Wednesday, August 24, 2011

Last IVIG Drip

I'm wishing and hoping that I‘ve a very smooth last treatment since this is the last one of IVIG this coming Sunday Morning at 7:00am . And I pray that this is just the ticket for me!! Many patients have done this very successfully and done it extremely well, as I’m doing by taking this treatment. I’m praying that this will work. I know I’m going win.

Quake shakes East Coast



I think this is his way in telling us to fixes the world now before we destroy it, Fires ,Floods. Poverty & Hunger. Though Virginia hadn't had a quake like Tuesday's in 67 years, it was mild by West Coast standards. California has seen 35 quakes of that size since 1944, when the last East Coast quake of this magnitude occurred. So the first thing everyone had to do was figure out what was happening. I was in the local pharmacy when the bottles starting to fall off the shelves, People were screaming and running out to the parking lot. For a moment I thought I was in a movie, I told some of the people that it would only last a minute which I should had said 10 Seconds. My cell phone did work and the only person I could get was Virginia and likewise with her, I think we were more worried about my dad and Una. My father did say that boomer the dog starting barking very loudly and nonstop before it hit them in Stanly Virginia and Luray county.

Sunday, August 7, 2011

Rudeness


I think it very rude when a person or persons do not respond back to say no thanks, not today or no I'm not interested in you, but thank for sending me a post of interest. All I'm saying is take one minute out just to send that little note. And don't be rude because your day will come back to bite you in the ass. I consider myself to be a “nice guy” that is rarely rude. There have been many instances in my ? years that I have had to be an a**hole. For the most part though, I prefer to treat people with dignity and respect. I am not talking about the occasional person you run into that is in a bad mood about something. That happens to everyone, most of the time these people keep to themselves. I am referring to the ones that a.) lash out at everyone they come into contact with and b.) the ones that offer unsolicited advice.

Tuesday, August 2, 2011

A Small set back!!


Just a small set back!! I will be on a Prednisone at home for the next nine days starting 08/01/2011, this should help with the (A1) rejection. I will keep you all posted as to how I’m doing and if not me my sister Virginia. As of today. My bronchoscopy showed a mild rejection (A1). This needs to be treated. It will be treated it with a prednisone taper. 60mg x 3 days, 50mg x 3 days, 40mg x 3 days, 30mg x 3 days, 20mg x 3 days, back to your baseline of 10mg daily. Also my numbers are down for my Kidneys, I was taken off all of Lasix until future notice and the last thing. I also have small infection in my lungs that will also be treated this with 2 weeks supply of Levaquin. Dose will be 750mg every other day. I must say that University of Pennsylvania is on top of thing as always, Belinda said if my numbers did not go back into normal range I would have to be admitted back to Penn, Where the food is really great cannot wait.(Not).It just as bad as my sister food. LOL. Just joking and I never said which sister did I. So don’t assume I meant Virginia.

Thursday, July 28, 2011

What is bronchoscopy/ lung biopsy?

What is bronchoscopy/ lung biopsy?

Bronchoscopy is a diagnostic procedure used to obtain a small amount of lung tissue and fluid samples, which are then examined under a microscope to help in diagnosing a change in your lung function. During this procedure, your lung doctor examines your lungs (bronchial tubes) and looks for abnormal conditions, such as infection, tumors, bleeding and abnormal sites.

Bronchoscopy provides important information about the condition of your transplanted lung(s) and for your treatment. You will be asked to sign a consent form prior to the test. Your consent tells that you understand the reason for the bronchoscopy, how it is done, possible alternatives, and possible risks.


What are the risks of a bronchoscopy?

The primary risk with bronchoscopy is bleeding from the site of the biopsy, but this occurs in less than 1% of patients. Other rare complications include lung collapse, hoarseness, sore nose or throat. You will be monitored closely for several hours after the procedure to make sure no complications arise.

Please note: If you have a heart murmur, heart valve problems or artificial joints, remind your doctor. You may need to take an antibiotic before the bronchoscopy as a precaution.


Instructions for patients having a bronchoscopy.

The office staff will set up the appointment for your bronchoscopy and call you with the date and time. Please be sure to follow these instructions:

  1. You must abstain from aspirin and ibuprofen-containing medications. This includes but is not limited to Advil. Motrin, Nuprin, and Aleve these medications can cause increased bleeding. Tylenol is OK. Notify your physician if you are taking blood thinning medication.
  2. You will be notified of arrival time and place of the bronchoscopy.
  3. Your doctor may order tests such as blood tests, an EKG, or a chest x-ray, to be performed before the procedure. These tests may be done in the physican's office, the hospital, or in an outside laboratory.
  4. On the night before the procedure, do not eat or drink anything after midnight, unless your doctor gives you different instructions.
  5. If you usally take medications in the morning, ask your doctor wheather you should take them as usual or if they should be taken after the test.
  6. When you come for the procedure, bring a list of any medications you are taking, along with the dose of each medication.
  7. On the day of the test, please arrive 30 minutes befor the appointment time.
  8. Please dress comfortably and leave valuables at home.
  9. Be sure to arrange for someone who will; be responsible for taking you home after testing. This person may arrive with you, or up to four hours after your arrival.


How is bronchoscopy performed?

  • In the procedure room, your temperature, pulse, and blood pressure will be taken.
  • A plastic clip will be placed on your finger to measure the oxygen in your blood during the procedure. This is known as a pulse oximeter.
  • Your heart rate will be monitored throughout the test, and you will receive oxygen.
  • An IV (an intravenous line, a thin plastic catheter which goes into your vein) will be started. This is used to give you medication as needed.
  • Medication may be used to make you drowsy and relaxed.
  • Your throat will be sprayed with a local anesthetic to make it numb. This will make you more comfortable when the scope is passed through the throat.
  • The bronchoscope is a long soft tube with a magnifying lass and light on the end. The tube is about as wide as a pencil. The scope is gently passed through your nose or mouth, and into your lungs.
  • You will be able to breathe easily throughout the procedure. The doctor will be able to see into the airways, and can take samples of tissue for biopsy through the scope. You will be observed closely by the nurse during the test and afterwards, until you are fully awake and able to leave the area for discharge.


How will I feel during bronchoscopy?

  • You might feel some discomfort as the scope is passed through your nose and throat. This will be minimal and it will last only about 10-15 seconds.
  • Usually there is a small amount of bleeding after the test if a biopsy is taken. You may notice that you cough up some blood tinged mucous. This will decrease after a few hours. If the bleeding increases or if it lasts longer than 24 hours, call your doctor.


When can I eat after bronchoscopy?

  • Two hours after the test, you will be able to take a few sips of water.
  • If you can swallow without a problem, you can eat and drink normally at that time. If not, wait another hour and then try sips of water again.


What should I do when I get home?

You may want to take it easy for the rest of the day after the test. If you received sedation you may feel tired or sleepy. Do not drive or operate machinery or sign any legal documents for the next 24 hours after the sedation.

  • Do not take aspirin or medications such as ibuprofen in the first 24 hours after the procedure.
  • Check the label of brand name medications to see if they contain ibuprofen or aspirin. These medications can increase bleeding.
  • Check with your doctor about any possible changes in your usual medications and ask when you can begin to take them again.
  • You may have a slight fever after the bronchoscopy and your doctor may suggest taking acetaminophen (for example Tylenol®) for fever or discomfort.


What symptoms should I report to the doctor after bronchoscopy?

  • Bleeding that lasts longer that 24 hours or if it increases (report amounts greater that blood-streaked mucus).
  • Fever (temperature over 100F) that lasts more than 24 hours.
  • Shortness of breath or chest pain.

Friday, June 24, 2011

What is IVIG or Intravenous Immune Globulin?

1. What is IVIG or Intravenous Immune Globulin?


IVIg is a collection of Y shaped antibodies called IgG as shown in the above cartoon.

IVIg is a plasma product formed by taking antibodies from about 20,000 donors and mixing them together. IVIg has proven effective in several immune system disorders, including nearly all autoimmune conditions even CIDP and GBS. The sooner you can treat the patient with IVIg the better the results. There is a window of opportunity usually within the first 18 months during which IVIg administration is ideal. The longer you wait to treat with IVIg the longer it will take for IVIg to work.

After being exposed to toxins and poisonous chemicals including carbon monoxide the body's immune system may mount a attack on the body. This autoimmune attack can be reduced by IVIG.

2. How does IVIG work?

For immune deficiency where the body does not make enough antibodies, IVIG supplies them. For autoimmune disorders like GBS & CIDP, there is a abnormal autoantibody being formed which is inactivated by IVIG.

Patients with autoimmune disorders like CIDP also are deficient in antiidotype antibodies. IVIG has antiidotype antibodies and thus helps improve the patients condition. Antiidotype antibodies are normal antibodies which are produced in the absence of any antigen. They are capable of inactivating many different types of antigens. IVIg has a higher concentration of antiidotype antibodies.

3. How long does it take to a IVIG treatment to have a effect?

After IVIg infusion, patients may see a response in their disease within 24- 48 hours. Some patients will have to wait 3-4 weeks to see an effect after IVIg. In a few no effect may be seen following IVIg infusion. If 4-5 cycles of IVIg do not show any response then try a different approach like plasmapheresis, cytotoxic or immune suppressants. The NIH recommends that if no response is seen with IVIg infusions, then add steroids to the treatment plan.

Everyone is slightly different as it depends on how long has the disease process been going on. The sooner one treats the disease with IVIg the faster the response. No one can predict how a particular patient will respond to IVIg.

4. Why is IVIG so expensive?

IVIg is obtained from plasma, donors are paid then the plasma is sent to a processing centers for mixing, antibody removal, chemical treatment and filtration to remove viruses. This is followed by the products to be freeze dried. All this ends up for IVIG to be priced at $ 48 to $ 68 a gram. A single IVIg infusion costs about $3000 for a child and 10,000 for an adult. For a child the cost of IVIg is low because only a few grams are used. The price of IVIg in India is $25 a gram. In Pakistan IVIg costs 20 a gram. IVIg can be bought from China at 45-10 A Gram.

5. How is IVIG administered?

IVIG is mixed in a bag and a tube runs from it to a vein usually in the arm. The recommended way to infuse IVIg includes a pump. Usually IVIg is given at a rate of 100 cc/ hour to 200 cc/ hour.

The rate is of IVIg is reduced for any problems such as headaches, rash, fatigue, hypertension or hypotension. For an adult's infusion of IVIg is usually given over 5 to 6 hours. Dr Dalakas mentioned in his study that precise control of IVIG infusion is required. Dr Engle at USC recommends a rate of 100cc/hr of a 7.5% solution.

6. What are the common side effects OF IVIG?

Some times patients get a headache after IVIg which is more common in females with a history of Migraines or SLE. Patients may experience fatigue similar to getting a Flu, which is due to antibodies interaction. Some patients get a rash after IVIg and it is recommended they take Benadryl or even steroids to avoid this. Remember their are a lot of antibodies in IVIg and some may result in odd reactions. After IVIg if odd symptoms are seen then use of steroids usually helps. Some people experience changes in blood pressure and others may have a severe headache called aseptic meningitis.

7. How can one reduce the side effects of IVIG?

Remember to drink eight glasses of water a day for hydration before starting the IVIG treatment and continuing this a month after the last IVIg infusion. Also remember to take a baby aspirin to prevent thrombophelebitis after IVIg. Patients need to check with their doctors if they can use aspirin and should not take this if they are on coumadine or have bleeding disorders. Doctors do not recommend that you use this if you have a history of stomach ulcers. Doctors use Premedication to help reduce side effects. Some recommend that one should take Tylenol or other NSAID for prevention of headaches and pains after IVIg. Physicians may use a benadryl capsule for a rash and even to relax during the treatment. Physicians may use low dose prednisone will reduce side effects like headaches.

8. Where is the IVIG treatment given?

IVIg can be given at home, in a doctors clinic or a hospital outpatient unit. Some patients have even taken this at work.

9. What is the frequency of the IVIG treatment given?

Usually a dose of IVIg is 2 grams per kilogram is divided into five doses and 400mg/kg is infused daily for 5 days. (For the first time only) Some patient can tolerate consecutive days of IVIg. It is recommended that young women take this on alternate days.

This is followed by a monthly infusion of IVIG at 400mg/kg.

Dr Dalakas at NIH recommends IVIG at 2g/kg /Month . For use in all autoimmune neurological disorders.

10. What are the differences in brands of IVIG?

Generally the difference is in IVIg is the amount of IgA content and also if the IVIg contains sucrose, glucose or some other sugar. Some IVIg products have Glycine while another one has no preservatives.

Different IVIg products match different patients. In general all the products work about the same.

11. What is a recall OF IVIG?

A recall of IVIg happens when someone reports defects in IVIg, side effects of a particular batch. Then the FDA may issue a warning or a recall of IVIg. This may also depend on contamination of IVIg .

12. Where can I find out about recalls of IVIG?

The FDA in the US maintains a current list of blood-product recalls on its site. This is because its members use so many different types of blood products, and generally store them in quantity. Look under Biologics and then recalls near the middle of page. http://www.fda.gov/cber/recalls.htm

13. Who is a good provider for IVIG?

There are many nationwide providers of IVIG. . Some provide customized service for the patient. They select the correct IVIG for the patient. They manage side effects . Their nurses are well trained. They will also work with you on CO-PAYS and disease management.

Email us for a nationwide IVIG provider.

14. What is the recommended dose of IVIg as compared to age?

Children can tolerate a higher dose of IVIg and the whole 3g/kg dose of IVIg has been given without side effects as a single infusion. Young adults up to 25 years of age can tolerate 1g/kg as a single infusion. Up to age 50 only 400mg /kg is recommended in one day .

When dealing with above 70 year old patients we recommend not to infuse more then 400mg/kg in one week.

15. What is the right IVIG product for me?

Patients need to understand the differences among the IVIg products, and many factors need to be taken into consideration when deciding which IVIG product should be prescribed. Some examples of the factors include:
Patients with congestive heart failure or compromised renal function may fare better if they receive a IVIg product with a low osmolality and low volume;

Patients who are diabetic should receive a IVIg product containing no sugars;
Patients receiving IVIg with sucrose may be at a higher risk for renal failure; (Need adjustment of concentration). Also patients who have Myositis and high myoglobin levels are at higher risk of developing renal failure while on IVIg infusion.

Patients with immunoglobulin A (IgA) deficiencies should only receive products with the lowest amount of IgA or they could have anaphylactic reactions;

Patients with small peripheral vascular access or a tendency toward phlebitis may want to avoid IVIg preparations with a low pH.
16. Who is a good provider for IVIG?

There are many nationwide providers of IVIG. Please contact us for a good one near you.

17. What diseases is IVIG being used for?

Some of the common autoimmune diseases include Alzheimer's, Narcolepsy, Multiple Sclerosis, Heart Disease, Lupus, forms of encephalitis, CIDP, autism, Transverse Myelitis, Brachial neuritis, Fibromyalgia & Chronic Fatigue Syndrome. (studies are available which show IVIg is effective in these conditions). If you need more info then go the the main page of IVIg on the CIDPUSA web site There you will find links to other pages providing all the details of IVIg.

18. What is a alternative to IVIg?

If you cannot get IVIg there are alternatives available, colostrum is a natural product which also contains IgG and antibodies, the best colostrum would be freshly obtained liquid. Weaker forms will be the powder forms.

19. Can infections be transferred from IVIG?

IVIG has been involved in the spread of some cases, then FDA took steps to and IVIg producers followed instructions and No further cases of Infection have been reported since the year 2000.

20. Can a cold vial of IVIg be infused in a patient ?

Yes this is often done but cold IVIg infusion can causes problems, like blocked IVIg filters, more IVIg reactions, it is best to give IVIg at body temperature.

21. What diseases is IVIG approved for use by FDA, (MEANS YOUR INSURANCE CANNOT DENY THIS IVIG TREATMENT)

the US Food and Drug Administration has approved the use of IVIG for the following 6 conditions:

Primary immunodeficiencies IVIg is approved by FDA
Immune-mediated thrombocytopenia IVIg is approved by FDA
Kawasaki disease IVIg is approved by FDA
Hematopoietic stem cell transplantation in patients older than 20 years (Gamimune-N only) IVIg is approved by FDA
Chronic B-cell lymphocytic leukemia IVIg is approved by FDA
Pediatric HIV type 1 infection IVIg is approved by FDA.

I’m finished the drip and I’m feeling really good.

I will be on

a Steroid IV Drip at home for the next three days starting 06/21/2011, this should help with the rejection. I will keep you all posted as to how I’m doing and if not me my sister Virginia. As of today 06/23/2011 I’m finished the drip and I’m feeling really good. Dr. Lee was happy to see the numbers were up in my Spirometer test scores were in good range. He put me back on Cellcept or the name Mycophenolate 500mg twice a day this pill helps to prevent rejection. Also my doctors’ visits are now every three weeks now. Also we will be starting back with IVIG Drip next month, LIVIg is a plasma product formed by taking antibodies from about 20,000 donors and mixing them together. IVIg has proven effective in several immune system disorders, including nearly all autoimmune conditions even CIDP and GBS. The sooner you can treat the patient with IVIg the better the results. There is a window of opportunity usually within the first 18 months during which IVIg administration is ideal. The longer you wait to treat with IVIg the longer it will take for IVIg to work. After being exposed to toxins and poisonous chemicals including carbon monoxide the body's immune system may mount an attack on the body. This autoimmune attack can be reduced by IVIG. Last month I broke out into a an allergy reaction Dr. Lee then put a stop to all the next treatments , so I spoke to Dr.Lee and told him I did take my Benadryl or an aspirin before the treatment until twenty minutes in the drip which I took reasonability for that mistake. So now will continue next month as schedule for the next seven months.Thank you Dr.Lee.