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Author Topic: Just want reassurance  (Read 7449 times)

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Offline rabit64

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  • Posts: 34
Just want reassurance
« on: September 27, 2009, 12:04:34 PM »
Hello everyone,

I eas ill from January and saw my weight drop from 17st to 9stin 3 months. My GP refered me to hospital where every CT and MRI scan under the sun was carried out but they all came back negative. Meanwhile I was getting progressively worse. It was 9 weeks ago when a HIV test was done which proved positive. I had a viral load of 1 500 000 and a CD4 count of 24. I was rushed into hospital with only 2 days left to live. They pumped me full of every drug and I pulled through. I was put onto ART straight away (Combivir and Naviropine). Within 2 weeks my VL had dropped to 1565 and CD4 rose to 156. I am gaining weight and improving every day, but am suffering with the damage done by the virus while it ran unchecked. How do you cope with the feelings of worthlessness, being alone and unloved by everyone? I know its not true, but the slightest thing sets me off crying. What really gets me down is the effects of the peripheral neuropathy caused by the virus. My tous and ankles are constantly numb and tingly, and my muscles are very weak in my legs. Does it get better? Is there any treatment that will aleviate these effects? Sorry to ramble on but I am still coming to terms with all of this. If anyone can help me with my questions I would be grateful.


Rob

Offline sparky1976

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  • Posts: 19
Re: Just want reassurance
« Reply #1 on: September 27, 2009, 12:49:28 PM »
Hello, im sorry i can’t offer any advice – I’ve only recently been diagnosed myself, so its all new to me, but i do genuinely hope your on the mend and feel better soon. :)

As for support, this place seems to be a great place to find that - everyone ive spoken to is very friendly, helpful and genuine so I’m sure someone will be able to answer your questions in more detail for you.

Offline mecch

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  • Posts: 11,908
  • red pill? or blue pill?
Re: Just want reassurance
« Reply #2 on: September 27, 2009, 01:43:20 PM »
Hi Rabit
Sorry to hear of the dramatic illness.
Do you have any idea if that is a recent infection or one dating many years?
DId you have neuropathy for years before you tested seropositive??
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline rabit64

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  • Posts: 34
Re: Just want reassurance
« Reply #3 on: September 27, 2009, 02:14:35 PM »
Hi Folks,

thank you so much for your responses, its so nice to know that others care. Sparky, I feel for you, and know what you are going through because I am riding the same journey. Maybe we can ride it together? Please feel free to contact me at any time even if it is just to sound off in frustration. Lets get through this together, and then in 20 years time we can still send each other christmas card e-mails.

mecch, I had no idea at all that I might be HIV+ until the test. There are a couple of thoughts by the hopsital. I could have caught it when my wife and I were in Singapore 2 years ago, and I cut my finger very badly, but this seems highly unlikely. The consultant favours a blood transfusion I had 19 years ago. I could have been walking round since then with this inside with absolutely no idea that I was infected.
Not sure what you mean by neuropathy. Please explain to a novice and then I will answer what you want to know (hopefully). I will beat this and survive!!!! My current life expectancy from the hospital is christmas. I am determined that it will be christmas 2035 or later. Look, now I've started to cry again, stupid pratt i am. Sorry guys, get back to you soon.

Offline Joe K

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Re: Just want reassurance
« Reply #4 on: September 27, 2009, 02:32:27 PM »
Hey Rabit,

I'm so sorry to hear of your recent illness, but many of the symptoms you are now experiencing, may completely go away, once you regain some more health.  It's hard enough to find out you are positive, but it's a real slam when you get the news and a major illness.  What matters is they caught it in time and there is no reason you will not fully recover.  My lowest level of CD4s were 4, with a viral load in the millions and I have fought numerous illnesses over the years and with the right care, you can and will beat this thing.

I also promise that things will get better.  I know your mind is spinning and you have so many hopes and fears, but for now, just give it some time.  You need time to adjust to your new status, so take care of you and that includes your mind, spirit and body.  Great advances have been made in HIV treatment and there is no reason that you will not live a long and fulfilling life.  I should know, I have been doing it for 25 years.  Welcome to the forums.

Offline rabit64

  • Member
  • Posts: 34
Re: Just want reassurance
« Reply #5 on: September 27, 2009, 02:44:47 PM »
Thanks killfoile, your comments are so reassuring, as are the others on this site. I was offered counciling but this is what I really need, support and words of encouragement from others who have been through and those still going through what I am experiencing. Keep it up folks.

Rob

Offline sparky1976

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  • Posts: 19
Re: Just want reassurance
« Reply #6 on: September 27, 2009, 04:19:23 PM »
Sparky, I feel for you, and know what you are going through because I am riding the same journey. Maybe we can ride it together? Please feel free to contact me at any time even if it is just to sound off in frustration. Lets get through this together, and then in 20 years time we can still send each other christmas card e-mails.

deal! tho it'll have to be email, poor law student here... and trust me im poor :( and thanks for the offer, i warn you in advance i waffle so if you get a message that looks like a chapter from War and Peace you were forewarned ;)

Look, now I've started to cry again, stupid pratt i am. Sorry guys, get back to you soon.


well then that makes two of us - your first post had me filling up. and never say sorry, its always allowed :)

Offline rabit64

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  • Posts: 34
Re: Just want reassurance
« Reply #7 on: September 27, 2009, 05:12:08 PM »
Hi Sparky,

more than happy to e-mail. Check your PM my e-mail address is on there. Look forward to hearing from you, and thanks for your last post, it did me good

Rob

Offline rabit64

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  • Posts: 34
Re: Just want reassurance
« Reply #8 on: September 28, 2009, 05:23:07 AM »
Just a quick note mecch. My neuropathy started last year before testing and ART. Consultant feels that this is virus damage and not drug related.

Offline Dale Parker

  • Member
  • Posts: 266
Re: Just want reassurance
« Reply #9 on: September 28, 2009, 03:14:57 PM »
Hey Rabit: Your story and mine are almost identical.  I was diagnosed at the end of March this year.  I had no idea that I was HIV+. My CD4's were 21 and Viral Load over 500,000. I'm on Kaletra and Truvada. My CD4's are now 159 and viral load is 750. Although there are not a lot of people on here that had CD4's as low as ours there are some and they are very much alive and doing great years later.
   I can't help you with your neuropathy but I can suggest that you get a good HIV doctor and if you can get a doctor who specializes in Neuropathy. If you can, get involved with your local HIV/Aids groups.  Not only are they a wealth of information but you get great support and they will have groups to help you deal with it emotionally. Everyone goes thru the feelings that you have.  Some of us get over them by ourselves others need to talk things out either in groups or with professionals.  I didn't really have much of a problem dealing with being HIV+ but had lots of other problems with money, drugs, housing and mostly accepting help from others.  If you do a search for "dale parker" you can read my stories.  Not every day has been a walk in the park but I have survived it and am much stronger for what I have have been thru. You will find the people on this site will not only give you tons of support when you write in but if you go back and read some of their stories you will see that some of them have endured and survived a lot worst than we have.
 Feel free to PM me any time you need to talk or even if it's just to vent your feelings.
Take care
Dale
Apr 09  CD4 21, CD4/CD8 ratio 0 VL 500,000+
July 09 CD4 158, CD4/CD812% VL 750
Oct 09 CD4 157 CD4/CD8 14% VL UD
Feb 10 CD4 197, CD4/CD8 11% VL UD
May 10  CD4 252 CD4/CD8 12% VL UD
Aug 10 CD4 211 VL UD
Nov 10 CD4 272 CD4/CD8 0.138 VL UD

Offline rabit64

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  • Posts: 34
Re: Just want reassurance
« Reply #10 on: September 28, 2009, 05:48:40 PM »
Hi Dale, good to see that others are going through this at the same time. I agree with you that its not just the diagnosis that drags you down. Life goes on around you and the pressures of work, money etc. are too much to cope with on top of this. I had a phonecall from a company wanting to know why my payment was 3 days late and I just lost it on the phone. By the time I had finished crying the poor guy didn't know what to say.

Money is the worst at the moment. My salary has dropped by  half, and after the essential bills are paid I have hardly anything left for food. There is only so much you can do with a tin of beans and a slice of bread.

I have accepted my HIV, but cant cope with the damage it has done to my body while it ran unchecked. Were you as ill ? I can not walk far, and have to use a wheelchair, which I joke about, but have a good cry when I am alone. I have my second set of results on thursday, but I dont want to go (but I will cause my wife will kill me if I dont). My mind has convinced me that my first results, good as they were, was a freak and that I am facing bad news and will be dead by christmas. i KNOW its not true, but I cant snap out of this. Sorry folks, got to go now, getting too upset. Stay strong and stay happy.

Rob

Offline Dale Parker

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  • Posts: 266
Re: Just want reassurance
« Reply #11 on: September 28, 2009, 08:23:28 PM »
Hey Rob: There is nothing wrong with having a good cry every now and then. The tears can actually be beneficial to you, as weird as that may seem.  I was almost never (knock on wood) was sick prior to be diagnosed.  I had shingles about 13 months before being diagnosed and some skin rashes that they thought were allergies.  I diagnosed myself and got tested. 7 doctors missed the diagnoses.
  I know about the money problems. Last year I made just under $70,000. I was laid off last September. Until last month I was on Unemployment Insurance which is $18,000 a year . I just got listed as being disabled and now get $1270 per month.  I've had to go bankrupt, move to subsidized housing and go to food banks just to survive. It's been ruff the last 6 months but I have got my money, drugs and housing problems sorted now. Although now life is a lot better at one point I was ready to pack it all in. I went through a really bad night were all I wanted to do was get a hug from my mom and dad. Both my parents passed away in 2003 and are now in heaven. As stupid as it was I had numerous thoughts of how I could get to heaven to get those hugs. Thank god that was a temporary thing. Deep in the back of my mind I knew that I could beat my problems. I am assuming from some of the words you use that you are in the U.K. If you are there are numerous social agencies and aids groups that are there to help you financially.  Don't be embarrassed or afraid to seek their help.
  My doctor gave me a life expectancy, on paper, of two years. I think that was mostly to get me the financial help that I needed. I personally plan on beating that by at least 30 years.  Truth is I firmly believe that "when your number is up your number is up." Neither you or your doctor can know when that time will come. I made up my mind long ago that I'm going to have all the fun I can while living life to it's fullest. I can't do that by crying in my soup.  Just from reading what you wrote I figure that you have the same attitude and outlook on life that I have. You seem to have temporarily misplaced it. That's OK as it happens to us all. Been there done that. I know that tomorrow will be a better day.
Dale
P.S.  In your last post you said for everyone to "stay strong and be happy." All of us on here know that you have the ability to stay strong and be happy as well.
 
Apr 09  CD4 21, CD4/CD8 ratio 0 VL 500,000+
July 09 CD4 158, CD4/CD812% VL 750
Oct 09 CD4 157 CD4/CD8 14% VL UD
Feb 10 CD4 197, CD4/CD8 11% VL UD
May 10  CD4 252 CD4/CD8 12% VL UD
Aug 10 CD4 211 VL UD
Nov 10 CD4 272 CD4/CD8 0.138 VL UD

Offline rabit64

  • Member
  • Posts: 34
Re: Just want reassurance
« Reply #12 on: September 30, 2009, 03:57:35 AM »
Hi folks, Im better now!!! ranf up the clinic yesterday and was told not to be so silly If there had been a problem with my results they would have had me in by now. Feel much better knowing that, and all of your comments helped, thanks for your continued support.

Now to the reason for this post. Despite eating like a horse, I have noticed that my weight has begun dropping again. I thing it is because I am doing a lot more and not for any other reason. Can anyone suggest what I can eat to sustain my weight, or suggest any weight increase supplements that they have found successful. Thanks again folks.

Rob

Offline Dale Parker

  • Member
  • Posts: 266
Re: Just want reassurance
« Reply #13 on: September 30, 2009, 01:18:15 PM »
Hey Rob: I'm glad that you are feeling better. It's amazing how the brain can over rule reason and stress you out when it's supposed to be the voice of reason.
  I dropped about 40LBS when I first got sick but that leveled off after a while. No matter what I did I couldn't gain weight. It took me 3 months to gain 0.2 LBS. Then I got food poisoning and lost my precious 0.2 LBS in a weekend. My weight went right down the toilet. For a while I was eating chocolate sundays every night, lots of butter, and was told not to come back to a few "all you can eat" restaurants. My doctor flipped out as the drugs I'm on (Kaletra and Truvada) can cause high cholesterol. When I told a friend that I had to start eating "healthy" his exact words were "How the fuck are you supposed to gain weight by eating healthy.".
  Your weight loss may be because of the stress that you were putting yourself under and because of your mobility problems.  I plan on joining a health club this week. Mussel is a good way to gain weight. Besides making you look better it improves your health now and can prevent other illnesses in the future. The YMCA in my area has subsidized memberships so it shouldn't cost me that much.  I have to go for an interview to review my income and expenses.
  MOST IMPORTANT: Check with your doctor and see what he says about your weight.  If the loss is due to an underlying medical condition he can help. He can also get you to see a dietitian which should be free. The dietitian can also get you into a subsidized food program if money is tight. With your mobility problems you will be eligible for physiotherapy. Besides being free it will also help out with your specific mobility issues. It will also make sure you do the correct exercises without overdoing it.
Best of luck
Dale
Apr 09  CD4 21, CD4/CD8 ratio 0 VL 500,000+
July 09 CD4 158, CD4/CD812% VL 750
Oct 09 CD4 157 CD4/CD8 14% VL UD
Feb 10 CD4 197, CD4/CD8 11% VL UD
May 10  CD4 252 CD4/CD8 12% VL UD
Aug 10 CD4 211 VL UD
Nov 10 CD4 272 CD4/CD8 0.138 VL UD

Offline Stone

  • Member
  • Posts: 55
Re: Just want reassurance
« Reply #14 on: October 01, 2009, 01:38:37 AM »
There is a medication called Neurontin that can help with the PN in some cases.  It is actually a seizure medicaion that they accicentally found out works well with this.  That being said, some patients report no change at all in their symptoms while others report great improvement.  You could mention it to your doctor and see if it would be right for you

Offline rabit64

  • Member
  • Posts: 34
Re: Just want reassurance
« Reply #15 on: October 01, 2009, 03:06:14 AM »
Thanks for that Stone. I am at the clinic this morning so I will mention it to him. Let you know the outcome

Offline rabit64

  • Member
  • Posts: 34
Re: Just want reassurance
« Reply #16 on: October 01, 2009, 10:18:11 AM »
Hi folks, just got back. My VL has dropped to 320 from 1565, but my CD4 count has dropped from 156 to 128. The doctor is not overly concerned by this because the origional rise was " too spectacular" and this figure is more in line with what he would expect. He agrees that my PN is caused by the virus and not the drugs and has prescribed a vit B supplement and folic acid to see if this will help. All in all a good set of results but I stiil feel so low. Maybe I was expecting too much. He has kept my life prognosis to christmas because the CD4 count is still below 200 and I am still suceptable to opportunistic infection. Ah well, you can't win them all.

Offline Dale Parker

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  • Posts: 266
Re: Just want reassurance
« Reply #17 on: October 01, 2009, 02:54:09 PM »
Hey Rob: Sounds like you won some and made out pretty good.  CD4's from what I hear tend to bounce around a bit. They tell me it's the trend that you have to look at rather than any specific test. Keep a running log of them and put them on a graph if you can. There is a good graph thing on here in the TREATMENT section called Graph Your Labs. Other things like stress, worry and lack of sleep can also lower your CD4 count dramatically . I have even heard that you should have your blood drawn at the same time of day for your CD4's (I don't know how true that is).
 I really wouldn't worry about the Christmas thing. As you know my CD4's (as well as others on here) are well below the 200 count. My doctor gave me 2 years on paper and 5 years verbally. We are at the same risk of O.I's as you. Hopefully you are on meds to prevent the O.I's. Doctors always give the worst case scenario with prognosis. That way if you croak they can't be sued and if you live past the prognosis date they look like heroes.
Keep a stiff upper lip and best of health to you,
Dale
Apr 09  CD4 21, CD4/CD8 ratio 0 VL 500,000+
July 09 CD4 158, CD4/CD812% VL 750
Oct 09 CD4 157 CD4/CD8 14% VL UD
Feb 10 CD4 197, CD4/CD8 11% VL UD
May 10  CD4 252 CD4/CD8 12% VL UD
Aug 10 CD4 211 VL UD
Nov 10 CD4 272 CD4/CD8 0.138 VL UD

Offline rabit64

  • Member
  • Posts: 34
Re: Just want reassurance
« Reply #18 on: October 02, 2009, 04:47:13 PM »
Had to sit back and not "feel" last night, because when I allowed my feelings to take over I started crying. Looking at the situation logically and scientifically, The general trend is up, and its only 3 results. If I wre back teaching, I would tell the kids that 3 results is the barest minimum to base any conclusions on, and here I am going against all I have taught. When I was first diagnosed I was constantly told "your CD4 count is very low, below 200 is the danger zone and you could die". This is the one thing that stuck in my brain, not the overall improvements. I now realise that the VL is the one to deal with first, and sort out the CD4 count afterwards, And heres me getting all worked up over nothing. I now feel well and truly stupid, but then thats nothing new. Thanks for listening and your constant support folks.

Offline dtwpuck

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  • дано мне тело, что мне делать с ним?
Re: Just want reassurance
« Reply #19 on: October 02, 2009, 07:48:20 PM »
Rob...

It's OK to cry and be scared.  It's also not particularly easy to deal with the overwhelming groundsweel of emotions you are feeling right now.   I know it's natural for you to analyze everything and tell yourself "I have to act rationally".  (ie.  I tell myself that three is not enough to base a conclusion ... etc etc)   But, here's an idea:   facing your own mortality is scary, no matter how uncertain you feel about the conclusion.

You cannot look at your own life rationally.  You can't.  It doesn't happen.    You are experiencing a range of normal emotions that we have all gone through.  And, you are on the road to figuring out how to handle them.   But one thing is for certain, feelings can only be felt.  This includes fear.

So, here's the deal.  Being poz pretty much sucks.  There are no sunny horizons full of self actualized fairy dust.    There is no such thing as poz power.   But what there is, what you have, where you can grasp onto something is in the knowledge that you are alive right now.  You will not ever be able to control what happens to you.  You will die someday.  It probably won't be from HIV either, although it certainly could be.  You have right now.  You have your thoughts and feelings.  You have the people you love.  You have the people who love you.   

Now's a good time to rely on those people.  It's also a good time to acknowledge that no one in the world is strong enough to figure out everything themselves.  Seek out the people you know you can trust, people you love, or people you know who care enough about others to help you.    This site is one of those places where you can find people who know what they are talking about or who care enough to write something down to help you. 

If you think you can right now, try doing something you love to do.  Try to think about not figuring out the answer to what's going to happen to you, even though it's tough.   The answer will come when it comes.  And, you will need to find a way to deal with your feelings about that answer.   And, in the end, the one thing you can control is how you feel about and react to something.

Warmest regards,
Scott 
Floating through the void in the caress of two giant pink lobsters named Esmerelda and Keith.

Offline rabit64

  • Member
  • Posts: 34
Re: Just want reassurance
« Reply #20 on: October 10, 2009, 01:26:22 PM »
What the hell id wrong with me? All I have done today is cry, the slightest thing sets me off, and sometimes I just cry for no reason. I can't help thinking that my life is now worthless. Because of the PN I am wheelchair bound when we go out, and I am a hinderance to everyone. They have to push me, shop for me and in general look after me. I know that this is just the "blues" but it is so hard to get out of. I don't want pity, just support and encouragement that life is worth going on with, because seriously at this moment \i don't think it is.

Offline Dale Parker

  • Member
  • Posts: 266
Re: Just want reassurance
« Reply #21 on: October 11, 2009, 12:28:28 AM »
Hey Rob: Nothing is wrong with you. Your life is going to be a real roller coaster for the next while. I think that I would have a worse time than you having to be that dependent on people. Did you have a chance to look at the "Inspirational Video" that I posted a while ago. They moved it to "off topic". Take a look at it and paste it to your desk top (it's on mine).  If this guy can get up every morning and do what he does with a smile on his face and laughter in his heart I'm sure you can too. It ain't going to be easy but your British you can do it.
You know that you can always PM me if you need to chat.

P.S. Don't feel that your a hindrance to people. I have a good friend with a bum leg who has the same "I'm holding you back" attitude. Every time I go out with him I have to slow down. As much as he hates slowing me down I love it. Going out with him makes me "take time to smell the roses" which is something that I have a hard time doing. While out with him I see things that I would normally miss. I'm sure that your friends feel the same way.
Apr 09  CD4 21, CD4/CD8 ratio 0 VL 500,000+
July 09 CD4 158, CD4/CD812% VL 750
Oct 09 CD4 157 CD4/CD8 14% VL UD
Feb 10 CD4 197, CD4/CD8 11% VL UD
May 10  CD4 252 CD4/CD8 12% VL UD
Aug 10 CD4 211 VL UD
Nov 10 CD4 272 CD4/CD8 0.138 VL UD

Offline rabit64

  • Member
  • Posts: 34
Re: Just want reassurance
« Reply #22 on: October 20, 2009, 03:06:27 PM »
Hi folks, hope everyone is well. Thought I'd come to terms with this but people can be so druel. My wife has "friends" who are American baptist preachers. She told them of my status (wish she hadn't, thats my right, not hers). One has beeen preaching at me that God is good, stop taking the meds and let God do his work, and the other shouted that the virus was Gods punishment for my sins. I am in bits and keep crying all of the time. I feel that all the work I have done on acceptance of the HIV, and looking forward to the future has all been blown apart. How can people be so cruel and not care?

Rob

Offline Assurbanipal

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  • Taking a forums break, still see PM's
Re: Just want reassurance
« Reply #23 on: October 20, 2009, 04:37:04 PM »
Well, not much of a Christian, and certainly not a believer in faith healing but you might remind your wife's pals that Jesus didn't discriminate on the basis of the sickness, he just worked on healing.

"And Jesus went about all Galilee, teaching in their synagogues, and preaching the gospel of the kingdom, and healing all manner of sickness and all manner of disease among the people."  Matthew 4:23

Then tell your wife that their presence is making you ill and ask her not to invite them over any more.
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline Dale Parker

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  • Posts: 266
Re: Just want reassurance
« Reply #24 on: October 20, 2009, 10:07:45 PM »
Hey Rob: Sorry to hear about your Baptist moment. I'm not a big believer in religion. I'm pretty sure I believe in God but I'm not putting all my eggs in one basket. I come from a long line of Scottish Baptists. My grandfather was one of 11 children 4 or 5 of whom were Baptist preachers. I just finished reading (read the first 50 pages them skimmed the next 150 pages) my great uncle's autobiography about his life as a preacher. Boring at the best of times. I didn't know that he did wonders for increasing the number of Baptist in Toronto, Montreal and Sault Saint Marie. My great aunt's book of Baptist humor could put you into a very deep coma. I would say LOL but there were no jokes in the book worth laughing about.
I wouldn't put too much into what they are saying. Believe in what you want and ignore those who try to bring you down. Babies are born every hour that have major problems and they didn't have any sins to be punished for.
 I can understand your wife's need to talk to people as it can't be easy for her. She needs to talk things out just as you have, but she should exercise some caution. You should ask your wife to ask your permission before telling people of your condition. Maybe suggest that she join the "Someone I care about has HIV" section on here.
       
Apr 09  CD4 21, CD4/CD8 ratio 0 VL 500,000+
July 09 CD4 158, CD4/CD812% VL 750
Oct 09 CD4 157 CD4/CD8 14% VL UD
Feb 10 CD4 197, CD4/CD8 11% VL UD
May 10  CD4 252 CD4/CD8 12% VL UD
Aug 10 CD4 211 VL UD
Nov 10 CD4 272 CD4/CD8 0.138 VL UD

Offline rabit64

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Re: Just want reassurance
« Reply #25 on: October 21, 2009, 02:12:39 AM »
Hey folks, thanks for that, I do appreciate your comments. Normally I would tell people what I think of theyr comments, but this caught me at a low point. We celebrate our 28th wedding anniversary this friday (23rd), one I thought I would never see, and my mind went into overdrive. Was rhis the last one we would share, is this our last christmas?  I've got a grip on things now, and despite what the doctors say I will still be here next year!!!!  I get up early in the mornings and just sitting here watching the dawn break, and listening to the birds singing makes me appreciate that each day is a gift, and one to enjoyI  am waiting for my  next blood results (12th November) and if everything is fine we are going away, Don't know where to but somewhere warm and dry. Am I OK doing this with a CD4 count below 200 (123)? Some advice would help. Anyway sorry for my ramblings and thanks for listening.

Rob

Offline Assurbanipal

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Re: Just want reassurance
« Reply #26 on: October 21, 2009, 07:51:41 AM »
When you get your next blood results it might be a good idea to discuss your travel plans with your doctor and see what (s)he thinks.  Travel can be exhausting and stressful, even if it is to a "good" place.   

If you do decide to fly, I'd recommend taking morning flights-- they are more likely to take off on time, less likely to be delayed etc. I found that time in airports was just a lot harder on me after getting back to work than it had been before and eventually got to the "morning flights only" as a needed accommodation with my job. 

Time zone changes may also be harder, especially at first.  I had a business trip to England 3 months after going back to work and it was MUCH more difficult than I expected.

Basically, talk to your doctor, but be prepared to give yourself a lot of slack.
Your body will likely come back around over time, but at first you need to adjust your expectations.

(The sun is rising here in a blue sky -- the tress are just turning gold this week -- be well.)
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline rabit64

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Re: Just want reassurance
« Reply #27 on: October 31, 2009, 04:15:59 AM »
I'm frightened, not of dieing, we all have to face that, but of living like this for the rest of my life. The full extent of this virus has hit me and I feel infected and dirty, so dirty I had 7 showers yesterday, as if that would make a difference. I have never had to use condoms in our 27 years of marriage and now I have to start so she doesnt get infected. Every time she turns away from me I feel rejected because of the virus. I cant stand the looks when people have to push me round, help me up from the toilet and do the things I used to do for myself. Tell me it gets easier, because at the moment it cant get worse.

Offline tednlou2

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Re: Just want reassurance
« Reply #28 on: November 19, 2009, 02:21:17 AM »
I'm always curious how people who get down to CD-4 in the single digits never had a clue?  Don't take this the wrong way.  I would think that they would have had strange infections, illnesses, sore throats, pneumonias, etc.  It is amazing how this virus affects everyone differently.  Some feel great till it is almost too late and others get weird illnesses at very high CD-4s. 

I would say you've had for 19 yrs instead of just 2.  If you've had for just 2, you're a fast-progressor.  Also, if you've had for 19 yrs and your wife has remained negative, that is awesome.  I'm sure you didn't use condoms until you found out. 

I wish the best for you.  I'm coming up on my one-year anniversary of my diagnosis and being hospitalized with strep-pneumonia.  I'm already feeling emotional about it.  I feel like I want to go back to my hospital room to just see it now that I'm healthy.  I don't know why I feel the need.  I was there in early December.  I love Christmas--even though I'm an athiest.  Go figure!  It is mostly just a commercial holiday anyway.  Last Christmas wasn't very good. 

About the "Christians", HIV is not God's punishment.  Why would he punish little innocent kids?  What about cancer?  Many a Christian has been inflicted with cancer.  You never hear them say that is God's punishment for some sin.   

Offline mecch

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Re: Just want reassurance
« Reply #29 on: November 19, 2009, 09:37:36 AM »
He has kept my life prognosis to christmas because the CD4 count is still below 200 and I am still suceptable to opportunistic infection. Ah well, you can't win them all.

You mentioned this dire Life Expectancy before but it seems outrageous that a Dr. is telling you that. if you are on HAART there are also drugs to prevent opportunistic infections. Either you are misquoting your Dr., perhaps hearing something wrong, or your Dr. is mean.  I think you should give some thought to speaking to another doctor specifically about this because I don't think you need such a weight hanging over your head if its not true.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline rabit64

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Re: Just want reassurance
« Reply #30 on: November 19, 2009, 09:49:33 AM »
Thank you for your comments, I really do appreciate what you folks say. Just got back from the Hospital with a new set of results. VL 165, CD4 143, %6. Dr says I am doing really well and am 3 months ahead of where he thought I would be, infact he kept calling me Lazerous. I think he is being cautious, because he has refused to change his prognosis, saying that at the moment the test results do not indicate a change, and that my CD4% means that I am still seriously ill and in full blown AIDs. He then scheduled my next appointment for January, shows how much faith he has in medical results. I am pleased with the results but am still confused, am I getting better? Will things improve? I know I feel really well at the moment so I am just making the most of it.

Offline mecch

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Re: Just want reassurance
« Reply #31 on: November 19, 2009, 10:02:53 AM »
Of course you are getting better.
And please get better informed about the life expectancy. I think you may have misunderstood something.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Ann

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Re: Just want reassurance
« Reply #32 on: November 19, 2009, 10:11:08 AM »
Hi Rob,

I don't think I've responded to you before, so apologies for my late welcome to the forums.

I could slap the doctor who gave you that Christmas time prognosis. I can only assume he isn't very experienced with hiv.

Your numbers are going in the right direction and there's no reason to think that you won't continue to improve.

I'm not sure what you mean by his faith in medical results, but if you're worried about having appointments close together, that's not unusual for anyone in the early days of diagnosis, and if you're worried that he didn't schedule you sooner, well, now that you're on meds and improving, January sounds fine to me. I didn't notice if you mentioned it above, but are you also on an antibiotic called Bactrim? You should be.

I'm also going to send you a PM, so be on the lookout for it.

Hang in there, you're going in the right direction and you're getting better.

Ann
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline rabit64

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Re: Just want reassurance
« Reply #33 on: November 19, 2009, 11:43:01 AM »
Hi folks, I think that what I meant was that he had little faith in his prognosis because if it were so, I would not be around in January, so there would be  little point in making an appointment. So far I have been there every 4 weeks, this has been extended to 8 weeks and if things go as he hopes, he is predicting that I would be undetectable by then. All in all it seems like good news to me. Thanks for your PM Ann, I will respond properly when I have shown my wife. She has been tested and is negative, we had a second test three months after the first, and that was also negative, all in all good news. I just need to get my head round all of this, and it is all far too soon, with things moving so quickly, but I will get there.

 


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