Lynne's Battle - More Prayers

Posted By: RVFlyboy

Lynne's Battle - More Prayers - 05/19/20 07:56 PM

Those of you that have been on here for a while know that one of two situations that resulted in there even being a BOL Couch was my wife Lynne's battle with necrotizing acute pancreatitis just over 15 years ago. She spend 40 days in ICU, 100 days in the hospital, and nearly died on multiple occasions. Since that time, she has had an ongoing battle with worsening chronic pancreatitis interspersed with episodes of acute pancreatitis. She has not had a pain free day in over 15 years in spite of ongoing pain management treatment. In the last 9 months or so, her pain level has dramatically increased and substantially diminished her quality of life. But we hope that is about to see a big improvement.

On May 28 she is scheduled to have surgery at MUSC in Charleston, SC. The procedure she is having is called a total pancreatectomy with islet autotransplantation (TPIAT). MUSC is one of only 30 centers in the country that perform this procedure. More information about it is available here: https://muschealth.org/medical-serv...ancreatitis-surgery/total-pancreatectomy and here: https://muschealth.org/medical-serv...s-surgery/islet-cell-transplant-surgery. This is a complex surgery and we definitely want your prayers for a successful outcome. Many patients undergoing this procedure experience significant pain reduction and improved quality of life. Regardless of those outcomes, this procedure will eliminate any future episodes of acute pancreatitis, chronic pancreatitis, and will also eliminate the risk of pancreatic cancer which is substantially elevated for those with chronic pancreatitis.

To keep everyone abreast of her recovery, I have set up a Caring Bridge page where I will be able to post updates. You can find that here: https://www.caringbridge.org/visit/lbedsole

Thank you to all those that helped in her recovery 15 years ago through your prayers and thanks to all of you that will be praying us through this time too.
Posted By: Skittles

Re: Lynne's Battle - More Prayers - 05/19/20 08:07 PM

I remember this well, Jim and will continue to pray for her recovery - and for you and your entire family. And stay home and stay healthy!!
Posted By: E.E.G.B

Re: Lynne's Battle - More Prayers - 05/20/20 11:14 AM

Thinking of y'all!
Posted By: Purple Pride

Re: Lynne's Battle - More Prayers - 05/20/20 12:50 PM

Prayers for you and your family during this time.
Posted By: DeeQ

Re: Lynne's Battle - More Prayers - 05/20/20 02:59 PM

I remember as well, you are both in my thoughts.
Posted By: one deer

Re: Lynne's Battle - More Prayers - 05/20/20 03:50 PM

So glad to hear there is some hope for a better quality of life for your wife. Dearest Father in heaven pour your healing blessings over Lynne, restore to her the best quality of life so she can enjoy her family and all the things she finds pleasurable. Provide her body with resilient strength for the surgery and recovery process. Guide her doctors, surgical team and aftercare nursing team mentally and physically for this strenuous event. Pour your healing faith over her family so they may feel comfort and peace during this worrisome time. Most of all God place your shield of protection around Lynne from worldly and unworldly dangers that she may fear and that you know exist around her. Amen.
Posted By: Truffle Royale

Re: Lynne's Battle - More Prayers - 05/20/20 04:29 PM

Continued prayers from Wisconsin, Jim.
Posted By: chenin

Re: Lynne's Battle - More Prayers - 05/21/20 05:54 PM

Sending prayers from MS.
Posted By: Lestie G

Re: Lynne's Battle - More Prayers - 05/21/20 08:37 PM

I'll be praying for Lynne, you and all her medical team - for successful surgery, quick and complete healing, and peace and strength for you. Thanks for letting us know!
Posted By: JWills, CRCM

Re: Lynne's Battle - More Prayers - 05/22/20 08:02 PM

Will keep you and Lynne in my prayers.
Posted By: edAudit

Re: Lynne's Battle - More Prayers - 05/22/20 09:48 PM

Best of luck prayers sent.
Posted By: RR Joker

Re: Lynne's Battle - More Prayers - 05/26/20 03:56 PM

Definitely prayers and good vibes headed her way. smile
Posted By: hmdagal

Re: Lynne's Battle - More Prayers - 05/26/20 05:15 PM

Sending prayers for all.
Posted By: waldensouth

Re: Lynne's Battle - More Prayers - 05/26/20 06:55 PM

Will keep you and Lynne in my prayers.
Posted By: Island Dreaming

Re: Lynne's Battle - More Prayers - 05/26/20 07:18 PM

prayers heading your way
Posted By: Skittles

Re: Lynne's Battle - More Prayers - 05/28/20 12:28 PM

Praying for Lynne today - for you and the rest of the family - for the doctors - for the nurses - and for the success of the surgery.
Posted By: doodles

Re: Lynne's Battle - More Prayers - 05/28/20 01:12 PM

Thoughts and prayers for Lynne's surgery and for those of you that have to wait it out. Praying that she gets some relief from the struggles she has been dealing with all these years.
Posted By: Truffle Royale

Re: Lynne's Battle - More Prayers - 05/29/20 02:14 PM

Caring page has updated news for all interested.

Prayers continuing for Lynne and all the family.
Posted By: P*Q

Re: Lynne's Battle - More Prayers - 06/01/20 03:49 PM

You got them!
Posted By: HRH Okie Banker

Re: Lynne's Battle - More Prayers - 06/02/20 05:35 PM

Any update on Lynne? I so pray that it all went well.
Posted By: Skittles

Re: Lynne's Battle - More Prayers - 06/02/20 06:40 PM

HRH - if you click on Lynne's Caringbridge link that Jim provided and look at the journals you can see the posts that will give you the updates.
Posted By: HRH Okie Banker

Re: Lynne's Battle - More Prayers - 06/10/20 07:59 PM

Originally Posted by Skittles
HRH - if you click on Lynne's Caringbridge link that Jim provided and look at the journals you can see the posts that will give you the updates.


Thank you! Hope all continues to go well day by day.
Posted By: Skittles

Re: Lynne's Battle - More Prayers - 06/23/20 01:28 PM

Jim - any updates? Nothing has been posted on the CaringBridge website since the 5th.
Posted By: RVFlyboy

Re: Lynne's Battle - More Prayers - 06/24/20 01:43 PM

Just continuing slow recovery and still dealing with both surgery pain and ongoing pancreas pain. She has an appointment with pain management clinic that she has been working with on 7/16 and will explore possible next steps. Its an ongoing battle with pain management in the war on opiates, and Lynne is collateral damage in that war. She's someone who absolutely needs and doesn't abuse narcotics, but getting what she needs is a battle with docs, insurance, and pharmacies every single month.
Posted By: Skittles

Re: Lynne's Battle - More Prayers - 06/24/20 02:25 PM

I'm so sorry that she's still in such pain. It's easy to forget with the ongoing war with opiate addiction that some people do need them and don't abuse them. I hope she finds some relief soon.

Your family is still in my prayers.
Posted By: HMS Pippii

Re: Lynne's Battle - More Prayers - 06/24/20 07:32 PM

It just shouldn't be a battle every month to get what's needed - good grief. You'd think they could evaluate her situation and call it good for a year. Then again, I think medical issues should be between the patient and their doc without the insurance companies getting involved at the level of involvement they've gotten... I'm really sorry you guys are still dealing with this. Hope Lynne gets some relief from the pain management clinic.
Posted By: RVFlyboy

Re: Lynne's Battle - More Prayers - 06/25/20 01:12 PM

It's crazy. The pain management docs will only write the prescription for 28 days max and then she has to go an hour's drive each way to the clinic to be seen (and often pee in a cup). The new Rx cannot be filled before the day the previous Rx runs out. But then there invariably winds up being a glitch and we need to get a PA from the doc for insurance to cover which then delays by several days getting the meds so she is without during that time. Or the pharmacy doesn't have enough of that particular med on hand but is not allowed to fill a partial order on controlled substances, so they have to order and wait for it to arrive. We could pay the non-insurance cost but that is around $1500.00 for a 28 day supply, so that's just crazy. So she's at their mercy. It's awful watching her have to suffer because of stupid bureaucracy and CYA attitudes.
Posted By: Soccer

Re: Lynne's Battle - More Prayers - 06/25/20 01:31 PM

That is just wrong on so many levels. I hope it gets better for your wife. Prayers to all.
Posted By: Skittles

Re: Lynne's Battle - More Prayers - 06/25/20 01:55 PM

This is horrible, Jim.
Posted By: one deer

Re: Lynne's Battle - More Prayers - 06/25/20 03:07 PM

I do not know how responsive your state legislators are; but you can call their offices and relay your wife's struggles to them. I have seen this work in extreme cases. Being treated in this manner by doctor's and insurance providers and pharmacies is wrong on so many levels because the rules are ridiculous.
Posted By: HMS Pippii

Re: Lynne's Battle - More Prayers - 06/25/20 08:53 PM

A 4 week supply? That's ridiculous (as you obviously know). Even with a controlled substance, I get a 30 day supply and can refill at 25 days. One time I picked it up at 25 days because I was leaving for a week on the road and the pharmacist tried to put a hold on it until 28 days. We had a brief chat and he released it. A couple of times I've let it run low and they were out when I needed to fill it, but Walgreens checked other Walgreens in the area and it was just a matter of transferring the script. I've had bigger problems picking up Sudafed. I'm fuming on your behalf. This is just wrong on every level. Lynne shouldn't have to suck it up when she runs out and has to play the waiting game. I know y'all live in the middle of nowhere, but is that the only pharmacy you can use?
Posted By: Andy_Z

Re: Lynne's Battle - More Prayers - 06/26/20 05:20 PM

I wonder if it is helpful to notify the pharmacy a few days in advance that an order will be placed, allowing them to pre-order the drug?
Posted By: RVFlyboy

Re: Lynne's Battle - More Prayers - 06/26/20 08:00 PM

Originally Posted by Andy_Z
I wonder if it is helpful to notify the pharmacy a few days in advance that an order will be placed, allowing them to pre-order the drug?

We've told them that but they don't want to keep it on hand both for security reasons and because it's so expensive for the particular medication she is on.
Posted By: Rocky P

Re: Lynne's Battle - More Prayers - 07/02/20 09:14 PM

Jim, just looking at BOL after extended hospitalization due to back surgery.
A few years ago, I had the pleasure of meeting Lynne. She is as wonderful as you have always alleged.
Prayers are going out for both of you, and prayer warriors in SC and Florida will be contacted to add you to their intercession
God Bless. Rocky
Posted By: Rocky P

Re: Lynne's Battle - More Prayers - 07/19/20 10:34 PM

Jim, hope you can provide an update for Lynne. You are both in our thoughts and prayers. Thanks so much