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Monday, August 30, 2010

Transplant part 5 (Finding Donor's)

(I got this information for all 5 of these blogs from the Cleveland Clinic's website regarding their transplant program.)

Finding an Organ Donor
After your health care provider has determined you are a good candidate for a lung transplant, the Lung Transplant Team will help you begin the search for an organ donor.

Waiting list
Once you are eligible for a lung transplant, the Northeast Ohio Organ Procurement Agency (known as LifeBanc) enters your name and blood test results on the United Network for Organ Sharing’s (UNOS) computerized national waiting list. This waiting list assures equal access and fair distribution of organs when they become available through organ donation.

When a lung becomes available for transplantation, it is given to the best possible match, based on blood type, tissue (HLA) type, crossmatch compatibility, the length of time the recipient has been waiting and the number of lungs the recipient needs. If a perfect match (six antigen match) is identified through the national list, the recipient matching the donor will be notified.

Where does the new lung come from?
Donor lungs are located through UNOS. The donor may have recently died or be brain dead, which means that although the donor’s body is being kept alive by machines, the brain has no sign of life. Donors give their permission for organ donation before their death; the donor’s family also must give consent for organ donation at the time of the donor’s death.

An organ recipient and donor must have compatible blood types and similar body sizes. At the time of death, the donor’s lung is completely removed, cooled and stored in a special solution for organ donation. Immediately after the donor’s lung is removed, it is transported to the recipient’s transplant center where the transplant takes place as soon as possible.

Many people who are waiting for transplantation have mixed feelings because they are aware that someone must die before an organ becomes available. It may help to know that many donor families feel a sense of peace knowing that some good has come from their loved one’s death.

What blood tests are performed to identify a compatible donor?
The greater the blood compatibility shared by a donor and the recipient, the greater the chance of a successful transplant.

ABO Blood type
First, a simple blood test is performed to determine the blood type of the donor and recipient. Here’s how your blood type should be compatible with your potential donor’s blood type:

•If you are blood type A, your donor should have blood type A or O.
•If you are blood type B, your donor should have blood type B or O.
•If you are blood type O, the donor must have blood type O. (A person with blood type O is called a universal donor because he or she can donate to people of all blood types.)
•If you have blood type AB (universal acceptor), your donor can have blood type AB, A, B or O.
Tissue typing
Tissue typing evaluates the compatibility or closeness of tissue between the organ donor and recipient. An HLA (human leukocyte antigens) blood test is used to determine tissue type and help find the best genetic match for you. In an HLA blood test, the tissue typing lab can identify and compare information about you and your donor’s antigens (the “markers” in cells that stimulate antibody production).

Continuing research is being performed to develop medications and treatments that can boost the success rate when the tissue match is not very close.

In crossmatching, your blood and the potential donor's blood are placed together in a test tube and examined to see if there is cell death.

If all the cells survive without death of the donor's cells, there is a negative crossmatch, which is considered a good result. If the cells of the donor begin to die, a positive crossmatch results and the potential donor is disqualified. By performing this test, the Lung Transplant Team can determine if the lung will be accepted once the actual transplant takes place.

How long will I have to wait before I receive my transplant?
Locating a suitable donor takes time. It is impossible to predict how long a wait there will be before a lung becomes available. The average wait is about one year; however, it’s possible the wait could be from a few days to many years. Some people may have to wait longer than others for their transplants because their blood and tissue types may be less common, so it takes longer to find a compatible match.

Even when a donor is located, the surgery may not take place. If there is a problem with the donor lung or if you have an infection, the surgery cannot be performed. About 30 percent of all lung transplants are canceled the first time; if this happens, you must wait for another donor to become available.

Does it matter who the donor is?
You do not need to be concerned about the gender, age or race of your lung donor. You will not develop any of the donor’s characteristics. Remember, the lung that you will receive has been carefully matched to your body size, tissue and blood type, and is the best suitable match for you.

Transplant part 4 (Recovery, Follow up visits)

(I got this information for all 5 of these blogs from the Cleveland Clinic's website regarding their transplant program.)

Recovery From Surgery at Home
View a video on the discharge process.

Ten Tips for a Healthy Lung Transplant Recovery
1.Take all of your medications exactly as prescribed.
◦If you have any pre-transplant medications left, do not take them unless otherwise instructed by your health care provider.
◦Keep a list with you of all your medications and their dosages.
◦Do not take any other medications (over-the-counter or prescribed medications) unless you talk to your doctor first.
◦Don’t stop taking your medications unless you talk to your doctor first.
◦Never double the dose of your medication.
◦Do not keep outdated medication or medication that is no longer needed. Throw old medicines away or bring them to Cleveland Clinic and give them to your transplant coordinator.
◦If you store your medications in a container, label it with the medication name, dose, frequency and expiration date.
◦Keep your medications in your carry-on luggage when you travel. Do not pack your medications in a suitcase that is checked, in case the suitcase is lost.
◦Take extra medication with you when you travel in case your flight is delayed and you need to stay away longer than planned.
◦If you have any pre-transplant medications left, do not take them unless otherwise instructed by your health care provider.
2.Keep all of your scheduled appointments with your physician or transplant coordinators.
3.Call your physician or transplant coordinator if you have any questions or concerns or if you have:
◦A fever over 100°F.
◦Flu-like symptoms such as chills, aches, headaches, dizziness, nausea or vomiting
◦Cold symptoms such as a cough, sore throat or runny nose
◦New pain or tenderness around the transplanted lung
◦Increased shortness of breath
◦Flu-like symptoms such as chills, aches, headaches, dizziness, nausea or vomiting
4.Do not ignore any signs or symptoms that you are experiencing. Always call your physician or transplant coordinator if you have any unusual symptoms or symptoms that cause you concern.
5.Have your blood drawn promptly, as recommended by your transplant physician or transplant coordinator.
6.Report your lab work results to the Transplant Center promptly.
7.Follow your recommended dietary plan.
8.Follow your recommended exercise plan.
9.Perform your pulmonary function tests every day as recommended.
10.Avoid being around anyone who has an infection.

Follow-up Visits
After you go home, it will be your responsibility to seek consistent and proper medical care to follow-up your lung transplant. It is very important that you maintain your follow-up appointment schedule as recommended after your lung transplant.

Your follow-up appointments play a vital role in effectively monitoring your progress, as well as your lung function and your response to the medications after your lung transplant. These visits also provide you the opportunity to ask questions about your lung transplant recovery.

The role of your local physician in your lung transplant recovery
Your local physician is the doctor who cared for you before you came to Cleveland Clinic for your lung transplant. Your local physician will be notified when you receive your lung transplant and when you are discharged from the hospital.

The Lung Transplant Team will work with you and your local physician to coordinate your care and adjust your medications as necessary.

If you are sick, you should first see your local physician in his or her office, or if necessary, you should go to the nearest emergency room. Your local physician will perform an examination, obtain your current laboratory test results and order any other necessary tests. Your local doctor should discuss your illness and treatment with Cleveland Clinic Transplant Team, as it relates to your lung transplant.

Transplant part 3 (getting the call, Transplant meds, and instructions to take them)

(I got this information for all 5 of these blogs from the Cleveland Clinic's website regarding their transplant program.)

Getting the call
When a lung has been identified for you, a transplant coordinator will contact you by telephone or pager. Remember, this could be any time of the day or night.

As soon as you receive the call, do not eat or drink anything (not even water).

Your stomach must be empty before surgery.

It is normal to feel both excited and scared. Because of the natural confusion caused by the need to get to the hospital quickly, you may feel rushed and confused. You’ll be glad you planned ahead to get to the hospital with minimal delay, knowing you have left your home in order.

Getting to the hospital
As soon as you receive the call, bring your suitcase that you’ve packed ahead of time and come directly to The Cleveland Clinic. Even though the donor lung receives special handling, there is a time limit.

If you live more than 1½ hours away from the hospital, the transplant coordinator will arrange transportation for you and one family member. If you live less than 1½ hours away, you must have someone drive you quickly but carefully to the hospital.

When you arrive at the hospital, go to Desk G-50 where you will be admitted.

What happens before surgery?
You will wait in the Transplant Unit until the final results of the crossmatch are determined. If the crossmatch results are negative (or compatible), you will be prepared for surgery (generally within a few hours of your admission).

Just before surgery, you will be asked questions, and tests will be ordered to make sure you are in the best possible physical and emotional condition for the transplant.

If you have a cold, sore throat, fever or any type of infection, it is very important to tell the nursing staff. It also is very important to tell the staff about any other problems you may have.

A complete physical, chest X-ray, blood tests and an electrocardiogram (EKG) will be completed, and the results will be reviewed by your doctor.

While you are being prepared for surgery, one of The Cleveland Clinic transplant surgeons will remove and prepare the donor lung.

If you have a significant medical problem or any signs of infection, or if the donor lung is determined to be unacceptable, the surgery will be canceled. It is better to wait until another lung becomes available than to risk a transplant when you are not physically ready.

Before you go to the operating room, you will be asked to:

•Wear a hospital gown
•Empty your bladder
•Remove your dentures or partial plate
•Remove your eyeglasses or contact lenses
•Remove jewelry, makeup, nail polish and hair pins
To prepare you for the transplant surgery, the incision area will be shaved (from your chest to your knees) to prevent infection. You also will have an intravenous tube (IV) inserted in your arm to deliver fluids and medication. Before going to the operating room, you will be given a sedative to help you relax and make you sleepy.

What happens during surgery?
An anesthesiologist will inject general anesthesia (pain-relieving medication) through your IV, which will make you go to sleep. After you are asleep:

•A central venous catheter is inserted into a vein in your neck or groin. This type of catheter is used to deliver fluids, nutrition solutions, antibiotics or blood products directly into your bloodstream without frequently having to insert a needle into your vein.
•A tube is placed in your mouth that goes down your throat and into your windpipe (trachea) to help you breathe. The tube is attached to a ventilator that will expand your lungs mechanically.
•You are placed on a heart/lung machine to allow surgeons to bypass the blood flow to the heart and lungs. The machine pumps blood This information is not intended to replace the medical through the body, removing carbon dioxide (a waste product) and replacing it with oxygen needed by body tissues.
•A nasogastric tube is inserted through your nose into your stomach. This tube drains secretions from your stomach.
•A tube called a catheter is placed in your bladder to drain urine.
•The surgeon carefully removes your lung and replaces it with the donor lung.
Where can my family wait?
Family members and friends are invited to wait for you in the Family Waiting Lounge until the surgery is completed. This waiting area has a play room for small children, a television, reading materials and comfortable chairs.

The surgery lasts 6 to 12 hours. The Cleveland Clinic has several cafeterias and restaurants, a gift shop and a Health Information Desk that may be of interest. We ask visitors to sign in and out of the waiting area, and provide a phone number so we can contact them if necessary.

A member of the transplant team will meet with your family in the Lounge to keep them updated on your condition. Your family will be notified when the surgery is complete.

Transplant Medications
The most important step in maintaining your health after your transplant is to take your medications exactly as prescribed. These drugs help prevent rejection and infection, and must be taken for the rest of your life.

•What will I need to know about taking my medications?
•Will the drugs I’m taking cause any side effects?
•Does it really matter if I miss a dose?
•What if I forget to take my medications at the scheduled time?
•Dose changes
•Other medications
•Can I get financial assistance to help pay my medication expenses?
•Will any new medications be available?
•General Medication Guidelines
•Questions to Ask about your Medication


Click here to view a video about your medications.

What will I need to know about taking my medications?
Before any medication is prescribed, your physician will ask you:

•If you are allergic to any medications
•If you are currently taking any other medications (including over-the-counter medications)
•If you have problems taking any medications
The type of medications, the dosage and side effects may be different for each patient. While you are in the hospital, the Lung Transplant Team will teach you about your medications and give you information sheets describing each drug and how to take it. Before you go home, the Transplant Team will make sure that you know:

•The name of the drugs prescribed and their action
•Please note: All medications have two names—the generic or chemical name (such as furosemide) and the brand name (such as Lasix). The Transplant Team will tell you both names of the medications.
•The dosages, when (the time of day) and how to take the medications
•The side effects and how you can treat or prevent them
Your family members are also encouraged to learn about your medications.

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Will the drugs I’m taking cause any side effects?
Some of the drugs you are prescribed may cause unwanted side effects such as weight gain, acne or excess hair growth. Despite these side effects, never change the dose or stop taking your medications without first checking with your physician.

Many of the side effects can be controlled. Your doctor may adjust your dosage or offer other suggestions for managing the side effects. Keep all appointments with your doctor and the laboratory so your response to the drug can be monitored.

The individual drug information sheets contained in this notebook describe the common side effects of each drug and how to manage them.

Call your doctor or transplant coordinator if you become sick and vomit soon after taking your medication. Do not take a second dose without first talking to your health care provider. If you have diarrhea for more than one day, c

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all your doctor or transplant coordinator. Also call if you have any other symptoms that are persistent or severe.

Does it really matter if I miss a dose?
Yes. It is very important to always follow the instructions for your medications every day to prevent rejection. The third major cause of transplant failure results from not taking anti-rejection medications as prescribed.

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What if I forget to take my medications at the scheduled time?
If you miss a dose of your medication at the scheduled time, don’t panic. Take it as soon as you remember. However, if it is almost time for your next dose, skip the missed dose and return to your regular medication schedule.

As you begin to feel well, it may be easy to forget to take your medications, but always remember that your body never stops requiring the transplant medications. By taking your medications consistently and following-up with your physician routinely, you are assuming the most important job after your transplant.

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Dose changes
Your physician will periodically change the dose of your medications. The dose may be changed because you are having uncomfortable side effects or because blood test results indicate a different dose is needed.

You will receive a medication dosage record to write down your medications and dosages. Every time your physician tells you to change the dose of your medication, cross out the previous dose and write in the new dose. (Use ink, not pencil, and do not erase previous information so you have a record of your earlier doses.)

Remember, never change the dose of your medication unless your physician has told you to.

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Other medications
Never take other medications without first talking to your physician. This includes over-the-counter drugs (those you can buy without a prescription). Some over-the-counter drugs include aspirin, ibuprofen (Advil, Nuprin), vitamins, cold medicine, antihistamines, antacids, laxatives and sleeping pills. Some over-the-counter medications may decrease the effectiveness of your transplant medications and can cause unwanted side effects.

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Can I get financial assistance to help pay my medication expenses?
Yes. Your health care providers realize your medications are expensive, especially since you must take them for the rest of your life. There are several government and state programs that offer financial assistance for medication expenses.

Please ask your health care provider what programs are available for you. You also can ask to see a financial counselor who can answer questions about insurance coverage and Medicare benefits related to your medication expenses.

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Will any new medications be available?
Exciting developments in drug research are creating new immunosuppressive medications. The Cleveland Clinic Lung Transplant Program participates in new drug studies on a continuous basis. You may be asked to take part in one of these programs after your transplant. All programs are strictly voluntary and have no influence on your transplant status.

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General Medical Guidelines
Note: These are general guidelines. Be sure to ask your doctor or pharmacist for guidelines specific to your medication.

•Keep a list of all your medications and their dosages with you.
•Take your medications exactly as prescribed by your doctor.
•Do not stop taking your medications unless you talk to your doctor first. Stopping your medication too early can cause the illness to return or make it more difficult to treat.
•Do not double the dose of your medication.
•If you miss a dose of your medication at the scheduled time, don’t panic. Take it as soon as you remember. However, if it is almost time for your next dose, skip the missed dose and return to your regular medication schedule.
•Do not keep outdated medication or medication that is no longer needed. Throw away old medicines.
•Store medications in a dry area away from moisture (unless your doctor or pharmacist tells you the medicine needs to be refrigerated).
•Always keep medications out of the reach of children.
•Contact your doctor immediately if you experience any unusual side effects after taking your medication.
•Do not share your medications with others.
•If you store your medications in a container, label it with the medication name, dose, frequency and expiration date.
•Keep your medications in your carry-on luggage when you travel. Do not pack your medications in a suitcase that is checked, in case the suitcase is lost.
•Take extra medication with you when you travel in case your flight is delayed and you
need to stay away longer than planned.
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Questions to Ask about your Medication
Be sure you know the answers to these questions before you start taking any new medication:

•What is the name of the medication?
•Why do I need to take it?
•How often should I take it?
•What time of day should I take it?
•Should I take it on an empty stomach or with meals?
•Where should I store the medication?
•What should I do if I forget to take a dose?
•How long should I expect to take the medication?
•How will I know it is working?
•What side effects should I expect?
•Will the medication interfere with driving, working or other activities?
•Does the medication interact with any foods, alcohol or other medications (including over-the-counter medications)?

Transplant part 2 (preparing while waiting, List of information and possible financial help)

(I got this information for all 5 of these blogs from the Cleveland Clinic's website regarding their transplant program.)

How can I prepare myself while I’m waiting for my transplant?
Waiting for a donor organ can be a stressful experience, especially because the amount of time you’ll have to wait is unknown. There are many things you can do to prepare yourself while you wait for a donor lung to become available. Changing your lifestyle before your transplant will help you adjust after the transplant.

Below are some guidelines to follow.

Take care of your health
•Try to stay as healthy as possible by carefully following the recommendations of the Lung Transplant Team.
•Take your medicines as they are prescribed and notify your transplant coordinator if antibiotics are prescribed, if your steroid dose changes or if you are hospitalized for any reason.
Follow the dietary guidelines provided by your dietitian
•Weight management is very important while waiting for your transplant. Your dietitian will recommend a weight range for you to maintain.
•We require that you quit drinking alcohol, especially if you drank heavily in the past (two or more drinks per day, including beer and wine).
•Perform your breathing exercises and maintain your exercise program, as directed by your physician.
•Stop and rest if you experience any discomfort, shortness of breath or chest pain during any activity.
•A physical therapist can work with you to plan and develop an exercise program that will give you the greatest benefit before and after transplantation.
•Continue your enrollment in a local pulmonary rehabilitation program and remain firm in your commitment to the program.
Keep all of your appointments with your health care providers
Until your transplant, you will meet with the transplant pulmonologist and transplant coordinator every two months in order to evaluate your overall health.

•Make sure you are available
•It is important for the Lung Transplant Team to know how to get in touch with you at all times.
•Your Transplant Team should have the telephone numbers of where you can be reached 24 hours a day, as well as the names and telephone numbers of family members who can reach you.
•You must obtain a pager or cell phone so we may contact you immediately should organs become available for your transplant.
•We encourage you to purchase a telephone answering machine with remote access so you can check your messages frequently when you are away from the telephone.
•Be sure to inform us of your pager and/or cell phone numbers.
•If you plan to be out of town (even for one day), give a phone number to the transplant coordinator.
•Your transplant coordinator may recommend that you stay within a certain geographic range.
Be prepared with transportation
•When you are placed on the organ waiting list, your first responsibility is to plan how to get to Cleveland Clinic as soon as you are notified that a lung is available.
•Prepare yourself for this call by making the necessary arrangements for transportation well in advance.
•If you live less than 1-1/2 hours away from Cleveland Clinic, the transplant coordinator on call will arrange transportation for you and one family member.
Be prepared by packing your bags in advance
•You'll need to be ready to leave as soon as you get the call that a lung is available.
•Be sure to include your insurance information and a 24-hour supply of medication.
•If you need oxygen, make sure you have enough to get you to and from the hospital (in case the surgery is cancelled).
•All necessities, such as pajamas and bedding, are provided and laundered for you. However, you may prefer your own pajamas, slippers, robe or other comfortable clothing (provided you have someone to do your laundry for you).
•Please bring your toothbrush, toothpaste and any other toiletries you may need.
•You should expect to stay in the hospital 2 to 3 weeks.
•Because the hospital is not responsible for lost or stolen personal items, please do not pack valuable jewelry, credit cards, checks or large amounts of cash.
•You also may want to pack a book, magazine and a family picture or other comforting reminder of home to keep at your bedside.
Learn all you can about the transplantation process and ask for support
•Ask your social worker about support groups and other resources so you can receive more information and learn about other transplant recipients' experiences.
Occupy yourself
If possible, don't turn your back on your favorite activities. You can spend the time doing what you enjoy. Now may be a perfect time to learn a new hobby or continue your old hobbies. The time will pass quickly if you spend it doing things you enjoy.

List of possible expense or travel help

American Society on Transplantation
P.O. Box 1709
Alexandria, VA 22313
Ph: 800.ACT.GIVE (800.228.4483)


Children’s Organ Transplant Association, Inc.
2501 COTA Drive
Bloomington, IN 47403
Ph: 800.366.2682

Division of Organ Transplantation
Health Resources and Services Administration
5600 Fishers Lane, Room 11A-22
Rockville, MD 20857

Transplant Recipients International Organization
2117 L Street NW, Suite 353
Washington, DC 20037
Ph: 800.TRIO.386
email: triointl@aol.com

National Transplant Assistance Fund (TRIO)
3475 West Chester Pike, Suite 230
Newtown Square, PA 19073
Ph: 800.642.8399 or 610.353.1616
Fax: 610.353.1616
email: NTAF@transplantfund.org

Organ Transplant Fund, Inc.
1102 Brookfield, Suite 202
Memphis, TN 38119
Ph: 800.489.3863 or 901.684.1697

Partnership for Organ Donation
Two Oliver Street
Boston, MA 02109
email: info@organdonation.org

Second Wind Lung Transplant Association, Inc.
300 South Duncan Avenue, Suite 227
Clearwater, FL 33755-6457
Ph: 888.855.9463 or 727.442.0892
email: heering@2ndwind.org

Transplant Foundation
8002 Discovery Drive, Suite 310
Richmond, VA 23229
email: otfnatl@aol.com

Transplant Recipients International Organization (Cleveland Chapter)
P.O. Box 210053
Cleveland, OH 44121
Ph: 216.473.8979


United Network for Organ Sharing (UNOS)
Ph: 800.24.DONOR (800.243.6667)

Other Resources
Angel Flight America
P.O. Box 17467
Memphis, TN 38187-0467
Ph: 901.332.4034 or 877.858.7788

Cystic Fibrosis Foundation
6931 Arlington Road
Bethesda, Maryland 20814
Ph: 301.951.4422 or 800.FIGHT.CF (800.344.4823)
email: info@cff.org

Friends' Health Connection
P.O. Box 114
New Brunswick, NJ 08903
Ph: 732.418.1811 or 800.48.FRIEND (800.483.7436)
email: info@friendshealthconnection.org

National Heart, Lung, and Blood Institute Information Center
P.O. Box 30105
Bethesda, MD 20824-0105
Ph: 301.251.2222

Note: Cleveland Clinic does not necessarily endorse the information distributed from these organizations or contained on their websites. This information is for your reference only.


Transplant part 1 (evaluation, screening & tests)

(I got this information for all 5 of these blogs from the Cleveland Clinic's website regarding their transplant program.)

Reported survival rates include percent one month after transplant, 85.8 percent one year after transplant and 64 percent three years after transplant.

Pre-Transplant Evaluation
The pre-transplant evaluation is first performed to make sure a lung transplant is the right treatment for you.

What is a pre-transplant evaluation?
•A pre-transplant evaluation includes a complete physical, meetings with members of the Lung Transplant Team and a series of tests.
•The evaluation may take several visits.
•The pre-transplant evaluation is performed to make sure you are physically able to undergo a transplant.
•The evaluation helps the transplant team identify and treat any potential problems before the transplant, as well as avoid potential complications after the transplant.
Insurance Information
It is the responsibility of you and your referring physician to have insurance approval in place for your screening appointment. Please notify your insurance company of your pre-transplant screening appointment with Cleveland Clinic Transplant Center. Make sure your insurance company will provide coverage for the pre-transplant screening. (Many insurance companies will only provide coverage at specified centers.)

More information about insurance coverage will be provided on the day of your pre-transplant evaluation appointment.

Social Worker
You may see a social worker during your evaluation appointment. Social workers can provide personal support to you and your family throughout the transplantation process. Social workers also offer:

•Counseling regarding lifestyle changes.
•Referrals to community and national agencies and support groups that offer both information and support to transplant patients.
•Information about home care services.
Financial Counselor
You will meet with a financial counselor who can review your insurance coverage for pre- and post-transplant expenses. The financial counselor also can provide information about social security disability, supplemental security income, Medicaid and Medicare.

Lab testing will be completed during your pre-transplant evaluation appointment. This testing will include a nicotine/cotinine blood level. This test indicates whether you are smoking, chewing tobacco or nicotine gum, using inhaled nicotine products, or are exposed to second-hand smoke.

The International Guidelines for Lung Transplant Candidacy require a patient to be nicotine free for six months before undergoing an evaluation for transplantation.

Pre-Transplant Screening
The pre-transplant screening is first performed to make sure a lung transplant is the right treatment for you.

Before your pre-transplant screening
Before your pre-transplant screening, a transplant coordinator will contact you and your physician to gather important information about your medical condition. This information includes:

•Brief medical history, including medications
•Pulmonary function studies
•Computed axial tomography (CAT) scan and/or chest X-ray, if performed in the
last year
•Insurance information
Once this information is received, a transplant coordinator will contact you for a telephone interview to further discuss your past medical history and lung disease.

During the pre-transplant screening
During the pre-transplant screening, you will have several X-rays, laboratory tests and breathing tests (called spirometry tests) to make sure you are eligible for a lung transplant.

The spirometry tests provide information about the extent of your lung disease and how well your lungs function. The tests are not painful, but may be uncomfortable.

You also will meet with a transplant pulmonologist (a staff physician with extensive training and experience in lung disease and transplantation). The pulmonologist will ask you questions about your condition.

The screening generally lasts most of the day. If the results of the screening evaluation indicate you are eligible for a lung transplant, you will be scheduled for a pre-transplant evaluation.

The day of your screening appointment
Your screening appointment day will begin with a series of breathing tests, discussion of your medical history and a physical examination. You also will meet with members of the Lung Transplant Team, including the pulmonologist, transplant coordinator, financial coordinator and social worker.

You may have to answer similar questions with each team member. Please be patient; although the questions are similar, each specialist is concerned with a specific aspect of your health and will gain a different perspective of your lung disease.

Required Tests
Why do I need to have pre-transplant evaluation tests?
Your pre-transplant evaluation includes a variety of medical tests that provide complete information about your overall health. The medical tests help the Lung Transplant Team identify any potential problems before the transplant surgery and avoid potential complications after the surgery.

Although each patient does not have the same tests, most of the tests included in this handout are common for all lung transplant patients. The tests required before the transplant are usually done on an outpatient basis and can be performed at your referring physician’s office or at Cleveland Clinic. Your transplant coordinator will help arrange these tests for you. Please ask your transplant coordinator any questions you have about the tests you will need.

If special instructions are required before any of these tests, you will receive a written form that explains what to do before the tests.

•Blood Tests
•Chest X-ray and CT SCAN
•Lung Tests
•Heart Tests
•Additional Tests For Women
•Other Tests
During your pre-transplant evaluation appointment, the Lung Transplant Team will decide if you will need any additional tests after your appointment. Additional tests can be performed at Cleveland Clinic or in your home community. Your transplant coordinator will help you make these arrangements

What happens after my pre-transplant evaluation?
At the end of your pre-transplant evaluation and after the test results are complete, the Lung Transplant Team will meet to jointly discuss whether or not a lung transplant is the appropriate treatment for you. The transplant coordinator will then notify you of the Team’s decision.

Please understand that abnormal test results may require further investigation. The goal of pre-transplant testing is to ensure that you will be able to undergo the transplant surgery and recover without any significant risk of complications.

If you are approved and are going to be placed on the organ waiting list, the transplant coordinator will tell you what you need to do while you wait for your transplant.

Financial Questions to Ask
If you have been approved for a lung transplant and are going to be placed on the organ waiting list, you will need to prepare yourself financially and clarify your insurance coverage while you wait for your transplant.

The transplant financial counselor and the transplant coordinator are always available to answer your questions and address your concerns, but you will also need to contact your insurance company to clarify your coverage.

The following questions will help you sort out your insurance coverage and help you plan for the expenses of transplantation.

Questions for your insurance company
•What part of the transplant cost is covered?
•How does this apply to my deductible?
•What is the cap on my insurance coverage?
•What happens if my financial coverage runs out?
•How can I cut down on insurance expenses to make sure my coverage lasts as long as I need it?
•How will a change in my job status affect my insurance?
•What would the increase be in my deductible?
•What pre- and post-transplant tests are covered?
•Do I need to go to a certain facility for these tests to be covered?
•Does my plan cover the expenses incurred by my organ donor?
•Are assistive breathing devices covered by my insurance plan?
•Are expenses for food, housing and transportation covered while I wait for my transplant?
•How much coverage will I receive for post-transplant medications?
•What is the co-pay amount?
Questions to ask your transplant financial counselor and transplant coordinator:
•What financial coverage is accepted by the hospital (such as Medicare, Medicaid, private insurance)?
•How much will the transplant cost?
•How much will I have to pay?
Transplant-related expenses to consider:
•Loss of income due to leave of absence from work
•Child care (if appropriate)
•Transportation to and from the Cleveland Clinic Transplant Center for you and your support person
•Emergency visits to the Transplant Center
•Parking expenses for visits to the Transplant Center
•Accommodation expenses or temporary housing expenses associated with being accessible to the Transplant Center (for you and family members)
•Long-distance telephone expenses if relocation is necessary (to be more accessible to the Transplant Center)
•Food expenses for family support person
•Post-transplant medication costs
•Post-transplant follow-up tests and appointments

Sunday, August 29, 2010

First things first. Meals...
This morning just coffee and water.
Lunch... 1 sm 4 ounce can tuna drained, 1 Anaheim chili, Tomato, onions, 1 hard boiled egg chopped and 2 tbls reduced fat yogurt parmesian dressing.
Dinner... 1/2 Cup Rotini pasta, and I made Spaghetti sauce with tomato sauce and seasoning and added 1 pound ground turkey.
And a salad, Romaine lettuce, cucumbers, onion, tomatoes and yogurt Parm dressing.
And of course more WATER! lol

I also made a small 2 cups package of fat free/ sugar free jello w/ 2 % milk and had half of it. Bill at the other half. Cheesecake flavor. Not so bad.

I am going to try 1%, I am just not sure about it. I was a sworn whole milk drinker. I can't drink that if I intend to lose weight.

Night time just before bed seems to be my snacky period. I'll have to find something satisfying for then.

So, Bill must have been taking ads out in the paper. I went to Safeway this afternoon to get a few veggies and one of the checkers in there that is familiar said when she saw me... (as she tilted her lead to the side) "Kellie, I am so sorry you aren't doing well." I just can feel it and see it coming.

I just want to be me. I don't want to be the "transplant woman" or the "unfortunate smoker" or anything else. I can still walk while shopping, you do not see me in those carts... even though some days I so badly want to use them! I am still cleaning my house (when breathing is optimal), I am playing with my granddaughter, picking tomatoes which I planted off the vine. I am living. I am not some sickly bed ridden withered person. I am just me. Some days a better me, but me all the same.

I shouldn't have been at the store probably anyway. All day I have had a pain in my left lung. Sharp. I know it's probably still from the tests the other day. I asked Bill to go and he gave me a look like "are you kidding me". So, me in my determined... I don't need anybody attitude went in and changed into decent clothes and went to the store. I really have to quit that, because I am not hurting anyone but myself.

It's hard to know you are limited.

Does anyone talk to themselves? Well, there are times I am quite a good conversationalist all by myself! LoL I talk to myself when I am wallowing in self pity to get me out of it. I talk to my mom A LOT! I talk to myself when I am trying to convince myself of things.

There you have it, I am a whack job! If the white coats appear at my door I will know it had to be one of you who called them.

Well today, I was looking in the mirror. I just kept repeating transplant (of course whispering, because I know Bill would call the "ward" LOL). It just didn't fit to what I saw in the mirror. But then, what does a transplant patient look like? I guess it could be any one of us.

I am not sure of the protocol of transplant yet. I mean, I have had so many people tell me I am one of the lucky ones. If I disagree, am I being disrespectful? I know there are many many people who die every year of Copd and Emphysema, and I am sure each one of them would have given anything to be in my place. So, yes I suppose I am being disrespectful.

I am sure they would understand I am scared. I am so afraid. Bill sees the big picture... Me after surgery... me with new lungs.
I see me on the operating table with my lung or lungs removed, breathing by artificial means. That is not a picture I like to have in my head.

Saturday, August 28, 2010

Water, Water everywhere!

This is dinner. Whole wheat spaghetti noodles, 3 ounce chicken breast, light Asian salad dressing mix and Chinese noodles with peppers and onions, with salad and YES more water! LoL

My something sweet snack, a green apple and WATER. LoL

My camera seems to want to make everything have a yellow hue?

Anyway, I have had another day to let this transplant talk soak in. I am not so scared of the word anymore. However, I have yet to get online and look around at survival rates or anything.. so there is still time for panic! LOL And, it is still a surreal ending to this trip of mine.

Bill has not once today said this is "such a good thing" which I believe is saving his life! I was about to kill him yesterday.

I realized I am in NO hurry. I have plenty of time. People spend years on the list before they ever get an organ, and some don't make it to transplant. I am moving forward with my diet full force, that is not going to slow me down. However, yesterday I was ready to sell our house and move. Today I understand we have time. I will still get "my house in order" but I don't have to have it done by tomorrow.

I do however need to do a few uncomfortable things pretty soon. One: Make a detailed will. I will not put Brittney through what my brothers and I went through when Mom and Dad died! She has 2 step sisters who have their own mother to get things from. With that said... I will be going over things with her and what she doesn't want the girls are welcome too. I have a TON of stuff and there is no way for Britt or Bill or anyone to take it all. Besides that... what do they say? One mans junk is another mans treasure. I just want Britt to be the one to determine which is which. lol

Another thing I need to do is write an advanced directive. I have tried and thought about it over this last year, I need to just Do It!

I think I have mentioned before that I talk to my big brother once a week. Usually on the weekend, and he has been really concerned/curious over my thyroid and my Dr's appointment. He called today and his daughter is down visiting him from Alaska. He hadn't seen her in 2 years. I know how much he had been looking forward to her visit. He called today and said as kids are kids she is visiting her friends and they will meet for dinner tonight. He then talked about our ancestry which he has been researching a lot of the last 10 years. Then he told me to hang on, his daughter was calling. So, I waited. I knew he would ask about my tests and I wasn't sure how to tell him without bawling like a baby. He got back on the line and said he was going to go meet her soon for dinner. Then asked about my thyroid. I told him I hadn't heard anything yet. Then he asked about my other doctor (the pulmonologist) and I told him to call me after Breanna goes home on Tuesday and we'll talk. I didn't want him to worry or have his mind on anything but his daughter the next couple days.

I wanted so badly to talk to him. To tell him how afraid I was. I hate thinking of other people first! LOL He just has this way of saying what Bill says, only it comes from someone I don't live with so it's different and comforting. Is that crazy?

So I think now everyone else knows about it except my family (minus Bill & Britt).

I was thinking today, this was my weekend with the girls in Bend. Boy would I rather have gone, but I am glad that I did not put off this appointment.

On a lighter side, Layla spent the night last night. I let her stay up with me until I was ready to go to bed and then let her sleep with me. I had been having her sleep in her own room with this oxygen tubing, I didn't want her to get choked in the night.
Last night I tucked it in to the foot of the bed and ran it up by our legs. At one point we got the giggles because she said... "Grandma my toes-es got caught in your hoses." I just cracked up which made her belly laugh... soon Papa came into our room and told us we woke him up and to keep it down, then winked at me and left.

Those are my moments, the ones I cherish and think about when I settle into my pity party. It's really hard feeling sorry for yourself when you have a grandchild around to make you remember what's important.

That was lunch yesterday. It actually was good and filling even. After I ate it I realized I forgot to put lettuce in it! LOL Shows my state of mind lately. LoL It was celery and celery leafs, onion, one hard boiled egg, 4 nasturtiums out of my flower garden (I really like them they have a peppery citrus flavor) and tomatoes and cucumbers. I drizzled a little lime over it. And, my new thing I am making myself drink... Water with lemon.

If you only knew how much I hate water! LoL I know it has no flavor, but yuck. I don't know why? Even with citrus and I've tried all of them I don't like it. I am hoping it's an acquired taste and will become a habit. I am gulping down 6 12 ounce glasses a day. Sorry, that's all I can do! LOL

For dinner (grinning) I was so damn hungry I cooked and ate before I realized I didn't take a picture. LoL I made brown and wild rice with mushrooms 2 ounce lean hamburger patty's (Bill had set out hamburger and I had to use it... I know red meat!!) that I flattened out and used a medium sized biscuit cutter to form patty's, and steamed broccoli and white onions with lemon zest.

And then................... I blew it and had a bowl of Apple Jacks before I went to bed. :( This can't happen. So... all the cereal and temptation will have to go somewhere, and I will have to learn how to show restraint!

So far today... 2 scrambled eggs, and coffee w/ non dairy cream. Going to get water now. I know I am getting a late start. Tough morning. I'll post more later after dinner. If I can get the chicken to thaw out! LoL

Friday, August 27, 2010

A journey to transplant

So much to absorb in one day!

I don't even know where to start, and if I jump around sorry. I am bouncing between thinking clearly and having Oh My God moments.

First on the list before I even go to Seattle to talk with a doctor I have to work on my weight. I have known this for a long time and had been on weight watchers even a few times in the year since I quit smoking. Hey, I was overweight before I quit, but after I quit and especially after my diagnoses of emphysema I kind of gave up and was in the "put your head in the sand and life will be O.K." state of mind.

Well, my head is above ground now. I am very focused on what needs to be done. That makes things easier. Like when I quit smoking which I thought could not be done, this is a challenge like that.

Which only tells me that I am not able or willing to make hard choices without being back into a corner.

I have no idea about BMI (body mass index) I am sure every healthy person knows all about this. But one who eats butter and red meat rarely knows these things. LoL I do however know that I need mine BELOW 30. I don't know how much that is in pounds? But I am sure I will find out.
Britt tells me they have scales that not only takes your weight but after you program it, it can tell you your BMI. Now if those scales came with a personal trainer and a chef who could prepare wonderful meals with zero calories life would be good!

I am kidding about the chef and trainer, but I am going to be purchasing one of those scales. I DO know this is serious. And, I am sure not only a lot of muscle needs to be built up, but also a lot of fat needs to be removed..... in a pretty short period of time.

So, I started last night. I didn't eat yesterday because of nerves so last night after I calmed down a little around 11:00 I ate fresh tomatoes out of my garden and fresh cucumbers that came from my awesome neighbors across the street, and water. That was dinner. And, I am O.K. with that.

I need to hit the ground running with this weight loss. So, for the first 4 days, lots of water to flush out my body, and mainly protein and veggies. By protein I mean a hard boiled egg. No meats for a week. I need to let my body know this is war.

So now I am documenting my journey to transplant.

Yesterday 8/26 Coffee with non dairy creamer x3 Cherry tomatoes and 3 cucumbers. Water

I figure if I document all my food every day.... I can watch my success and failure. I will be starting weight watchers Tuesday again. This time Brittney is doing it with me. I just need to watch myself. I have set strict guidelines for me to follow. I will add in meat in 4 days, small portions of chicken, lean pork and some fish. I am not a fish fan. LoL
I have a long way to go in a short period of time, but need to also be healthy. I do believe that if I show up in Seattle and they can see I have lost a decent amount of weight since being told about the transplant they will be O.K. with me continuing.

I was put on high blood pressure meds and my pulmonologist suggested that until I can get my pulse and blood pressure stabilized to not worry about exercising. After I can get it down and have it stay there then I can start walking again. Yes, that will be into the cold weather and winter, but I will walk, I will find places to walk.

This is what I know from research. Just because you are suggested for a transplant does not mean I will get one. The need to get my files and go over them, see if any further testing is needed or old tests re-done, have me in for an interview, and then a board of 7 or 8 members will decide my fate. I have age on my side. So, it's a dice roll.

Then once accepted I am placed on a waiting list. I am not sure how that works, as far as how they decide who goes first? I would hope it's by need first then time on the list. But bureaucracy never made any sense to me. I know it can and does take years for some to get an organ. So once I get my body ready, it's a waiting game.

Then there is the issue of location. Once placed on the list I need to be available. That means within an hour of the transplant unit. Which means for us either re-locating permanently or renting out our house and finding something up there. One thing is easy. Our house is paid off. So we would be able to drop the price and not kill ourselves. Finding renters is easy. That was my occupation for years.

I know this is all going to take time. I probably have no idea of what is to come. I know there have been huge surprises this last year in my life. I can only imagine it will continue from here.

I will be back later tonight to document my food intake today.

Be back later with today's yummy menu! LOL

Thursday, August 26, 2010

This isn't how my life was supposed to be

I have been holding off blogging until after my doctors appointment. I wanted to be able to share results and I was curiously wondering what my FEV1 levels were going to be. That is how they measure progression of emphysema, it's the lungs ability to expel air.

I had taken Brittney with me. Most times I have a doctors appointment I am concerned about I take someone with me to hear for me. It has been my experience that when I hear the first bad word out of a doctors mouth my ears go deaf.

So after all the tests I waited for the pulmonologist to come in and talk. I thought I would get my meds increased possibly. Most likely get told I need to lose some weight, and sent on my way being told to come back in 3 months unless I needed him sooner.

Britt and I watched as he came in and talked about my heart rate. He wrote a prescription for high blood pressure, trying to get this pulse of mine under control. He said the findings from my echo-cardiogram didn't show any abnormalities so he wasn't concerned there, but my heart rate needed to be addressed.

Then............. He said... I want to talk to you about options. I think your next course of action needs to be TRANSPLANT. TRANSPLANT! TRANSPLANT! TRANSPLANT! That's all I heard the rest of the time we were there. I know words came from my mouth, and I nodded when I was supposed to, but I could not tell you for sure anything else that was said. Well, kind of.. but I am glad Britt was there.

He explained that there are 2 transplant hospitals near me. One is in the Bay area @ Stanford. The other is at the University of Washington Hospital in Seattle. The choice was mine, However.... once accepted and put on the list I needed to be an hour away from the center. Well, we are about 8 hours from San Francisco and about 12 hours away from Seattle.

It of course takes time to prepare and do all this. First I have to pick a hospital. Then he has to send them all my test results and information, then once they look it over they will send me paperwork to fill out and send back. Then they (the hospital surgeon I have chosen) will schedule an appointment with me to discuss my options.

And, before I am accepted I have to have a Body Mass Index of 32%. I have no idea what mine is now. But it's pretty close to liquid! LoL So, I start a rigorous diet. No exercising until my heart rate is under control but diet, diet, diet.

My doctor told me he has had patients do different things. One lady paid a pilot to be on standby for her to fly her to San Francisco and that hospital accepted that. One other couple had a motor home and parked it in a park north of Stanford.

He said it can take years on the list. In the meantime I have to remain healthy. No choice, no exceptions. If I am accepted and get the call and have the slightest infection then I am moved back down the list and someone else gets my lungs.

That is another thing... Neither Britt or I asked if this is a singular or double transplant situation. So, I am not sure. I would assume that they will go over that with me in Seattle.

And, as luck would have it... I have a cousin who is a Nurse in the transplant ward of the hospital at the University of Washington. I had forgotten, and ran across his profile on face book tonight and so I sent him a private message and asked him if this was him and he had the choice of his hospital or Stanford which would he choose. He told me Seattle and said he would recommend a surgeon for me. And he would be giving me my after care. Odd huh?

Anyway. I am stunned. I am irritated. I have cried so much (my pity party) my eyes are swollen almost shut and burn so bad. I have had this headache for however long... well tonight it has taken over my head, neck and shoulders. I just hurt.

I haven't given up. I just am in shock.
Tonight though I can safely say I feel beaten.

To top it off Bill is wacko. He talks a lot anyway.... But tonight he is babbling, calling his friends to tell them "the good news". If I hear from him ONE MORE TIME that this is a fabulous thing I will beat the shit out of him and go insane. He has said about 10 times tonight alone that he would rather me go through this surgery than to have my ashes on the mantel. Well DUH! I understand in a few days I may see this as a new start, as a good thing, But tonight No.
Tonight it is scary, it is shocking, it is me being forced out of my denial and I don't like it.

Never in a million years would I have written this life story for me.

It's funny this morning when I woke up I was sitting in my chair watching the news. First time in weeks I had actually made it up in time to watch any news. It was just me and all of a sudden I smelled my mom. I smelled her perfume like she was standing in front of me. It was the first time since she died I felt connected to her. That should have told me something,

I am sure I am be OVER-LY dramatic. But like all my other issues... give me a few days to have my pity party and I'll bounce back and see the bright side of this. Right now it just feels like a heavy weight on my shoulders.

Monday, August 23, 2010

Mom's easy cheesecake

Sorry, no picture at this time. Maybe I'll make this again and get to it before Bill and friends. LOL

1 pck. 8 0z cream cheese softened
1/3 cup sugar
1/2 cup sour cream
1 tsp vanilla
1 4 oz cool whip
1 prepared 8 or 9" graham cracker crust

Beat cheese until smooth. Gradually beat in the sugar. Blend in sour cream and vanilla.

Fold whipped cream blending thoroughly. Spoon into crust, Chill until set about 4 hours.
Serve topped with cherry pie filling... or any other kind you'd like. 1 can of cherry pie filling will make 2 pies.

When I was growing up as a pre-teen and teenager every holiday we would have lots of company. It was my job each time to make this pie. It is so easy. The one thing I can tell you is to make sure to wait until it's set.

Texas Hash

1 Medium Onion chopped
1 Green pepper chopped
1 lb. lean ground beef
1 large can crushed tomatoes
1 cup rice
1 1/2 tsp. salt
1 tsp black pepper
2 tsp. chili powder

Saute onions & green pepper remove from pan, and add hamburger and cook until done and crumbled then drain. In casserole dish combine all ingredients.

Bake covered 45 minutes
uncover, stir and bake another 15 minutes or until rice is tender.

This was my brothers and my favorite family meal. This is our comfort food. Add a green salad and some garlic bread to this meal and that is a little bit of heaven. :)

Individual Mini Meatloafs/ extra large meatballs

Spray Muffin Pan and set aside. (I used canola oil and just wiped the inside of each)

In a mixing bowl mix...

1/2 lb. lean ground beef
1 sm onion, minced
1 clove garlic, minced
2 tablespoons parsley
2 teaspoons Cayenne Pepper
1/4 cup shredded sharp cheddar cheese.

Using a large scoop fill muffin cups.

place muffin tin on baking sheet in case there is drainage.

Bake 30/40 minutes checking doneness.

English Pea and Bacon Salad


4 slices bacon (cooked, drained and chopped)
1 10 oz bag frozen peas thawed (I pour them onto a tea towel)
1 cup shredded sharp cheddar cheese
2 hard boiled eggs (peeled and chopped)
3 TBLSP mayo
2 tsp fresh squeezed lemon juice
salt and pepper to taste

In a medium serving bowl combine....

bacon, peas, cheese and eggs.
In a small bowl stir in mayo, lemon juice, and salt and pepper

Refrigerate until ready to serve.

Wednesday, August 18, 2010

Changes are coming

I had mentioned that I was going to take a trip the end of the month to spend a few days with a couple of friends that also were great friends of my moms. Bill was going to stay home and I had thought my brother was going as well.

As you know I had been waiting for any communication back from the Surgeon regarding my thyroid procedure. Last I heard my insurance was not going to cover it. So, I called the Dr's office this morning and asked them if any progress had been made. Nope. So, I asked her if I called would it help? She told me all I could do was try. So... I got on the phone and called. It probably added to the outcome that I used the phone. My voice these days is "sandy" and scratchy so when the voice mail came on and told me to leave a message.. they could hear part of the effects of these nodules. I also told them that I have severe emphysema and I am sure that one or both of these are pressing against my wind pipe making it different to swallow and at times hard to catch my breath.

Then, I remembered Brittney had a late final today and I was supposed to go get Layla. I grabbed my bag and keys and left.
Layla was especially happy today and so I thought on the way home I would treat both of us and stop by Jo-Anns Fabrics to find a craft we could do together. Besides that I love that store. Put me in any store with beads, fabric and paints.. throw in silk flowers and I am in HEAVEN!

We found some perfect things made out of wood that she could paint and decorate. She found a kit to make a necklace or she wanted to make a bracelet. She found some stickers to put on special paper. And, Grandma found some silk flowers for sconces I had in my dining room that have been empty for a year. And, I even found a Christmas gift for Brittney I could put away. We had a good outing.

We drove home and as well pulled up Bill came out and got Layla out of her seat and got our bag of goodies and started in the house. Britt was there, she finished her final early.
Bill immediately scolded me for not calling to check in and not just coming home. I kind of barked back at him and told him Whoa!! For the first time in a long time I took Layla out and we had a nice 1/2 hour. For a 1/2 hour I was not sick, I was not anything but out with my granddaughter. Yes, I had the O2 with me, and yes a few times I had to tell Layla to slow down pushing the cart with my bag in it because I could feel the cord tighten around my face... but we had a good time.

I tried to tell Bill that it was O.K.. Brittney told him to let it go, he just kept on. I felt instantly weight on my shoulders. The wind left my sails. I felt damaged again. It just pissed me off.

Layla had a snack and Brittney said while I was gone, right after she got there the phone rang and it was my health insurance lady. Brittney said at first she wouldn't tell Brittney anything, then after Brittney explained she was my daughter, and knew all about my thyroid issue and the need to have the procedure... this woman on the other end of the phone said "tell Kellie to let her doctor know permission is given and a fax will be sent to his office"!! That quick!

So, after Britt and Layla left I tried to call his office, which was already closed, I will call tomorrow with the news. Then I turned to Bill and told him we needed to come to an understanding.

That I know how much he worries about me. He sees me gasp for air, he knows that when I get to the car I have to take a minute to catch my breath and let my heart rate slow down. He sees me at my worse.
This week I was supposed to be taking my pain and muscle relaxer to help my headache. I let the pain meds go and have just been taking the muscle relaxer, which after the first 2 or 3 days doesn't make me so rubbery.
So, Bill has been taking all the chores away from me and telling me just to go sit down. Go sit down... Ughhh! Last night I cooked dinner then did dishes. He said he would do the dishes and to go sit down. I told him that I have to do something to feel useful. I can do dishes, I can cook, I can fold clothes and dust the furniture and even vacuum some days.
He needs to let me do what I am able to do, while I am still able to do it.
Bless his heart for wanting to help me and take care of me. But, it's a fine line to walk.

Now back to the beginning of this blog.

Bill was not going to accompany me to Bend at the end of the month. I thought my brother would be there so no big problem. Bill actually said... "I need a break".
Then my brother called and said he couldn't make it. I still thought I could get the hotel to bring in all my O2 equipment (traveling with it is just ridiculous) and just tip them well.
Yesterday afternoon my Pulmonologist's receptionist called and told me they wanted me to come in the 26th to discuss my echo-cardiogram. I thought, alright... that was the day I was leaving, but I could push it back one day.
Then moments later she called back and said that they also wanted to do a Spirometry test too so to not take any meds that day or 12 hours prior to my appointment. Including O2. She said... if it got to where I needed O2 to use it. But try not to.
Then she said... there will be more tests or procedures to follow and we can schedule them while I am there.

So, I haven't called the girls yet.. But this trip for me is called off. The girls said if I couldn't get to them, then they would come to me. We'll see. Depending on the type of tests and procedures... I may not be up for a visit. :(
I was so looking forward to being a "girl about town". I love these little weekend trips. I had a blast when we met my brother in Bend last time and was so looking forward to this.

So, tomorrow I will call and let the girls know I am backing out.

I am looking forward with anticipation getting my thyroid taken care of. I am curious and apprehensive about my echo-cardiogram. I have been curious about having a new Spirometry test. For those of you not familiar... a Spirometry test measures your ability to exhale. It's easier for me to inhale than it is to exhale. Well, equally as hard. My last Spirometry results FEV1 was 41%. That was July 2009. Since then I have had a lot of changes, so I am curiously concerned.

So, it looks like by the end of the month I will have some important answers, or will be on my way to having procedures done that will help me get back to just being a woman on O2.
I miss those days. Who knew I would think of those days without heart/pulse issues, without lumps in my throat the good times. I thought carrying around a cannula would be the deal to end all deals. Not so!

I will be happy to just carrying around oxygen. Never thought I would hear myself utter those words!

Monday, August 16, 2010

If I have to have O2 it will be in designer bags

As if dealing with the "stigma" of Copd and Emphysema (especially emphysema) isn't enough, using a cannula 24 hours a day for oxygen can really effect how we feel about ourselves.

Sorry guys... This won't help you (unless you want to find a manly backpack)

As a woman I still wanted to feel as feminine as possible. Because of the cannula I already had one strike, then I had to give up perfumes because the smell would take my breath away, then earrings had to go because they would get caught up in the cannula, same with necklaces (most of them). So I was not thrilled when they showed me the "bag" and backpack options for my O2 canisters! You might as well have raised the red flag and said... Look here is the source of my O2!

So, I went home and placed their options in the top of my closet and started going through my handbags. I am a handbag gal. Love them! I passed this love onto my daughter and as she says, we started “collecting” them about 4 years ago. Between us we have a ridiculous amount of beautiful and expensive bags.
Many of my bags were not long enough. My O2 canister is about 12 inches long, and some of them were not leather (which means they would tear or get punctured). But I found 2 that I can use. And, now I am looking at stores for new options.

First I had to find something that fit over the valve (top of the canister where you crank it open or closed), because it was pointy and I did not want to ruin a good bag. I found out the need for this when I bought a bag (thank god cheap) at a store in the mall and after a few days with my canister in it, it had poked a hole in it! :(

Now I have great bags I can still use for a purse too, they hold my wallet, keys, lipstick, cell phone and my O2 canister!

So ladies… We don’t have to give up looking good, having a stylish bag that matches our outfits… we just have to be creative.

Here is one of my bags. It’s a Kenneth Cole and very roomy.

So, the next time you're at the store look around. I found a couple really cute ones at Walmart and Target. You don't have to do without style to use O2.

Saturday, August 14, 2010


So, Friday the 13th came and went with no news. I had my Doctors appointment and thought I would get some news or results from the echo-cardiogram I had. Nope. She said she needed to have someone else look at the results. Anyway... that was a little bit of frustration. Then she went over when I came into the walk in clinic for my headache. Yes, I still have it. No, I am not taking the meds because they make me like Gumby.

She suggested I take the meds for a week. One week everyday to see if they can't get rid of the tension that is causeing the headaches and maybe make my blood pressure and pulse rate even out.
I think she is grasping at straws to figure out my heart issue. She said she is not sure if it's my lungs causing the heart problems, or an actual heart issue. To me either way is a heart issue.
I guess that's why I am not a doctor! LOL

I now hit an all time low (for me at least) blood pressure. It was 89/70. I have been taking my blood pressure and pulse rate everyday at different times, and when I am active and when I am sedentary. So I had a good record of 3 weeks worth of blood pressures.

Now that will be a all the time practice of mine. It shows them a good record of whats going on with me.

Oh... I did have some good news. My bone scan came back good. :) LoL My doctor was so happy she could give me something good.

Wednesday, August 11, 2010

A morning of emotions

This morning I woke up with Layla whispering to me ... "Grandma I love you, I want some cereal please." LoL At least she learned to be sweet before barking orders. It was a most wonderful way to wake up and I would make her anything. She is my joy!

So we ate breakfast, I got her dressed and took her to school. Her mom is preparing for finals week and so I will probably have Layla quite a bit the next week or so. She is getting to that age where she can totally play me like a fiddle, and even if I know so, I don't care. To watch her amuses me, it makes me remember when Britt was little and we were all so happy and healthy.

Anyway... God I get sidetracked easily! I came home and quietly got in the shower because Bill was still asleep. For a month I have talked about this appointment today. About how I just wanted this thyroid issue gone, so the fact Bill was still sleeping bothered me. Then I thought he must have just had a bad nights sleep. So, I got dressed, dried my hair, drank some coffee and left quietly by myself to my appointment.

I was about 3/4's of the way there and at a stop sign I saw some old friends (more like a father figure to us that I hadn't seen in a year or so) walk in front of my SUV. I waved as they walked by and I noticed them looking in like they didn't know me. Finally they walked over to the drivers window and he made a motion to the area under his nose (referring to my cannula) and said what's that? At first I didn't understand, I get so used to wearing it I don't realize it's there sometimes. Then he said are you having heart problems or is it your lungs? I said both, and before I could explain he said......... "HA! I told you to quit smoking!" Then he asked about Brittney and Layla and then just as quickly turned and walked off. I was left feeling like he slapped me in my face. I was shocked. And, even worse it made me cry ... which was really bad timing because I was still on my way to the doctor and I didn't want to walk in there with makeup smeared. Vanity you know! LOL Besides that I get pissed when I let people make me cry, and that makes me cry harder.

It was like he was pleased his prediction came true. Why is it that as hard as we are on our selves (at least I am), there are those people who are so easy to blame us for having a disease that will leave us suffocating and dying?

Yes, I smoked. So did many. Yes, I knew it was bad for me. So do people who speed down the highway. No one thinks it will be them. They think they will be the ones to beat the odds of killing themselves. I didn't purposely start smoking and say "Some day I will be told I am dying and I will take full responsibility for it, because I deserve it!"
I think that is what some people want us to say. I should get shirts made! Ughhh.

Anyway... So I went to my consultation about my Thyroid. When I got there they wanted me to fill out all kinds of forms, so I sat across from a very fragile, kind looking older man and started with the pile of papers. I heard them call his name and he left. I filled out my papers and soon after that they called my name and put me in a exam room to wait (you know the practice). As I sat there (for a really long time) I could hear through the walls. So, as I ate the gobstoppers I found in my purse I listened, hoping they would come to my door soon. I heard the doctor and his nurse go into the room next door. It was the little old mans room.
I heard the doctor ask him to lay down and does this hurt, how about this? Where did this scar come from? Have you lost weight?
The doctor said we want to do exploratory surgery to see the blockage in your esophagus. I listened as they explained the procedure to him and the risks. I heard him ask if he had cancer. The doctor answered it is probable you have esophageal cancer. The doctor told him the procedure would take about 20 minutes and give them many answers. The little man said swallowing was painful, but after a few tries he could get food down without any pain. He said that he didn't want the procedure. He didn't want to know if he had cancer. He asked the doctor what would the treatment be? Chemo, I even knew that. He asked the doctor knowing what he knows about his health and condition if it were cancer how long would he have to live. The doctor said he didn't like to guess. The man said, please about how long. The doctor said 12 to 18 months, without treatment. The little man said no thank you. The doctor told him to go home and think about it and if he changed his mind or if the pain from swallowing got to bad to please come back in.
I was bawling by the time the doctor opened my door. I was using one of those paper towels in there that feel like sand paper. So, between that bout of crying and the one I had earlier, I am sure the doctor thought from looking at me I must be sicker than I was! LOL

That poor man. I think he would rather live his life not knowing how much time he had. Sometimes it's better not knowing what the future holds and what the possibilities are.

Now (talk about taking the long way around! lol) to my appointment. No big deal I guess. The doctor told me this is not unusual and women are more likely to have thyroid issues. Of course most are older than me, go figure! He said he wanted to do a needle biopsy of both nodules. That the reason to do it would be because of the type. Instead of being fluid filled these are partially solid. He says this is done in his office with the use of ultra-sound to guide the needle. I will be awake and he will use a local anesthesia. A needle will be inserted and put into each nodule and once they have a sample, while the needle is still inserted they will shake the needle to blend the sample. Then remove it and have pathology look at it. I am unsure if that happens while I am still there in case they need more samples? And, after my morning and the little man next door I didn't ask any questions.

As I was leaving the counter lady said she had to call my insurance to get permission for the procedure then she would call me to schedule. She said maybe Friday, or a month. LOL

Then, I come home to realize my next doctors appointment to get the results of my echo-cardiogram is on FRIDAY THE 13TH!! Really? With my luck?? I almost called to change dates today, but I then realized whatever the results will be, they won't change if I go in on the 13th or the 20th ... so I'll just get it over with.

What a day. Oh, Bill woke up and had forgotten all about my doctors appointment and wondered where I was. That says a lot about how we comunicate lately!

Monday, August 9, 2010

Finding the right direction

This morning I woke up and just like every other morning I felt sluggish, my feet hurt, my legs were stiff from cramping all night. I drank a couple cups of coffee and got in the shower.

I came out of the shower with a strange determination. Lately I have felt miserable, both emotionally and physically. I have felt like I have totally lost control of my life and that scares me and pisses me off. I always have been able to keep things in perspective and while I may take a few days and dwell on my issues I always bounce back. Lately not so much.

So, this morning was me ... telling me ... to step up and take control and quit giving up. After my shower I got dressed and took my O2 canister out of my handbag and found the ugly back pack thing that my first canister came in. I got my walking shoes and told Bill I was going to walk the nature trail.

We used to walk this trail a lot. I thought it was last year, but it was actually this Spring. My how much has happened since then! In March and April I was walking and going to Weight Watchers and trying to fight this disease. Then in May my heart problems began and my O2 saturation started to get out of whack and I was put on full time oxygen.

That has been my anchor. Something that I felt/feel changes me. Changes my appearance, how people perceive me, how I look at myself. It makes me feel weak, needy, damaged. It has become what I am and ... that's not me. I am strong, I am determined, I can handle change. I need to remember these things.

So to the trail we went. It's 2 1/2 miles. My last walks included stops every so often to catch my breath, not long ... just long enough to let my heart rate settle down and my breath to come back. This time however I was on O2. I walked and didn't stop to sit once. One, because I was determined to get going, and Two... because honestly I was afraid if I sat down I would never get going again! I stopped a few times to catch my breath especially the closer we got to the finish line but I walked it. I walked it without stopping to sit and rest!
I am terrible at taking my heart rate so I did my best... I think at the end of the walk it was around 140-150. When we got home after resting my pulse rate was 109 which is what it has been lately.

I surprised myself. I am not sure if it was the best thing to do at this moment in time. But, I did it. I will wait until after my doctors appointment to get the results of my echo-cardiogram and then talk to my doctor about her recommendations on more exercise.

One step in the right direction. =)

Thursday, August 5, 2010

Killer pressure/headache

I have been battling a headache for almost a week now. I have taken Tylenol and it didn't touch the pain.
My primary care doctor only works Tuesday and Thursday and like it usually happens on Wednesday I could take it NO MORE so I went to the walk in Clinic.

He examined me and said it appeared I was having spasms in the muscles at the base of my skull. Makes sense ... That's where the headache originates then wraps itself around my head like hands squeezing.
He prescribed me Oxycodone and Flexeril and told me if it continues more than a few more days to call my doctor and be seen by her.
I went and picked up the prescriptions, came home and took them and sat in my chair. Before I knew it I was half awake / half asleep. I finally gave up and went to bed and slept. I woke up once took more pills and went back to sleep.
This morning I still have the headache, we'll see how things go.

It isn't the usual headache. It isn't so much painful as it is uncomfortable and intense. It just feels like squeezing. Maybe like a sinus headache, only around the back and sides of my head instead of my forehead and face.
All I know is that I have become so sensitive to medication. The last time I had this kind of medication was when I had my breast lumpectomy and that doctor gave me Oxycontin. That made me sick to my stomach.
This doesn't make me sick, just makes me feel like a sock puppet. LoL Kinda limp and clumsy!

The bone scan yesterday morning took all of 5 minutes. She said they will use those results as a baseline for future testing. Of course no results, they will send them to my doctor and it will take a week or so. That's the standard now .. I learned that along the way. Yep, about a week or 10 days ... for everything.

I had been asked to be interviewed on the subject of caregivers by the COPD Foundation. I missed her call yesterday while I was at the doctor, so I called after I got home and did the interview. They had asked me if I wouldn't mind writing a short article about myself and this disease for their weekly column. I told her I had forgot about that, and I would work on it.

I feel privileged they asked me. When it comes out I will copy it to here.

Now ... the meds are kicking in, I'll be napping for a while.

Tuesday, August 3, 2010

Men vs. Women

Not that I want to diminish what men go through, but I had a thought this morning that ...
I think women who suffer from Copd/Emphysema to the point where they need help, have much more difficulty accepting it than men.

Here's why I believe that ...
Woman their entire life have been the nurturer. It is our nature to take care of our kids, pets, house, husband, and parents. So, when we find ourselves unable to do housework, laundry, wash windows and cook meals it adds to our depression and feelings of worthlessness.

Over the years when my husband got sick with a cold or flu, he would put himself to bed and act like a child needing his mommy. I would bring him soup, dinner, breakfast, cool cloths for his head .. keep the door shut so the kids and dogs wouldn't disturb him.
On the other hand when I got a cold or flu, I might spend one day in bed. The rest of the time I was at work, running my daughter here or there, doing laundry, cleaning house... etc etc etc..
I just think men are more used to being cared for. To us, they take care of the car, fix the leaks in the kitchen, take out the trash.... You know man stuff.

I just know that my frustration level climbs to a high peak when I have to fold clothes that my husband washes. My delicate dress is washed with towels and T-shirts, and is now shrunk to where it used to hang about calf length, now is above my knee and looks ridiculous! He can't figure out why underwear and bras should not be washed with kitchen towels and wash clothes! Ewwww!
Our laundry room is downstairs and I can't climb stairs anymore so he took over. It's a doubled edged sword ... while I appreciate all he does for me, I want to scream when I see the way he does it!

I used to mow the yard and take care of my flowers and the decks. He mows but misses spots, he doesn't edge the sidewalk, he weed eats and cuts my flowers off in the flower beds. The back deck hasn't been washed off all summer and there are tools and garden equipment laying all over it. It's these things that add to my depression.

Of course part of my problem is I was particular in how things should be done. Even cleaning the house I had my way of doing things. These days, let's just say ... It's clean but with streaks.

This was just something on my mind today.

Monday, August 2, 2010

‎"If you can't handle me at my worst, then you sure as hell don't deserve me at my best."-Marilyn Monroe

I haven't written in a few days. I am thinking about my upcoming appointments and how the outcomes could change me. I have a bone scan on the 4th. Not so worried about that one, I can amend my diet and take supplements if I need to. Maybe I am being naive', but bones are the last thing on my mind right now.

The 11th I have a consult with the surgeon who will do the biopsy on my Thyroid. It can't happen soon enough for me. I want it fixed. I am not sure what is going on with it but I can tell you I am suffering the side effects.
My hair has changed. All my life I had thick ultra curly and healthy hair. Now it's dull, dry and looks dead and straight. How does that happen? Also I am getting headaches everyday. I am getting cramps running up the back of my neck into my skull behind my ears. So bad that it felt like hands squeezing my head. I was home alone and I kept telling myself that if it didn't go away I was going to see about getting to the hospital in case it may be a aneurysm. I literally was bending upside down trying to stretch out my neck to get it to stop. It was very scary.

I am totally exhausted! Today I got up and got Layla ready for school. I have been keeping her a few nights so Britt can get through finals and get all her written work turned in this week. Bill and I went down to feed our geese and ducks. I was remembering last summer and fall we were there almost everyday. I would take coffee there and after I did my walking we would sit and have coffee and watch the birds. This year I was in our same spot tethered to a purse with a oxygen bottle in it. I walked those same steps as last year only now even with O2 my breaths did not come easy and my pulse soared. We came home and Bill left to go pick up supplies and I went to bed and slept until almost 3:00. That is just not like me. Even if I have the flu I am not one to go to bed. I am just so tired and sore, and I am tired of being tired and sore!

I got side tracked... back to the tests I have ahead of me. Then on the 13th I go back to my Primary Care doc to hopefully hear the results of my echo-cardiogram, and find out what is going on with this racing pulse thing.

I just today figured out I am physically not well. I suppose for the first time it dawned on me that this is the beginning of many Dr.'s appointments and worry about testing, and not feeling well. Like I said before somewhere, I liked it before when I just worried about carrying around O2 and taking my meds. This is my first close encounter with being hospitalized. And, believe me I will fight that tooth and nail. ~~Listen to the tough lady talk! LoL ~~ I am sure just like every other Copd-er I will have my hospitalizations and after a while learn to expect those too.

This disease is unforgiving. It constantly reminds us that we are limited, and just when I start to get used to one level I get slapped down to somewhere lower.