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Hi Gang...transplant eval progress... update

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Posted 5/23/2013 6:36 PM (GMT 0)
The insurance company called yesterday. My husband, themister, was approved for transplant eval at Mayo AZ by the insurance company. The person calling will be his SW for the insurance company. She was terrific, upbeat, informing. Told me Mayo AZ called them two days prior for approval and they approved. BTW, she gave me the name of a company called Needymeds.org to try and get the Xifaxin co-pay help with. We shall see.

As you that followed this drama, themister was in a rural state Medicare Advantage program waiting for our home to sell. Mayo, AZ did not accept that insurance product. (Feb 2013). He was just weeks post TIPS and we decided to make our move to AZ earlier than planned (in order to get special condition sitch' to change Medicare). 

I know he has a long way to go, but just knowing he has been approved is major.

Update on the swelling. I got the TEDS stockings. Thanks so much to you all for the suggestions and advice. His edema is really low and back under control. Moving put a strain on diet, and I probably was not monitoring his sodium as closely. Difficult to be a perfect caregiver and do all things for him, me, and long distance move....but he survived ;)  His HE is better than it was, but not perfect. Some hallucinations and he smells things that are not there. Anyone do that with HE?

Also, we got into the HMO doctor (remember, Mayo suggested we switch to this AARP MedicareComplete UnitedHealthCare HMO product, but we must deal with an HMO for his day to day stuff. This plan has a transplant network accepted at Mayo, AZ, most important right now. The doctor was a lovely lady from India, she took one look at his box of medical records I copied for the just two years,( as they  requested). She did a triage type appt *giggles*.  Mentioned something about her given 15 mins per appt, so she wanted to get him RX's and specialists first. She asked what specialists were needed, for a list of meds to fax to our RX plan, made arrangments for the Gastro/Hepa to get these records and rush an appt with him.  I feel pretty darned lucky today.  This move was hell, but we are both confident it will be worth it. So far, so good!

Hugs to all of you special folks. themiz

Posted 5/23/2013 6:47 PM (GMT 0)
I “giggled” as well when you spoke about the 15 minute appointment allocation. Welcome to the new world of medicine. Last time we went to the Oncologist, she came in the room, closed the door behind her, and said, I need to hide for a minute. They want us to work so fast I can’t catch my breath. She is just back from Maternity leave and it must be so hard with a little one at home and 8 hours of 15 minute appointments.

Your gift of the day was a doc willing to work the system with you. Our PCP tells us each time that she has no role to play as she can’t do anything for Mike unless he has a sore throat. So she just asked what referrals do we need and sends us on our way. Thanks goodness. Our “real” PCP is the sweet girl in the windowless cubicle who hands out those referrals like they are GOLD. And they are.

On to step 27 in your really long journey!

Hugs,

Carol
Posted 5/23/2013 7:29 PM (GMT 0)
Themiz, so glad to hear things are moving forward! I was also overjoyed when my dad was able to have an initial appointment with the Liver Team, and thrilled when they said yes just to the evaluation :). Yes, it may be a small step but that's how we get to where we need to be. So a big yay for today!!!
Posted 5/23/2013 7:53 PM (GMT 0)
Congratulations! You certainly did the right thing in moving to AZ! He will also have a Mayo Transplant SW. I'm interested in how different Mayo AZ's eval. is from Mayo FL's. I'm going to bump up my Pre-Eval. thread for you (if I can find it.)

Best of luck!!

Hugs,
Connie
Posted 5/23/2013 10:22 PM (GMT 0)
I'm thankful that neither my pcp, hepatologist, local hospital, or transplant center operates on the 15 minute schedule. They will spend an hour if need be, or 5 minutes, if that's all it takes.
Posted 5/23/2013 11:05 PM (GMT 0)
great news!!

Sandia
Posted 5/23/2013 11:32 PM (GMT 0)
Many thanks.
@Mama, the doc knew this was not for the PCP...pretty much had to run here part and move us where we needed to be. Good deal, for certain. When I told her he had ESLD, first thing she asked is if he is on a transplant list. I feel ok with her....she emailed the Hepa while we were in the room...so, yay... good deal.

@hep93, who knows what the process will be in actuality, but Mayo AZ did speak to me today and said it is a 5 day outpatient which requires themister and his primary (the ever faithful, themiz) the entire time. Mayo, AZ said a scheduler will be calling. Thanks for bumping your eval thread. Helpful, as always. Hope you are feeling better today. Remember, he was denied twice by them due to his out of network insurance. This part I started in Feb. 2013, so dang...really happy today we moved.

@David....I want your doctors!!....wouldn't it be sweet for everyone to have the compassionate care and not slotted into a time frame? Wow...15 minutes for a new patient visit (and who knows what that new patient will be dealing with?) Anyway, what I needed for my guy...well, it worked. RX for Lactalose filled, check, Hepa referral...Whew.

@ Jaspersmom, it is a major step. I know so much ahead, but we moved over 1000 miles with an unsold home just left behind us just to get to this step. I am moving mountains here. "wink". Hang in there as a caregiver. You have been through so much

@ Sandia, thanks for the support. It really means a lot to me. I mean that.

Hugs all, themiz
Posted 5/24/2013 2:42 AM (GMT 0)
Da Miz!!! What a get er dun attitude... yez ur mister is da treasure here on earth.. not that house... your priorities are so right on!!! WTG Miz and Mizzter!!!

Sandia
Posted 5/24/2013 4:25 AM (GMT 0)
TheMiz, if Mayo AZ is anything like Mayo FL, there is no time limit for appts. I have never felt rushed at all. They will take 45 min. or more, if that's how long it takes to answer my questions, review my case, do a physical exam, etc. In all the clinics, someone will come out and ask if there is anyone who has been waiting more than 1/2 hour past their appt. time. Their focus is totally on the patient.

In time, I found a secluded, partitioned off spot in the cancer clinic, where patients are waiting for chemo or just had it and are waiting for another appt., etc. They have recliners, magazines on end tables, and will provide a pillow and blanket if you ask. There are windows on 2 sides and a great view. I've never been questioned about my presence there. Glad I found it, so I can at least rest a little on long days where I have 2+ hours between appts...which has become more the norm now.

Hugs,
Connie
Posted 5/24/2013 7:45 PM (GMT 0)
@Connie, great advice on finding a "spot" for rest. I traveled internationally for decades, learned to crash on airport floors, lobbies of hotels, basically...anyplace. I have a myriad of my own health issues with a past minor stroke, past minor heart event, and other things....bunch of surgeries. Now, at a low altitude, in this magical desert climate, I am able to plug along with the meds I need, and we WILL get through this. I will hire help, use family, if needed, charge up every credit card to make it all work, and do what is needed. Someday, I will share "our story". We have a real, dreams do come true, story ;)

I am on page 4 of your eval. This is all perfectly doable for themister. I will push to do whatever it takes.

Help I need:
I DO need to know how to set up the 3 ring binder. It seems I read info once, you mention it with "mer" in the eval thread. I got the large 3 ring binder, made a lot of copies of insurance card, ID. and need to get state specific DPOA, General POA, Living Will taken care of. Ours are still out of state, but registered with the county our unsold home is in. Good time to get this binder prepared, thinks me.

I am not too concerned about 15 min appts once we are in the pre-transplant stuff at Mayo. I expected the poor PCP would be under water when she saw the complicated case she had to take as part of the HMO group.

@Sandia...your upbeat attitude is very helpful. I saw you cheerlead Connie on during her eval. It's these little things, ya know?
Hugs all. themiz
Posted 5/24/2013 8:03 PM (GMT 0)
The 3-ring binder info might be in the Hepatitis Resources folder. Or try putting those key words in the Search feature here. I have my HH nurse coming and need to have something to eat first, so I don't have time to look for it now.

The main things I remember were Labs, Test/Scan Results, copies of insurance card(s) and I.D., and anything else you want to put in it. After transplant, I was given a 3-ring binder by Mayo with post-transplant info, including flow sheets documenting every med and when it is taken. I still use that form to this day...don't trust my brain to remember when I took what. You will also need a 7-day pill box, with AM, Noon, PM, and Nighttime slots for meds and set it up once a week. Prior to discharge, all his meds will be delivered to the transplant unit. At time of discharge, you will get all the meds he will need for a month, with 11 refills on most. These are from whatever specialty pharmacy you choose (which you will need to set up during the pre-eval phase.)

Hugs,
Connie
Posted 5/24/2013 11:14 PM (GMT 0)
Da Miz... when Mike and I stood together... on the last leg of his journey here... it was this forum that cheer leaded me on... and it's from the heart... and ya see Connie and the other people know labs etc... motivational mutterings is my specialty here in our lil corner of the Healing Well Forum... smiles...

May you have a great Memorial Weekend.. if I was closer I would help.. in a heartbeat..

Sandia
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