Just had first appt with Dr. Kaufman

[fireflymd]

Yes, I live about 700 miles away, so I was able to spend a long day traveling to see him for a midday appointment both times. After that, I've been able to have phone appointments.

Though he was an out of network doctor, all the tests he ran except the CellTrend (which was done in Germany) were covered by my insurance. They went to LabCorp and Quest and Dr K was sensitive to cost. He also battled my insurance to get me IVIG.

Do you know what diagnosis he used to fight for your IVIG?

I was told this would require a demonstration of poor immune function.

 

[Learner1]

CVID - common variable immune deficiency

 

[bspg]

@bspg @Learner1
Did either of you travel to see Dr K? I will be travelling and therefore will need to pay for all tests out of pocket. I'm curious to know the ballpark for how much this will cost.

I PM'd you.

 

[sue1234]

Does anyone know if this doctor or the other one that works with him can be seen by phone or Skype only? I live too far away and don't travel well!

 

[Learner1]

He sees patients twice in person, and then subsequent appointments can be by telephone. It makes sensed that he can do a physical exam and get to know you in person, especially with such a complex disease.

I had to fly to see him, but it was worthwhile. He has arranged nursing care for me in a different state and emails me lab requisition.

 

[Gingergrrl]

Has anyone heard from @bspg (who started this thread) lately? If you see this @bspg can you let us know if you are okay?

 

[sue1234]

He sees patients twice in person, and then subsequent appointments can be by telephone. It makes sensed that he can do a physical exam and get to know you in person, especially with such a complex disease.

I had to fly to see him, but it was worthwhile. He has arranged nursing care for me in a different state and emails me lab requisition.

Thank you for that information!

 

[bspg]

@Gingergrrl I am alive. I've been wanting to post an update but just too exhausted. Thank you for thinking of me!

Long story short: I'm still seeing Dr. K. I've had improvement in many symptoms but am still not very functional overall due to extreme exhaustion. Seeing an immunologist tomorrow about early sjogrens antibodies.

I hope you all are doing okay! I've only been logging in here and there to search for info, so I have no idea what is going on with everyone. I hope to catch up on everything eventually!

 

[Gingergrrl]

@Gingergrrl I am alive. I've been wanting to post an update but just too exhausted. Thank you for thinking of me!

Yay, it's great to hear from you @bspg and I was worried about you!

Long story short: I'm still seeing Dr. K. I've had improvement in many symptoms but am still not very functional overall due to extreme exhaustion. Seeing an immunologist tomorrow about early sjogrens antibodies.

I'm glad you are having some improvements and I hope your appt went well with the immunologist.

I hope you all are doing okay! I've only been logging in here and there to search for info, so I have no idea what is going on with everyone. I hope to catch up on everything eventually!

I am actually doing very well (much better than when I last talked to you via PM). I haven't used wheelchair in 3-4 months (it's now folded up in my closet) and I can walk and drive again! I can also walk my dog, who finally made a solid recovery from her back surgery. I will be starting my own PT on Sat to try to strengthen my muscles and reduce muscle pain from all of the new activity I am able to do. I am basically in "remission" (for lack of a better word) from my treatments but we do not know if it is temporary or permanent. I'm completely done with IVIG but will still do maintenance Rituximab infusions. We will catch up some day in the future

 

[MEMum]

Such good news re your health @Gingergrrl and your dog.