CD4 levels - a bit worried

[Guest guest]

I hope it is OK for me to ask all this?

My husband and I are in our 50s and have only known we have HIV since

this January. We found out we had it because my husband was admitted

to hospital with Aids related infections and a CD4 of 9.

I was found to have a CD4 of 250 and we were both put on medication

Atripla, by about May.

Now we both have a CD4 count of around 260 - my last blood test said

260 my husbands 268.

When we go to the consultants - we have different ones at the same

clinic - my husband's is very clear to say how well he is doing

considering he had a CD4 of 9 originally and how rapidly his CD4 count

has gone up.

But mine seems to avoid mentioning my CD4 count and on last visit I

was in a bit of a hurry and was talking about other things and when

left realized that yet again I had not been told my CD4 while a point

was made about telling me I was undetectable ( which I have been since

very soon after taking the meds)

So I had to ask my husband to get mine when he next went in.

My questions are

1. that while I agree that a CD4 count is very good for my husband as

his was once so low and we were told not to expect a rise as high as

this in only a few months, but as I started with a count of around 250

should mine have gone up a lot more by now?

We take the Medication properly.

2.And could my consultant be avoiding mentioning my lack of

significant CD4 increase as it may worry me and stress will reduce

them further?

I would rather know as if I know I can find out if there is something

I can do do increase my CD4 count or if I need worry -

3.is there?

and

4.should I be worrying?

I am beginning to get worried as if I was responding to the meds as

well as my husband as I started with a CD4 much higher than him

4. surely mine should have gone up more than 10 since I have been on

the medication?

Also I do not feel as well as my husband and have had quite a few

small illnesses and feel tired while he has been fine and not caught

anything since leaving hospital.

I do not want my husband to do worse than me or visa versa as we are

determined to keep well for each other and for our daughter - but I do

not want my CD4s not to rise as I have been told it is not so much

what they are but how rapidly they have risen since being on the

medication and how much they have risen compared to what they started at?

5. is his right?

I have read up all I can but am fairly new to all this so feel the

opinion of those who have lived with HIV for much longer and been on

the meds is so valuable

Thank you

Veritee

[Guest guest]

Welcome to the list, Veritée, I hope I can answer your questions. "1. that while I agree that a CD4 count is very good for my husband ashis was once so low and we were told not to expect a rise as high asthis in only a few months, but as I started with a count of around 250should mine have gone up a lot more by now?"Your husband was far more ill than you, and CD4 counts are more critical at 9 than at 250. It does not surprise me that they are paying more attention to CD4 counts in your husband.At higher numbers, changes follow trends over time. Like the tides, T cell numbers change from visit to visit. I would bet that over the next few months, even years, you will see significant rises in your t cell counts. Know that even if the numbers are not rising, at 250, the functioning of your immune system is probably much better than it was before you started therapy. It is perfectly possible that you have many, many more t cells than you did, but these are going about their proper business in the skin, organs, and lymph nodes, fighting infections, and repopulating your body. When T cells are in the blood, they are on their way to somewhere else, they don't normally live there anymore than you live in your car on the interstate. "'2.And could my consultant be avoiding mentioning my lack ofsignificant CD4 increase as it may worry me and stress will reducethem further? I would rather know as if I know I can find out if there is somethingI can do do increase my CD4 count or if I need worry -3.is there?and4.should I be worrying? "I would assume that your doctor thinks you are doing very well. I call T cells the "cocktail party" number. It's the statistic everyone talks about, but in no way is a full measure of your health. You do not need to fixate on today's T cell count. By taking charge of your health, taking medications, and learning, you are already doing what is necessary to improve your health, and in time, those t cell counts will rise. It's easy to tell people, "don't worry," but you will........in time, you won't even think about having HIV, except for the rhythm of pills and doctor's visits. Life with HIV becomes just as banal as it was before you knew. "I am beginning to get worried as if I was responding to the meds aswell as my husband as I started with a CD4 much higher than him4. surely mine should have gone up more than 10 since I have been onthe medication?"Some people have fast T cell increases, and in others, it is agonizingly slow. It does seem that people with the very lowest counts often have the fastest rises. It may be that a slow, gradual rise indicates a healthier healing of the immune system. You are a unique person, and there will be a unique course to your therapy, with mostly ups, and a few downs. The key thing is that you have started medications before severe, permanent damage has been done to you. "Also I do not feel as well as my husband and have had quite a fewsmall illnesses and feel tired while he has been fine and not caughtanything since leaving hospital.""I do not want my husband to do worse than me or visa versa as we aredetermined to keep well for each other and for our daughter - but I donot want my CD4s not to rise as I have been told it is not so muchwhat they are but how rapidly they have risen since being on themedication and how much they have risen compared to what they started at?"He is probably feeling MUCH better than before. He was sick with 9 t cells, and might not be noticing little things as much as you do, as his health has dramatically improved. In your case, you never felt any "sickness," so you may be hyperaware of anything a little off, and worrying, more than you need to. Make the doctor aware of any concerns you have. It helps him to have a dialogue.As you live with HIV, you will find that you get the same number of little colds, bugs, etc, as you did before. You will come to learn what is important, and what is just routine. I do try to be a little more aware of my colds, flus, etc, and anytime I have a fever of 101F/38C I don't think about it, I call the doctor."5. is his right?I have read up all I can but am fairly new to all this so feel theopinion of those who have lived with HIV for much longer and been onthe meds is so valuable"It's all a bit overwhelming, at first, and it seems to take everyone a year or so to get through the adjustment to this new reality. The medications are miraculous, and the overwhelming majority of people do great. I forget sometimes that I even have a disease, and that is the best thing at all.In the meantime, you and your husband should be planning on a long life, thinking of your retirement, and doing everything you should be doing to enjoy a full life and eventual retirement.All the best,JB

[Guest guest]

Welcome to the list, Veritée, I hope I can answer your questions. "1. that while I agree that a CD4 count is very good for my husband ashis was once so low and we were told not to expect a rise as high asthis in only a few months, but as I started with a count of around 250should mine have gone up a lot more by now?"Your husband was far more ill than you, and CD4 counts are more critical at 9 than at 250. It does not surprise me that they are paying more attention to CD4 counts in your husband.At higher numbers, changes follow trends over time. Like the tides, T cell numbers change from visit to visit. I would bet that over the next few months, even years, you will see significant rises in your t cell counts. Know that even if the numbers are not rising, at 250, the functioning of your immune system is probably much better than it was before you started therapy. It is perfectly possible that you have many, many more t cells than you did, but these are going about their proper business in the skin, organs, and lymph nodes, fighting infections, and repopulating your body. When T cells are in the blood, they are on their way to somewhere else, they don't normally live there anymore than you live in your car on the interstate. "'2.And could my consultant be avoiding mentioning my lack ofsignificant CD4 increase as it may worry me and stress will reducethem further? I would rather know as if I know I can find out if there is somethingI can do do increase my CD4 count or if I need worry -3.is there?and4.should I be worrying? "I would assume that your doctor thinks you are doing very well. I call T cells the "cocktail party" number. It's the statistic everyone talks about, but in no way is a full measure of your health. You do not need to fixate on today's T cell count. By taking charge of your health, taking medications, and learning, you are already doing what is necessary to improve your health, and in time, those t cell counts will rise. It's easy to tell people, "don't worry," but you will........in time, you won't even think about having HIV, except for the rhythm of pills and doctor's visits. Life with HIV becomes just as banal as it was before you knew. "I am beginning to get worried as if I was responding to the meds aswell as my husband as I started with a CD4 much higher than him4. surely mine should have gone up more than 10 since I have been onthe medication?"Some people have fast T cell increases, and in others, it is agonizingly slow. It does seem that people with the very lowest counts often have the fastest rises. It may be that a slow, gradual rise indicates a healthier healing of the immune system. You are a unique person, and there will be a unique course to your therapy, with mostly ups, and a few downs. The key thing is that you have started medications before severe, permanent damage has been done to you. "Also I do not feel as well as my husband and have had quite a fewsmall illnesses and feel tired while he has been fine and not caughtanything since leaving hospital.""I do not want my husband to do worse than me or visa versa as we aredetermined to keep well for each other and for our daughter - but I donot want my CD4s not to rise as I have been told it is not so muchwhat they are but how rapidly they have risen since being on themedication and how much they have risen compared to what they started at?"He is probably feeling MUCH better than before. He was sick with 9 t cells, and might not be noticing little things as much as you do, as his health has dramatically improved. In your case, you never felt any "sickness," so you may be hyperaware of anything a little off, and worrying, more than you need to. Make the doctor aware of any concerns you have. It helps him to have a dialogue.As you live with HIV, you will find that you get the same number of little colds, bugs, etc, as you did before. You will come to learn what is important, and what is just routine. I do try to be a little more aware of my colds, flus, etc, and anytime I have a fever of 101F/38C I don't think about it, I call the doctor."5. is his right?I have read up all I can but am fairly new to all this so feel theopinion of those who have lived with HIV for much longer and been onthe meds is so valuable"It's all a bit overwhelming, at first, and it seems to take everyone a year or so to get through the adjustment to this new reality. The medications are miraculous, and the overwhelming majority of people do great. I forget sometimes that I even have a disease, and that is the best thing at all.In the meantime, you and your husband should be planning on a long life, thinking of your retirement, and doing everything you should be doing to enjoy a full life and eventual retirement.All the best,JB

[Guest guest]

First, I have to say that I think you are doing a very good job

understanding your meds, etc.

One thing I have learned from my 15 years with this is that you(the

patient) have to be in charge. You

must demand that you get the answers to the questions that you have. I

think for so many of us Dr.'s have this

often unwarranted pedestal that we set them on. This makes us afraid

to ask questions when they seem pressed for time

etc. I have always found it helpful to write out ahead of time the

areas I want to cover. Almost all the time, the first thing is " most

recent labs. " Ask him all the questions you have relater to that. Do

not let him brush you off. I think most Dr.'s know that for the first

several visits with a new patient, they will have to take more time

than usual getting someone up to speed..

As, for you other questions about increasing your t'cells - I would

suggest a good exercise program, eating well and no booze or cigs.

As for why ur numbers are different that your husbands is an

impossibility - and one that I don't think you should worry about.

You are both

undetectable and that is the main thing. Maybe his system just

responds differently to Atripla that yours. Also, immune systems are

just plain different

from one person to the next. The low point for a non HIV person could

be a couple of hundred points different that another HIV person.

I hope u get some other info that can help u.

Neal