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Daughter's Battle with CVID

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Chronic Pain
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Diane D.
Regular Member
Joined : Jan 2009
Posts : 114
Posted 12/5/2020 8:47 PM (GMT -7)
Hello all. I don't know where to start other than telling you I've had to watch my daughter's ongoing nightmare with CVID (Common variable immunodeficiency) that just goes on and on and on. She also has some sort of Lung disease on top of it. Her fiancé describes it as such.

"So to update, her spleen is enlarged and according to the consultation the largest that he had ever seen. Despite its importance, especially with her auto immune, its been decided that its putting her life in jeopardy. She goes in next week to have it removed. On top of everything she was in a fairly serious car accident. Fortunately the accident did not cause a burst... This is just a factor in a multifaceted decline that she has faced starting with with a hospital visit in February, 4 surgeries, dozens of doctors visits, pain scars, oxygen and over 300k of medical work."

She is in constant pain as she TRIES to recover from the removal of her Spleen. The doctors don't know why her Spleen went crazy, it was 14 inches long and took over her entire abdomen. She had an incision from just below her breasts all the way down near her privates and then to the left side a bit. They had to rearrange everything that was displaced. She spent 2 weeks with me trying to recover and did a pretty good job of it. But then she went back home to a crowded house of stress and a 2 year old to chase! OMG I don't even know how to describe her situation or where to even start!! Since going home, she's had an infection that pretty much made the progress she had here null and void. She can't eat, is always nauseous and also always hungry!! She's miserable EVERY SINGLE DAY but can't come back here because she has to have a nurse come everyday and pack her "wounds" from the surgery and procedures to drain pockets of puss (?) and insurance won't cover it from here because I live too far away!

Too many other details to describe. Let's just say 2020, Murphy's Law, and the Devil himself orchestrated this whole situation! I am BESIDE myself in frustration and worry! My head and heart hurt for her!! But there's not much I can do to help...Sorry, I'd need to write an entire book to describe all the facets of the chaos she is living in.

I guess I just need to vent. Sorry, I don't know all the medical terms. HOW DO YOU HELP SOMEONE DEAL WITH EXTREME CHRONIC PAIN LIKE THIS??
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straydog
Forum Moderator
Joined : Feb 2003
Posts : 18241
Posted 12/6/2020 6:44 AM (GMT -7)
Hi Diane D, so sorry to read about your daughter. I do not know much about CVID other than what I looked up a few minutes ago. I read articles from the NIH. It's considered a rare disease & it's caused by genetics & possibly environmental issues. The articles I read state bacterial & viral infections are related to the disease, yes it also affects the lungs. Perhaps you can google CVID & read some of the articles from NIH.

It's hard for a parent when they don't live close to help out. Is there a chance you could bring the 2 year old to your home for a bit to give her a break? I know you said it's crowded where she lives, any chance of you going back maybe for 2 weeks again to help? I can't imagine how she is handling all of this with a toddler to care for. As for the pain I suspect & it's strictly a guess on my part all of this is stemming from her overall condition. It sounds like her fiancé is just giving you bits & pieces of everything.

I don't know where she is being treated at, but if there is a large university hospital close to her, that may be an option for at least a consult.

I am sorry that your daughter & you are dealing with all of this.
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Diane D.
Regular Member
Joined : Jan 2009
Posts : 114
Posted 12/6/2020 10:54 AM (GMT -7)
THANK YOU for your response!
Personally, I'd love to go over there and help or have her come up here again. But again, there's the insurance issue. She doesn't want to upset the "balance" of it and tempt fate 'cause Lord knows "fate" has been extra cruel for everyone this year. Her medical bills are through the roof but so far the insurance has paid them. She says she has talked to them about coming here but they said they couldn't provide the daily nurse visit. I'm not sure how much "explaining" she did to them.

They live with his parents and they are saving money for a down payment on some property. Long story short, it's literally too "crowded" there in that small condo and neither I or my daughter know how the savings tally is going. Ugh...Also, I don't want to say too much about it, but his mother is uncomfortable with company coming to the house. They too have serious health issues and it's good that my daughter and their son are there for the parent's sake. It's just the biggest mess of a situation for all involved. There's also mind-boggling personal family drama, drama, drama going on. If it were a comical situation, they could all star in a sitcom.

Once she's done with the packing routine, I'll re-present the idea of all three of them coming here for a while. We will find out on Monday (2 doctor's appointments) how much longer she'll need the nurse coming every day.

My granddaughter is pretty much her only source of joy right now. So having the toddler alone up here with me wouldn't work. Plus, I'm in NO condition to chase a 2 year old, if you could call what I'd be doing chasing at all! I live with my bachelor son because I shouldn't live alone. Since there's pretty much no room where she lives, that little girl is a bundle of non-stop energy when she comes here where there IS room to run. Her father is also very protective and if anything "happened" both myself and my daughter would hear about it. He's not abusive just really over-protective. It's complicated.

As with everyone in the whole world, 2020 has sucked BIG TIME. But writing (typing) helps me gather my thoughts.
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straydog
Forum Moderator
Joined : Feb 2003
Posts : 18241
Posted 12/7/2020 7:55 AM (GMT -7)
Diane, I have been thinking about your daughter's situation with CVID, plus I have read more articles at NIH. I had do wound care for 3 months, it started out daily as the wound healed they would taper the visits until it was healed & the surgeon said wound care no longer needed. I had forgotten about this. Insurance does dictate everything with our medical care. Thank goodness she has insurance. In all honesty I can see why they would not pay for the wound care in another city because the surgeon that ordered it is involved.

I understand you wanting to help in some way, but I'm going to give you my thoughts, especially since she has CVID and has had her spleen removed with complications. You already know infection is at the very top of the list for people with CVID & lung problems this is under normal circumstances & we are not living under normal ones currently. I would not encourage her to travel for quite awhile. She's not out of the woods yet with the surgery. If she were to have problems with the spleen being removed she needs to be seen by drs that know her medical history. I suspect her recovery will be longer because of the disease.

We are in the middle of a pandemic with the virus. If this were my daughter I would not want her traveling anywhere. The cases are going to get higher with colder temperatures. If she were to get the virus it could become deadly for her because of the underlying issues of her disease. It sounds like where she is living it's a pretty controlled environment. Even though it's a small place it appears they were making do before she got sick. It may not be perfect but in time hopefully that will change. I am assuming her fiancé is employed, I wouldn't want to see him lose their only source of income. I can be more objective because this isn't my daughter. I know you only want to help, but maybe you need to rethink some things.

Take care.
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