Wednesday, November 10, 2010

HIV questions continued...

I have a question...and I don't think this has been answered yet. In the United States, I'm guessing, kids born with HIV are treated ASAP, and as you said, can go on and live a normal life with pretty much normal life expectancy (afterall it may never turn into AIDS). My question is though, in Eastern Europe, Russia or even Africa. Are these kids medically treated as soon as possible? Are they even treated? If so, how WELL are they being medically treated? If they do start treatment later on in life, do they have a greated risk of their HIV turning into AIDS? Have you found many differences in the medical treatement your child is receiving here vs. in his/her home country? These are questions I've always wondered!


- I don't have any solid answers on this. But I'm pretty sure this goes for any orphanage overseas: Yes, the children ARE treated. However the resources we have here are just not available in most other countries. Our doctor said in his 20+ years of treating HIV patients he had never seen such good blood results in a child adopted from overseas. He was quite shocked actually. (The virus was low to the point of being undetectable). He said this indicated excellent care on the part of the orphanage, which makes us so grateful. The doctor made a couple of minor changes to the medications and the dosages but otherwise he was really happy with what the orphanage had already been doing. I do believe kids are generally treated shortly after being diagnosed. Our child had been receiving treatment since, I believe 2 weeks of age.

How do you deal with disclosure? Isn't it best to keep your child's HIV status confidential?

This is by far THE hardest part about HIV adoption! Who do you trust with this information, if anybody? 
-On the one hand it's nobody's business, and on the other hand you KNOW people would rather know so they can be cautious. 
-On one hand, it is your child's personal story you should protect. On the other hand there are many other HIV+ children needing families, and you MUST advocate for them. 
-On one hand, friends might ostracize your family if they knew. On the other hand, who needs those kinds of friends anyway?
-On one hand, you can never 'untell' your secret once it is out there. On the other hand isn't the secretiveness and shame what perpetuates the stigma in the first place?

We have found that other HIV adoptive families either remain totally 100% secretive about the HIV, not even telling family or close friends, or they choose to openly educate people about HIV and HIV adoption. We have also found that there can't really be a middle of the road here. It is very difficult to just tell a few close family members and friends, and then trust that people won't be telling other people or sending anonymous letters to church or school, or questioning you at family reunions whether you have told so-and-so or not. We tried the middle of the road approach and feel much more peace with being more open about it.  It is a very personal decision whether to be open about HIV or not. I don't think there is really a wrong way to handle it, as long as the child is treated with dignity and respect. After all HIV in children is really NOTHING to be ashamed of.

You should also know that according to the health department we are not required by law to tell ANYBODY, even doctors and dentists (although it is encouraged for obvious reasons). Technically all hospitals, clinics, schools, day cares, etc. should be using universal precautions anyway, thus the reason why it is not mandatory to disclose. The only time you must disclose by law is when you are putting another person at risk knowingly. A little surprising, huh? We have chosen to disclose to church and school, mostly because we didn't want them finding out through someone else and then freaking out on us. 

So far friends and family members have exceeded our expectations and have been surprisingly and graciously, KIND, loving and accepting of our family, all of us! Thank you Jesus for a big prayer answered as we took a giant step of faith. Thank you friends and family!

As I'm sure you've noticed I am not ready to go all out and name the HIV+ positive family member. I believe we will get there in time but I still feel somewhat protective in this way. If someone has a problem with "our" HIV then they will have a problem with the whole family and not one innocent member of it.

General HIV maintenance and daily precautions:

This is really the simpler part of HIV adoption, as compared to the previous question.

1. Although it is so tempting to do so (kidding!) there is absolutely no sharing of razors and toothbrushes allowed. I keep all razors and toothbrushes up high out of the reach of little fingers, just to be on the safe side. I do not know if HIV has actually been spread this way, but we don't want to be the first, and this is what the doctor ordered.

2. No touching of blood. Again, do we really need this rule? When there is blood (and there has been a couple of times), only Mom can clean it up. Of course this doesn't scare me at all, just get it cleaned up and disposed of ASAP just like I would any of my children. It's a good idea to wear gloves (although some argue this isn't even necessary) and  keep a first aide kit in the car and in several places around the house.

3. Regular doctor's appointments for IV blood draws to check HIV levels and medication levels. We do this every three months. Soon it will only be every six months.

4. Three medications are given twice a day. They are Kaletra, Epivir, and Zidovir. These are taken with food and must be on time, within an hour of scheduled dose. I have my phone alarm set to go off every day at 8am and 8pm. I was worried I would be forgetful about this, but I have really surprised myself and have done an excellent job, if I do say so myself!

5. Technically an HIV infected individual is more at risk for infections due to a lower immunity. Therefore you should be more on the cautious side when it comes to vaccinations, fevers, etc. Your doctor will help you know if and when to vaccinate, if and when to bring your child in vs. letting a fever run its course. So far this has not been an issue for us, since we are ALL healthy!

Later on we will have to worry about dating and marriage, but that doesn't scare me either. We will teach and encourage abstinence until marriage for ALL of our children. John and I were able to pull this off successfully and we are thankful to be able to be an example to our kids in this way. It is a gift to our marriage and neither of us ever EVER regretted waiting!

So now that you are well informed about the beauty and joy of HIV adoption, please go look at the wonderful children who are waiting for families! My prayer is that someone's heart has been opened to the great need and that at least one child will find a home through these blog posts. PLEASE just take a look.......and pray, donate, or better yet ADOPT. They need families, every one of them. Maybe, just maybe, one of them will be yours!!


Deb D. said...

I learn so much from you.

And on a personal note, the more I learn ABOUT you and your family, the more I love you all.

So sincerely fond of you's.

~*Brittany*~ said...

Thank you so much for sharing information about this. I have wondered about this and have so many questions still. No matter how much you can find on the internet, I like to hear from a Mom who is living it. Please continue to share.

Sylvia MiaSara Truewell said...

Very informative!
I like the concept of family unity that you emphasized surrounding this issue -- if you have a problem with 'our' HIV status, then you have a problem with the entire family. I think that's wonderful.

Here's another question:
How do you dispose of items containing contaminated blood?

I know that many (most?) cities fine for placing biohazardous items in the curbside trash (there's a $1000 fine for first offense where I live -- I found out about this the hard way because I threw out my dog's IV lines and capped IV needles, contained in a sealed plastic jar. I was able to get out of it since I was able to prove it was veterinary, not human items -- a grey area in the rules.)

I know the rule applies to any item with blood (i.e. a bloody tissue), needles, even used tampax. I understand it, as it's a risk (albeit a small, remote one)to the trash collectors and the neighborhood residents: The health dept. (whom we dealt with in contesting our fine) said that in the case of an item soaked with blood, pets could easily find these items in a toppled trash container, and bring them home. They indicated that the bloodborne pathogens are reactivated when wet; therefore, they said there's a [remote] chance of transmission if you were to directly contact the bloody item while trying to take it away from a pet.

But in any event, how do you handle this? Do you burn these items? Or do you have to pay for biohazardous waste disposal? Do you have a biohazmat collection in your area? (We do. Biweekly, you put your sealed tin curbside; they take the entire tin and leave an empty one in its place. I'd imagine there's a greater risk of keeping these items around the house in a tin for 2 weeks, but I digress.)

I imagine in communities like mine, where strict Hazmat rules exist, (prompted by the case of a trash collector who was infected with HIV following a needle stick on the job a few years ago), many people probably ignore the rules and don't think twice about tossing a tissue into the trash after a nosebleed. But in the case where a family member has a bloodborne virus, I imagine you'd take serious precautions in this regard.

So do you have a program in your area that collects biohazardous waste? Or do you burn items that can't be flushed? Or take them to a special collection site? Or...? And do you have to take precautions with something like a tissue (from a runny nose)? I'm very curious!


Anne & James said...

Thanks for all your answers. We learned a lot. My husband and I are in the process of adoptiong a HIV+ child now. We are excited to be adding to our family!

Charissa said...

INTERESTING question!! When I was a home health nurse and was dealing with people who used needles on a regular basis, this WAS a requirement for home use, and I would leave a biohazard box at the house for needles. However, with just bloody tissues, etc. we just bag it up and throw it away. I can't see how this would ever be a risk to anybody, as long as needles are not involved. Not sure if this varies from state to state either. Thanks for the food for thought.

Monica said...

I'm so glad you are sharing this with us, and advocating for children with HIV. In 96 I visited a hospital in Romania, with a whole ward of HIV+ kids.They were mainly infected throuh used needles during vaccinations. The parents abandoned their kids at the hospital when they found out about the HIV. These kids lived there until they died,and they all died within 4-5 years. I remember them having big sores and lesions on their little faces, and the way the clung to us. I was 18 then, and this ofcourse made a very strong impression on me. I'm so thankful that treatment has become avilable to children in orphanages and hospitals, and that there is more effective treatment now.

Shea said...

Just a note I wanted to add. Each person should check their state laws.In Arkansas it is a misdemeanor to not tell your doctor and dentist that you have hiv. I work in the dental field and have looked this up before. Mainly I wanted to know because it is important to know a person's hiv status from a medical standpoint. For instance, if a person's cd4 count was not good, I would want to make sure to premedicate them with antibiotics before surgery and probably after as well. If they are low they should probably already be on antibiotics, but there is no guarantee. I have worked in surgery with many patients who are hiv positive and one with aids. All have done well and all were treated with respect, and I was glad that they felt the need to be honest about their healthcare. I was able to take better care of them because of it.

Shea said...

JennyH said...

Glad you are advocating this. You never know, those sweet boys may find a home because of YOU.

I just love your family. Keep up the great work.

Anonymous said...

I am constantly humbled by you and your family. I am learning so much and praying so much!

Sand Springs

Anonymous said...

I so appreciate this post and series- I've followed your story since you first adopted Ava, and have been praying about how a Reeses Rainbow child could come into our crazy hiking, soccer playing, skiing, mountain climbing, kayaking family with physical disabilities and keep up w/our pace- Looking at your Ukranian Boys makes me think that they could all fit into my family and make it to the top of the mountain with us! WOW! But first, I need a bigger house.

Positively Orphaned said...

Great post! Just wanted to follow up on some of the other comments here.

Regarding the myth that a trash collector got HIV on the job, according to the Center for Disease Control FAQ: "Have people been infected with HIV from being stuck by needles in non-healthcare settings?" "No. While it is possible to get infected with HIV if you are stuck with a needle that is contaminated with HIV, there are NO Documented Cases of Transmission Outside of a Health-care Setting."

Regarding the idea that someone could get HIV by trying to get a bloody item away from a pet that had found the object in a neighbor's trash and brought it home: No. HIV is not transmitted in that way as it is not transmitted in a household, educational nor sporting environment. There have been no cases of transmitting HIV from an environmental surface.

Regarding bloody tissues: HIV does not survive outside the host.

HIV is not transmitted through tears, sweat, snot, urine nor stool so the answer to the runny nose tissue in the garbage is: NO you do not need to take precautions.

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