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Author Topic: My 23 year old son was diagnosed HIV pos 10 days ago  (Read 4300 times)

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Offline Jaz7days

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My 23 year old son was diagnosed HIV pos 10 days ago
« on: May 27, 2023, 10:14:47 am »
My baby was diagnosed hiv pos 10 days ago. He is 23 years old and was released out the hospital for battling pneumonia since the end of March, he was getting treated incorrectly. Until he was admitted in the hospital is when he found out. 😞 My baby is skin and bones. 😞 He told me he is disgusted with himself. That killed me. All I could do was get on my knees sternly hold his cheeks look him dead in the eye with all my motherly pride in me and tell him he is smart, beautiful, kind, creative, and I better not never ever hear him call himself that again. He is all those things plus more and it broke me that he saw himself in that light. Itís like God was preparing me, although he kept telling me no, I would gently ask or suggested if he is sure he tested for hiv, he would tell me, the test came back negative. Think I was asking or suggest for a month and a half because he couldnít shake the pneumonia. Only reason I found out yesterday is because I went to get his scripts and saw the Biktarvy. I asked him to sit with me and thatís when he told me. I also told my baby his is not the first and unfortunately he will not be the last and we will get thru this. I have always supported my two kids always up lifting them regardless of what this cold 🌎 dishes. God made me to be a mother, Cancer ♋️ woman. I had his sister at 18 and him at 20. They are my everything , and they know this. I donít play about my 2!! I need help!! He is on my insurance and  After Cigna the copay for the Biktarvy is $1400.00 bucks. I downloaded the coupon to see how that does. Any suggestion on ensuring he gets that Biktarvy, hospital gave him only a courtesy 7 day, Iím freaking out. One more question. What can I do to help with his low self worth right now and depression and anxiety. He is currently on 10mg of lexapro and we are looking into groups or counseling session. I pray everyone on this forum is abundantly BLESSED. May any financial, health, personal issues be memories of your PASS in Jesus name!! 🙏🏾🙏🏾🙏🏾 Amen. God bless you and appreciate the help.

Thank You,
Mama Bear 🐻

Offline leatherman

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Re: My 23 year old son was diagnosed HIV pos 10 days ago
« Reply #1 on: May 27, 2023, 01:35:30 pm »
Sorry to hear about your son's diagnosis but glad that he's already getting onto treatment. Treatment these days is pretty phenomenal and, with some time, your son should go on to live a healthy long life. People living with HIV may have to take daily meds to keep HIV suppressed but that's no different than the hundreds of reasons people take meds to get better and/or stay alive.

Did the hospital refer to a local HIV health care provider?

As far as paying for these meds, you could contact a local HIV health care provider about getting Ryan White/ADAP (AIDS Drug Assistance Program) assistance or you may want to check out the Ryan White Care Program in your state. Go to your state's health department website and look for information about Ryan White, ADAP and/or HIV. Depending on income level, the federal Ryan White Program administered at the state level can either cover the cost of meds outright, (in most states) cover the cost of insurance premiums, and/or cover the costs after insurance.

As far as mental/emotional issues, these earliest days are always the worst. It takes time to adjust to this diagnosis. Thankfully it's 2023 and nothing like the old days. After the time it takes to recover from the pneumonia (PCP pneumonia I would suppose and get used to taking daily meds, your son should plan on a long life and plan to live it to it's fullest.

Many people have been diagnosed in their early 20s and many have been hospitalized with very serious illnesses - and have gone on to live long happy lives since these days HIV is a manageable illness with the daily meds. Actually since 1995 and the advent of 3-drugs regimens for HIV, that's the way it's been for people living with HIV. I myself was diagnosed at 24, was hospitalized and almost died twice with pneumonia, and yet here I am 40 years later married, happy, and healthier than most other 61-yr old people I meet. That's the kind of life your son has to look forward to as long as that's what he works toward. ;)

oh, since I don't know what state you're in I can't link to that health dpt. website but here's a poz.com link that should help you locate a local HIV care provider.
https://www.poz.com/directory

Best wishes to you and your son, and a speedy recovery for him!
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Tonny2

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Re: My 23 year old son was diagnosed HIV pos 10 days ago
« Reply #2 on: May 27, 2023, 02:48:44 pm »












              ojo.            Hello there!






Iím sorry to thread about your sonís diagnosis, fortunately, now having HIV is so easy to treat, all he needs to do is to take his medication as prescribed. DON gave me were on, but getting an HIV. Diagnosis is still some thing very hard to digest, but there is hope. Did he tell you about his cd4 levels?. Well, right now for me is difficult to post, because I just got laser surgery in my eye, but please tell him to read my thread, and ate my help him, because I was also bone and flesh when I got diagnosed. ď hope dice last.Ē. Tell him to read stories on these photos. Please keep us maybe someone else can help you with my information about a copayment assistance programÖ good luck



Try, patience advocate, Co Payment Assistance Program. thatís the one that I use for my car payment assistance although my copayment is $75 for each of my medication.

Offline Jaz7days

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Re: My 23 year old son was diagnosed HIV pos 10 days ago
« Reply #3 on: May 28, 2023, 10:10:03 am »
Thank you so much appreciate you and I hope ur eye starts feeling better soon

Offline Jaz7days

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Re: My 23 year old son was diagnosed HIV pos 10 days ago
« Reply #4 on: May 28, 2023, 11:06:46 am »
Appreciate everyoneís kind words and inspiration. I am in CT but he has been living in NY for the last year. Been doing a lot of research and there are tons of programs and assistance in NY. I have my list of calls ready for Tuesday morning, he literally have 5 Biktarvy left. I donít know this morning I woke up just angry. Angry at him, feel like I prepared him for this, am very open with my kids and candid, we talk talk, I keep it very real with them.   I am angry at the man he contracted it from, I am angry. I know he will live a very long and healthy life goal is to get him undetectable. There is something going on with his kidney and there is protein in the urine. We have an appointment and he did a biopsy in the hospital. I was reading and the poor kidney function is a very prominent hiv symptom. Any thoughts? Any one dealt with this issue?

Offline leatherman

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Re: My 23 year old son was diagnosed HIV pos 10 days ago
« Reply #5 on: May 28, 2023, 12:29:26 pm »
I am angry.
I'd suggest you try at being just frustrated not angry. The old saying is that you can lead a horse to water but you can't make him drink probably applies in a situation like this. You can teach your children how to protect themselves from as much as possible but that doesn't always mean they'll remember to apply those lessons in the heat of a moment....about anything, not just sex. There's no sense in being mad at your (adult) kid for bad decisions. Just be frustrated....especially since this situation is surmountable.

I learned a long time ago, you can't be mad at the partner either. Very rarely is HIV spread by someone who actually knows their HIV status. The other person can be just as clueless as you son was until he got sick. Most states have a contact tracing program (where they anonymously contact people who the person recently diagnosed gives them as others possibly exposed to HIV) not only to get possible exposures to get tested; but often because people could just as well be the undiagnosed people spreading HIV without their knowledge.

Another reason to not be mad at any partners is another old adage - it takes two to tango. In this situation BOTH partners are equally "guilty" of not taking the proper precautions. Two people made equally bad decisions to not only not use protection but also to not be tested yearly. Either action (of testing and using protection) by either party could have avoided this problem.

And that's why anger isn't the best response here. Don't be mad at your kid. He may have made (several) stupid mistakes; but that's what people do. Also he doesn't need to be influenced to be mad about whoever  transmitted HIV to him, since he is just as responsible for not being responsible.

But I say all that with the hindsight of 40 yrs and doing a lot of peer support. This early time after diagnosis is hard. Coming to grips with being sick, with your own poor judgement, other people's thoughts about your diagnosis when you disclose. Both of you will be going through a lot of emotions for a while. But, in some time, your son will get healthier and you'll both not be as upset as you two are now.

poor kidney function is a very prominent hiv symptom.
Not really. However, some meds can be hard on a body. If this turns out to be the issue, there are other meds that can be tried. Right now though, just out of the hospital with pneumonia (more than likely that means high viral load and low cd4s - an AIDS condition) he could be having kidney problems simply because he's been so ill.
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Tonny2

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Re: My 23 year old son was diagnosed HIV pos 10 days ago
« Reply #6 on: May 28, 2023, 02:24:31 pm »
Thank you so much appreciate you and I hope ur eye starts feeling better soon
[/quot.   

Mmm.         pko            ojo.      Thank You For your que tķ dices

As our moderator said ď it tales two to tangoĒ, so, itís important to accept and forgive himself
About acquiring the virus, if he/you need help, talk to his doctor and Iím sure he/she will be able to offer you professional help. You are not alone, we are also here for youÖas soon as he gets UD, he will feel better and will start to learn to learn to live with hiv, all it takes is just one ďvitamin neĒĒĒĒ vitaminĒ a day and a good attitude. NOW THAT HE IS POSITIVE HE NEEDS TO BE MORE POSITIVEĒÖitís better to be a fighter than being a victimÖ please keep us posted

Offline Jaz7days

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Re: My 23 year old son was diagnosed HIV pos 10 days ago
« Reply #7 on: May 29, 2023, 07:34:43 am »
He definitely does not know my mix of emotions. I Stay upbeat and positive with him and we havenít even discussed where he may have contracted it from. My message to him is we will get thru this.  I am just venting on the forum and I appreciate the listening ear and advice. Jim youíre so right I can lead him but I canít make him drink it. We will get thru this I brought him back to CT for the recovery and he is getting stronger every day. Itís definitely frustration to be honest Jim itís a mix of emotions but I would never feed negative to Charles to be angry at himself or anyone, would never ever, thatís a no no. Like I said he has no idea how I feel. Just being a supportive mom. Itís tough he is an adult, itís only so much I can do, but he is leaning on me to get him thru this and I shall. Iím learning about this disease didnít know some folks can go undetected for so long. The doctors can pinpoint when he contracted due to the viral load. They think within the last 3 or 4 months, on set of symptoms 3 weeks after contracting and he been battling pneumonia 2 months. I pray once he gets better his kidneys start functioning better. Once again thank you everyone.

Offline Jim Allen

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Re: My 23 year old son was diagnosed HIV pos 10 days ago
« Reply #8 on: May 29, 2023, 09:38:04 am »
Hiya,

Sorry to hear that your son has been unwell, and I wish him a speedy recovery.

I think Leatherman has provided plenty of good advice regarding getting treatment, so I have nothing to add to that.

Quote
The doctors can pinpoint when he contracted due to the viral load.

If it was indeed such recently acquired HIV, then your son has even less to worry about as it has been picked up and he has started treatment before it can cause unchallenged any measured or unmeasured real damage to his immune system and health.

However, they can't pinpoint using the viral load, and if it was within the last few weeks/months, then pneumonia, thankfully, has nothing really to do with his HIV status.

At best, they could run what is known as "RITA" (Recent Infection
Testing Algorithm) this could indicate if an infection was within the previous 4 to 6 months. However, that's about it, and even then, it's just a guess, and it cannot give an accurate date of anyoneís HIV infection.





« Last Edit: May 29, 2023, 09:40:56 am by Jim Allen »
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Offline leatherman

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Re: My 23 year old son was diagnosed HIV pos 10 days ago
« Reply #9 on: May 29, 2023, 10:44:24 am »
However, they can't pinpoint using the viral load, and if it was within the last few weeks/months, then pneumonia, thankfully, has nothing really to do with his HIV status.
I agree.

After a recent infection, the viral load will spike high (as the infection sets in) before dropping to very low levels. If left untreated, HIV will destroy cd4 cells of the immune system, the viral load will rise and after some time (years usually) be high again. Eventually the cd4s are just too few to work properly, and once <=200, a person living with HIV can start dealing with opportunistic infections. That's why it's hard to pinpoint the length of an infection sometimes, because a high viral load can be the start of the infection or at the height of the infection.

One of those HIV-related opportunistic infections (with a severely weakened immune system, some diseases are able to take the opportunity to take hold) is PCP pneumonia. Kind of like the uncertainly in the viral loads though, pneumonia comes in a lot of flavors (about 30 different causes; and quite frankly, it's easy to have pneumonia). So your son, especially if it's a more recent HIV infection, could just have "regular" pneumonia because he is in a weakened health situation.

Quote
Like I said he has no idea how I feel. Just being a supportive mom. Itís tough he is an adult, itís only so much I can do, but he is leaning on me to get him thru this and I shall. Iím learning about this disease
Oh, I hope I didn't come across harshly with what I wrote. Text always just lacks nuance. LOL Me and other long-term survivors (diagnosed prior to 1995 when there wasn't really any treatment) have just found that dealing successfully with HIV takes a positive attitude - if you'll excuse that horrible pun. :) It's normal for people sometimes to want to push blame around in this situation, when really, the truth is, what's done is done and like getting any other diagnosis of a health problem, the best way to treat the issue to is more forward.

It certainly sounds like that's what y'all are doing and congratulations to both of you. Your son for getting on treatment and getting back to being healthy; and you for being the support you are. It's tough now; but as trite as it sounds, things really will get better.

BTW, POZ.com has a whole bunch about HIV and treatment at https://www.poz.com/basics/hiv-basics which you can also get from the HIV/AIDS BASICS link in the top menu of this site. Of course, you or your son can just ask questions here too. Your son is welcome to join into the forums too. :D

Wishing your son a speedy recovery. I've had pneumonia several times and it sucks...and not in the good way. LOL Recovery is frustrating and time-consuming but it is recovering and moving closer every day towards feeling normal again. ;) My time in the hospital (a 5 day, a 9 day and a 3 day stint) is why my motto for decades has been: any day, no matter how terrible the day is, that I'm NOT in the hospital is still a GREAT day! :D
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Jaz7days

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Re: My 23 year old son was diagnosed HIV pos 10 days ago
« Reply #10 on: May 29, 2023, 11:01:07 am »
Thanks for the link looking now. I am trying to educate myself about hiv, for ways to support Charles and to understand the disease myself. I am thankful that Hiv is no longer a death sentence. I am sure in the 90ís it was tough the drugs now are amazing cant wait for him to get undetected and feeling like himself. Is there a timeline on how long it takes before you go undetected?

Offline leatherman

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Re: My 23 year old son was diagnosed HIV pos 10 days ago
« Reply #11 on: May 29, 2023, 12:36:53 pm »
Is there a timeline on how long it takes before you go undetected?
unfortunately, no. It's all a process while the meds block HIV from replicating, HIV is also dying off. Because everybody's body (including the immune system) is different, the timeline for everyone is different too. More than likely with the meds working, the viral load should drop pretty fast. Although don't expect it to necessarily go like 1 million, 1 thousand, 10, undetectable. Sometimes the path down can have small ups and downs as it declines. The cd4 count can do the same unsteady, or steady, path up, though the cd4 count will probably be a slower change.

The best way to consider either the VL or CD4 is to judge the trend over at least 3 tests over several months. If the VL trend is down, that's great. If the CD4 trend is up, that's great. VL results like 1million, 1 thousand, 2thousand, 100, 10, 50, UD are the same results as 1million, 1 thousand, 100, UD. In both cases the trend is down. BTW I think I mentioned before that it takes time, like when I mentioned "over several months" above. Getting the VL down with meds happens but not overnight. LOL And the good part to keep in mind is that even though he might still feel crappy, once he started meds he really are on the right path - even if the path takes a while. ;)


I'm probably blowing up your brain when info; but before you ask here's some info about CD4s that I posted in another thread:

Quote
1. the best way to view cd4 counts is by at least 3 tests over at least 6 months of more
2. cd4s can change by up to 100 points a day
3. cd4 count is a measure of quantity not a measure of quality. some people with high cd4 counts get sick. some people with lower cd4s are very healthy.
4. without knowing your cd4 count prior to HIV, you actually don't know your "normal" count. your normal is based the genetics you got from your parents, and since that makes everyone's immune system unique, the normal range is a wide range from 400 to 1200.
5. there is nothing that specifically raises cd4. Nothing except ARVs, which stop HIV from destroying cd4s and allow them to recover to whatever might be "normal" for you
6. cd4s are only a part of the immune system not the whole thing.

While CD4s are certainly important (otherwise HIV wouldn't use them up), having a count >200 is the most important thing to know about them.
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Jaz7days

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Re: My 23 year old son was diagnosed HIV pos 10 days ago
« Reply #12 on: June 11, 2023, 08:23:27 am »
No, never too much information. I appreciate everyone. My head is spinning this morning. He is back in the hospital called the ambulance couldnít get him to the car. His breathing is shallow again. The diarrhea is back, low grade fever of 100.4. Why does the PCP keep reoccurring. This is the second relapse, this is the third relapse second time in the hospital been sick since March. I donít understand why he gets better than declines. Good thing this time he was in CT with me.  I donít understand it. He keeps relapsing. Anyone ever went through a similar situation. I was already scared now i am terrified. What is going on? Why canít he shake this? Iím loosing it. 🥺

Offline Jaz7days

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Re: My 23 year old son was diagnosed HIV pos 10 days ago
« Reply #13 on: June 11, 2023, 08:29:58 am »
They ran blood yesterday donít know the CD4 level yet.

Offline Jim Allen

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Re: My 23 year old son was diagnosed HIV pos 10 days ago
« Reply #14 on: June 11, 2023, 08:45:44 am »
I'm sorry to hear he is still unwell and in hospital again; I'm glad he has access to healthcare, though, and I hope he feels better soon.

Quote
I donít understand it. He keeps relapsing. Anyone ever went through a similar situation. I was already scared now i am terrified. What is going on? Why canít he shake this? Iím loosing it. 🥺

We could play guessing games all day, but we're just the people living with HIV and we don't have firsthand information from your son, end of the day, guessing isn't helpful and its best left to his doctor to work on. Talk to them, find out what their plan is to treat and support him and I wish you and your son the best.

I will add one thought I had from the start of this thread, you said he acquired HIV recently, but for argument's sake, let's say he didn't and has actually had HIV untreated for a few years and now has AIDS (Late-stage HIV.

Well, then " immune reconstitution syndrome" could be a factor. This means you may get worse after starting treatment to suppress the virus as your immune system starts to "heal", for lack of a better phrase and starts fighting illnesses and issues it had previously ignored or was too weak to fight. Again that would only apply if he has had HIV for longer than is being said.

Quote
They ran blood yesterday donít know the CD4 level yet.

This doesn't make much sense at all.

They should already have these results from his previous lab work. It only takes a few days, and it's the basics they run when first diagnosed, particularly if the person is sick and, you already mentioned they ran a VL, so CD4 is usually done simultaneously at the start, even if the person isn't sick. 

Talk to your son directly if possible because something isn't adding up. End of the day, he is a grown man, and he doesn't need to share with you, but either he has results already and hasn't shared them, or the hospital has results already and hasn't shared them.
« Last Edit: June 11, 2023, 08:50:21 am by Jim Allen »
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Offline Jaz7days

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Re: My 23 year old son was diagnosed HIV pos 10 days ago
« Reply #15 on: June 11, 2023, 09:37:16 am »
Something is definitely up. I couldnít ask the medical staff the appropriate questions because he did not yet tell me that he was positive and had the nurses and doctors not mention it to me. I thought we were battling pneumonia literally until the day they released him and I went to pick up his meds and saw the Biktarvy. Another issue is he was in the hospital in NY now he is in CT. He said the hospital here has all the medical records. The doctor is coming in this morning to go over testing. Any suggestions in questions to ask? So confused at this point. Sounds like he has had it long than I was told or he found out. I donít know but I agree something is up. These are symptoms of AIDS correct??

Offline Jaz7days

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Re: My 23 year old son was diagnosed HIV pos 10 days ago
« Reply #16 on: June 11, 2023, 02:12:47 pm »
CD4 is 40

Offline Jim Allen

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Re: My 23 year old son was diagnosed HIV pos 10 days ago
« Reply #17 on: June 11, 2023, 02:57:46 pm »
That makes a lot more sense, it's AIDS and that explains a lot.

Don't be surprised or worried if the doctors stop HIV treatment so they can focus on treating the other infections first before resuming HIV treatment at a later date.

Hope he feels better soon.
« Last Edit: June 11, 2023, 02:59:47 pm by Jim Allen »
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Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
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HIV prevention
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Offline Tonny2

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Re: My 23 year old son was diagnosed HIV pos 10 days ago
« Reply #18 on: June 12, 2023, 03:33:32 pm »





           ojo.             Hello there!Ö why donít you tell is your son to join us?. have you shown him this forum? he will learn a lot by reading some of our members storiesÖ your son has aids, and he needs ask for information and support. If he is not straightforward with you, maybe he can be it with usÖ I wish you the best, and please keep us posted, we are here for you and your son if he wants itÖ by the way.
Just make sure that he takes his medication as prescribed. Thatís the only way that his viral load will be suppressed.

Offline leatherman

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Re: My 23 year old son was diagnosed HIV pos 10 days ago
« Reply #19 on: June 12, 2023, 06:21:47 pm »
Let's see if I'm following your story correctly. Your son lives in another state and was sick in March. At some point, he was hospitalized and then released around the mid-part of May. He was given 7 days worth of Biktarvy, moved into your home, and that's when you started posting here 10 days after that. Now, it's been about another 10 or so days later and he has been re-hospitalized. Taking a long time to clear up pneumonia and having a recurrence in a short time is not unusual with any pneumonia.

If that timeline is correct, was he able to get a prescription of Biktarvy and not skip any days of taking meds since leaving the hospital?

Something is definitely up.
You're really going to hate what I have to say now, so here goes:

There's probably nothing hinky going on here. What there is is a situation in which you don't know all the private personal health information about another adult and that's blocking you from knowing everything. However think about it, even though not knowing enough about the situation makes you feel like you're not helping enough, the fact that your son has returned to your home and that you're assisting him shows that you are indeed giving him a lot to help.

You can still continue to do that even if your son hasn't told you everything he knows about his situation. Legally it's none of your business. just saying. But maybe waiting for him to tell you all his health facts is just something you'll have to have some patience for.

Maybe your son is still processing all this. maybe he's scared/embarrassed/in denial/freaked out. Maybe he didn't pay attention to any of the details after he got to the point of realizing just how ill he was/is. Being in the hospital, having difficulty breathing, wondering if you'll live to see the rest of your life is a terrible, terrible situation. Your son is going through a lot right now. Something he might need to have right now is time - time to process this situation for himself; time to think about what to tell you, friends and family; and time to get better so he's not afraid of the worst happening. It's hard when you're in the middle of being a patient in a hospital.

It's also hard to be the caregiver (that's what you're doing right now) for someone in and out of the hospital. However, it's a thin line between being pushy, taking away a patient's self-worth/autonomy and doing everything you can to help. Just give it time and keep it in mind that the only thing that matters is your son getting better and leaving the hospital. How long he's been infected, what did he know and not tell you, whatever he feels about himself right now. None of that is important and all of that can wait until later. In reality, the situation is what it is and nothing can be changed about how y'all got to where things are. Right now keep encouraging him, supporting him and loving him.

Best wishes to your son for a speedy recovery! When you get him out of the hospital tell him that he's not allowed to go back ;) :D LOL
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

 


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