Treatment

[KaTrina Slaughter]

Hi,

We are in the military.  Hence, moving every 2-3 years.  It's time for orders again.  Wondering if anyone has any thoughts on Johns Hopkins or can recommend a hospital/doctor near Monterey, CA.  Our biggest problem is finding a doctor willing to try Soliris or do the dual transplant (Kidney/liver).  Looking for suggestions or advice.  Have to make a decision next month.  Trying to make the right one.  Feel like we have been pushed onto the next hospital because no one wants to take the risk of the dual transplant (and not looking for a doctor that just wants to experiment) or not sure about Soliris because they don't know enough about it (although I have printed every article on here about it). :)  Please HELP!!!!

[KaTrina Slaughter]

HI,
Well now we are pretty much 80% sure we are going to Monterey, CA.
Although Solaris may be the way, we still run into the problem of having insurance pay for it. So for now, I think I will just be patient and see what happens with Solaris. Syd is only 4, knock on wood we can continue to hold out until something comes about that isn't as scary as the dual, and something that is paid for by insurance. I'll contact University of Iowa once we get settled in Monterey. The joy of moving, I am getting exposed to lots of doctors.

Bill Biermann said:

Not to sound disrepectful, but the reason no one wants to do the dual transplant is obvious. No need to. If the Soliris/Eculibimab keeps up its current track record, (in my opinion), the dual transplant procedure will be obsolete ( I am not a medical professional, just a laymans opinion).. Time will tell, but no need to perform dual transplants when a better solution exist. Two years ago:? that was a different story, and it appeared to be a possible soluton.

If you need to find someone to perform Soliris, the University of Iowa can help there. You can contact Dr Brophy, and he may have contacts at Johs Hopkins. I know someone there will be willing to help ! Dr Brophy is on the Home Page of this website !

[Paula Blanchard Lamigo]

Don't be afraid of a rejection from Tricare (or Triwest) as that region's insurance will be. If a letter from your physician states the necessity & the validity & not to mention, the cost effectiveness of the kidney transplant + soliris will be, the coverage should not be a problem. There are websites that can help you with this to get the proper wording in as to what the Tricare military insurance is looking for in order to approve the coverage. Good luck in Monterey (if that is where your orders are) ~ I've visited there a few times. It's a beautiful area.

[Cheryl Biermann]

Ka Trina,

Also, what our doctors are having us do is to calculate the meds/equipment and supplies covered but received at home, so we get an accurate cost of dialysis vs transplant and Eculizumab. For us, this included growth hormone, feeding supplies, mickey button and rena-cal. Also his parathyroid medicine and phosphorous blockers which should go away with a transplant. The hospital will gather the charges from them. It probably includes medications that help with constipation too, now that I think of it, as this is a side effect of hemo dialysis. We will then submit these costs with an estimate of the transplant costs. They hope to get all this information to make the approval process quicker. At least you will have this information in hand when you meet the new doctors.

Paula Blanchard Lamigo said:

Don't be afraid of a rejection from Tricare (or Triwest) as that region's insurance will be. If a letter from your physician states the necessity & the validity & not to mention, the cost effectiveness of the kidney transplant + soliris will be, the coverage should not be a problem. There are websites that can help you with this to get the proper wording in as to what the Tricare military insurance is looking for in order to approve the coverage. Good luck in Monterey (if that is where your orders are) ~ I've visited there a few times. It's a beautiful area.