I was diagnosed HIV+ eleven yrs ago. My T-cell count has never been above 200 and my viral load has never been detectible. I have never had ARS or any similar illness related to my HIV status. I have been on a variety of meds and have been on Agenerase, Epivir, Norvir and Zerit from 11/1999 through 5/2004 when I dropped the Zerit and started taking Viread. SInce I work as a social worker in a large trauma center, it is relatively easy to track my lab work and what I am discovering is that my hemoglobin has dropped steadily sicne last May. It was then 13.2 and now is 6.6. I was transfused in November which brought it to 9.0. ALso, I have followed up with a hematologist recently who requested that I have a CT scan of my spleen done. The previous CT scan indicated that my spleen was 12 cm and now is 19 cm. The hematologist has suggested removing my spleen and, even though I work in the hospital setting, I am scared as hell of becoming a patient in one. So, my question is: How much of the changes are related to the new medication (Viread)? Is this change unusual? And has anyone else had an issue with their spleen? Thanks, in advance, to anyone who can help.

In what time frame did you're spleen expand from 12 cm to 19 cm and what relation to the medication have you noticed the changes meaning how long into you're medication befor the swelling started and the sudden drop in hemoglobin ?

The initial CT scan was in November, 2003 and the most recent CT was done in Feb, 2005. The hgb was somewhere around 12.5 in May, 2004 and is 6.6 now. What are you thinking? CS

There can be many reasons but I'm thinking it could be caused by a combination of the infection and also the antivirals .
The liver , kidneys , and also the spleen all filter out the blood and it could be a factor of both a ruptured spleen can be very dangerous and I'm sure you and you're doctor have cosiderd that and that's why he's opting to have it removed the virul infection and antivirals may have both contributed over time and made the walls of the spleen weakend and that may be the cause of the swelling in such a time frame .
Have you had you're liver function and also kidney function checked out also .
Its always good to keep an eye on them also and I think its great you've kept such good control over the virus 11 years and still undetectable .
I realy don't think you can point the finger at 1 or the other but it might be both .
No 1 realy likes surgery but you have to do what is nessascary to keep youreself healthy and if you're in danger of further damage I would definately consider the spleendectomy but to help you make you're descision have you gotten a second opinion yet?
Please post back and keep us updated ........
Keep fighting .............
In good health ...................
............... Lost spirit ................

Another thought .......
The reason I asked about liver and kidney function is because if you're doctor and you're self think the new drug regimen might have caused the acceleration of spleen inflamation it might be a good idea to also check into liver function and also kidney to make sure there is no major affect or toxisticy or build up to cause any further problems due to the differential in ALT scores . The combination sounds to be working well at control of the virus at keeping the numbers very well under detectable levels .
But it would be a good idea to check into everything else just for peace of mind and to avoid further problems down the road.
............ Lost Spirit ..........

Thanks! Liver function tests are done routinely with each set of blood tests (usually quarterly) and they appear to be in-line and appropriate. However, I will have to verify if kidney functions have been measured and monitored. I spoke with the nurse at the hemotologists office yesterday - a really neat lady - and she's convinced me that I will feel better with a transfusion and infusion (of Iron). These are scheduled for Monday and Tuesday of next week. (For some reason, I perceive these "needs" as a set-back and failure, but that's pysch stuff and I know all the parallel arguments - "you wouldn't not fix a broken arm, would you?"). Why "Lost SPirit?" - cs

Certainly not ;)
But in the hopes to help you feel better and bring you're system back to a some what normal balance the needs outweigh the hassle .
Are you going to get a second opinion on the removal of you're spleen ?
Please watch with any lifting and don't try to do any gymnastics ( for a wile anyway ) :)
Like I said befor a ruptured spleen can be extremly dangerous and I'm sure the doctor knows what he's doing but you will probably need to go on some other meds to help keep you're system running smoothley .
Iron is very good for the red blood cells and also the liver and hopefully you will start to feel better even tho I'm sure you're side must hurt terribly and I'm sorry for what you're goin through :(
Best of luck and I will certainly pray for you .
In good health .........
......... Lost Spirit .............

l.s. - thanks for your thoughts. I spoke with a physician friend (who, when he was in private practice, worked closely with the HIV community) who feels that removing the spleen is probably the right thing to do considering its size and the drop in hgb. However, you're right, and I think a second opinion will be in the offing. Since I haven't even seen a surgeon and don't have a follow-up appointment with the hemotologist for another month, I think I'll be OK. Would you obtain a second opinion from another hematologist or two surgeons (and/or a partridge in a pear tree)? I went ahead and had the transfusion today (rather than waiting until Monday) because I felt like crap yesterday. Feeling perky, as they say. Also, will still have the Iron infusion on Tuesday. Thanks for your concerns and prayers. Keep in touch...cs

I'm glad you're feeling a bit better :)
Please and I can't stress to you enough be careful with you're spleen the battle with hiv may have already weakend the walls of you're spleen and the medication may have contributed to such swelling to an already weaknd organ but the main concern now is being very careful not to rupture it . I would certainly make some phone calls and find out my treatment options/any alternatives and/or long term affects and what medication would be needed after surgery . There's no thing as too much information but it sounds from what you told me the end result will be removal of the spleen t
I would definately check on kidney function and make sure the new medication is being removed from the body without any stress on the kidneys and there is no more extra toxicity in the blood .
I hope I helped you a bit and I'm glad you're feeling better remember me or any1 else on this board doesn't need to see or even know you personaly to CARE !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! ;)
GOD LOVES YOU AND SO DO I :)
Keep fighting !!!!!!!!!
In good health ..........
.............. Lost Spirit .................

LS - Ok, now I'm freaked. It seems as though the only thing I know is that hgb is down (up now after the transfusions) and that the spleen is enlarged. No one has spoken of ruptured speels, weakened walls, or kidney issues. What am I missing and what questions am I now asking. My understanding is that the because the organ is so vascular that biopsies are not likely becuase of the chance of hemorrhage. However, it seems as though I am not taking this as serioulsy as I need. Do I need to see my hematologist in sooner that five weeks. I have a follow-up with my PCP next week although, because he's a new PCP, he is not aware of the spleen-issues, although he is pretty much aware of the rest of it. Keep talking to me...cs

I'm sorry the last thing ment to do is scare you .......
I'm very sorry .... To say the least and I do apologise ......
My choice of words mabe have been a little to strong .
And I apologise again .
I do tend to worry when the spleen is enlarged the infusions have from what it seems to me to help bring you're lavels back up (and that's a good thing) you're meds are in good control of the infection (and that's a great thing) my problem is I am too cautious ( OVER CAUTIOUS) and outstep .
I'm sure you're kidney function is fine but its always good to check on it .
You're spleen is enlarged and I always tend to get a little worried . Checking on liver and kidney function is normal just to make sure everything is being cleard out of the body the way it should be (once again I do apologise) I didn't mean to worry you and make you think you're kidneys were in trouble its just a good idea to keep an eye on them . Once again I do tend to be overprotective and like you said " a runny nose is just a runny nose" I meant for you just to be careful and don't over exert youreself and not to put any stress on you're body (even though there fun no cartwheels around the house);) I didn't mean to have you think you're side would explode I just meant to keep an eye on it .
Once again I am sorry
Please I do apologise and the last thing I wanted to do is freak you out ................

LS: Ok, so you and I are goign to spend a lot of time apologizing. Don't fret, I knew that you were only speaking out of concern and I am no where ready to jump off a cliff. I am glad you're there becuase I think your advise and suggestions are positive and seem to knowledge-based. So, please, when I say "...I'm freaked!" I mean that it's just something else to think about not to obsess about! I will write more. IV infusion of IRON today. HGB is up to 8.9. I will certainly keep you posted. Thanks for your honesty...and your concern...and your love. CS

I'm glad you're feeling better and I hope the iron pumps you up even more it is truley amazing how quickly the body can bounce back .
I'm not into magical potions (LOL) :) but I've found that reshie mushroom has been very useful in restoring vitality after about 2 weeks of (PILL POPPING) :) I don't belive in magic bullet cures but a little natural help never hurt.
I can't post links here but I have found some good sites and one in particular which the man who runs it helped me when I was in trouble.
I've found that a good healthfood shop (NOT A CHAIN STORE) can help greatly .
Once again I'm glad you're feeling better and you're not considering cliff jumping :) :)
And I liked what you said about (A RUNNY NOSE IS JUST A RUNNY NOSE) such simple words can teach so many stressed out people such a good lesson .
Keep the faith and most of all ......
KEEP FIGHTING !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
................... LOST SPIRIT ........................

Dear LS: "reshie mushrooms?" Does this come in a pill form, powder, or can I saute them over a New York strip? Seriously, thanks for your message...I have an appointment with my PCP on Wednesday and not with my hematologist until May 05. I have a surgeon friend in North Carolina that I will probably be in contact with about the possibility of surgery. However, since I work in a hospital, I am so unwilling to go to the hospital (not because I afraid people will find out, but because of the infection rates). I'd probably be happier if I could find someone to do it on my dining room table. Anyway, I'll keep you posted. CS

you crack me up:)
Good to hear from you again and the dining room table would be a bit messy don't you think?
And yes they do come in pill form .
I take them to help with my many problems .
Hospitals , shopping centers all germ factories and it is wise to avoid them if its not of great need to go there .
Once again it is good to hear from you and I'm glad all is going well for you .
Come to think of it I could use a ny strip myself
Be well cschombs
......... Lost Spirit ...........

If you're buying ;)

LS: NO doubt about it..the New York Strip is on me! ANyway, here's what I did today. SInce I work in a major trauma center (have been for the past 11 yrs) I started asking physicians, pastoral care personnel, nurses, etc. about surgeons. So far, the only one that made any sense is the ARNP who suggested that I use one of our trauma surgeons becuase trauma surgeons remove more spleens than do most surgeons. It's not usually an elective procedure. Now, all I have to do is get up the nerve to make the appointment to find the surgeon to talk about it and then there's all that clearing of the dining room table. Oh, what tangled webs we weave! CS

That does make a lot of sense and chances are you probably know a few from working ther so that would help you feel a bit more comfortable .
I think its a great thing what you do in the trama center also and what you also do here (MY HATS OFF TO YOU) ;)
Have a great day and I hope to here from you soon :)
.......... Lost spirit .............

Don't forget the gold plated flatware and crystal glasses ..............:)

LS: OK, so now I have to discard the paper plates and plastic cuttlery. Anyway, each day is filled with new things unfolding - will my hgb remain up? Will my spleen eviscerate through my abdomen? When is a runny nose not a runny nose? Ah, the sweet joys of anticipation! And, the hell are you doing up at 4 a.m. CS

Haha some times I even sleep :)
Well that's why you need to get all the facts
1) will you need to be on other medications?
2)at rate is you're spleen enlarging ?
3)is there a chance of saving it with medications and would they need to be permanent?
4) how much wood could a woodchuck chuck:)
Well it sounds like you're running a bit of a maze but you're getting educated on the subject instead of rushing rite into it and that's the smarter thing to do ...... I've never been a very surgery fan my self and I still go insane when I (OHHH MY GOD) even think of getting a needle
Even tho the doctor sticks me with enuf of them but I know (IN MY NEXT LIFE THERE WILL BE A ROLE REVERSAL AND I WILL BE ARMED WITH THE NEEDELS) Best of luck ..
Catcha at 4:00
:)
........ Lost Spirit .........

Here's the deal: I spent some time at work (still here) searching the internet re: splenectomies and also as it relates to HIV. As best I can determine at this time, living without a spleen may be better than living with a damaged one (like being alone is sometimes better than having a roomate). I'll see the PCP in the morning and hopefully get through the thirty or forty pages I culled from the internet. Still not ready to make a decision. Crap, I can't decide between New York Strip or T-bone, a sharp stick in the eye or a hammer to the thumb. More later. Thanks for your input and support! You just don't know much I appreciate these conversations. Leaving work now...CS

Yes that is very true a damaged spleen can lead to all sorts of problems .
Once again not to scare tge hell out of you.
The spleen serves many functions it holds and also filters the blood ect.... As I'm sure you're reading up on so I won't get into spleen function .
My concern is .
Is there a chance the swelling will ever go down meaning ( can it be saved)
Hiv patients are known to develope spleen problems over time.
Is there any medications to help to preserve the spleen and to heal it ( indefinately)
What are the chances of rupture ( tho you're spleen is enlarged I wouldn't worry about an alien bursting out of it yet )
A damaged spleen can also lead to toxin build up and a chance for infections .
What kind of treatment would be needed after surgery and matenance medications would be needed to help make up for the missing spleen
Funtions in the body .
Would there be a drug interaction with hemostatic medicine and the antiretroviral medications already in use .
Once again not to scare you but there is no thing as too much information and I'm sure you will be fine once its all over with .
Just don't stay up all night reading the papers will be there in the morning .
Catcha later .........
.......... Lost Spirit ..........
;)

Another thought .......
Prime rib Ah' jus baked potato extra extra soure cream and chives and corn o'brian
Hmmmmm time to make a trip to the outback steakhouse ........
:)

LS will write more this evening. Thanks for the questions which I will take with me to my drs. appointment this morning. Talk to you later CS

OK, so I went to PCP this morning and he seems in agreement that the spleen should be removed. "Major surgery," he said. After running down some names of surgeons I have made an appointment with one for next week. I am going to post the question on the board about people who have undergone this surgery to see if others have and what they've had to deal with. Keep in touch. CS