Archive for June, 2015

Gift of Life, Gift of Love

by Jenny Chissus

UPDATE:  June 24, 9:10pm.  Received word from the Hoards that Sarah is out of the hospital and resting at her hotel!  Ronene is scheduled to be released from the hospital tomorrow if she has a good night!  Both ladies are doing very well!

UPDATE:  June 23, noon.  Just got off the phone with Melanie Hoard, who said that Ronene is doing so well, she may even be released from the hospital early!  Wow!  Incredible news!  Sarah is doing well also, but she’s dealing with a lot of pain today.  Doctors say that this will be the most painful day of recovery for her – so here’s praying that is true and that her young and healthy body will heal quickly!  Melanie also gave me a direct mailing address for Ronene at her sisters, should anyone want to send a card her way.  You may still send cards to Melanie for both ladies as written below!

UPDATE: June 22, 7:30pm.   Got a message from Amanda Ginter (Gain) that her mom, Ronene is resting comfortably and her new kidney is working great!  Sarah is doing well too!    I’ll keep posting any updates as they become available!  Thanks for all the prayers!

This story actually began many years ago, but today, we are seeking your prayers, well wishes and thoughts for our neighbor, Ronene Gain, who has been on dialysis at home for the past two years.  She has been fortunate, in that so far, she could manage the treatments at home, as it would be near to impossible to go in for treatments 3-4 times a week while continuing to live in Seldovia.

To give you a bit of the history, I wanted to take a moment to visit with Ronene before she made the trip to Seattle for a new kidney.  She was gracious enough to sit with me on the curb by my flower garden the night before her departure!

This treatment has worked pretty well for her, though the first year was tough.  She has a routine now, as she has to plan to be quiet and still for 8 hours, as she has to be on the machine for the full cycle.  Ronene has been doing the nocturnal home hemodialysis, which replaces the work of her kidneys to clear wastes and extra fluid from the blood, this filter, called a dialyzer does the work while she sleeps.   Her blood travels through plastic tubing to the dialyzer, where it is cleaned and then returned to her body over an 8 hour period.  She doesn’t get great sleep, but she has found a way to rest during the treatments.  While visiting with her, as tough as it has been, she is so grateful for this treatment, and her ability to take care of herself at home.

I asked her how she knew she needed dialysis, and she responded:  “Believe me, I didn’t realize how sick I was until I got on the machine!   I’d been testing monthly, since I’ve had signs of it since I was 14.”   Ronene’s mother and uncle had received transplants that were rejected, and they both passed away due to kidney failure.   So, when Ronene was just 12 years old, she lost her mom to this terrible hereditary disease.  “Our family was a bit of a guinea pig, as the medical world didn’t think of kidney disease as a hereditary disease, but we do actually have a type that is.  We were actually blessed, because with our type of kidney disease, I should have died in my 20’s, and I’m still here!  The doctor tells me that my dad must have had some really good dominant genes to combat the kidney disease trait!   At the beginning, I was just very very sick, and though initially the progression of the disease was slow, as the kidneys worked harder and harder, it got worse very quickly!  I’ve gone in step, as my older sister Irene received her transplant in August of 2013 and in September of 2013 I went on dialysis.  Now it is two years later, and I am getting a new kidney!   Fortunately, after the transplant, Irene has been able to live a normal life, eat normally, and it has been a great recovery for her.”

Dialysis is not a cure, and Ronene has been on the list for a kidney for a few years now as that is truly the next step for her.  She has even been on her way to Anchorage for a transplant, when the potential donor (whom doctors thought was not going to survive) had a miraculous recovery.  Obviously, she was happy that the individual survived, yet terribly disappointed that a new kidney was not coming her way.

Even with a new kidney, it is a bumpy road ahead.  Anyone who has received a transplanted organ must, for the rest of their lives, take immunosuppressant drugs so that the body doesn’t reject the foreign organ.  There have been cases where the body rejected it even up to 5 years after the surgery.  Taking these kinds of medicines, you are very susceptible to disease, so you have to be careful not to be around sick folks and take subscribed vaccines against illnesses, etc.  Though the body could be functioning well with the new kidney, one must always take extra precautions to stay well!    “I have a plus, because my donor is a live donor, though my sister’s was not.  A live donor’s organ has a much better chance of being accepted and being a successful transplant.  You also have a higher life expectancy with a live donor!”

Sarah O’Leary, Amanda Gain and Cameren Blodgett – 2012 graduates of SBE!

This is where the story gets even more amazing!

Ronene’s new kidney was going to come from closer to home.  A fellow Seldovian, and her daughter Amanda’s best friend, Sarah O’Leary wanted to help!  Ronene smiled to explain: “Sarah actually talked to me right after she graduated.  But I told her that she’s really young, she wants to go to school, she looks forward to having babies someday and that I loved her dearly for even thinking of doing this for me, but I didn’t pursue anything with her.  She actually did it all on her own.  She went and got tested and found out that she was a perfect donor for me, and she didn’t tell me until it was all done!  She called me up one day and said “Don’t get mad at me, but I am a perfect match, are you interested?  I’m really excited!”  All I could say was “Oh Sarah!”

Sarah assured her that she had prayed about it a lot, talked with her family and felt that every door had opened up for her and that this is what she was being led to do.  “Just be excited Ronene!”  So Ronene said, “OK, let’s do it!”   “I love Sarah dearly, I love her like a daughter, she’s been through everything with our family growing up here over the last 15 years, we even share the same birthday!  She’s done all of her homework, asked all the questions, and she really feels at peace with all of it, and I don’t think I should take this away from her.  I’m so thankful for Sarah and her family that they would all be willing to do this for me.  Due to the fact that this is a hereditary situation I couldn’t ask my siblings or my kids to help me.”

Today, June 22nd, Ronene and Sarah are at Swedish Hospital in Seattle, which has a great reputation for kidney care.   As of the time of publishing this article Sarah’s kidney has been removed successfully!  I don’t yet have an update on Ronene’s status, but everything is going as scheduled.   Ronene should be out of the hospital in 5 days, and Sarah should be out in three days.  Ronene is thankful to have family in the Seattle area, and will be staying with her other sister Ilene, for 6 or more weeks to recover and have continued monitoring.  “It is all in God’s hands.”  Ronene laughed as she explained that her husband Keith keeps saying,  “Just think of the positive, keep moving, you got to keep going!”  Her daughter and both sisters will be in the area as a support for her during recovery.

They say if the body accepts the kidney,  in a month, she will feel like a whole new person!  She explained that when she settled into the dialysis routine, she felt such an incredible improvement, she expects that this will be similar -but even better!

“It is pretty surprising that Sarah is a perfect match.   I have the rarest blood form, O negative, which can donate to all others, but only can accept O negative blood!”  It is amazing how many people have come up to me telling me about their dad, co-worker or relative that has kidney disease.  Its crazy just how prevalent it is!   I just never knew!”

As I sat with Ronene, this vibrant, talented, generous and faith-filled person,  it occurred to me how everyone has their own life challenges, and we rarely know what others are dealing with, until we are confronting it ourselves, and talking about it!  People tend to step out of their comfort zone to the aid of others, to offer support, encouragement or a story of their own to aid in the recovery.

Ronene wanted to make sure folks knew how much she appreciated the local support, prayers and good wishes she’s received from everyone.  Thanks to Kirby and the band Billy Goat, who passed a hat at their last concert at the Linwood and raised some funds to help her with the medical costs.  She was humbled and thankful for everyone’s generosity.  Once Ronene went on dialysis, she qualified for Medicare, so the majority of both her and Sarah’s medical expenses are covered, which has relieved a lot of financial pressure moving forward.  She also wanted to thank her medical team, both in Anchorage and Seattle who have walked through the whole process and helped make the many steps manageable.

Today is just the beginning of the process to recovery for Ronene, she has a long road ahead and would be so thankful for your continued prayers for her, and for Sarah, that there won’t be any complications in surgeries and that they both will experience a speedy recovery!

If you would like to send a card to either Sarah or Ronene, you can mail them directly to: Sarah O’Leary or Ronene Gain c/o Melanie Hoard at PO Box 256, Seldovia, AK. 99663 – and she will be sure to get the letters to the right places.  Melanie is actually going to be traveling to Anchorage to see Sarah and the O’Leary’s around the 2nd of July, so she’ll be able to personally deliver any cards she has received by that time to Sarah.

Our best goes out to both families!