POZ Community Forums
Main Forums => Positive Women => Topic started by: Lostgirl on September 12, 2007, 11:12:25 am
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Hi everyone
Well this week has been difficult. First of all on Friday I contacted a new specialist (I still have to get CD4 etc blood work done) but to date have still not got an appointment. I phoned on Monday to find out if my primary care doctor had faxed in my positive results, which had been done, but the nurse said the specialist had not got back to her with a date. She only sees patients two days a week. Now the big question. Does it matter if it could be three more weeks before I get the second blood work done, with another week for results, and another few weeks before I get an appointment if I need meds etc? Although I am newly diagnosed, because I am basing things on my husbands low CD4 levels (129), I guess he (and I) have had HIV for at least 10 years. Would I be wrong to base my results on this?
His specialist has already put him on PCP preventive medicine and my husband is back to the specialist for other blood work results on Monday and I guess he will be on meds asap. I have had a few problems health wise but don't know if it is a) my age (50s); b) my HIV+ status or c) worry over my husbands ill health. (He also had a colonoscopy yesterday (looked all clear) but also an endoscopy and that looks worrying.) Are there any other couples out there, both in the older age group and one of whom is presently ill, not eating and depressed?
Next question is one that is more bothersome than anything. Obviously I am not on any meds yet, but whenever I eat (even just half a sandwich) my stomach gets so bloated that I have to unfasten my trousers (which were loose when I first put them on)! I don't have any discomfort or pain, just bloated! Do any of you ladies suffer from this? I know I am overweight but the trousers do fit first thing in the day! I eat a good diet, lots of fruit, veg and home made meals so can't blame the fast food chains! I also felt I had some bladder problems but upped my water intake and cranberry juice and things seem settled there. There is also the feeling that my periods are about to start (hey girls I haven't had a period for six years!) - would I have some type of infection (no discharge)? I know what you are going to say - Go to the doctor! But the problem is, which one? As some of you may know I have only been once to the doctor my husband found and that was a disaster! Do I find another primary care doctor as well as the specialist? You ladies who live in the States may be able to answer as to what is best to do in this case.
Sorry for so many questions but I need to find my pro-active state again! I am so wrapped up in my hubbies problems this week that I forgot I need medical help too!
Many thanks yet again. Regards to you all.
L. x
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Hey Lost:
I don't have a partner, so I can't answer the questions relating to that. But I wouldn't base what you think your bloodwork results will be on what his are. Yours are probably very different. Not everyone advances at the same rate.
As far as your stomach, it sounds like you're having some GI upset. You do need to get a primary care doctor besides the specialist to take care of things other than the HIV. Do you take any acid reflux meds? Like Zantac or Pepcid? Do you have a lot of gas after you eat, when you feel like your stomach bloats up? Or any heartburn? There are some foods, that if you have GI upset, probably should be avoided, and, unfortunately, some of them include fresh veggies and maybe some fruit. But, I'm not a doctor. So, get a primary care doctor and talk to him about it.
Please don't mess around if you think you've got a bladder infection. I had one about six years ago that put me in a coma. It's good that you're increasing your water intake, but if you think there might be a problem, get it checked out. I lost a little chunk of my life because of that coma.
Good to hear from you again. Hang in there.
Peace-
Betty
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LG
Some questions..
Is your insurance (assuming you have it) directing you to one medical facility vs another?
Is there an HIV clinic affiliated with any hospital near you?
One of the best things I did is make everything, and I mean everything, revolve around the location of my clinic...my ID doc, dentist, eye doc, PCP, everyone is within the same complex and therefore, if necessary, nearly shouting distance.
If you can do this, your life might be slightly easier and you'll be dealing with people who are seasoned infectious disease folks.
Shift your focus to yourself. Use that marvelous proactive state you're in to locomote. Make calls. Build your resource list. Get as many talented women docs/nurses on your team as possible as it makes the variety of chats a little easier and mixes it up. My ID doc and nurse are male. PCP(who acts as OB/GYN for me) and dentist female.
Regarding the impact of timing, I would simply focus on getting seen by people you can trust and respect as swiftly as possible. That will reduce the stress which has a ravaging effect on the adrenals/immune system.
Take lots of notes and list all of your questions and then, ask them.
Love and Light to you.
Em
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Although I am newly diagnosed, because I am basing things on my husbands low CD4 levels (129), I guess he (and I) have had HIV for at least 10 years. Would I be wrong to base my results on this?
Hi LG,
You can't go by your partner's results as there are too many variables. For all you know, you may have not become infected until the past year - exposure to the virus does not necessarily result in transmission. There are several women who post in these forums who have (unwittingly) been with a positive partner for years but yet they did not become infected. You may have become infected the first time you two had unprotected intercourse, or it may have been the thousandth time or anytime in between. You have no way of knowing.
Another variable is how your own body reacts to the virus. I've been positive for over ten years now, but my counts are still in the 400/500 range. The length of infection is not a reliable indicator of what your counts will be like - and visa-versa. Much of it has to do with how each individual's body interacts with the virus.
The ONLY way you're going to know where you are at is to get your labs done. I understand you're having difficulties with this and it may be worth calling the (new) doctor again and explain your situation to the receptionist/nurse. Let them know that you are worried you may be in danger of OIs because it is possible that you have had this for a while. It might also be worth paying them a visit in person, rather than discussing it over the phone. You are talking a fairly long time-line before you can get some results, but if they know the situation, they may be able to get the ball rolling a little quicker.
I agree with Betty that in the meantime, you should see your GP about the other problems you're having. Not everything that happens to us physically as hiv positive people has a direct link to hiv.
Good luck getting in to see the specialist. Hang in there hun.
Ann
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Hi everyone
Many thanks for the great advice. I think the idea of getting all medical personal in one area is great and that is what I would love to do. Unfortunately the area we live in here in Houston is pretty rural and I asked a few women that I knew who their Ob/Gyn was to get an idea of where best to look. They all said the same thing. There are very few really good doctors in this area and I would have to go downtown. That is a round trip of 60/80 miles. So I reckon if I got my primary, my dentist, my ob/gyn etc in the same area its a lot of long trips! Anyway, I will phone the Specialist again if I have not heard today (she sees patients Tuesday and Thursday). I will spend this morning looking at the list of primary care doctors in my area (I am lucky with Insurance as it is, apparently, one of the best in the US) and carefully choose another as there is no way in hell I am going back to my husband's clinic! My bladder problems seem to have cleared up (crossed fingers) but it will be one of the first things I mention when I get an appointment.
Thanks for the advice re CD4 levels and progression rates. I am all a bit new to this and have been researching but there seems to be so much to learn that I reckon I miss half the stuff first time round! I guess I have, wrongly, assumed that if my husband was HIV+ and we had such a good sex life that I was bound to have picked it up from him ages ago but maybe that isn't the case.
The thing about food causing the bloated stomach is probably right. I took a note this week of what I was eating when I had the stomach bloating and bread and pasta came top of the list. Bread is something I don't normally eat but when my husband isn't eating I tend just to make a sandwich for myself, or soup and bread type of thing. Yesterday I ate salad and a small amount of homemade stew - no bread - and didn't have any problems last night! I also cut back the amount of fruit with just a small piece of apple in the salad. I was eating a lot of fruit and veg. I'll keep a record of how things pan out eating this way and see how I react. Thanks for the pointers.
Stress does knock me out and make me feel ill. I have so much more energy when I think and act positive. At the moment it is not being HIV+ that stresses me but my husband's ill health. We have a week before the results of his biopsy come in and I try hard not to think about it but he is still having difficulty eating so it puts a strain on me. We were sitting out on the porch last night (no neighbours around and the house next door is empty) and I wanted to talk about the HIV, how he felt etc etc but he was so uneasy as he hates the idea that someone might overhear. Even when we are inside he just cannot seem to speak about it. He says it is because he feels so ashamed and guilty but I need to talk things over at times. Bless you all here! I told him I was using the Forum for support but that I didn't mention him by name etc so he was quite happy that I had found somewhere to talk.
How do the others out there cope when they decide to tell no-one, work, friends etc? I don't have a problem with my status (if people reject me because of it, that's their loss) but I worry (needlessly?) about visiting friends with babies, small kids etc as I feel they have a right to know. Do they? I have always been such an honest person that keeping it from close friends and family feels disloyal to them How do you all cope? I know that really the chance of them catching the virus are neglible as I do not intend to have sex with them or bleed all over them!! But what should I be aware of?
Gosh, I have gone on again! Sorry ladies! You are all angels for listening!
Take care and lots of hugs to you all
L.
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Hi again LG,
There is absolutely NO reason why you would have to tell any of your friends because of the children. As you say, you're not planning on having sex with them! Even the bleeding thing - it would only be a danger if (for instance) you AND the child both were cut DEEPLY at the same time and you bled directly into the child's wound. That's hardly going to happen. Hiv is NOT easily transmitted and it is not transmitted while in normal, everyday contact with others. Many of us here have raised hiv negative children with no problems whatsoever, me included.
In fact, while you're no risk to them, they can be a risk to you. Children often have colds and other bugs that you could do without picking up. I always avoid other people's homes and children when there's an illness about.
I have to travel a long way to my clinic - in fact I have to fly as I live on an island and my clinic is in Liverpool on the mainland. We have a clinic on the island, but we don't have an hiv specialist here full time, they fly one in once a month and (I'm not going to mince words here) he's crap.
I do have a GP in the town where I live and he knows my status, but I only go to him for run-of-the-mill problems. Most things, including dental, I go to Liverpool for. It's a pain in the backside to not have hiv resources closer to home, but at the end of the day it's well worth having to travel to receive the best care available to me. The days I have clinic appointments I leave the house at 6:15am and I'm not back home until 8:30pm. It's a long day, but it's do-able.
So what I'm trying to say is - don't be afraid to travel for your hiv care. It's far more important that you are with a competent doctor you feel comfortable with and can talk to, than it is to have the convenience of physical proximity to the clinic.
I'm glad you found us - men often find it difficult to talk about these things and you need support and an outlet for your thoughts. He may come around in time, but you need something now.
Good luck with the clinic today. Hope you get somewhere with them. If nothing else, hopefully they can schedule your blood tests now, so the information is ready for when she can fit you in with an appointment.
Ann
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Ann, thanks so much for making me realise that distance isn't an issue when you can get the best care by traveling. You certainly manage it, so can I! This morning I received the call from the ID Specialist that I 'choose' and have an appointment for 2nd October. Two weeks isn't too bad. I know I will have to wait another few weeks for any results etc but my reckoning is that if my hubby hadn't gone and got tested when he did, and he could have waited long enough, I would still be in the dark by October cos I had no reason to go to the GP and get tested! In the two weeks I am waiting for my appointment with her, I am making appointments with a Ob/Gyn, a new GP, a dentist and an optician! Hey, I'm going to be a new woman!
I have also promised myself that should I not like any of them, or not feel comfortable, I will move on and try another. Previously I was a bit of a mousy creature and would let professionals walk all over me. Now I realise they are just like you and I - put their pants on one leg at a time, eat the wrong things, smoke, drink, fart and have personal issues! Most of the time they are in the dark about medical problems just as much as you are! (Oh god, did I just say that when I am about to trust my life to a complete stranger???!) Ignore that last sentence! If I wasn't too old, I would take up medicine for a career and specialise in Infectious Diseases!
Thanks again for the great advice.
Hugs L.
ps you are so right about kids being more of a danger to me! I will make a point of staying well clear of them from now on!! One of my friend's kids once 'gave' me shingles!
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Hey Lost:
I am so glad you feel comfortable here. The women here are the best (and so are the guys). About your husband....... he could very well feel guilty because of you being positive, that he's not ready to deal with all that he feels because of that yet. He needs to, but I always say people do things in their own time. Do you have a therapist? I don't remember reading that you do. I would suggest getting one. I have a good therapist. He comes to my apartment for our visits. I've been seeing him since '91, and he and his wife are my granddaughter's godparents. I know that's unusual, some will say even unethical, but shit happens.
I'm glad your bladder calmed down. I would still have it checked out though. Keep drinking that water! I drink tons of water every day and have noticed since I quit smoking, my soda consumption has gone down dramatically! Which is probably a good thing, because I'm prone to bladder troubles.
I do hope your appointment goes well. Glad you'll be able to get your bloodwork done soon. Don't be afraid to travel; like Ann said, good care is invaluable. My doc runs the clinic at the Center for the Homeless in South Bend, IN. He's my primary care and HIV doc. He specializes in HIV and diabetes, so I am fortunate there, because I'm diabetic also. Some people don't like to go see him at his location, but it doesn't bother me at all. Good doctors are irreplaceable.
Keep us informed as to how you're doing and feel free to post in other threads!
Peace~
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Good to hear that things are sort of shaping up..l have been positive for six years now and have always travelled for my treatments and blood work with no issues. l have this bond with the clinic l go to, l think its mainly the manner and professionalism that they have conducted towards people like me. My doc is quite good and listens to me. which is a good and rare thing to find and maybe this is why l would rather travel. My friend always complains of indecency and lack of confidentiality at her clinic, she is now looking for some where to go, that is more human.
with regards to your husband give him time. He will come around and be able to open up, maybe to you and other people. You will be surprised!!, l have been positive for six years and nobody knows except my friend l met on this site and my boyfriend also from this site. l have never thought of telling anyone as long as l don't share anything intimate with them., they have no right to know anything about my personal life.
keep away from these little brats as much as possible, my son is six and always brings these bugs that l catch and suffer from every winter. last time there was an outbreak of ringworms at his school/nursery l caught them, my daughter thought it was funny and she calls me a sickling(not bothered).
Good Luck!!!!!