Hello everyone. Thought I’d write an update. For those of you who don’t already know, I was re-admitted to the hospital on May 7th. Physically I’m doing okay. They upped my o2 to the high flow, and now it’s on 8 liters. At rest my saturation is in the high 90s and my heart rate has come down from the extra oxygen. My echo-cardiogram came out fine, which is great news. The last thing I need is for the other organ to go bunk.
Right now they’re in the process of listing me for yet another pair of lungs, but we’ve been coming across all kinds of hurdles. My lifetime maximum on my health insurance is pretty much up, so there isn’t enough to pay for another transplant and post-recovery. The next step was to contact my HR to switch my coverage to an HMO (Kaiser) because they have no lifetime maximums. Unfortunately we were told that open enrollment isn’t until January and my condition is not a ‘qualifying event’ to swtich early. So that leads me to Medi-Cal.
Carol spent the morning there and found out that I do not qualify because my assets are over $2,000. In order to be approved I need to liquidate all my savings and retirement funds and spend them on living expenses. I can liquidate my 403b from the school district and my STRS retirement account from the state – all with penalties and taxes of course – but the catch is that I can’t liquidate my retirement from my current job unless I quit.
My work and my boss has been terrific in all this. She’s following up with HR to make sure that there really isn’t away to switch to Kaiser before January. She said it depends on if the denial is following policy or law – smart lady! If I really can’t switch, I’ll have to quit my job and get on Medi-Cal to pay for the re-transplant and recovery. If they’re able to switch me I could stay in SF and go back to work once I’m recovered, but I gotta say I’m seriously considering moving to southern California to be with my family. If my reality is being a patient who can potentially get really sick at any time, I can’t keep doing it alone.
Who would have ever imagined me saying out loud that I would ever consider leaving SF?
Immunosuppressed Knitter 
America’s health care system blows. I hope Caryl can work something out for you.
As much as I do not want you to leave SF, I also understand about not wanting to go through this without family support. Your friends love you but it is not the same. At least we will have a reason to visit SoCal. 🙂
I am hoping and praying it all works out for you. All you can think is that you were successful once (with a transplant and successful recovery) – you are strong enough that it can happen again.
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My response would normally be laden with expletives, but I know that would be inappropriate for some of this blog’s readers.
Good luck, let me know if I can do anything to help.
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Actually Ed, I think we’re all thinking the same expletives…
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Hey Susan,
I don’t know the ins and outs of any of the legalities, but I was thinking if you can ‘sell’ everything off to your sister let’s say, and not sure if you can transfer ur 403 into anything or under anyone else’s name? like transfer it to a IRA or a new account for someone else?? Or cash out and leave it in your sister’s account.
This is one of those moments where someone needs to get a letter out to Obama. Anyone have friends in high places???? I mean if that little kid sent the letter about wanting new desks for his school, surely money for organs or at least insurance coverage shouldn’t be too bad of a request? Yes…I’m totally serious!
Let me know if you need anything. I will see you this weekend!
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Actually… Today, randomly, Carol got an email from Obama to share her personal story about health care. She wrote back a little blurb about my situation, but I’m not holding my breath. And sadly, no I have to show proof of how I spent the money with account statements. Pretty much no way getting around that one.
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Hi Susan, I was talking to Ed about this last night and a way to change insurance midyear rather than wait for open enrollment would be to “quit” your job and then get rehired immediately. As a “new hire”, you’d be eligible to bypass open enrollment and choose the Kaiser HMO plan. Also, since most benefit plans are effective the 1st of the month, if you quit today or early next week and get rehired by the end of next week, you should have new coverage by June 1st. It may be something to talk to you boss about, since it sounds like she’s already racking her brains to find out how she can help.
Hang in there and please let us know if there’s anything we can do to help.
Cathy
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