Sustain NORA VOISAN's Life fund
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Since starting this campaign to raise money for Nora's medical expenses, things have taken a drastic, life or death turn for the worse, and much more. Our needs are changing daily and along with the ever increasing out of pocket expenses for medical bills, during hospital stays changes were made to her insurance at a time that we were unaware and unable to take care of in the proper amount of time. But Social Workers in the hospital worked with us diligently to fix things, and they are slowly starting to work out. But as always, when 1 thing goes right, something else goes wrong! And she lost her Part D coverage which covers her medications; all 26 of them. And with the SSA thingswon't happen overnight, and even with discounts and whateverwe have found to help with the costs, there are still many medicines that cost $100+. Butnow after the last 2 hospital stays and everything that happened to Nora, (please read updates) even her basic needs have changed. She can no longer tolerate "solid foods" for many reasons. She will never be able to go back on TPN , nor will she be able to get a Portacath again after the TPN caused a rare blood infection through the port that colonized under it and had to be surgically removed along with a good amount of infection.
After being hospitalized for the 2nd time in 4wks during mid-May and early June of this year, and having her body shut down several times in the hospital both stays, the damage to her already weak organs, namely her kidneys, liver, Adrenal glands and heart; but also the effects that it has on the brain and nervous system have become so severe that even everyday life has become so difficult and frustrating for her.
We are desperately needing help to sustain Nora's life with as little pain as possible for as long as God has a purpose for her on this earth.
When I met my wife NORA about 2 years ago, she was mostly bedridden. NORA lives with Crohn's disease as well as a number of other conditions. (more on this below)
I was asked by our church to bring her communion at home because it was too much for her to get out the door. NORA VOISAN is one of the sweetest women you will ever meet. She is a Christian and spreads the kind of light which cannot be hidden. We were blessed to find each other and were married last July. This has led to some progress on what she is able to accomplish. We are a great team.
Many days each month are spent at our local medical facility. We try and use these Dr’s days to stop somewhere nice on the way home whenever possible. With our teamwork, she is able to get out of the house for leisure on some occasions but for short periods.
As for NORA’s conditions-
Because of the Crohn’s, her colon was removed and she lives with an ileostomy which is basically a spout with a bag on her tummy for doing what other's use their rear-end for. She had a PICC line for 4 and a half years that was replaced by a portacath in February which is placed in her chest to allow for daily IV home hydration and TPN. But as of June 8, 2017, a life or death decision had to be made by her Doctors to place a new PICC line, which none of them felt they could do without feeling like they were "signing her death certificate" and a new team of Dr.'s had to be consulted and eventually make the decision to place a new PICC line immediately and send her home where there would be less chance of her getting more infection from the hospital and IV/blood draws, etc.
Most of her days/nights are spent hooked to “The Pole”.
Many of her internal parts have been removed. Large Intestine (colon), Uterus, Gall Bladder, Appendix, Ovaries, Cervix
Some(but not all) of the other conditions that NORA lives with are...
Hashimoto's thyroiditis
Addison's disease
Chronic adrenal insufficiency
Chronic intersititial cystitis
Chronic kidney disease
Chronic sinusitis
Endometriosis
Fibromyalgia
Hypothyroidism
Osteopenia
Parastomal Hernia (recently developed following the January surgery mentioned below)
...and of course the combination of these cause anxiety, fatigue and chronic pain.
Most days, getting seemingly simple or normal day to day things done can be extremely difficult. Many times even going to the restroom is tiring….taking a shower … and she might be done with her energy for the day.
This year alone NORA has added SIX surgeries to her previous total which now numbers 20+.
A January surgery to remove adhesions within her small intestine helped what little she could eat to flow more freely however her body did not adjust very well to this and she is not getting the nutrition absorption. She also needs a portable IV pump to allow for the constant hydration. This pump (we hope) will also help with potentially being able to stay out of the home for longer, i.e. with her weekly Dr.'s visits at UCI Hospital that usually take anywhere from 2-3 hours to most of the day. To add to that, she had also developed a gall stone, and needed immediate surgery to have the gallbladder removed in fear of the stone lodging in one of the ducts and rupturing the gallbladder causing Severe septic shock and death. So this was done as well in January, but not having a gallbladder, colon, a properly functioning small bowel, with a hernia, blockages, " Dumping Syndrome", Short Bowel Syndrome, and a very high output ilestomy that has on more than one occasion caused Hypovolemia, which is what caused the need for daily hydration and is now the only thing keeping her out of the hospital. But nutrition wise, she must have 4-6 Ensure drinks PER DAY and she won't be able to retain even 1/3 of what she is able to drink, when she's not throwing up due to the hernia and ileostomy/blockages.
Just to clarify though after stating all of that, NORA’s life is not defined just by her struggle. In fact her struggle makes her all the more amazing. Her faith and perseverance are stronger than I could put into writing. We are very blessed to have each other, our family and our friends.
We appreciate any help more than you could ever imagine.
A blessed husband,
Christopher
#Crohnies4Nora
#WeAreCrohnies4Nora
After being hospitalized for the 2nd time in 4wks during mid-May and early June of this year, and having her body shut down several times in the hospital both stays, the damage to her already weak organs, namely her kidneys, liver, Adrenal glands and heart; but also the effects that it has on the brain and nervous system have become so severe that even everyday life has become so difficult and frustrating for her.
We are desperately needing help to sustain Nora's life with as little pain as possible for as long as God has a purpose for her on this earth.
When I met my wife NORA about 2 years ago, she was mostly bedridden. NORA lives with Crohn's disease as well as a number of other conditions. (more on this below)
I was asked by our church to bring her communion at home because it was too much for her to get out the door. NORA VOISAN is one of the sweetest women you will ever meet. She is a Christian and spreads the kind of light which cannot be hidden. We were blessed to find each other and were married last July. This has led to some progress on what she is able to accomplish. We are a great team.
Many days each month are spent at our local medical facility. We try and use these Dr’s days to stop somewhere nice on the way home whenever possible. With our teamwork, she is able to get out of the house for leisure on some occasions but for short periods.
As for NORA’s conditions-
Because of the Crohn’s, her colon was removed and she lives with an ileostomy which is basically a spout with a bag on her tummy for doing what other's use their rear-end for. She had a PICC line for 4 and a half years that was replaced by a portacath in February which is placed in her chest to allow for daily IV home hydration and TPN. But as of June 8, 2017, a life or death decision had to be made by her Doctors to place a new PICC line, which none of them felt they could do without feeling like they were "signing her death certificate" and a new team of Dr.'s had to be consulted and eventually make the decision to place a new PICC line immediately and send her home where there would be less chance of her getting more infection from the hospital and IV/blood draws, etc.
Most of her days/nights are spent hooked to “The Pole”.
Many of her internal parts have been removed. Large Intestine (colon), Uterus, Gall Bladder, Appendix, Ovaries, Cervix
Some(but not all) of the other conditions that NORA lives with are...
Hashimoto's thyroiditis
Addison's disease
Chronic adrenal insufficiency
Chronic intersititial cystitis
Chronic kidney disease
Chronic sinusitis
Endometriosis
Fibromyalgia
Hypothyroidism
Osteopenia
Parastomal Hernia (recently developed following the January surgery mentioned below)
...and of course the combination of these cause anxiety, fatigue and chronic pain.
Most days, getting seemingly simple or normal day to day things done can be extremely difficult. Many times even going to the restroom is tiring….taking a shower … and she might be done with her energy for the day.
This year alone NORA has added SIX surgeries to her previous total which now numbers 20+.
A January surgery to remove adhesions within her small intestine helped what little she could eat to flow more freely however her body did not adjust very well to this and she is not getting the nutrition absorption. She also needs a portable IV pump to allow for the constant hydration. This pump (we hope) will also help with potentially being able to stay out of the home for longer, i.e. with her weekly Dr.'s visits at UCI Hospital that usually take anywhere from 2-3 hours to most of the day. To add to that, she had also developed a gall stone, and needed immediate surgery to have the gallbladder removed in fear of the stone lodging in one of the ducts and rupturing the gallbladder causing Severe septic shock and death. So this was done as well in January, but not having a gallbladder, colon, a properly functioning small bowel, with a hernia, blockages, " Dumping Syndrome", Short Bowel Syndrome, and a very high output ilestomy that has on more than one occasion caused Hypovolemia, which is what caused the need for daily hydration and is now the only thing keeping her out of the hospital. But nutrition wise, she must have 4-6 Ensure drinks PER DAY and she won't be able to retain even 1/3 of what she is able to drink, when she's not throwing up due to the hernia and ileostomy/blockages.
Just to clarify though after stating all of that, NORA’s life is not defined just by her struggle. In fact her struggle makes her all the more amazing. Her faith and perseverance are stronger than I could put into writing. We are very blessed to have each other, our family and our friends.
We appreciate any help more than you could ever imagine.
A blessed husband,
Christopher
#Crohnies4Nora
#WeAreCrohnies4Nora
Organiser
Christopher Voisan
Organiser
Anaheim, CA