Latest Update on Cheryl

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Since I have continuously bothered everyone with my concerns over my daughter I am happy to say is home again and hopefully to stay now. She did have another short round in the hospital a week or so ago with another surgery but it appears they have finally eradicated the Sepsis. I am still very guarded with my excitement but she had an extensive blood panel done yesterday another MRI and an X-ray with no active infection showing up. It did come up with her C-protein levels out of site which the doctor believes is due to the long-term infection kicking up her RA. We are hoping only two months of an uber biological med with get her numbers back to normal levels since I just cannot afford the medicine for longer. I looked back she had fought this infection since last August ending up in the hospital in Nov.

God sure had other plans for us when we originally sold our house and planned our move. Without the sale of the two houses Cheryl simply would not be alive today due to our lousy medical system. And remember they have insurance... Very sad
cmzaha,
find out who the manufacturer and name of the "uber biological med" look up the phone number and ask the receptionist for the department that helps folks who can't afford to pay for this product. The hospital where you were at should have sent someone from social services to see your daughter and her family and talked with you. Many, many manufacturers give away or send the product to patients for a small fee if they need financial help. If you don't mind me asking how old is your daughter?
 
cmzaha,
find out who the manufacturer and name of the "uber biological med" look up the phone number and ask the receptionist for the department that helps folks who can't afford to pay for this product. The hospital where you were at should have sent someone from social services to see your daughter and her family and talked with you. Many, many manufacturers give away or send the product to patients for a small fee if they need financial help. If you don't mind me asking how old is your daughter?
My daughter is 44 and the Social Worker tries, but we just keep hitting block walls because they have insurance.

New update, she had surgery again yesterday. Now she is fighting a Staph infection and her Sjorjens is out of control which is destroying the sinus patches so they had to be repaired along with cleaning out staph infections on each side of her nasal.

My new house money is in serious jeopardy. But my well is done, my house now has water!! We just need a garage. Our biggest fright is running out of money to care for her at this point. Anyone that thinks a million dollars is a lot of money, think twice. When you cannot turn off the faucet it goes frighteningly fast. I have lost count but I think she is up to 16 surgeries now.
 
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My continued well wishes and prayers for you , your daughter , and family on a whole that you may find the strength and concrete answers to pluck out the problems by its root once and for all . Blessings to you
 
My daughter is 44 and the Social Worker tries, but we just keep hitting block walls because they have insurance.

New update, she had surgery again yesterday. Now she is fighting a Staph infection and her Sjorjens is out of control which is destroying the sinus patches so they had to be repaired along with cleaning out staph infections on each side of her nasal.

My new house money is in serious jeopardy. But my well is done, my house now has water!! We just need a garage. Our biggest fright is running out of money to care for her at this point. Anyone that thinks a million dollars is a lot of money, think twice. When you cannot turn off the faucet it goes frighteningly fast. I have lost count but I think she is up to 16 surgeries now.
This is frightening and maddening all at the same time! Cheryl remains in my prayers for a miracle.

Maybe the next time her husband's health insurance re-enrollment period comes around, it would be better not to insure her.
 
Thank you everyone. This is crazy, but on the other hand, it is really a miracle she is still alive. She just got home again and her RBC came up and so did her platelets. They came up from 14k to 25k so that is once again promising.

LOL, Alison, her husband has turned into such a jerk I have told her to divorce him but on the other hand, this doctor who has really kept her alive is a mine doctor. The facility she goes to is owned by the mine it is not Renown in Reno. So without the mine insurance, she cannot see this doctor or the surgeon so who knows what to do. I doubt any type of State medical program would go to the extent of care she has received. Most would not have made it through this with all her other medical problems. She is also on some Holistic supplements that she thinks are helping and her medical doctor has even approved them. They were recommendations from a chiropractor cousin of mine. You might find it interesting Alison, my cousin, and his long-time lady friend are working on opening a clinic at Pyramid Lake, she is a direct descendant of the Winnemucca tribe, and just received her land at Pyramid Lake (family name).
 
So glad she is doing better, Carolyn - that is the most important thing! It's wonderful that she is doing some holistic things. As you know, everything that has helped my DH the most has not been covered by our medical insurance (which is top of the line, but still covers almost nothing that actually helps). Our running joke in this house is that I apparently have very expensive taste in men. 😄

Seriously, I am beyond grateful that we have the ability to pay out of pocket for holistic treatments, but it definitely forces us to live far below what one might expect for our income level. Thankfully, neither of us really cares about impressing anyone with our lifestyle. I only care that he's doing well and that we've left no stone unturned. I know you feel the same when it comes to caring for Cheryl. I hope you can take care of yourself along the way, too. 💜
 
It's back... 😭 Cheryl's dentist thought he found the actual source of her infection. He found infection under extensive hardware in her bottom jaw 7 or 8 implants. She went into surgery to remove all the hardware clean the infection, and have plasma bone grafting and a prothesis added to try to keep her bone from further deterioration. Her surgeon also checked her sinus area and found infection had pierced the patch and she was leaking cerebral fluid again. So that all had to be fixed. He cultured the area and it did not show Sepsis, she had been fighting Staph the last 2 or 3 weeks. They are now doing UV light treatments. Sadly her blood work numbers crashed so further testing was incurred, showing Sepsis back in her blood. So now she is back to having her blood washed and in the hospital until at least next Friday. It is getting really scary as we are quickly running out of money to care for her, let alone finish our house and move or take care of us.
 
Warm hugs to you and yours. I've sent up prayers. Bless ya'lls heart. I feel so bad for you all. I'll keep praying.
 
I am so sad for you and your family. The roller coaster of emotions you have been on for so long is heartbreaking. I hope that the source of infection has finally been found and that she gets past this for good.
 
It's back... 😭 Cheryl's dentist thought he found the actual source of her infection. He found infection under extensive hardware in her bottom jaw 7 or 8 implants. She went into surgery to remove all the hardware clean the infection, and have plasma bone grafting and a prothesis added to try to keep her bone from further deterioration. Her surgeon also checked her sinus area and found infection had pierced the patch and she was leaking cerebral fluid again. So that all had to be fixed. He cultured the area and it did not show Sepsis, she had been fighting Staph the last 2 or 3 weeks. They are now doing UV light treatments. Sadly her blood work numbers crashed so further testing was incurred, showing Sepsis back in her blood. So now she is back to having her blood washed and in the hospital until at least next Friday. It is getting really scary as we are quickly running out of money to care for her, let alone finish our house and move or take care of us.
All my prayers to you, Cheryl, and the rest of your support system! May G-d keep His hand over you all.
 
In addition to all the money and access worries, I am amazed that your daughter is able to endure still more surgeries and stays in the hospital. She must be a very strong person — and you, as well! More prayers & positive waves coming your way, for sure.
 
@ A-Polly According to her Doctor, she is at the end of the line for surgeries, no more at this time and in the near future. They just found a biological program for her under 10k for 2 yrs which she starts on ASAP. They are hoping this biological will help get her immune system working along with the gamma globulin (IVIg) program she is on. Without getting on the prepaid rebate programs these are unaffordable so we feel fortunate her Social Worker has been relentless in working to find the programs.

@ not_ally We just have no choice but hang in there.
 
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