HIV/AIDS Care Guide - Visiting Nurse Service of New York
Contents
1. Table of contents Introduction bd ions eskri e raar EAA E RNS 1 Understanding HIV 5 ctacos sna ie ai agnaten i a 24 2 Preventing the Transmission of HIV 0 3 Taking Care of Your Health y1c ccepctetnetsvtn ken armed Axed aaiiegeedy 8 Concerns for WOME sys 3 on iecdetectqntudeaeoneneianierenersewewerereinn 14 G tting Pregnant enrii a iiaa AaS 17 If You Have Children scaer esiisasid a yw annie 20 Medications siena ire n E E ENERE 21 Alcohol and DP Use sesi enigne na en E T S 23 PCPS Cafe oeira a a a S 25 Pets in the HOM Gesie inian Gena a EE ree 26 Food and Water Safety renrerscnsensmissmeysierininnae ea 27 Nutrition Overweight 4 0 05ccs2iestiaedioonetenssniecasmnnad casgernereaceninaiase 29 Nutrition Underweight cicero rreren rererere ren 31 Diart heiress en er ee r E R per ee ere ere 34 Nausea and Vomiting hs nied us eevee eee 36 C nstipali fi cree gudhgyediessnpshedcaetabiaghher eee EEO RE 37 Fafi pUe eienenn eae E E EE E E EA ENE 38 Shortness of Breathe cseversncrs ese sneaks E EEE a EE 44 Chronic Cough resnie oirein uE esea E EE EEEE ENEE 49 Relieving Pai Niseronienrseiie int E E E 50 Weakness in Arms or Legs rr rrr rrrerrerre ren 53 Fever secrete tate einen E E E a Ra S EE 54 MVision Problems ssisisrcrieeni anand O EE aE oan 56 Mouth Probl m raeino E TEE EEN 57 Skin Problems siccin iain iso aaaea a aa 58 Sleep Problem acsee a E eee 62 Problems with Memory and Concentration 0 0 0 00 64 Coping w2. When the meal size is smaller it takes less energy to eat it C Exercise can help you build endurance and decrease fatigue Ask your health care practitioner which exercise is best for you Exercise improves how well your body uses oxygen You don t have to jog or join a gym Simple exercises include e Walking up and down stairs even if you start with only two or three steps Try to increase the number of steps each time you do it e Sitting in a chair and holding a can of food in each hand while extending and flexing your arm muscles Exercise can help you build endurance and decrease fatigue 39 40 Fatigue Rating Scale A self rating scale can help you decide how much energy you have for your daily activities Use the Fatigue Rating Scale to help judge how tired you feel 0 means that you feel great and 10 means you are too tired to move For example on a day when you think your fatigue rates a 2 you will probably be able to do more than on a day you rate your fatigue as an 8 RATING SCALE You can learn to cope with fatigue Try to identify what makes you tired Do you feel tired when you exercise Feeling emotional or having anxiety can cause it Do you feel tired all the time Maybe youre not sure what triggers your fatigue You can identify what makes you tired using the chart below Activity How rate my fatigue fill in a number from 0 10 me fF Bathing
3. Medications The importance of HIV medications A Before you decide to take HIV medications you may want to look at the pros and cons Write them down on paper This can help you decide if you are ready to start taking medications B HIV medications attack the virus in your body They decrease the amount of virus in your blood the viral load This may help your T cell count go up Remember the higher your T cell count the better your body is able to fight off infection C Follow the directions for each medication carefully Some must be taken with food and some on an empty stomach Always follow the instructions your prescribing practitioner gives you or the drug may not be absorbed from your stomach into your bloodstream e Ifyou experience side effects tell your health care provider There are ways to control side effects This booklet has information on how to manage some side effects e HIV medications interact with many other drugs including non prescription drugs herbal or natural remedies and recreational or street drugs Check with your prescribing practitioner or the pharmacist before taking any new medications 21 Medications Adherence Taking medications as prescribed Tips to help you remember to take your medications e Ask your pharmacist about blister packs Blister packs have all your pills pre poured by the time you need to take them If you decide not to take the medications as prescribed by your p
4. Concerns for Women HIV infected women are also more prone to develop Pelvic Inflammatory Disease also know as PID PID is a severe infection of the female reproductive organs A The signs and symptoms include Immediate medical treatment is needed if you have any of the above symptoms C The risk of getting PID can be reduced if you e Always use a latex or polyurethane condom for vaginal sex e Avoid using an intrauterine device IUD There is a greater risk of PID in women who use IUDs V Women with HIV have a higher rate of abnormal cells on the cervix and cervical cancer than other women Invasive advanced cervical cancer is preventable A Itis very important that you have a vaginal exam and Pap smear at least once a year Some types of vaginal warts increase the risk of an abnormal Pap smear and cervical cancer Health care providers often recommend that HIV infected women get a Pap smear every six months V Women Over 50 B Signs and symptoms that may indicate cervical cancer include Blood tinged and or foul smelling vaginal discharge Use condoms even though pregnancy may no longer be a concern The lining of the vaginal walls are thinner and are more likely to tear during intercourse Tears in the vaginal wall results in increasing the chance of being re infected with HIV and acquiring other sexually transmitted infections Getting Pregnant ry Moy Getting Pr
5. If you re interested in organizations that help people with vision problems you can contact the Jewish Guild for the Blind at 212 769 6200 and also Lighthouse International at 212 821 9200 or toll free 888 222 9320 IIl If light bothers your eyes you can A Wear sunglasses when you go outside B Keep the lights dim in your home C Wear a hat with a brim like a baseball cap when you are outside D Keep your television at a low level of brightness Mouth Problems Review basic mouth care See page 25 Section Il Thrush is caused by a fungus called candida albicans There are medications to treat thrush Ask your health care provider which is best for you To prevent and control thrush A Eat 1 to 2 containers of yogurt daily Yogurt may prevent this fungus from overgrowing The label should read Lactobacillus acidophilus or L acidophilus B Ifyou don t like yogurt you can get lactobacillus acidophilus capsules at any health food store C Rinse your mouth at least three times a day with homemade mouth wash You can make this by e Adding one half teaspoon of salt and one half teaspoon of baking soda to one quart of warm water change this solution daily _ e After using the solution rinse your mouth with cool water D Some people find that using apple cider vinegar diluted with water helps to prevent or get rid of thrush IV For A B C mouth pain Use straws to dr
6. are having trouble remembering to take your medication 1 Use a pill box medication reminder alarm watch or cell phone alarm to help you keep track of when to take your medications 2 Keep your medicines where you can see them during the day so you don t forget to take them 3 Ifpossible ask for help from family or friends G Lack of sleep may contribute to memory loss If you are having difficulty sleeping see page 62 on Sleep Problems Things to avoid include A Letting people around you do everything for you B Sitting around the house all day in your pajamas C Isolating yourself from friends and family D Notexercising 65 66 Coping with Illness and Depression If you are having problems coping with your illness let your health care provider know Worrying all the time can cause fatigue weight loss and other problems including depression Depression can come and go or it may get worse Sometimes it lasts for a while Symptoms of depression can include A Loss of interest in things you used to enjoy B Feeling sad blue or down in the dumps C Feeling worthless or guilty D Problems concentrating thinking remembering or making decisions E Loss of energy or feeling tired all the time F Increase or decrease in appetite G Trouble sleeping H Avoiding contact with family and friends I Feeling hopeless or helpless J Thoughts of suicide or death Things you can do to prevent or cope with de
7. cell count and are taking e Irregular periods es HIV medications Difference in how often Difference in how long C It is important to try to find the cause of any It may be lighter or heavier e Missed periods menstrual cycle with your health care provider menstrual problems so discuss any changes in your TSE asc O aetteieeae D Remember to get a Pap test every 6 months the get a Pap y e Spotting between periods year after your HIV diagnosis If both are normal you should have a Pap every year after that Other problems that can occur Vaginal candidiasis also called yeast infection is a very common problem in HIV infected women The problem can occur or get worse when you take antibiotics A The signs and symptoms include ee eiyeactennenans Note Always report any vaginal problems to e A yellowish white discharge gt your health care provider The problem could ee ey e be another type of infection e Try eating at least 8 ounces of yogurt every day The label on the container must say it contains lactobacillus acidophilus or L acidophilus If you don t like yogurt you can buy acidophilus capsules at a health food store e Avoid tight fitting underwear and pantyhose Try to wear cotton underwear or underwear with a cotton crotch e Anti fungal creams and or vaginal suppositories prescribed by a health care practitioner or purchased over the counter at a drugstore Taking Care of Your Health
8. or a shopping mall Use what is called pursed lip breathing to ease your shortness of breath Pucker or purse your lips to do this Imagine yourself smelling flowers as you breathe in through your nose slowly to a count of two and blowing out candles as you breathe out to a count of four INHALE Pursed Lip Breathing Try this way of breathing and you will probably notice yourself catching your breath This can help you cope with the fear and may help calm you 44 Shortness of Breath It is not unusual to feel frustrated or anxious when you are short of breath It may prevent you from doing even simple tasks Learning new ways to relax can be helpful Try these relaxation and deep breathing exercises A Close your eyes and think about your favorite place It should be a place that makes you feel good inside like a beach or out in the country B Breathe in and out slowly and deeply C Think about relaxing You can say to yourself I am relaxing I can feel my whole body relaxing D Focus on breathing slowly and evenly If it helps you can count while you breathe air in one two three and then air out one two three You can do this for a few minutes or as long as you re comfortable E Listen to relaxing music or do any other activity you enjoy Note Reporting shortness of breath to your health care provider is important especially if it prevents you from doing daily activities If it bec
9. sore Pressure sore ex a mattress C Ifyou spend all or most of the day in bed e Reposition your body at least every 2 hours For example if you are on your right side at 8 am switch to your left side at 10 am and at 12 noon lay on your back This will help prevent bedsores e Use pillows or a folded cotton towel to keep the bony parts of your body from touching like between your knees e Keep your heels off the bed so you don t get sores on the heels of your feet Put a pillow under your ankles to keep your heels off the bed e Ifsomeone gives you a backrub tell them not to massage areas of skin over bony areas that are red This is not good for your skin e When you are in bed do not raise the head of the bed higher than 2 feet to prevent sliding down in bed The exception is when you eat then you should be sitting up e Good nutrition is very important to keep your skin in good shape If you are not eating enough protein you may begin to develop skin problems 61 62 Sleep Problems To help you sleep at night consider the following A B During the day try not to lie in bed to watch TV or read Save the bed for sleeping in at night Try to exercise every day If you watch TV before going to bed try not to watch shows that excite or upset you They may be entertaining but falling asleep afterwards might be difficult Keep a urinal or a bedpan by the bed so you don t have to go all the wa
10. that can help with this Ask your health care provider for assistance Getting Pregnant lI If you are already pregnant A Make sure you and your baby get prenatal care B Get tested for syphilis and other sexually transmitted diseases to help prevent passing them on to your baby C Ask your doctor about taking HIV medication including AZT during pregnancy This medication has been shown to reduce the risk of your baby being infected with HIV IV If you want to avoid getting pregnant A Always use a condom B If you choose to use any other form of birth control you need to use a condom to prevent the exchange of body fluids between you and your partner even if he also has HIV These include V If you want to get more information about these matters talk to your health care provider and he she will get the information to you If you have children A Who will take care of your children if you go to the hospital B Have you planned for guardianship person you choose to care for your children if you are unable to C Are any of your children infected with HIV D Do your children need to be tested for HIV E Do your children know about your HIV diagnosis F Do you or your children need help in coping with your diagnosis Remember teenagers often express anger when they are really fearful If you need information or want help with these matters your health care provider can refer you to community based agencies
11. throbbing and is usually felt in one place With nerve pain you may feel numbness burning shooting itching stinging or tingling like pins and needles RATING SCALE 0 10 No Pain at all Pain has been worse but it has also been better Worst Pain Possible Relieving Pain Talk to your health care provider about medications you have taken to relieve pain Make sure your health care provider knows all the medications you take prescribed and over the counter including any herbs or other remedies What You Can Do To Relieve Pain With Medication e Take your pain medication on a scheduled basis Do not wait until you are in agony to try to relieve your pain If you wait until you re in extreme pain the medication doesn t work as well Remember e ee el ee ELS ae ee eee ee eRe nee e Keep your health care practitioner informed about how much relief you get It may take several tries to a manage your pain This is not unusual nnn e Keep a diary of your pain rating and how you describe it Note how it changes as your pain is relieved Include the date time name and amount of any medication you take This helps you and your provider decide how well your medicine is working It is also a way for you to show your health care ec a a a eta eS cee u i Certain kinds of pain may be relieved by medications that are not usually known as pain relievers Even some anti depressants relieve pain so don t be surprised if you
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13. BR ses Going up stairs of steps es Going to see doctor Plan your activities and rest periods For example eat breakfast first and then allow for a rest period before you wash or get dressed Build in rest periods between activities Plan to do the most important things first so that you have the energy to do them Depression and anxiety may affect how tired you feel Speak with your health care provider or social worker if you are sad and unhappy often Fatigue Tiredness You can identify times to schedule rest and activity using the chart below Eat breakfast Choose a way to rest Sit in a comfortable chair read watch TV listen to music Shower Rest again with whatever relaxes you Get dressed Sit down and have a snack Go for a walk Practice Relaxation and Deep Breathing Exercises This is just an example You can make your own personal Daily Activity and Rest Schedule by filling in the chart below Your Own Personal Activities and Rest Schedule Activity Rest Period 41 42 If you are not sleeping well A Keep a log on how well you sleep Note what helps you sleep better and also what interferes with your sleep B Ask your health care practitioner for ideas or medications to help you rest C Avoid caffeine near bedtime Try herbal non caffeinated tea like chamomile D Try not to stay in bed for long periods Your muscles may get weak and you may have trouble sleep
14. Keep your cats indoors so they don t get infections from other animals B Keep your dog on a leash when you go outdoors for the same reason C Don t feed your pets raw meat It may have germs and make both of you sick To keep yourself healthy A If your T cells are under 200 have someone else clean up after your pets whenever possible B Ifyou have to clean the litter box bird cage fish tank or clean up after turtles lizards or snakes wear disposable latex gloves and a mask Wash your hands immediately afterwards C When you pick up after your dog wash your hands when you get home D Avoid letting your pet lick your mouth or any open cuts or wounds Don t let pets sit on your pillows E Always wash your hands after handling your pets Food and Water Safety Food and water can carry germs that may cause serious infections in people living with HIV especially when T cells drop below 200 Following some basic guidelines may help prevent these infections we Boiling is the best and least expensive way to make sure your drinking water is safe WATER SAFETY Even though the water in New York City has chlorine to purify it some germs are not killed by chlorine For most people New York City tap water is safe to drink But if you have HIV you should follow the guidelines below because some germs are not killed by the chlorine the city adds To avoid infection from water A Most water filters you can buy at th
15. certain pharmacies Don t share your needles syringes cookers or other works with anyone else Remember to dispose of your needles and works in proper containers so no one gets stuck You can use a designated sharps container from the hospital or a thick plastic laundry soap container with a handle Remember to label the container SHARPS to avoid confusion and injury E Ifyou can t get to the needle exchange or the pharmacy cleaning your works is another option New clean needles are the safest Here is how to clean your injection equipment e Rinse the needle and syringe with cold water several times hot water will cause blood to clot making it harder to remove If you re using a detachable needle and syringe you might want to take the equipment apart to clean it more thoroughly Be sure to discard the water you use to rinse the equipment e Flush the needle and syringe with undiluted household bleach Be sure to fill the syringe all the way up Keep the bleach in the syringe for a full two minutes while shaking it Discard the bleach e Thoroughly rinse the needle and syringe with clean cold water to remove any remaining bleach Discard the water VI HIV can be transmitted from mother to child through pregnancy during delivery and through breastfeeding If you are pregnant or thinking of getting pregnant read worksheet 3 Getting Pregnant VII If someone is caring for you in the home make sure the
16. coococoosocoooosococococooscocoocococosococococooscococococosocosososcoccoocococococococosocoocooococcccocococococoocoosoocooooo If you have Diabetes Kidney Disease and or Heart Disease you should go to the websites listed below rather than using the information on this page www diabetes guide org american diabetes association diet htm www heart org HEARTORG GettingHealthy Diet and Lifestyle recommendations_UCM_305855_Article jsp Most of your diet should be made up of foods that are good for you You probably don t include food when you think of the things you do to keep yourself healthy but it s an important part of your plan to stay well Every day you should try to eat some of the following A Fresh fruit It doesn t matter which you select They re all good for you B Vegetables Either fresh or frozen Try to avoid canned as they often are high in sodium which could increase your blood pressure C Nuts and peanut butter avoid nuts that are heavily salted D Lean beef lamb pork fish chicken turkey All are fine as long as they aren t fried and you cut away the fat before cooking You can bake broil roast or boil them E Grains whole wheat bread rice barley quinoa grits oatmeal etc F Low fat dairy products 1 milk low fat yogurt cottage cheese reduced fat cheeses G Get in the habit of taking a multi vitamin daily at the end of your largest meal 29 30 Nutrition Overweight Many
17. counter remedies such as psyllium husk fiber Metamucil can help Remember to drink a full 8 oz glass of fluid with psyllium fiber Note Psyllium fiber should NOT be taken at the same time as your prescribed medications It should be taken at least two hours before or two hours after taking medications e Add high fiber food to your diet Fruits and vegetables whole grain bread cereal nuts beans and dried peas all have lots of fiber in them e Remember to drink at least 8 glasses of fluid each day Sometimes drinking warm or hot liquids can help Fatigue Tiredness Do you find yourself feeling tired or exhausted frequently If you do talk to your health care practitioner There may be ways to treat this When your re tired it is helpful to A Stop what you are doing and rest until you feel more energetic B Plan your activities wisely and rest in between Do the important activities first It is a good idea to plan only one activity on days that you have medical appointments C Take walks in areas where you know there are benches to rest such as a park or shopping mall 38 Fatigue Tiredness To conserve energy you can try to A Increase the amount of sleep you get even with cat naps If you have insomnia do not take a nap within 6 hours of bedtime B Eat healthy foods Food provides fuel for energy e Small frequent meals are a better choice than three large heavy meals especially if you feel tired
18. ctitioner Let them know whether your pain is being relieved Remember you have the right to pain relief e e SCHOSSHSHSHSHSHSHSHSSHSHHSHSHHSHSHHSHEHSHSHHSHSHEHSHSHHSHSHSHEHESHHSHHHSHHHSHHSSEHSHESHSHHSHHHCOHSHHSEHOHHSHOSHSHSOHGEEHSSEHEOSGESEHHBEEEEF Weakness in Arms or Legs Weakness in your arms may prevent you from carrying out your daily activities Weakness in your legs can cause difficulty walking and can be frightening If you develop weakness in either your arms or legs let your health care practitioner know They may want to have a physical therapist evaluate your situation Things you can do to make your home safe include A Remove area or throw rugs Even if you nail them down you could still trip over them B Use a tray to carry hot liquids or food from the stove or microwave to the table Only fill containers halfway to avoid spilling and possibly burning yourself If possible ask someone else to bring your food to the table C Never smoke in bed This is very dangerous If you start a fire you may be too weak to get away quickly enough If you have areas of decreased sensation in your arms or legs be careful and A Protect them by not wearing tight fitting clothes or shoes Check inside of shoes before putting them on B Avoid sitting too close to radiators or heaters C Avoid using heating pads Ask your health care provider about getting assistive devices such as A A cane or walker B A shower chair C Grab ba
19. e a dental dam plastic wrap can protect you however do not use the microwaveable kind because it has tiny holes in it If you do have oral sex without a condom or a dental dam avoid letting someone have an orgasm cum in your mouth If you have any openings or cuts in your mouth avoid oral sex until your mouth has healed Dry kissing Even open mouth deep kissing French kissing is not likely to transmit HIV as long as there are no open sores or cuts in either person s mouth Avoid brushing teeth flossing or using strong mouthwash before deep kissing or oral sex Mouthwash kills germs but it also kills some of the protection in your mouth Because you might also have cuts or openings in your mouth after seeing the dentist avoid deep kissing or oral sex until your mouth is healed Erotic books videos or sex toys Sharing sex toys with a partner is not considered safe If you do share toys make sure to wash the toys thoroughly before sharing and cover with a new condom for each person IV Abstinence no sex is a sure way of not transmitting HIV Preventing the Transmission of HIV V HIV is transmitted through sharing needles to inject drugs If you do inject drugs A Use anew sterile syringe obtained from a reliable source for each injection B Ask your primary care provider for information about Needle Exchange programs Needle Exchange programs will give you free clean needles C You can also buy clean needles at
20. e store do not filter out all the germs Boiling is the best and least expensive way to make sure your drinking water is safe B At home use boiled water for drinking making ice cubes and cleaning fruits and vegetables Boiling water for 1 minute will kill germs This may sound like a lot of extra work Try getting into the habit of boiling water each morning in a large pot Keep the lid on while boiling and while it s cooling so it doesn t evaporate If you notice a taste to the water after boiling you can pour it through a regular water filter like Brita or Pur to make it taste better If you use a filter make sure you replace it as directed by the manufacturer Remember make ice cubes with this as well C When you are away from home especially out of the United States drink bottled water Soft drinks in cans and bottles are safe D Soft drinks from a fountain in restaurants or bars are made with water that hasn t been boiled Avoid ordering these The same is true for ice you don t make at home 27 28 Food and Water Safety re Eat and drink only pasteurized juices and dairy products Almost everything sold in the grocery store will be OK Cook meats fish and poultry thoroughly They should be cooked until there is no pink Use a meat thermometer to ensure an internal temperature of 180 degrees for poultry and stuffed meats and 170 degrees for all other meats When barbecuing always precook m
21. eat first Remember to wash your hands immediately after handling raw meat Have 2 cutting boards one for meat chicken and fish the other for everything else Wash utensils used for uncooked meats before using on other foods Do not eat raw or partially cooked eggs Wash all fruits and vegetables thoroughly before eating If T cells are below 200 use boiled water Peeling the skin also helps make them safer FOOD SAFETY To avoid infection from food l When using a microwave follow directions carefully especially standing time which helps to heat food evenly J Ifyou have cuts or sores on your hands wear disposable latex gloves when handling food K Refrigerate leftover food right after finishing your meal If you have meals delivered be sure to refrigerate all food that is not eaten right away L When food shopping e Place raw meat fish and poultry in plastic bags to prevent blood and juices from leaking onto other foods e Read expiration dates to prevent buying foods that are out of date e Refrigerate perishables as soon as you get home from the store e Avoid purchasing prepared foods if you do not know if it is fresh or how it is made for example salad or hot foods from a deli counter Nutrition Overweight et PPPS OOOH SOE EOE DESEO EEE OESETESESESEOE SEE E OEE EEESESEESEEE SEES OHSS SESS SSSOSSOSE SEES OE ESSESESESSSESEEE DEEDES ESESSSESEEEEEEEEEOE EEG seccocoo
22. ed with Acquired Immune Deficiency Syndrome AIDS rd 4 HIV causes overstimulation of the immune system which then becomes weakened or burned out This may lead to damage to the cells of the heart liver kidney and bone Your primary care provider will monitor your health so if you develop any of these conditions you can be treated Being HIV positive means that you can give the HIV infection to someone else through unprotected unsafe sex or by sharing needles or works if you use drugs HIV can also be transmitted from a mother to her child during pregnancy during delivery or after her child is born through breast feeding Preventing the Transmission of HIV HIV is spread through blood semen vaginal secretions breast milk and any body fluids that contain blood HIV transmission can happen through unprotected anal vaginal or oral sex Unprotected sex is sex without a barrier such as a condom HIV can also be spread by direct exposure to blood like sharing needles to inject drugs Infected women who become pregnant may also infect their babies HIV is spread through unprotected unsafe sex Some important reasons for practicing safer sex include A So you don t get an infection from your sex partner Even if your sex partner is HIV positive by not practicing safer sex you can give each other additional infections including drug resistant HIV This could make it more difficult to treat
23. egnant The decision whether or not to have a child belongs to you If you are considering getting pregnant it s important to speak with your health care provider Your HIV medications may need to be changed If you are thinking about having a child there are some very important issues to consider including A Waiting until your immune system is at its strongest Your T cell count should be as high as possible and your viral load as low as possible This increases the chances of having a healthy baby Remember taking your HIV medications at the same time every day may help you increase your T cell count and lower your viral load B If your T cell count is low there is a possibility you may get sick during your pregnancy Be sure to speak to your health care provider to determine the best medication to use while you are pregnant C Your baby may have to take HIV medications for about 6 weeks after birth even if he she does not have HIV D Most babies in the United States born to HIV infected mothers are not HIV but a few are It may take up to six months after the baby is born to know if he or she is infected E Ifyou are using drugs or alcohol you may want to seek treatment as this could harm your unborn baby F Who will take care of the baby if you or the father or both of you get sick G Ifyou and or the father die who will become the guardian This will require legal assistance There are community based organizations
24. er is more sensitive and can be more easily damaged by alcohol and drug use C In order for your HIV medications to be effective it s important to take them at the same time every day Sometimes drinking alcohol can make you forget to take them If you can t stop drinking try to cut down If you feel your drinking is a problem ask your health care provider about getting help 23 24 Alcohol and Drug Use Using drugs can be a problem because A Intravenous IV use of drugs such as heroin speed or cocaine can cause liver heart and kidney damage It can greatly increase your risk of getting infections B Smoking and or snorting cocaine crack or speed can damage your lips mouth nose heart and lungs It can also lead to frequent infections Cocaine use can actually raise your viral load C Street drugs can interfere with the effectiveness of your HIV medications They can also make you forget to take them on schedule If you would like to talk with someone about your drug use there are many community based agencies that may be able to help you Ask your health care provider for more information lI If you do use drugs and or drink alcohol please A Make sure to dispose of any injection equipment in a proper sharps container so no one gets stuck with a used needle B Do not ask any home care staff to buy you drugs or alcohol Personal Care Skin Care Your skin is a very important protection against in
25. fection Proper care can prevent problems Things you can do to care for your skin include A Shower with warm water Hot water can dry out your skin Ask your health care provider about getting a shower seat so you can sit down and relax during the shower B Wash with a moisturizing soap such as Dove Caress or Aveeno C Pat your skin dry with a towel rather than rubbing D Use body creams or lotions while your skin is still damp to keep moisture in the skin Vaseline works well and is inexpensive E Keep your home humid Use a humidifier during the winter Remember to clean it as often as the manual indicates If you don t have a humidifier keep a pot of water on or near the radiators Change the water every day and clean the pot F Ifyou sweat a lot wear cotton underwear G Wash your hands well with soap and water Mouth Care Mouth care is very important but should not be done before sex because it can reduce the normal protection found in the mouth Things you can do to care for your mouth include A Clean your mouth after meals and before going to bed B Clean your mouth in front of a mirror so you can see what condition it s in C Use a soft toothbrush and brush gently floss daily D Avoid very strong commercial mouthwashes that make your mouth burn E See a dentist yearly 25 26 Pets in the Home Pets are very important and may be a comfort to you Keep your pet healthy by doing the following A
26. foods have empty calories which means that it s easy to gain weight when you eat them AND they do not help your body do its job You should limit these foods and have them as treats on special occasions or once or twice a week They are A Fried foods like fried chicken French fries F Cakes and cookies Did you know that half of most Chinese food doughnuts the calories in a sweet roll come from fat B Soda except diet soda G The U S government will help you figure out how C Snack foods like potato chips corn chips Cheetos many empty calories a food has if you go etc Pretzels are O K to this website www choosemyplate gov food groups D Fatty meats bacon sausage salami emptycalories_count_table html E High fat dairy products most cheeses ice cream sour cream etc Nutrition Underweight et MOPS OOOH OTST OE DESEO HEE OEEETESSSOS OEE E SEDO OE EEEESESESOSE SEES OSES TESTES SOSS OEE O EEO OTESSESSSSSSEEE OEE O OHS ESSSSSSSSSSESEEEOEOEEE OG eecococoocoococcosocooosocosococooocoococococosococococooccocosococosocosososcocoooococococococosocoocooococcoccocococococooooosoocooooo If you have Diabetes Kidney Disease and or Heart Disease you should go to the websites listed below rather than using the information on this page www diabetes guide org american diabetes association diet htm www heart org HEARTORG GettingHealthy Diet and Lifestyle recommendations_UCM_305855_Article jsp To
27. gain weight try the following A Try to eat as many times a day as you can even if C As a snack or when you can t eat a meal drink it s just a snack Aim for 3 meals plus 3 snacks A nutritional supplements like Ensure Boost or good time to add a snack is at the end of the day a Juven Ensure Plus or Boost Plus have even more few hours after dinner nutrition than regular Ensure Boost All of them are lactose free B Make your own milkshakes by mixing milk soy milk juice or yogurt with any of the following D Snack on nuts and dried fruit Keep a bowl of protein powder peanut butter ice cream banana them in sight and take a few as you pass by fruit or chocolate syrup 31 Nutrition Underweight To gain weight try the following continued E Sneak extra fat into foods For example add a tablespoon of olive oil to a bowl of soup or a pat of butter to morning oatmeal F Try to eat more on days when you feel well For example if you re hungrier at one time of the day like morning learn to eat a big breakfast G Keep moving It s easier than you think Just walking to the store or if you re inside making the bed or preparing a meal count as exercise So does lifting weights or riding a stationary bicycle Go outside even if it s just to sit in a nearby park or walk around the block Leaving your apt and or being as active as possible All of these activities should help increase your appetite H Partic
28. if this treatment is appropriate for you Eat foods that are easy to prepare If you are too tired to cook A You may want to ask your health care provider about drinking specially prepared liquid supplements like Boost or Juven These can be used as meal substitutes If friends or family call and want to bring something over have them bring some food If possible freeze some in airtight containers for later When you feel better cook meals that are easy to prepare Store them in small containers so it s easy to reheat and serve Eat foods that are easy to prepare such as frozen meals cereal with milk sandwiches and eggs You can have up to 7 yolks per week and as many whites as you want If you are having trouble eating because of pain or difficulty swallowing or because chewing is uncomfortable please refer to Mouth Problems on page 57 33 34 Diarrhea Diarrhea is a common problem with HIV infection You can ask your health care provider for medication to stop diarrhea To help manage diarrhea you can also try these suggestions A Drink plenty of liquids to replace the fluid you are losing Try drinking at least 8 eight ounce glasses of liquid each day Water is most important You can also drink sports drinks like Gatorade mixed with water and salty broth The BRAT diet is often helpful to reduce diarrhea because it helps bind you It contains Bananas white Rice Applesauce a
29. in people with HIV C Having HIV and managing your health creates some unique challenges It is very important to see your health care provider regularly to help you manage any condition that may develop D Older people may be on a lot of other medications which may interact with each other and with HIV medications see page 24 Tell your primary care provider all the medications you take so that interactions can be monitored and you can get help managing any side effects E As mentioned on page 10 get a colonoscopy If a close family member mother father sister brother or child had colon cancer or polyps before age 50 have a colonoscopy before you are 50 years old F In addition to the above screenings and vaccinations ask your health care provider to G Ask if you are able to take the herpes zoster vaccine to protect you from getting shingles If your T cells are too low you will NOT be able to take this vaccine Taking Care of Your Health Concerns for Women It can be difficult and even scary to go for a gynecological exam but it is very important to get a yearly checkup Find a practitioner you feel comfortable with and talk to them about your fears and concerns HIV and Menstrual Problems Many women living with HIV experience changes in their menstrual cycle A Changes you may have include B Irregularities to your periods happen less often if fergeteges LIEPEN EEN ET ELE PET EITA PYET E you have a high CD4 T
30. ing at night E Avoid taking a nap within 6 hours of bedtime F Wear earplugs or listen to soothing music G If pain wakes you up talk to your health care provider about medication to relieve pain See page 50 52 on Pain Try these deep breathing and relaxation exercises to help you sleep 1 Close your eyes and think about your favorite place It should be a place that makes you feel good inside like a beach or a place in the country 2 Breathe in and out slowly and deeply 3 Think about relaxing You can say to yourself I am relaxing I can feel my whole body relaxing 4 Ifit helps you can count while you breathe For example when taking in a deep breath you can count air in one two three and then air out one two three 5 You can do this for a few minutes or as long as you re comfortable 43 Shortness of Breath If you notice any shortness of breath that is new or worse than you have had before let your health care provider know It could be a sign of an infection in your lungs especially if you have a temperature greater than 100 F Any change in your breathing is important When you feel short of breath it is helpful to A STOP what you are doing and rest until you catch your breath B Try not to panic Not being able to catch your breath is scary for anyone Try to focus on relaxing C Take walks at your own pace in areas where you know there are benches to rest such as a park
31. ink liquids Popsicles ice cream and ice cubes may numb mouth pain Fat foods at room temperature and avoid very spicy foods V For dry mouth A D Because certain foods may irritate a dry mouth try avoiding very hot or very cold foods spicy foods dry or hard foods and citrus juices Strong commercial mouthwashes can also irritate a dry mouth Try substituting the homemade mouthwash made from water salt and baking soda mentioned in section C Drink water throughout the day When away from home take a small plastic bottle of water with you At night keep a pitcher of water near your bed Suck on sugarless hard candies or chew sugarless gum Use lip balm to keep your lips moist VI Report any new mouth problems to your health care practitioner If your gums start to bleed do not use aspirin or aspirin products because they make you bleed more 57 58 Skin Problems Skin problems are common Report any rashes itching lumps bumps growths blisters or changes in skin color to your health care provider Review basic skin care page 25 Section I especially if you have dry skin Managing skin infections A Ifyou have sores or breaks on your skin don t take tub baths Instead take a shower Some sores caused by viruses can spread to other parts of your body through the bath water B Use a separate washcloth to clean the areas of your skin where there are sores C Avoid sc
32. ipate in one of the many food service programs for people living with HIV God s Love We Deliver delivers meals anywhere in New York City Their number is 212 294 8102 or 800 747 2023 Along with the weight gain suggestions above the following recommendations will help improve your nutrition If you re not eating a lot it s very important that what you do eat is high in protein A major source of protein is animal products like meat fish chicken eggs and dairy milk yogurt cheese There s also a lot of protein in soy products soy milk tofu edamame beans and nuts A Prepare soup and hot cereal with milk instead of water B Get in the habit of taking a multi vitamin daily at the end of your largest meal C Ifyou have a history of dehydration increase the amount of water you drink but do NOT drink either before or during meals as this will decrease the amount you eat D Learn to read the nutrition label on every packaged food Once you re comfortable with the label you can select foods that are more nutritious If you re having trouble eating because food doesn t smell or taste right try the following J If smells bother you 32 Nutrition Underweight K You can increase the flavor of many foods with herbs basil oregano rosemary thyme mint spices cloves cinnamon or lemon juice L Ifyou have a metallic taste in your mouth e Take 50mg zinc day Check with your health care provider to see
33. ith Illness and Depression 0 0 c0cc cece eeeeee ees 66 HIV and shame HIV is a disease caused by a virus You do not have to feel ashamed for having this illness If you have no one you can talk to about this speak with your health care provider for a referral to a community based organization where you can get assistance and meet other people who are living well with HIV We want to help The Visiting Nurse Service of New York has been providing care for people with HIV AIDS since 1981 Our staff continuously receives education regarding your special needs We not only want to provide home care services but also teach you how to take care of your health and manage signs and symptoms that affect your comfort and well being The information we are sharing with you is based upon research and years of experience caring for people with HIV AIDS We also listen to our patients and their caregivers They tell us what their problems are what works and what doesn t Preventing problems Our patients often ask us if there is anything they can do to prevent certain problems The answer is yes Taking your medications as prescribed eating healthy foods taking proper care of your skin and mouth and getting exercise are all ways you can avoid some of the major complications of HIV Managing your symptoms We have studied the symptoms most often seen in people with HIV AIDS Sometimes the symp
34. ivities and rest periods For example eat breakfast first and then allow for rest before you wash or get dressed Build in rest periods between activities Plan to do the most important things first so that you have the energy and breath to do them Sample Daily Activity and Rest Schedule Eat breakfast Choose a way to rest Sit in a comfortable chair read watch TV listen to music Shower Rest again with whatever relaxes you Get dressed Sit down and have a snack Go for a walk Practice Relaxation and Deep Breathing Exercises This is just an example You can make your own personal Daily Activity and Rest Schedule by filling in the chart below Your Own Personal Activities and Rest Schedule Activity Rest Period 47 48 Shortness of Breath You can learn to cope with shortness of breath Increase the amount of sleep you get even with cat naps Eat healthy foods Food provides fuel for energy If you want energy you have to put food in your body Small frequent feedings are probably a better choice than three heavy meals especially if you feel short of breath You use less breath when the meal size is smaller Try to exercise regularly Exercise can help you to strengthen muscles build endurance and control shortness of breath Exercise can also improve how you feel You will probably feel better when you see that you can do more Exercise improves how well your body uses oxygen You don t have to
35. jog or join a gym Simple exercises include e Walking up and down stairs even if you start with only two or three steps Try to increase the number of steps each time you do it Ask your health care provider which exercise is best for you Chronic Cough If you are coughing more than usual or have a new cough let your health care provider know right away It may mean that you have an infection in your lungs especially if you have a fever above 100 F It is important to have your health care provider check any new or worsening cough If you have night sweats let your provider know right away When you cough cough into a tissue or your elbow to avoid spreading germs If your mucus has a color to it notify your health care provider This could mean you have an infection Often this is easily treated with antibiotics Cold air can cause you to cough You can lessen the effect of cold air by covering your mouth with a scarf To ease coughing spells e While sitting in a chair place a pillow on the table in front of you and lean forward on to the pillow Place your arms just beyond where you lay your head e Consult with your health care provider or pharmacist about using cough medicine The cough medicine that is best for you depends on whether you have a dry cough or a productive cough A productive cough means you have mucus along with your cough Take your cough medicine according to directions from your health care p
36. me Care Purchasing life necessities such as coats medications and Policy and Research transportation for our neediest Supporting Aging in Place allowing patients and offering free wigs to older New Yorkers to remain cancer patients independent in their own homes and Improving health care quality and with greater dignity and quality of life helping patients manage chronic conditions and receive the most effective treatments possible in the Many of these programs are made possible only through the generosity of our donors These contributions help to bridge the gap between what it costs us to provide our life saving life altering and life enhancing philanthropic programs and the reimbursements we receive Won t you join us in bringing this critical charitable care to our community s neediest VNSNY is a not for profit organization and we count on the public our donors for support Please mail your gift in the enclosed envelope or send it to VNSNY Development Department 107 East 70th Street 5th Floor New York NY 10021 You can also make contributions easily online Please visit Thank you Together with your generous support VNSNY our website at www vnsny org donate or call our donation will continue to provide the highest quality skilled hotline at 212 609 1525 and compassionate home health care in the New York metropolitan area 73 Visiting Nurse Service of New York SELF CARE GUIDE 20 0
37. nd Toasted white bread or Tea black not herbal Eat foods high in potassium such as bananas and potatoes Coconut water has a lot of potassium Choose foods like fish chicken cooked eggs peanut butter yogurt noodles and cooked cereals such as farina and oatmeal Alcohol caffeine and milk can make diarrhea worse Therefore avoid or at least cut back on the amount of these beverages you drink Use nutritional supplements like Advera or Lipisorb which won t make your diarrhea worse Some supplements do like Ensure or Boost Ask your health care provider which is best for you Instead of 3 large meals per day try to have 5 6 small meals Some people find that acupuncture can help relieve diarrhea Certain foods can make your diarrhea worse x Certain foods can make your diarrhea worse They include A Greasy fried fatty foods B Strong spices such as hot peppers chili curry C Fruits except raw apples pears and bananas D Whole wheat or bran products nuts E Vegetables like beans cabbage cauliflower broccoli peas corn onions kale collard and mustard greens I If milk or dairy products give you diarrhea you can try A Avoiding them You may have developed lactose intolerance Lactose is a substance found in dairy products B Lactose free dairy products Even lactose intolerant people can enjoy yogurt hard cheeses like cheddar and Lactaid milk C Asking your health care provider ab
38. nd your eyes Your health care provider can give you medications to control the infection and reduce the severity of the disease These medications work best if started within 3 days of getting the first sign of shingles You may also be given pain medications to treat severe pain Pain may continue even after the rash is gone What to do when blisters form Notify your provider if you develop redness around the rash This may be an infection that is easily treated 59 Skin Problems I Genital Herpes e You can get genital herpes from someone who is infected even though they may not have a visible sore and may not know they are infected e Always use a condom to help prevent passing the infection to your partner even when there is no visible sore Remember it is possible to pass on the infection when there is no visible sore e Treatment also helps to prevent passing the infection but neither condoms nor treatment is 100 effective in preventing transmission IV Pressure ulcers and skin breakdown A Ifyou have problems controlling your bowels and bladder e Sometimes people have trouble controlling their bowels because of infections If this happens you can use baby wipes to clean your skin Carry them with you when away from home Keep this area clean to help prevent skin breakdown Skin Problems External pressure such as gravity or bed linens Bony prominence Soft tissue Supporting surface Pressure
39. ny people with chronic illness have these thoughts from time to time If you have these thoughts you should tell someone you trust Ask them to help you find professional help right away e SCOCSSHSHESSHSHSSSHSHHSHSHSHSHSHHSHHSHHHSSHSHSHSSHSHEHSHCHSHHSHHSHSHSHHHSSSHHSHOSHOHSHSSHSHHESHSHHESSSHSSHOHEOHSHESEOSHHBOSEESEEOEEF 67 68 NOTES NOTES 69 70 NOTES NOTES 71 72 NOTES PLEASE JOIN US TOGETHER WE CAN MAKE ALL THE DIFFERENCE Thanks to our generous donors VNSNY is able to offer a vast range of direct patient services to the entire New York City metropolitan area including those who otherwise could not afford care For example e Providing urgent and long term charitable health care to uninsured and underinsured New Yorkers as well as free health education and screenings to tens of thousands of New Yorkers Caring for children with chronic illnesses and developmental delays and disabilities e Pairing first time low income mothers with nurses committed to improving their health well being comfort of their own homes thanks to and self sufficiency vital research provided by VNSNY s preeminent Center for Ho
40. om CMV Retinitis Cytomegalovirus an infection of the eye Taking Care of Your Health V Viral Load Tests A A viral load test is a simple blood test to determine how active the HIV virus is in your body and to how well HIV medications are working It tells us how much of the virus is in a small amount of blood The result is reported in copies per milliliter abbreviated ml B When HIV is uncontrolled in the body the viral load can be very high Sometimes the viral load can go over a million copies ml Having a high viral load can be hard on your body and can make it hard for your T cells to fight off infections C When you take HIV medications as prescribed they control HIV activity and your viral load may go down to very low levels This can make it easier for your T cells to fight off infections D When the drugs work very well the viral load can go down to undetectable levels Undetectable viral load does not mean you are cured You still have HIV but the infection is very well controlled This is great news but you can still pass the virus to someone else through unprotected sex sharing needles and from mother to child during pregnancy delivery or breast feeding VI HIV and Getting Older A As you live longer with HIV you may get some of the conditions mostly seen in older people B Heart blood vessel kidney and bone diseases diabetes and cancer may develop These conditions are more common
41. omes worse seek immediate help if in distress e e CHESS HSHSHSHSHSHHSHSHSHSHSHHSHSHSHSHSHSHSHSHSHSHHSHSHHHSHHSHHHSHEHHHSHSHEHSHHHSHSHSHHHSSHHSHSHHSHSHHHHHEHEHSEHOHEHEOHHEHHOHHOSHHOSHEHHEHHOESHEEEEEFe 45 46 Breathing Rating Scales A self rating scale can help you decide how well you are breathing and able to function that day Use the Shortness of Breath Rating Scale to help figure out how well you are breathing 0 means you have no shortness of breath or no problems breathing 5 means you re having moderate difficulty breathing and 10 means you cannot catch your breath For example on a day when your breathing rates a 2 you will probably be able to do more than on a day you rate your breathing as a 6 Try to identify what makes you short of breath Do you feel short of breath when you exercise In some people anxiety or feeling emotional can cause it Do you feel shortness of breath all the time Maybe you re not sure what triggers your shortness of breath You can identify what makes you short of breath using the number scale on the right RATE YOUR ACTIVITIES Activity How I rate my breathing fill in a number from 0 10 Dressing Bathing Eating Cooking Going up stairs of steps Going to see doctor Anxiety Exercise BREATHING SCALE 10 No Problem Breathing Moderate Difficulty Breathing Can t Catch My Breath Shortness of Breath Plan your act
42. out special tablets Lactaid tablets that you can take to reduce the problem You can also buy lactose free milk and cheese V To prevent soreness and skin problems caused by diarrhea A Use a moisturizing soap like Dove or Caress to clean after bowel movements B Pat your skin dry and apply a thin coat of Vaseline or A amp D Ointment They will both soothe the skin and protect it from contact with moisture Use liners in your underwear to prevent leakage and moisture from getting on your clothes Use baby wipes to clean yourself after going to the bathroom Remember to carry them with you when you leave home 35 36 Nausea and Vomiting Nausea and vomiting are common problems with HIV infection You can ask your health care provider for medication to relieve nausea Here are some tips you can try to help you feel better e The less flavor the better Foods that are cold often have less flavor than foods served room temperature or hot e When you are nauseous bland food is usually easier to digest Try food like potatoes rice crackers jello or yogurt e Review all your medications including vitamins minerals and herbs as they may be making your problem worse Constipation Medication to relieve pain often causes constipation If you cannot move your bowels easily or the way you normally do let your health care practitioner know Here are some suggestions for relieving constipation e Over the
43. pression include A Discuss your feelings with others e There is a wide range of support groups available in all boroughs of New York City These groups can be helpful and you will see that you are not alone with your feelings It may help you learn new ways to deal with these feelings B Medication has been successful in helping many people cope with their depression You can discuss medication options with your health care provider C Include some form of physical exercise in your daily activity If you can get out go for a walk every day If you can t leave your home walk around the apartment several times Even if you are in bed you can exercise your arms and legs every day D Don t avoid your family and friends Ask them to visit frequently Even if you think you re not up to it make an effort Remember the people who love you want to see you E Take it slow When people get depressed they are often not able to do the things they usually do Be patient with yourself H Avoid street drugs and alcohol These can make depression worse as well as interfere with the medicines you are taking I Avoid making any major life decisions when you are depressed It s best to ask someone you trust for advice about major decisions er PPP SSSSHOHHHHOHHOHHHHEHHOHHOHE SHOES OSHOHOEHOHHOHOEHOHHSHSEHHHOHES SESE EHOSEHOSESO SELES ESEOEO OE Note Thoughts of suicide and death are often a part of depression You are not alone ma
44. r practitioner gives you a medication that is not a standard pain reliever Medications to relieve pain may cause constipation If you cannot move your bowels easily or _ on your usual schedule let your health care practitioner know See page 37 on Constipation for further information 51 52 Other Ways of Relieving Pain Try deep breathing and relaxation exercises They may help soothe your symptoms and calm anxiety For example A Close your eyes and think about your favorite place It should be a place that makes you feel good inside like a beach or somewhere out in the country B Breathe in and out slowly and deeply C Think about relaxing You can say to yourself I am relaxing I can feel my whole body relaxing D Ifit helps you can count while you breathe For example when taking in a deep breath you can count air in one two three and then air out one two three E You can do this for a few minutes or as long as you re comfortable Listen to music you enjoy Read a book or magazine Watch a movie Laugh Use pillows to support you in bed Hug a pillow to relax your arms Support your back with a pillow Use a special bed surface to prevent skin breakdown especially if you have lost a lot of weight Try heat or cold at the site of your pain whichever works best for you Massage and or acupuncture may also help Ce e Note Remember to communicate with your health care pra
45. ratching areas where the skin is broken you can spread infection Ask your health care provider if you should cover any sores with gauze D Fungal infection of the skin is acommon problem in people living with HIV You may notice areas in your groin and inner thighs or on your buttocks that are red and itchy Things you can do to control and prevent these problems include 1 Using an antifungal powder or cream every day You don t need a prescription and can buy these products at any drug store Ask the pharmacist to point them out 2 Eat yogurt every day Believe it or not yogurt helps prevent skin problems that are caused by fungus Make sure to check the label when you buy yogurt It must say Lactobacillus acidophilus or L acidophilus If you don t like yogurt you can buy L actobacillus acidophilus capsules in a health food store Skin Problems Shingles If you have had chickenpox in the past you may be at risk of getting shingles Shingles is a viral illness that is caused by the same virus that causes chickenpox so it can be spread to people who have not had chickenpox or the chickenpox vaccine If you have shingles try to avoid contact with people who have never had chickenpox or the vaccine especially during the first 3 days of the illness A Signs of shingles B Shingles eye infection may lead to vision loss See your health care provider immediately if you get shingles in or arou
46. rovider i Drinking clear fluids can sometimes help loosen mucus making it easier to cough up Warm tea with honey may help soothe your throat Gargling with warm salt water can also help relieve a sore throat Ask your health care practitioner whether there is any possibility that gastric reflux can be making you cough This means that your stomach fluid is backing up and causing you to cough 49 50 Relieving Pain When you feel pain in any part of your body tell your health care provider about it Ask them for ways to relieve it Pain is real It is not imagined Continue to mention your pain to your health care provider until you get relief You have the right to be pain free Pain Rating Scale It s just as important to report pain as it is to have your blood pressure and temperature checked A Self rating Pain Scale can help you express how much pain you have Think about how strong or intense your pain feels and see what number matches your pain 0 means you have no pain at all and 10 means you feel the worst pain possible Review your ratings with your provider so they can help determine the best relief for you There are different kinds of pain Pain in your internal organs can feel like cramping squeezing crushing gnawing tightness pinching or pressure It may move around and be difficult to know where it s coming from Often pain in your muscles or bones feels aching or
47. rovider let him her know Not taking the medications as prescribed can lead to drug resistance This means that the drugs may no longer control HIV The choice is yours but it helps to let them know that you stopped taking your medications This can help your provider take better care of you COSC HH EHO HHS HHO HEH HEHEHE OEE HOOT EHH OSH OSL OHEOHEOELOOS OOH OLE SESSOROOG Note If you decide to take the medications to control HIV it is VERY IMPORTANT to take them at the same time every day Remember skipping doses and or skipping days can cause drug resistance Drug resistance means the medications have less or no power to fight HIV e e Coeeeeeoececoceeooeces e e Coeoeeeeeeeneseeeeoeeseeeeeseeseeneseeeeeesseexneeeeeseeseneeeeeoeeseeneee Alcohol and Drug Use Wey Treating HIV can be more complicated if you are using alcohol or drugs on a regular basis Unfortunately it is sometimes difficult to find someone to talk to about this People can seem judgmental and uncaring However it is important to deal with alcohol and drug use because it affects your health Drinking alcohol can be a problem because A Itcan damage your liver or pancreas If you continue to drink while taking certain medications that treat HIV TB or MAI you could increase your risk of damaging these organs B Ifyou have hepatitis it s important to speak with your health care provider about alcohol and drug use With hepatitis your liv
48. rs for the tub or shower D A hand held shower head E A urinal or commode so you won t have to get up during night Exercise will help strengthen your muscles Ask your health care provider or physical therapist about a home exercise program to help strengthen your arms and legs Walking is good exercise Even lifting heavy books or cans of food can help build upper arm strength SCHOSSHSHSHSHHESHSHSHHSHSHSHHSHSHSSHSHSHHSHHSHSHHHHSHSHSHSHHEHSSHHHSHSHSHSHHOSHSHEHSHSHHEHHSSHHHOSEHSHSHSHSHHSHSEEHBESHSHEOHEHEEOHEEEOEEE 53 54 Fever Fevers can occur throughout the course of HIV illness and should always be reported to your health care practitioner A fever is generally considered to be a temperature over 101 degrees Fahrenheit Things you should do when you get a fever include A Take medicine such as Tylenol or ibuprofen to bring the fever down ask your practitioner which is better B When in bed use a sheet and a loosely woven blanket to cover yourself This will allow heat to escape from your body without allowing you to catch a chill Try to stay warm C Keep your clothes and bed linens dry Change them if they become wet from sweating D If you want you can take a tub bath if you have no sores on your body Make sure your room is very warm The bath water should be about 1 to 2 degrees less than your body temperature as measured by a thermometer After you finish dry off thoroughly go to bed and get under the co
49. th are normal then have a PAP once a year D Get tested for tuberculosis every year E Ask your healthcare provider about getting the flu shot every fall F It s important to get the Pneumococcal Vaccine every five years This can help protect you from getting pneumonia G Get an eye exam yearly If your T cells are below 50 have an eye exam every 6 months H See a dentist once a year for an examination of your mouth l Get a colonoscopy at the age of 50 If you have a close family member mother father sister brother or child with a history of colon cancer or polyps get it done earlier J There are several ways you can protect your liver You can get tested for Hepatitis A Hepatitis B and Hepatitis C V T cells also called CD4 cells Remember T cells are part of the immune system that helps protect against infections A The higher your T cells the better your body is able to fight off infection The higher T cells the better B Ifyour T cells are around 200 or lower you need medication to prevent PCP Pneumocystis Carinii Pneumonia Without this medication you are at risk for getting this type of pneumonia C Ifyour T cells are around 50 or lower you need medication to prevent MAC MAI Mycobacterium Avium Intracellulare Complex Without this medication you are at risk for getting MAC MAI D If your T cells are around 50 or lower you need to have your eyes examined every six months to protect fr
50. the HIV in your body with medication B So you don t infect other people with HIV Preventing the Transmission of HIV I Safer sex includes A Using a latex condom rubber to cover the penis during intercourse penetration in the vagina and in the anus e Use plenty of water based lubrication lube like K Y Jelly or Wet when using condoms Without the lubrication the condom can tear more easily There are many lubricants available Just make sure to read the labels The labels will tell you if the lubricant is safe to use with latex condoms e Do not use oil based lubricants like Vaseline or baby oil They will cause the latex condom to rip e Lubricants containing nonoxynol 9 may cause irritation in your genital area which could increase the risk of transmitting HIV Note Having sex when you drink alcohol or take drugs can be a problem because you may not be able to make good decisions and will not practice safer sex B Using a female condom If a man won t wear a regular condom rubber women can use a female condom to protect themselves The female condom is made from polyurethane Both Rite Aid and Walgreens stores carry the female condom You can also go online at mayerlabs com for more information This information is very important If you don t understand any part of it ask your health care provider to explain Using a dental dam when performing oral sex on a woman If you don t hav
51. toms come and go Sometimes they stay around for a while The purpose of this book is to help you learn how to control these symptoms rather than let them control you In some cases you can prevent symptoms or at least keep them from getting worse Keep this book around so you can look up information when you need it Certain suggestions can help with a number of symptoms These suggestions are repeated in the book Understanding HIV Maintaining your health depends on how well your immune system is working Your immune system is made up of special blood cells that protect the body from germs that cause infections The special blood cells that direct the activity in the immune system are called T cells also called CD4 cells a When a person gets infected with the Human Immunodeficiency Virus HIV the virus infects and kills the T cells HIV kills these cells slowly over a period of years Unless a person gets tested for HIV they aren t usually aware that they are infected As T cells decrease however the body loses its ability to fight infection and the person gets sick The normal T cell count is 500 1600 People with HIV can have low T cell counts as HIV destroys these cells Sometimes the T cell count can even drop to zero When the T cells fall below 200 the person with HIV infection has less protection from disease and can develop infections or in some cases cancer When this happens the person is diagnos
52. vers E Do not use alcohol or tepid room temperature sponge baths because you might start to shiver Anything that causes you to shiver will make your temperature go even higher F If you have chills and are shivering get into bed and keep warm G Having a fever uses a lot of calories If you feel up to it eat six small high protein high calorie meals a day If your appetite is poor try drinking a homemade milkshake like those listed in the Nutrition section on page 31 H Drink at least 6 8 glasses of fluid a day unless you are on a fluid restricted diet If your temperature doesn t come down you should contact your health care provider Fevers that do not go away can be very dangerous Do not wait because some people get confused with high fevers II If you have a recurrent fever at night you can manage the problem by A Taking prescribed anti fever medication before you go to sleep Keep an extra dose near your bed so if you need it you won t have to get up and look for it B Keeping a bottle of water next to your bed C Placing a towel over your pillow so if you sweat during the night all you have to do is remove the towel in order to have a dry pillow Keep an extra towel nearby in case you need it D Having a change of bed clothes nearby 55 56 Vision Problems Always report any changes in your vision to your health care practitioner immediately In some instances the problem is caused by an e
53. y A Always wash their hands well before and after caring for you B Wear latex gloves if they come in contact with your blood or other body fluids Note There have been no documented cases of HIV being transmitted through saliva sweat or tears C Clean up spills of blood or body fluids with a solution of one part bleach to 100 parts water That is cup bleach to 1 gallon of water Once mixed this solution is good for 24 hours Taking Care of Your Health You can prevent health problems The basics include Signs and symptoms that need to be reported include Ir A 7n mon w D oz z2 z ra 5 Changes in vision Shortness of breath Rashes or sores on the skin Fever and or night sweats Trouble swallowing Headaches dizziness seizures Bleeding gums blood when you go to the bathroom vaginal bleeding White stuff or sores in or around your mouth Pain anywhere in your body A new cough Weight loss Diarrhea Numbness or tingling in your arms or legs Redness or itching anywhere on your body Trouble remembering things Taking Care of Your Health I Health Maintenance and Screenings A If you are sexually active get screened for Sexually Transmitted Infections STI for example syphyllis gonorrhea chlamydia once a year B Ifyou have anal sex have an anal Pap smear once a year C Women need to have a Pap smear every six months in the year after HIV diagnosis If the results of bo
54. y to the bathroom If you turn down the ringer volume on the phone leave a note on the phone reminding you to turn the volume back up when you wake up Have anything you might need during the night next to your bed such as tissues and something to drink Try to avoid eating or drinking anything containing caffeine such as chocolate coffee or cola around bedtime If you re having trouble falling asleep because you feel overwhelmed or stressed out there are many support groups in New York City for people living with HIV Sleep Problems Before getting into bed A Take a warm shower It may help relax you B Listen to soft music C Read a book or magazine D Drink warm milk or herbal tea II When you get into bed you can try this Deep Breathing and Relaxation Exercise to help you sleep A Close your eyes and think about your favorite place It should be a place that makes you feel good inside like a beach or somewhere out in the country B Breathe in and out slowly and deeply C Think about relaxing You can say to yourself Tam relaxing I can feel my whole body relaxing D If it helps you can count while you breathe For example when taking in a deep breath you can count air in one two three and then air out one two three E You can do this for a few minutes or as long as you re comfortable Ce e Note If none of these suggestions help you get a peaceful night s rest speak to
55. ye infection and the earlier you get treated the less likely you are to have significant loss of vision Here are some suggestions to help you if you are having problems with your vision A Keep a night light on when you go to bed at night B Use a tray when you eat meals Place everything you are going to eat on the tray This will give you boundaries around your food and utensils that you can feel C If friends visit and they happen to move something ask them to put it back before leaving D Ifyou use a cane always bring it with you outdoors and leave it extended not folded up This helps people understand that you have vision problems so they don t bump into you E If you need help when crossing a street don t hesitate to ask for assistance People will usually help especially if they see your cane F Use an electric razor to shave File your nails instead of clipping them G Pre pour boxes make it easier to take your medicines Ask your provider about an alarm watch to help you remember to take your medications on time H Ifyou have a tape recorder ask your health care provider to record instructions during the visit I Some people feel having a shorter haircut is easier to manage J Don t be surprised if people talk loudly when they discover you have a vision problem We know it makes no sense but people do it Remind them that you can hear and they don t have to shout K
56. your health care provider about medications to help you sleep e CHOCHSSSHSSHESHSHHHEHSHSHHSHSHHSHHSHEHSHEHSHHSHHSHHHSHEHESEHHOHSHHHEHSHHOSHOSEHSHHSHSHSSHESESOHSHOSSHSHEHEHSSEHOHBEOSESHESEHESHEHEOEES E 63 64 Problems with Memory and Concentration Sometimes people living with HIV infection develop memory problems They might forget things that they would usually remember They may find it hard to concentrate or suddenly get confused This can be embarrassing or even scary If you notice this happening tell your health care practitioner about it It may be possible to treat this Things that you can do to improve and manage the situation include A Stay as active as possible by 1 Joining a support group for people with HIV AIDS Spending more time with family and friends Getting out of your apartment every day even just to go for a walk If someone cooks for you you can participate in making shopping lists or planning meals Try to get some exercise each day If you are able you can help with activities around the house Sy eS F Do puzzles such as crossword Sudoku or KenKen B Watch television every day especially the news so you keep up with what is happening C Keep a calendar visible and mark off each day to remind you what day it is D Wear a wrist watch so you know what time it is E Get dressed every day and continue your usual grooming activities such as shaving or putting on makeup F Ifyou
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