Moving away from home back to home in one life time. I’m Ready to do it.

Moving away from home back to home in one life time.  I’m Ready

 

I'm starting my life over, how many people can say that about taking up Country accommodations. I don't live too far away from home (about a four hour drive  from here or so that sounds funny  saying that from the state of Virginia, when I was born in Philadelphia I lived there until I was Eighteen years old,  lived in Delaware for the past 33 years and all most 20 years in the same house..)  Our parents did their best to control us, but it didn’t work! We always had the upper hand (Just Joking Dad Oh did I mention Una dads girlfriend for past ten years one of the nicest lady in Virginia.  I have three wonderful sisters Virginia (Ginny), Lisa & Barbara and two great brothers Roy & my brother Douglas and not to Mention 6 nieces and 5 nephews 9 great nephews 4 great nephews but now,  where I’m moving to  is where my father (Roy) was born is a totally diffident life compared to being up north in Pennsylvania Delaware and Maryland. More convenient in getting thing done at a nice pace here in VA as well as enjoying a new friendship with someone you just met. I thought that it was important for me to do this  while  my nerve  is up to move that far. I feel like a teenager like leaving the nest all over again. Moving seems so much fun like selling everything I own and starting over fresh, and I’m scared that everyone will think I’m a weirdo and laugh at me that’s ok at least they would have a good laugh on me- I’ll make  new friends in Luray and Page County & the Shenandoah valley and my shared accommodation (32 of us sharing an apartment one store building in Stanly Virginia). The fact that I’m different also makes it harder because I’m not fully understood  on my sexual orientation , and I’m a nervous wreck that my apartments dweller  will be homophobic; I’m not sure how to tell them, should I tell them and give them all heart attacks immediately? Or wait until I get to know them better, I’m sure in time they will figural it out. Any advice on moving away from home in Delaware would be greatly appreciated. Will miss you all in Delaware, I hope if ever in Virginia you stop by the town of Stanly and look me up, I will never forgot  the staff at the University of Pennsylvania Hospital who gave me excellent care and a normal life back Thank you Dr.Lee and your staff. I'll be back every few months to see Dr Lee . and you thought you where rid of me  LOL. Someone asked me if I had to do this again would I ?  Yes I said you bet you your sweet bottom I would, the staff at Penn you are all the best and thank you for letting me start my life over in Virginia and letting me live life again.

People using People

I noticed a strange facts about myself and other people in need of help. I have this big need to help people out when in need. Usually I give up something for this. But when people start to use me later and behave like I am their lacquey or something. Therefore my need for helping decreases and the need to become independent from them increases. It is difficult, because I sacrificed something that I needed to become independent. And even if I become independent after some time, the need for helping increases again, but I’m afraid of becoming a lacquey again. It’s like I imagine myself helping people in need and later these people turn me in their slave and I wake up from my dream, look around and see that reality is not like this, people are not as kind as I though. It ruins everything I believe in a person, and makes me a worse when they ask for my help because I’m always there for that person who always needs something for them self’s only, all I’m asking is give a little back in return. Just because I wrote is article like this does not mean it’s me, Just so you all know that.

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.

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.

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.

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.

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.

A Small set back

The two main complications of transplant surgery are organ rejection and infection. So what that means is on a scale from 0 to 4, I’m at a 2 for rejection. Since my body recognizes the new lung as a foreign object, it will normally try to get rid of it or "reject" it. Anti-rejection drugs taken after surgery help prevent a rejection episode, but they also inhibit part of the immune system. Since the body's ability to fight infection is decreased, transplant recipients are more prone to infections. Starting Tuesday, Wednesday & Thursday I will be on Solumedrol 1000mg a Steroid IV Drip at home, 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.

Fathers Day!!!

Father's Day is a day of commemoration and celebration of Dad. It’s a day to not only honor your Dad, but all men who have acted as a father figure in your life - whether as Stepfathers, Uncles, Grandfathers, or "Big Brothers." So make sure to call him or send a card or even cook for him after all he is your father or take him out for the day to a movie and yes even fishing. Always remember you have only one father. Enjoy the time you have with your Father after all he is your only Father.  And here is to my Dad Happy Fathers Day.

Father's Day is celebrated in the US on Sunday, June 19, 2011. Other Countries celebrate throughout the year.

The Cost

The average cost for a double-lung transplant, in which both of the patient's original lungs are replaced with the donor lungs, is about $650,000. In addition to the initial costs of lung transplant, patients also incur annual costs for follow-up care. In addition to the initial costs of lung transplant surgery, patients also incur annual costs for follow-up care and prescription medications. The immunosuppressive drugs, which are required on an on-going basis to prevent the transplant recipient's body from rejecting the donor lung or lungs, can cost up to $30,000 per year. Lung transplant recipients also incur the cost of follow-up doctor's visits and tests to make sure the transplant is working correctly, and to continue to treat any related or underlying
Medical costs include:

insurance deductibles
insurance co-pays
pre-transplant evaluation and testing
surgery
fees for the recovery of the organ from the donor
follow-up care and testing
additional hospital stays for complications
fees for surgeons, physicians, radiologist, anesthesiologist and recurrent lab testing
anti-rejection and other drugs, which can easily exceed $2,500 per month
rehabilitation
Non-Medical

It's been Four months since my Lung Transplant.

My Lung Transplant Success Story

Richard Berry, who received a double-lung transplant at Penn Medicine in February 2011, shares his thoughts and experiences about his surgery.

I received a great birthday present this year: a double-lung transplant at the Hospital of the University of Pennsylvania on February 11, 2011.

Every day, I am thankful to the donor’s family for giving me this second chance at life. I’m getting better and stronger each day, but like any long and rough path to recovery, there have been a few bumps in the road.

Since my surgery I have lost 47 pounds. I'm down to about 26 pills a day from the 35 pills per day with which I started. As of today, I’m breathing 97 to 100 percent room air without any supplemental oxygen. I’ve even joined a gym and go a few days a week to keep the weight off and build my muscles back up.

It’s amazing to be able to breathe without feeling exhausted. Before the surgery, I was using almost four liters of oxygen a day and could hardly walk. I had to quit working and I stopped going out. I went to a wedding once and had to leave the reception early because I ran out of oxygen and felt like I couldn't catch my breath. I panicked at the thought of not being able to breathe without the oxygen — it was so much a part of me.

Since my double-lung transplant at Penn, I no longer need the oxygen tanks to breathe. I don’t even have any oxygen machines in my home anymore. When I did my first lung capacity tests after the transplant I almost cried. It took so little effort.

Along with the physical aspects of my illness, I also had to deal with the emotional issues faced by many people who have transplant surgery. I think it was harder to find a friend when I was ill. The minute I told someone I had COPD or that I was having transplant surgery, I never heard from them again. That really hurt me.

Today, I tell everyone how great my experience was at Penn. I spent three months in and out of the Hospital of the University of Pennsylvania, in the intensive care unit and rehabilitation center. I’m so grateful for every opportunity I have been given. Penn’s multidisciplinary approach to transplant means all departments interact with each other, working together as my care team.

I couldn't have done this without my friends and family to support me and my faith to get me through each day. And I can't say enough about my transplant doctors and the team at the Hospital of the University of Pennsylvania who provided excellent care and gave me my life back.

If someone were to ask me if I had to go through this again would I? My reply would be: "You bet your sweet bottom I would!"

.

Thank you Everyone.

Wow my NEW Life has started! That sounds so cool! The best things so far (it's only been an 8 weeks or so) since I have received my new lungs. I have so many people to Thank for helping me get through this that I am not sure where to start but I will do my best. First I have to say have Thankful I am to the donor and his/her family for making the choice to be a donor. Not only have I received a second chance at life but so have other people. Next, I want to thank everybody at the University of Penna for taking such good care of me. I also Thank God, for the Doctors who performed the surgery who made it possible for me to breathe without oxygen or inhalers. Belinda once told me “that it takes a whole TEAM of people to complete a Transplant” I didn’t really understand that statement at the time but now I really do. There was so many people involved in my recovery that it is almost impossible to Thank and tell them how grateful I am to each and everyone of them.


I don’t want to forget my family who has been by my side since that phone call came in for the transplant. Virginia you are “My Angel” -- I can't say enough about how important you to me. Thank you. Dad -- You always make sure that we as a family can get through anything. We had such special times in the hospital. Thank you. Douglas and Christen Doug you are my soul Brother. You took such good care of me. You love me, no matter what. Thank you. Roy -- Thank you for being there for all of us, and loving my sister so much. Thank you. Lisa and Barbara-- There are no words to tell you how much I love you, and your loyalty and you’re never ending support of me and to our whole family. Thank you, to the love of my life. Linda at BCBS -- You have been more than a friend, you took care of me, and keeping me on my feet, and provided me with the meaning of true friendship. Thank you. To the two Donna’s who came to see me in the hospital – You both showed never ending support my entire life, thank you for showing me the way, and providing such love and support to me and my family, and to Francie and Grant for coming up to Penn also, and for bring me Milk Shakes . Thank you!! .

New lungs breatheing easier on my Birthday!!!

It’s been three weeks since I successfully underwent a Double lung transplant, Prior to the transplant, I’ was using 80 to 90 percent oxygen regularly. Today I’m able to function with absolutely no oxygen equipment at all. In addition, I’m able to walk and get around much better than before. The improvement is evident each day as I slowly regains my strength. Our family is especially appreciative of the many prayers, words of encouragement and support we’ve received from friends and customers these past year and five months. We would also like to thank the family of the unknown lung donor. While we do not have any details regarding the donor, we do know that two lives were saved as a result of this gift. Both Myself and another patient received the gift of life from this one unselfish donor., please consider signing up to be an organ donor. Not everyone is as lucky as Myself in receiving a vital transplant. About 18 people die each day in this country because there are not enough organs available for transplant. For more information on organ donation, visit www.organdonor.gov. While this success of my transplant is great news for all of us, my journey continues with the possibility of my body rejecting my new lungs . I’m being closely monitored and receiving anti-rejection medication on a daily basis. Again, thanks to everyone for your prayers! We love you all and we never could have made it on this journey without all of your support! I  wish thank all my brothers  and sisters  and many many friends .I love you all.

The Hydock ”s and Berry’s… Roy, Virginia ,Barbara, Lisa and Douglas.

The Lung Transplant Waiting List

The Lung Transplant Waiting List (I made the List)

You will be placed on the lung transplant waiting list after we complete your evaluation and after your insurance approves your transplant. We will send you a letter stating that you have been added to the list.
Your name, blood type, body size and test results will go into a national database at UNOS (the United Network for Organ Sharing). UNOS directs who can receive deceased (non-living) donor organs throughout the United States.You will receive a “lung allocation score.” This score shows how serious your medical condition is. Scores can range from 0 to 100. Most patients on the waiting list have scores between 30 and 60. Patients with the highest scores move toward the top of the waiting list.You must return to the Transplant Center at least every six months to repeat certain tests. We will use you test results to update your score. If you don’t have the tests, your score may go down to 0.The amount of time you will wait for an organ depends on your score, blood type and body size. You may wait a few days, several months or even years.Your donor Your new organs will be “matched” according to size and blood type. They must fit into the body about the same as the original organs.There are two types of donors – deceased donors and living donors.Deceased donors Deceased donors are people whose organs are donated soon after they die.You will not be given personal details about your deceased donor. If you and your family wish to express your thanks, you may write a letter to the donor’s family. Do not include your name or other personal details. Your nurse coordinator will forward your latter to the donor’s family through LifeSource, our local agency that handles organ donation.There is very small risk of getting a disease form a deceased donor (such as HIV or hepatitis). All donors are tested for disease, but some diseases may not show up at the time of testing.Living donors The waiting time or organs from deceased donors can be long. If you are on the waiting list, have severe lung diease and are not expected to survive the wait time, you may be considered for a living donor lung transplant. You may wish to discuss this with your tansplant coordinator.

Thank you BCBS of Delaware!!

I want to share my experience that I have had with BCBS with everyone. If you have a choice of BCBS of Delaware you should chose them. I have never been covered under anyone else except employer program (ugh) and I LOVE BCBS. (Well beside the fact that they are still a good insurance company). They are great with processing claims. They send you (promptly) a statement that shows who they paid and how much, and also how much that provider is allowed to bill you. If there are mistakes (which I have only had a few, and it was the hospital’s fault), they are super quick to correct them. Not once have I had a conflict with them. In the last five years since I’ve had COPD, BCBS has been there for me. They’ve kept my medical bills as low as possible and referred me to a better hospital in Pennsylvania for my lung transplant so I would not have extensive medical expenses. I have the best case workers at BCBS and I have faith that they will do what is best for me. They have really helped me through the process of this challenge in my life. I thank you both Lynda C. Shrom Transplant Case Manager and Terry Ward at BCBS of Delaware you are all simply the best.

I made it!!!!

I had my 3 month visit at the U of PA. today and I am very encourage that I will be put on the list within the next couple of weeks. Ginny came with me and we must attend a Transplant Workshop in 3 weeks then providing everything goes well he will be placed on the list!!!! Once I have the transplant the sad news is Ginny will have to move in for a few week to help with my recovery.. God help me!!! Not sure if I can survie that one... I have already prepare the spare room for her by giving her a lovely twin bed LOL.

No cure for COPD

There is currently no cure for COPD, although there are various treatments and/or options that can help reduce symptoms and prevent complications. The first step in COPD treatment is to quit smoking and learning to avoid lung irritants which can worsen the condition.In addition to quitting smoking, medications to help breathing such as bronchodilators, anticholinergic drugs, or corticosteroids may be prescribed. In some cases, where COPD is severe, supplementary oxygen may be beneficial. Oxygen is provided from an oxygen cylinder or concentrator and administered through oxygen mask or nasal tubing. Lastly, some patients with COPD can benefit from surgery where some of the damaged tissue is removed, allowing the healthy tissue to work better.

Natural Remedies
One of the common symptoms of COPD is the build up of excessive chest mucus and for this there are a number of homeopathic remedies that can help. Kali mur is one such ingredient and it is well known for its beneficial affects of the respiratory system and its ability to ease wet coughs. Similarly, Kali sulph is excellent at naturally treating phlegm coughs and sinus congestions, as well as reducing inflammation of the mucous membranes. Kali bich also works on soothing irritated mucous membranes, especially in the lungs, and helps loosen thick chest mucus.

Will know the test results on Monday the 10th of January!!

I will be going back to the University of Pennsylvania on January 10th to have a cat scan done on my lungs. This test will show how far my COPD has progress and what stage I am in with the COPD. It will also give the Doctors a better understanding of my COPD and they will make the decision to put me on the waiting list for the for a bi lateral lung transplant.

I should know from the Doctors of University of Pennsylvania hopefully by 3:30pm if I qualify or not. I know if I do qualify and have the operation, the road to recovery is long and I will need the support of my family and friends to get me though it. I am hoping that if I qualify it will be worth it and maybe then I will be able to breathe normal again.

Say a special prayer for me and for the doctors who are making a very life saving decision.

What Causes Cough in COPD?

A chronic cough that produces sputum or phlegm is a common sign of chronic obstructive pulmonary disease, or COPD. COPD is a lung condition that features problems with clogged airways and breathing difficulties. The condition is brought on by a combination of an excess secretion of mucus and an inflammation of the breathing airways. A chronic cough is often the first symptom noticed by people with COPD. How Your Respiratory System Works
Your respiratory system cleans itself and keeps you healthy by filtering out dust and other foreign particles inhaled while you are breathing. A protective layer of mucus covers the walls of the respiratory system. The mucus traps harmful substances, making it easy for the body to get rid of them. Tiny hairs known as cilia lining the walls move back and forth, pushing everything toward the nose and mouth where they can be expelled with a noisy burst of air. This is the cough mechanism in action.
COPD - Beyond Inhalers Learn the secrets of COPD treatment pulmonary rehab to feel better NOW www.breathebetterforlife.com
Sponsored Links
What Smoking Does
Smoking overwhelms your body's normal ability to clear out toxins. According to the Merck Manual, cigarette smoke is the main cause of COPD. The many hazardous substances in cigarettes irritate the airways and create inflammation. The lungs produce an overabundance of mucus, and the walls of the lungs become thick and swollen. Smoking also injures the cilia in the lungs and impairs their ability to move out the extra mucus and foreign particles. The mucus pools and clogs the lungs. The narrowed passageways make it difficult to breathe.
Treatment for Coughing and COPD
COPD causes permanent and progressive damage to the airways. The disease is treatable, but there is no cure. However, quitting smoking will slow the progression of the disease and reduce the coughing. If the condition progresses unchecked, the repeated coughing may become severely disabling. It will eventually take longer to recover from the attacks, decreasing the quality of life. Treatment of COPD includes drug and oxygen therapy, smoking cessation, exercise, enhancement of nutrition and pulmonary rehabilitation.