Advertisement
The Body: The Complete HIV/AIDS Resource
Follow Us Follow Us on Facebook Follow Us on Twitter Download Our App
Professionals >> Visit The Body PROThe Body en Espanol

HIV Life >> Living With HIV

Pages: 1
Worried mother
Unregistered

Daughter-in-law and disease progress
      #71229 - 09/07/03 07:23 PM

I have posted to a couple of the other forums, but they don't seem to have the activity this one has...so here goes. I have just talked to the mother of my three grandchildren, positive wife of my negative son. I am now worried sick. She had her third child six months ago. (she was positive during all three births, and thank God, all the children are negative). The most recent news is very disturbing and I need help from people who know because I have nowhere else to go. Her viral load really climbed after this birth and her CD4 count did not rebound as it did after the other births. She is now at CD 4 of 121 and VL of 415,000. She is on no meds and the doctor is not sure what to give her at this point, since she has had problems in the past and does not like taking medication. Her doctor has told her to make a living will and we are all very concerned. My son is in the military, which has been very helpful from a healthcare standpoint, but what should their next steps be, what can we anticipate next?



Post Extras: Remind Me!   Notify Moderator  
Jackie_Blue
Legend

Reged: 10/26/00
Posts: 2028
Re: Daughter-in-law and disease progress new
      #71278 - 09/08/03 05:48 AM

The current CDC recommendations for medication for chronic infection is to start medication when the CD4 count drops below 350 or the viral load rises above 30,000. I can understand about having problems with the meds and not wanting to take them. I've been off medication for almost a year for those same reasons. However, I will put up with the side effects when I have too. I can also understand how a doctor isn't sure what to give a patient, especially in a treatment experienced patient, but there is something out there. There have been new medications released in the last year. There are also clincial trials going on all the time.

From the way you have written your post it almost sounds like the doctor has given up on her. Her health certainly doesn't sound like she is at a point where she can't rebound if she gets back on medications. I know you don't always have a choice of doctor's in the military health care system, but it might be good if she could see another HIV specialist.



Post Extras: Remind Me!   Notify Moderator  
Anonymous
Unregistered

Re: Daughter-in-law and disease progress new
      #71281 - 09/08/03 11:23 AM

Has she seen an HIV specialist ? It does not sound like her situation is hopeless to me. There is always hope sometimes you just have to find it. Do not give up.



Post Extras: Remind Me!   Notify Moderator  
Anonymous
Unregistered

Re: Daughter-in-law and disease progress new
      #71283 - 09/08/03 02:15 PM

You must have a family meeting with her and your son. "She doesn't like taking medication." That's not viable. She has no choice. She WILL DIE if she takes no medications. She has a life threatening disease and she MUST take medications. She's particularly at risk NOW with a cd4 count under 200. She needs to see someone immediately. Maybe a woman HIV specialist she will hear. But you must intervene. Perhaps she needs ideas on how to remember to always take the medications. Maybe she needs babysitting help. But she MUST take her health seriously or she will get sick and die. Sorry to be so blunt but she is in serious trouble.

Look here for a qualified doctor. Find a woman who may be able to reach your daughter in law.
http://www.aahivm.org/new/referral.html



Post Extras: Remind Me!   Notify Moderator  
orion
Member

Reged: 08/20/03
Posts: 17
Re: Daughter-in-law and disease progress new
      #71317 - 09/09/03 09:10 AM

I would have to agree with the other respondants that seeing an HIV doc would be beneficial. The doc she has been seeing may be a very good one but, may have tried everything that he/she knows of. There are doctors out there who may have more knowledge of HIV and be experienced in various drug combos as well as having knowledge of the latest drugs being used.

One thing I would add is that your daughter in-law may want to see a social worker or therapist that specializes in HIV (if she isn't already) and/or join a support group. Maybe discussing her aversion to meds will help. If she has problems with side effects and doesn't feel that she can communicate this to her doctor, a social worker can be an effect advocate and go between. Joining a group and talkng with others who are experienceing the same thing can also help.

What it comes down to is that she cannot just make a will and give up. I would suggest that you look at some other trhings in her life. You mentioned the children. I would assume she gets some assistance from yourself or other realtives in caring for them. This is likely a great help to her but, does she still have enough of a parental role that she does not get the feeling the kids will be fine without her? Is she allowed to leave all decisions up to you, dad and other relatives? If so, pushing her back into the parental role as much as she can handle may give her back some purpose and a reason to fight for her health...the children. This may be a motivator in taking medication. Try to look at these types of things and come up with ideas. Someone who is not wanting medication that could keep her alive is giving up on life. She needs to see that there are people who need her around and that tehre are reasons to stay alive.



Post Extras: Remind Me!   Notify Moderator  
Anonymous
Unregistered

Re: Daughter-in-law and disease progress new
      #71361 - 09/09/03 09:01 PM

I agree with the others who have replied that she should find a different doctor. I have known about my HIV status for only a year, and luckily I have a high CD4 count and low viral load, so I haven't had the experience of taking meds yet. However, when that time comes, nothing would stop me...that's a life or death decision. Soon after i found out about my HIV status, I read a book by Dr. Jon D. Kaiser called "Healing HIV, How to rebuild your immune system." His patients incorporate natural therapies along with medicine and don't seem to have as tough of a time with the HIV medications. The book has a copyright date of 1999, and some of the information is outdated, but I think it would help you. Your daughter-in-law has kids to raise and a long life to live, she just has to be pro-active and take care of herself. There IS hope!



Post Extras: Remind Me!   Notify Moderator  
Anonymous
Unregistered

Re: Daughter-in-law and disease progress new
      #71450 - 09/11/03 12:21 AM

I don't want anyone to think, like one person who posted did, that I may be usurping my daughter-in-law's parental role. In fact I have not even seen them in over a year. I live on the west coast and they live on the east. The information I receive is infrequent and by phone. I am unsure as to the qualifications of her doctor, whom I assumed to be an HIV specialist, but admit I am not sure. I will pass on the suggestions to my son. I do believe that my daughter-in-law has given up. I believe she feels death is inevitable. That seemed the case from the conversation we just had, and their ignorance of what may be out there is more frightening than almost anything else. Their mutual immaturity seems likely to play a significant role to impeding any success in addressing what they need to do to prolong life and health. It is certainly a tragedy and I will certainly take the advice given here and pass it on.



Post Extras: Remind Me!   Notify Moderator  
Jackie_Blue
Legend

Reged: 10/26/00
Posts: 2028
Re: Daughter-in-law and disease progress new
      #71475 - 09/11/03 07:53 AM

She should also be evaluated for depression. It's not uncommon for people with HIV to have issues with depression. I think you said that she had a baby not long ago. It may be she's dealing with a double whammy. Post-partum and regular depression.



Post Extras: Remind Me!   Notify Moderator  
orion
Member

Reged: 08/20/03
Posts: 17
Re: Daughter-in-law and disease progress new
      #71476 - 09/11/03 08:31 AM

I certainly never meant to insinuate that you would be usurping your daughter in-laws role. I don't know you and would never make such assumptions.
The point I was trying to make is that if she is at a point wher she may giving up she also may be convincing herself that her life is no longer necessary to anyone. It isn't uncommon for people with a life threatening illness to push themselves away from tehir responsibilities in order to prepare themselves and loved ones for their death. This is a by product of depression.

My point was that if you notice your daughter in law doing this, you and otehrs that care about her may want to try pushing her the other way. It's helpful to have that kind of responsibility, to have something else to focus on and to feel needed.

On a message board like this it's hard to take a small bit of information from a situation you know nothing about and try to offer some help without your words being misunderstood ocassionally. When dealing with a subject that involves human feelings rather than medical and clinical data, we tend to offer possibilities taht may or may not be true for the case given. It's just giving some possible scenarios based on our own experiences rather than a judgement statement on your situation. Sorry if my words offended (they seem to do so frequently here). I am going to the same thing otehrs with this virus are going through, trying to find ways to cope and trying to share some support, ideas and suggestions both ways with others. It doesn't always seem to work out that way though :-)



Post Extras: Remind Me!   Notify Moderator  
Anonymous
Unregistered

Re: Daughter-in-law and disease progress new
      #71485 - 09/11/03 12:00 PM

Geez "orion" why don't you just shut up? you went and insulted another person who is here looking for some help. Not one message of yours has ever been helpful to anyone. You have nothing but inconsiderate remarks for people. Just go away. Your not wanted here.



Post Extras: Remind Me!   Notify Moderator  
Anonymous
Unregistered

Re: Daughter-in-law and disease progress new
      #71526 - 09/12/03 07:43 PM

It is possible that seeing the side effects and disease without much knowlege your sister in law must be extreemly scared. Try to reassure her. It is a must that she should be seen by a HIV specialist. Since her Cd4 count is less than 200 make sure that, if she become sick hospital should admit her and treat her. Browsing through the internet I have come across people with HIV for more than 15 years. Some of them reached to a cd4 of 50 and gained back good health with good medicine and proper HIV specialist. Reassure her that there are people living with HIV it is no longer a death sentence even with low cd4 counts. She needs to be evaluated for her depresion. Take care.



Post Extras: Remind Me!   Notify Moderator  
Anonymous
Unregistered

Re: Daughter-in-law and disease progress new
      #71567 - 09/13/03 04:56 PM

With a cd4 count of 123 she needs immediate proper medication( if she is facing side effects it has to be changed to other better medicines), good HIV specialist who at least has seen more than 50 HIV patients, hospital to get admitted in case of emergencies, even a simple fever may not be as simple as it looks like, it can be due to pneumonia or CMV which can be handled by expert hospital staff. Please do not delay. This is very important and urgent (each minute counts) at this time. HIV is no longer a death sentence if proper action is taken at right time other wise it is. Once she recovers ask them to search in the internet more information about HIV. Even the body has many expert doctors advicing treatment etc. These all will be useless if she is not seen by a specialist and does not start the medicine immediatly. Below a certain cd4 level many opertunistic disease wait to take charge. If possible you or your son should take this step as in case of emergency. She can have a long better life if there is no delay in taking decisions. She at this stage may be very scared but she will be thankful to the help you have given to her. There are many people out there who's cd4 counts droped below 100 still living with good healh because they were fortunate enough to have very good medical facilities. Many lives lost due to our ignorence to this disease which would have been avoided. So please try to get as much as information available. Take care.








Post Extras: Remind Me!   Notify Moderator  
LoveIsNotAWord
Grand Master

Reged: 11/05/03
Posts: 173
Loc: We are in West Texas
Re: Daughter-in-law and disease progress new
      #77884 - 11/07/03 07:34 PM

Dear Worried Mother,

The hardest part of the situation is that you love your son and grandchildren, and feel the need (as a mother) to intervene. Your daughter in law made choices all along; that are of a personal nature including the choice to get pregnant while HIV+ and this is a very traumatic choice; for a mother knows her child can contract the virus if she is positive. As a professional nurse I have watched many women do the same; perhaps your daughter in law took antivirals while pregnant to lower the risk I hope she did.

The choice to impregnate while positive to bring another life into this world when she had two previous children and a loving husband was a choice made (I am sure) with the knowledge that it would tax her body and play havoc with her labwork. If she has had drug resistance there are new medications available; side effects are always a potential the virus mutates and is so powerful that only the strongest of chemotherapy holds it at best in remission.

I sympathize with you BUT this is a choice this married couple makes together. If you love your son and grandchildren then BE there for them on the level they need you. Do what is needed; it may be hard but be there in a loving manner as mother to your son (and daughter in law) and grandmother; not as judge and jury.

This may sound harsh but this life is of their choosing as a couple. We do not need to agree or disagree; there is no anxiety or panic if you realize ultimately God determines the destiny of all here. My heart and prayers go out to you.

I am by the way the wife of an HIV+ man; we are newlyweds and I too made a choice; to marry a man I knew was positive for I love him unconditionally.

Karen ;)



--------------------
Karen G....
"Live with it!"

Post Extras: Remind Me!   Notify Moderator  
Janet Lynn
Unregistered

Re: Daughter-in-law and disease progress new
      #92665 - 03/20/04 08:54 AM

First I commend you! A new doctor seems to be on the top of the list! Then treatment. Her viral load is too high and can be brought down with meds. She is at that crucial moment where a medical decision should be made. If her doctor doesn't know what to do, get a new doctor, Today. AIDS hotlines are in the Yellow Pages....Don't be worried; be busy....God Bless

Post Extras: Remind Me!   Notify Moderator  
Anonymous
Unregistered

Re: Daughter-in-law and disease progress new
      #133606 - 01/27/05 01:47 AM

I don't know if this will be of any help, but I can share what my husband and I have been going through. His viral load is over 100,000 and his cd4 count is under 20, but he just, after about 13 years started on HAART after getting esphagul thrush and wasting, he is up exercising, laughing and getting healthy again. We are hoping to go from AIDS to HIV status again. It is by no means to late for your daughter-in-law. Good luck in finding a HIV specialist and congradutations on your new grandbaby.

Post Extras: Remind Me!   Notify Moderator  
Pages: 1


What's New at TheBody.com

Additional Information
0 registered and 1 anonymous users are browsing this forum.

Moderator:  TheBody, bogart, crabman, riverprincess 

Permissions
      You cannot start new topics
      You cannot reply to topics
      HTML is enabled
      UBBCode is enabled

Thread views: 3415

 
Jump to

Contact Us | Privacy Statement The Body

*
UBB.threads™ 6.2.3