They are supposed to drug test their patients to make sure they are actually TAKING the drugs.
hey friends. ok we had a dr appt today. not a good one. maybe the worst yet. i am going to post as many details as i can...but it was a lot to keep up with in a 1 hour appointment and my head is spinning.
Monday, December 19, 2011
As many of you know this has been a very bad 10 days for Justin.
Here is what was discussed today.
His liver elevations are out of control. This is either "autoimmune liver disease" or "chronic liver inflammation" the liver doctor will get back to us as soon as he can, but apparently its either one of these.
His vision has been suffering and it was determined today that there is swelling. I will making him an eye appt tomorrow.
His lungs are worse and the dr. could tell that by just listening to them. He will see his lung dr ASAP to discuss options.
He has extreme pain in the right side of his body. Dr. F said this is likely caused by the port that was put in. He said it probably wouldnt go away...even if they took the port out.
The IVIG that was supposed to be so wonderfully helpful is causing too much damage. Less than 10% of patients that receive IVIG have such negative side effects. Justin will have to come off of IVIG for now.
This is very disappointing.
The port may now have been a total waste of time.
Dr. F will consult with Justin's Infectious Disease Dr in Cleveland to see if we can go forward with chemo in January.
His glucose is through the roof and he needs to follow up with his primary on that before Christmas.
The steroids that he has worked so hard to come down on now have to be doubled. The long term effects of this medication is becoming worse and worse. Upping the steroids will cause increased reflux issues among other unfriendly things.
He is no longer having any pain relief from the highest legal amount of pain medication that a rheumatolgist can prescribe. I will call tomorrow to make him an appointment with the pain management doctor.
We didnt get out of there until after 5 so I have a lot of work to do tomorrow. Lots of urgent appointments to make.
Justin broke out in hives during the appointment due to the stress of all the information. Discouraging does not even seem like the fitting word. It's different than that.
This week is one of the busiest of the year in the car business. You better believe he will be working. I obviously have no say so in that :) He is tough, but pray for his strength and pain.
BTW...did you know that 100 doctors a year in Texas lose their license due to over prescribing medications? They are considered responsible when these drugs get sold on the streets.
Just a little interesting fact for the day.
So...I am nauseous and very very sad....but life must go on. We came home and the boys made a gift for our Pastor and his wife and now we are eating popcorn and watching smurfs. I am really looking foward to doing our couples devotional tonight so we can have "something else" to talk about.
This news is the pits...the bottom line is that everything is worse... but its not going to take the Merry out of our Christmas. The McElhannons do birthdays big...and Jesus deserves the party of the year. Pray that all the doctors that need to see him have room in their schedules during this busy time of year.
ps: he doesnt want to talk about it
Posted by misty mac at 5:37 PM