happened to the air conditioning system throughout the hospital and most of the rooms were in the 85 - 90 degree range that wasn't good for many of the patients up there. some of us found a little corner or a room that for some reason was working and was much cooler than the rest of the place. Patty and I took a spot in the waiting room of the BMT Clinic and watched a movie but that was lucky for us, there were some patients with fevers that the staff was really working hard to keep stable. They said the ICU and the NICU were both affected, but we never heard of any bad news, that was very fortunate. They had A/C workers up on the roof working on it and finally got it fixed so we could all go back to our rooms, but they were waiting a while before taking some patients back to be careful.
So, yesterday July 3rd they got me ready to go home, somehow I had eaten enough for them and I had drank enough liquids for them to let me go. I guess I am one of a very small group of patients that get out of there without having a red blood cell transfusion, which is OK with me. I had two units of platelets but that was all.
Patty came up and while she was there, they let me go. I came back to the apartment and went in for a nap that other than waking up to eat and use the facilities a couple of times got over about 11:00 am this morning July 4th, so I had to leave the hospital to get the rest I really need.
Now I don't know what we are going to do about watching some fireworks, maybe we won't since they'll all be past my bedtime anyway.
I am losing most of my hair again, it just started of the past couple of days, I'll probably find a barbershop on Tuesday to take everthing down to the number 2 blade length again.
I have an appointment at the clinic tomorrow morning, that should give me a better idea as to how long we will be expected to stay in Salt Lake. I don't know what their perameters for sending me home will be exactly. I still have the Central Line Catheter in and don't expect they will order it to be taken out until next week some time when they are certain I'm ready to go.
We'll let you know as we know more. I think Amanda is coming up to see us for a few days, that will be very nice. We do thank everyone for their thoughts and prayers, I know they helped.
Thursday, June 30, 2011
6/30/2011 More Platelets today
I am doing pretty well here on East 8. On Tuesday they gave me a unit of platelets because they were way down and then again today they gave me another unit of platelets. I haven't had to get any red blood cells yet, maybe tomorrow, or with lunch maybe not it my stem cells start the engrafting process and start making them for me.
The doctors come to see me each day, but don't spend too long because my situation is boring, just waiting for the stem cells to kick in and take over. Still hopeful of getting out of here by sometime next week if I can keep eating and drinking well enough for the staff here.
In some ways I am pretty lucky that I am locked up inside here with my hepa filters running. Patty is being hit very hard with allergies and has spent most of today taking medication and sleeping.
Not too much else going on, I've been checking out the windows in the hallways and I think we'll be able to see a few fireworks that will be going off on the 4th. Hope you all have have a safe holiday weekend.
The doctors come to see me each day, but don't spend too long because my situation is boring, just waiting for the stem cells to kick in and take over. Still hopeful of getting out of here by sometime next week if I can keep eating and drinking well enough for the staff here.
In some ways I am pretty lucky that I am locked up inside here with my hepa filters running. Patty is being hit very hard with allergies and has spent most of today taking medication and sleeping.
Not too much else going on, I've been checking out the windows in the hallways and I think we'll be able to see a few fireworks that will be going off on the 4th. Hope you all have have a safe holiday weekend.
Sunday, June 26, 2011
6/26/2011 Here comes the Neupogen agan
It is day 6 since getting the last batch of stem cells. I'm feeling pretty good, but because all my blood counts are lowering, I have been spending a lot of time snoozing for the past couple of days. None of the numbers are low enough to require a transfussion, maybe in a couple of days-don't know.
This afternoon I got my first Neupogen shot again, you might remember it is a growth factor drug that will encourage the stem cells to get where they are suppost to be and hurry up and start producing the cells they are suppose to produce to get the system engrafted and down the road towards building up the numbers to get us out of the hospital and back to the apartment for a while until they kick us loose to head back to Vegas. I'm guessing about a week and a half if the same holds true this time around.
We talked to the kids today to wish Amanda and Matt happy birthday and also talked with Josh for his typical Sunday afternoon conversation. They all seemed to be doing pretty well and we spent the time catching up on things that had been happening with all of us
This afternoon I got my first Neupogen shot again, you might remember it is a growth factor drug that will encourage the stem cells to get where they are suppost to be and hurry up and start producing the cells they are suppose to produce to get the system engrafted and down the road towards building up the numbers to get us out of the hospital and back to the apartment for a while until they kick us loose to head back to Vegas. I'm guessing about a week and a half if the same holds true this time around.
We talked to the kids today to wish Amanda and Matt happy birthday and also talked with Josh for his typical Sunday afternoon conversation. They all seemed to be doing pretty well and we spent the time catching up on things that had been happening with all of us
Friday, June 24, 2011
6/24/2011 Happy Birthday to Amanda and Mathew
Not too much going on these past couple of days. They take labs everymorning about4:00 am and then sometime during the day they give us the results. The blood cell numbers are starting to drop to where within a couple days I will probably have to get transfussions of some kind,whether they are red blood cells, white cells or platelets.
Happy Birthday to Mathew (today) and Amanda on Sunday, they are both doing some travelings and hope and pray they travel safely. They are both in Coral Canyon tonight because of their committments.
The doctors and nurses are working pretty well with us to act on the nausea before it becomes too bad. I still have some issues during the middle of the night and first thing each morning when I have an empty stomach, but their great to give me what I want - when I want them.
Patty is still here with me tonight to keep me company and help get me things as I need them. I can't imagine what I would do without her and all her love and support. Kimberly came up and saw us today and went to lunch with Patty. I think they had a good time.
I'll write in a few days, thanks for all you thoughts, prayers, love and support.
David Pectol should be back home tomorrow after serving his rotation in Afghanisatan, we are so grateful that he is returning safe to all of his family. We are unfortunately going to missing Jacob's baptism, he's been ready for quite some time, but was waiting for dad to come home.
Happy Birthday to Mathew (today) and Amanda on Sunday, they are both doing some travelings and hope and pray they travel safely. They are both in Coral Canyon tonight because of their committments.
The doctors and nurses are working pretty well with us to act on the nausea before it becomes too bad. I still have some issues during the middle of the night and first thing each morning when I have an empty stomach, but their great to give me what I want - when I want them.
Patty is still here with me tonight to keep me company and help get me things as I need them. I can't imagine what I would do without her and all her love and support. Kimberly came up and saw us today and went to lunch with Patty. I think they had a good time.
I'll write in a few days, thanks for all you thoughts, prayers, love and support.
David Pectol should be back home tomorrow after serving his rotation in Afghanisatan, we are so grateful that he is returning safe to all of his family. We are unfortunately going to missing Jacob's baptism, he's been ready for quite some time, but was waiting for dad to come home.
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