My brothers

[hilary1617]

Diana, I am so delighted that your brother has the referral and can get to an appropriate diagnostic doctor. I hope he finds relief very soon. You are an amazing advocate and sister. Stay strong!

 

[DianaCox]

I am cautiously optimistic - I'm a little worried that the surgeon is going to not be happy to be seeing a patient who has not had a full workup before getting a consult. But I checked with his assistant and she seemed to be OK with it. We shall see.

 

[JackieOnLine]

it is so great your brother has you or nothing would have gotten done, instead you are well on your way to getting him cared for. hoping to hear more good news, soon. everybody deserves healthcare!

 

[DianaCox]

After I posted the comments above, I sent an email to the woman who contacted me on Facebook in the MALS support group when I first posted a few months ago about my brother's situation - she is an attorney who also had MALS, and had a horrible time - almost lost everything - because she was crippled with pain, could not get diagnosed and was treated like she was crazy because none of her doctors could find a reason for the extreme pain she was in. She also lives in SoCal and is the one who directed me to Dr. Fujitani at UCI as her savior. She told me her story, which included that even after she was diagnosed by other doctors and was referred to Fujitani, it took months for her to get an appointment, and she finally had to present herself to the UCI ER in dire straits in order to get seen more quickly.

She knows Fujitani's assistant Nikki as well. And when I got hold of Nikki a few weeks ago, she too had told me my brother had to have a diagnosis before Fujitani would see him. I wrote to the attorney to ask her whether I should be concerned about what might happen if we got to see Fujitani and then he realized that my brother hadn't had the necessary tests and diagnosis, and that we were wasting his time. She wrote this back:

I think you found an angel, and her name is Nikki. I never got to talk to Nikki until I was admitted to the hospital though the ER. Once she and Dr. Fujitani knew of my plight, they were so helpful and compassionate and they knew how much pain I was experiencing. They immediately took action to get me on track for surgery.

Dr. Fujitani can order whatever tests are needed to get the definitive diagnosis. Besides being a brilliant surgeon he is a really kind man, he will not be mad at you.

I don't know anything about the insurance situation, but if MALS is the suspected diagnosis and there is a chance of facetime with Dr. Fujitani, I would be doing a happy dance!!!

So, if it were me, I would just do everything Nikki told me to do. They saved my life!

I am feeling somewhat more optimistic now!

 

[Larra]

I hope this surgeon is able to give your brother the help he so desperately needs.

 

[feeder]

Diane for what ever reason you are taken this on it makes me have peace in my heart that there are still people in this world who care about mankind. No one should have to live in this kind of pain. Human kindness is rare these day. So glad I read your post. They have a chance now that you have taken over there care.

 

[DianaCox]

I'm hoping to show them how to take care of themselves better - my patience will run out with them if they don't step up after I've helped them get out o the rut. And even though their plight is in some ways our parents' fault, they are 82 and 83, and are suffering as well, knowing how miserable their sons are. It makes me feel better to make our parents feel like someone is able to help my brothers help themselves.

 

[Parousia]

Will you be going with your brother to see the specialist, Diana? It sounds like he will may need an advocate there. I think what you are doing is great. I know how debilitating being in constant pain can be. If they can fix what's wrong, I'm sure your brother will be a changed man!

 

[DianaCox]

Yes - booked flight and hotel, trying to talk him into spending the night with me the night before, so he can sleep on a real bed rather than a dilapidated couch, and so he can take a proper shower before the appointment (the shop doesn't have bathing facilities), as well as to make sure there isn't an issue with traffic in getting to the appointment on time. I am hopeful, but wary of how this is going to go.

 

[hilary1617]

Cautious optimism is exactly what is needed. Hoping this results in a true diagnosis and real solution!

 

[DianaCox]

I got his medical records over the weekend, including a CD that I thought was supposed to contain all of the CT and capsule endoscopy scans from a few years ago - but it only had two plain film Xrays. Lazy assholes at Harbor-UCLA medical records. I checked with the expert surgeon's assistant, and they received the same records, which include the narratives of the results, so I guess we'll just leave it at that - a supplemental request for the other scans would mean my brother would have to go back to H-UCLA for a third time to request them SPECIFICALLY, and they would not get to the vascular surgeon in time for the appointment next week. Meh - they were almost 5 years old anyway.

Making slow progress - two steps forward, one step back.

 

[Munchkin]

My fingers are crossed for your brothers. It sounds like they are going to get the help they need. Please let us know what happens!

 

[Parousia]

So hard and so frustrating, but you will get there, and at last your brother will get the help he needs. I'm sure it will be a great relief once you've had the appointment and the surgeon takes him on.

 

[DianaCox]

He had another PCP appointment today, with the Family Practice Group associated with UCI, where he will be seeing the vascular surgeon on Wednesday. The PA wrote the referrals for some of the diagnostic procedures he will need. More progress - but one thing I've noticed - he sounds less Eeyore-ish when I talk to him these days - like he has some hope.

 

[Parousia]

That is wonderful, Diana! Lol, maybe that sounds OTT, but as I discovered after getting to an effective dose of my anti-depressants, hope can make an enormous difference to your life and how you feel about the future and about everything, really. Each bit of progress helps too. I'm looking forward to hearing more about your brother's journey, and am rooting for both of you. I'm sure you must be feeling a bit more hopeful about your brother's future yourself .