Just a quick update, nothing to really report on. Counts are still stable, not yet comfortable with the "R" word yet (remission), but getting there.
Hemoglobin is 13.6 (two weeks ago it was 13.3)
Platelets are at 190 (two weeks ago it was 216)
Those are the only numbers I have, Diana said that his counts looked really good.
I YET AGAIN mentioned about having his PICC removed. She asked when we were going on vacation (told her in 19 days), told her we wanted him to be able to enjoy himself, his veins are healed, he will be okay (and I also told her I was sick too death of stressing about the blood backflow in his line). She said its a very reasonable request, Dr. Gold just wanted to make sure his counts are good (great doctor, love him too pieces, but he is way too overprotective); which they have been for the past month. So she said she would email him right now, and get some answers for me. At this point I will drive 2½ hrs to Chapel Hill to get it removed, I don't care. So hopefully I hear something about that in the next day or two, or I am going to have to turn into a bitch, call up there, and raise hell myself. Rather ridiculous if you ask me.
But like I mentioned above, Jordan is doing great, feeling great, back to his old self. Have noticed though with the past few PICC dressing changes, he has lost some muscle tone in his left arm, from lack of usage. So once that is taken out, and he gets clearance, he wants to start lifting weights (he starts high school in the Fall-enough said, LOL).
Until next week...
Tuesday, March 25, 2014
Friday, March 21, 2014
Quick Weekly Update-3/21/14
Sorry that I am updating this late, they just called me a few mins ago about this past Monday's labs.
Short and sweet conversation, didn't even get his lab results. Phone call was basically to tell me that they wanted to decrease on his steroids again. So instead of 60mg a day, we are down to 48mg a day. So I am assuming all his lab counts were good since we are decreasing steroids again, just don't have an exact figure in front of me to compare from the previous week. She did mention that they are wanting to rapidly decrease him from here on out, long as his counts are good. So I am hoping by the time we go on vacation we will be completely off the steroids, which means he wont have to take the other two with it (I hope, unless he needs to stay on them because of the CellCept). I assume he wants him to remain on CellCept for the meantime, but I will ask about that when I talk to them next week, or if he wants to wean him off that too, or is that something he will be on for awhile (because it seems to be working).
We had his appt with Dr. Gold on Monday, here in town. Everything was good, I mentioned removing the PICC line, and Dr. Gold was a bit weary on that (IMO) but said he would do whatever we wanted to do. I guess the weariness is from still doing weekly blood works; but like Jordan and I both told him, he can take getting poked by the nurse once a week; done it for the past 7 years during flare ups, we can do it again.
So I mentioned again to Diana (Dr. Gold's nurse) when she called me a few mins ago, that we wanted it removed. Told her we go on vacation in three weeks, and he has been having some issues with blood back-flowing into the line (which I mentioned at Monday's appt-and no one seemed concerned about that, which I guess its common? hell I don't know), so I have had to up his Heparin from 2ML to 4ML, and also had to re-position the clamp, to stop it from doing that, so far so good, its been about a week since I have seen any blood in the line. Told her it was just ready to come out, its been in for three months now. She said that he had mentioned SOMETHING about it this week, but the conversation didn't really finish, so she would shoot him an email tonight, and call me on Monday about that. I assume they will make us come up there for that removal, which I am fine with it actually. I will make a day trip with Jordan, up there, just to be done with it all. I just want it out before we go on vacation next month, so he can enjoy himself.
Jordan also had his monthly breathing treatment by the respiratory therapist, and that went fine. Go back next month for that.
Anyway, thats pretty much it with Jordan. He still is looking & feeling great, no more muscle aches; I did keep him home from school on Wednesday, because he said he had a sharp pain in his stomach, but by evening time it was gone. So no telling what that was about.
Until next week.....
Short and sweet conversation, didn't even get his lab results. Phone call was basically to tell me that they wanted to decrease on his steroids again. So instead of 60mg a day, we are down to 48mg a day. So I am assuming all his lab counts were good since we are decreasing steroids again, just don't have an exact figure in front of me to compare from the previous week. She did mention that they are wanting to rapidly decrease him from here on out, long as his counts are good. So I am hoping by the time we go on vacation we will be completely off the steroids, which means he wont have to take the other two with it (I hope, unless he needs to stay on them because of the CellCept). I assume he wants him to remain on CellCept for the meantime, but I will ask about that when I talk to them next week, or if he wants to wean him off that too, or is that something he will be on for awhile (because it seems to be working).
We had his appt with Dr. Gold on Monday, here in town. Everything was good, I mentioned removing the PICC line, and Dr. Gold was a bit weary on that (IMO) but said he would do whatever we wanted to do. I guess the weariness is from still doing weekly blood works; but like Jordan and I both told him, he can take getting poked by the nurse once a week; done it for the past 7 years during flare ups, we can do it again.
So I mentioned again to Diana (Dr. Gold's nurse) when she called me a few mins ago, that we wanted it removed. Told her we go on vacation in three weeks, and he has been having some issues with blood back-flowing into the line (which I mentioned at Monday's appt-and no one seemed concerned about that, which I guess its common? hell I don't know), so I have had to up his Heparin from 2ML to 4ML, and also had to re-position the clamp, to stop it from doing that, so far so good, its been about a week since I have seen any blood in the line. Told her it was just ready to come out, its been in for three months now. She said that he had mentioned SOMETHING about it this week, but the conversation didn't really finish, so she would shoot him an email tonight, and call me on Monday about that. I assume they will make us come up there for that removal, which I am fine with it actually. I will make a day trip with Jordan, up there, just to be done with it all. I just want it out before we go on vacation next month, so he can enjoy himself.
Jordan also had his monthly breathing treatment by the respiratory therapist, and that went fine. Go back next month for that.
Anyway, thats pretty much it with Jordan. He still is looking & feeling great, no more muscle aches; I did keep him home from school on Wednesday, because he said he had a sharp pain in his stomach, but by evening time it was gone. So no telling what that was about.
Until next week.....
Tuesday, March 11, 2014
Quick Weekly Update-3/10/14
Just got his test results in email, everything looks good.
Something new I learned this week about Evans, thanks to the support groups that I am in....
Jordan has been suffering from fatigue the past two weeks and muscle aches, I figured he just wasn't going to sleep when he is suppose to at night (and or not sleeping well), and I took the muscle aches to us weaning him off the steroids (he WAS on a very high dose starting out-120mg a day). Well come to find out fatigue and muscle aches are symptoms of Evans, even when your counts are in normal range. So that has been an adjustment for him (and us). The fatigue is everyday, muscle aches come and go, so its not an everyday thing.
But other than that, he is pushing through it, dealing with it the best way he can at this point. Spirits are high, and he is excited about next week's appointment, because he is going to request to have the PICC removed. I sure hope Dr. Gold gives the okay on that, even if it means we have to come back at the end of the day and do it (we have to do a breathing treatment 2 hrs after our appt with Dr. Gold., and he is also backed up from not doing clinics last month). Not sure how long it takes to remove a PICC, I know the process of it, but apparently its something the nurse can do right there in the room. Keeping fingers and toes crossed! I am truly over it!
Anyway, here are his lab results:
WBC: 4.3 (was 4.8) Still low
RBC: 5.04 (was 4.57) Normal
Hemoglobin: 13.3 (was 12.2) Still low, but he hasn't been this number in months!
Platelets: 216 (was 163) Normal
Neutrophils: 68 (was 73) Normal
Retic Count: 1.0 (was 1.1) Normal
Bilirubin: 0.4 (was 0.3) Normal
Plan of attack is to decrease his steroids again, we were at 66mg a day, and we are now decreasing to 60mg a day. Appointment next week, and will go from there.
Something new I learned this week about Evans, thanks to the support groups that I am in....
Jordan has been suffering from fatigue the past two weeks and muscle aches, I figured he just wasn't going to sleep when he is suppose to at night (and or not sleeping well), and I took the muscle aches to us weaning him off the steroids (he WAS on a very high dose starting out-120mg a day). Well come to find out fatigue and muscle aches are symptoms of Evans, even when your counts are in normal range. So that has been an adjustment for him (and us). The fatigue is everyday, muscle aches come and go, so its not an everyday thing.
But other than that, he is pushing through it, dealing with it the best way he can at this point. Spirits are high, and he is excited about next week's appointment, because he is going to request to have the PICC removed. I sure hope Dr. Gold gives the okay on that, even if it means we have to come back at the end of the day and do it (we have to do a breathing treatment 2 hrs after our appt with Dr. Gold., and he is also backed up from not doing clinics last month). Not sure how long it takes to remove a PICC, I know the process of it, but apparently its something the nurse can do right there in the room. Keeping fingers and toes crossed! I am truly over it!
Anyway, here are his lab results:
WBC: 4.3 (was 4.8) Still low
RBC: 5.04 (was 4.57) Normal
Hemoglobin: 13.3 (was 12.2) Still low, but he hasn't been this number in months!
Platelets: 216 (was 163) Normal
Neutrophils: 68 (was 73) Normal
Retic Count: 1.0 (was 1.1) Normal
Bilirubin: 0.4 (was 0.3) Normal
Plan of attack is to decrease his steroids again, we were at 66mg a day, and we are now decreasing to 60mg a day. Appointment next week, and will go from there.
Monday, March 3, 2014
Quick Weekly Update-3/3/14
Jordan isn't feeling well today, so he is home from school. Came up to me last night, complaining about a headache, and then this morning he said he just felt icky. Its now afternoon time, and he says he is feeling better, a little achy, but no headache, and he hasn't had a fever yet. Giving him Tylenol (no NSAIDS because of his blood disorder) every 5 hours.
**FLASHBACK** to almost exactly 3 months ago, same type of symptoms before he went into the hospital in respiratory failure two days later. So yeah, anxiety level has been pretty high today, didn't get much sleep last night either.
Luckily today is the day his nurse comes to see him, so I let her know he was home today, and she could come earlier than she normally does (she typically comes around 4PM); she was here by 11AM. Blood Pressure was great, no fever, all signs pointing to okay.
Check my email a little while ago, and got his lab results...as I was reading them and comparing to last week's lab results, his hematologist called me with the results and plan of attack for this week.
Everything looks good, and still stabilized. His platelets have dropped a little bit, but they are still in the normal range, I am hoping they dropped because of this cold he has; have to make sure we stay on top of it, because of the CellCept he is on. Luckily his WBC is in normal range (but barely), so his body can fight this sickness off.
FINALLY got an appt for this month (after two weeks of fighting someone to set it up), so that is in two weeks, and we are keeping our fingers and toes crossed that the PICC line will be removed. We go on vacation in 41 days, so we are very excited about both.
No weaning of steroids this week, everything stays the same. Which I am fine with, I dont want to rush too fast with taking him off.
Here are his test results this week:
WBC: 4.8 (was 4.7) Normal
RBC: 4.5 (was 4.7) Normal
Hemoglobin: 12.2 (was 12.7) Still low
Platelets: 163 (was 206) Normal
Neutrophils: 73 (was 68) A little high, probably due to the steroids he is on-no concern, since it goes back and forth each week
Bilirubin: 0.3 (was 0.4) Normal
Until next week...
**FLASHBACK** to almost exactly 3 months ago, same type of symptoms before he went into the hospital in respiratory failure two days later. So yeah, anxiety level has been pretty high today, didn't get much sleep last night either.
Luckily today is the day his nurse comes to see him, so I let her know he was home today, and she could come earlier than she normally does (she typically comes around 4PM); she was here by 11AM. Blood Pressure was great, no fever, all signs pointing to okay.
Check my email a little while ago, and got his lab results...as I was reading them and comparing to last week's lab results, his hematologist called me with the results and plan of attack for this week.
Everything looks good, and still stabilized. His platelets have dropped a little bit, but they are still in the normal range, I am hoping they dropped because of this cold he has; have to make sure we stay on top of it, because of the CellCept he is on. Luckily his WBC is in normal range (but barely), so his body can fight this sickness off.
FINALLY got an appt for this month (after two weeks of fighting someone to set it up), so that is in two weeks, and we are keeping our fingers and toes crossed that the PICC line will be removed. We go on vacation in 41 days, so we are very excited about both.
No weaning of steroids this week, everything stays the same. Which I am fine with, I dont want to rush too fast with taking him off.
Here are his test results this week:
WBC: 4.8 (was 4.7) Normal
RBC: 4.5 (was 4.7) Normal
Hemoglobin: 12.2 (was 12.7) Still low
Platelets: 163 (was 206) Normal
Neutrophils: 73 (was 68) A little high, probably due to the steroids he is on-no concern, since it goes back and forth each week
Bilirubin: 0.3 (was 0.4) Normal
Until next week...
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