I have compiled this information from research that I have done, as well as from a booklet that I was given from my doctor at Shands. This should be able to answer just about every question you might have about what I'm going to be going through. If not, e-mail me (rachelnates@hotmail.com) and I will add it to the list.

www.newlungs.com
This is another good site by a transplant patient (from 1997)... but it is a little out-dated. Click here to see the incision for a double-lung transplant. (I heard they're using glue instead of staples now??).

What is a Lung Transplant?

A lung transplant is a treatment, not a cure. A transplant is the process by which an untreatable disease is replaced by a treatable one. Treatable meaning that I will have to take anti-rejection/immune-suppression medications after transplant to prevent chronic rejection and death. However, faced with a disease that would otherwise prove fatal, this is a good trade-off.

Lung transplantation is not simply a surgical procedure, it is a process of events that include an evaluation phase, a waiting period, hospitalization for surgery, and continuing care after surgery.

One or Two New Lungs?

There are some diseases that require a double-lung transplant. LAM is not one of those diseases (meaning that LAM will not move over into my new lung). I discussed it with my doctor and he said that he wants to list me as willing to receive either one or two lungs. This will help my score to get me higher up on the list.

Becoming a Lung Transplant Candidate

After the evaluation is complete, the transplant team will meet in approx. 2-3 weeks to discuss all the information gathered. The purpose of this meeting is to discuss my options and my need for a lung transplant. In addition, the team will discuss any problems that could make transplantation too risky for me.

"The List"Back to Home Page

Once the board has made a decision about my candidacy for transplant, I will get a score based on the results of all my evaluation tests. The score dictates where I am on "the list". Many factors are taken into consideration, and from talking with my doctor I get the feeling that I will get placed relatively high on the list (although he was being politically correct and wouldn't confirm it).

But from what I've read, you really have to look at the list as competition with those who are most similar to you. So I would be in competition for new lungs with someone who was my same size and bloodtype.

When lungs become available, a "match run" list is created to match the lungs to suitable candidates based on blood type, distance from the donor hospital to the transplant center, and age group. Candidates on this "match run" list who have the highest score will be selected for transplant.

If there are two perfect matches for transplant, then the team may decide to save two lives instead of just one.

To read all about the lung allocation scoring process and factors taken into consideration, click here.

Waiting for My New Lungs

Waiting for a suitable lung to become available may be the toughest part of the transplantation process. Basically, I just wait for the call. But from talking to other transplant patients, you just have to live your life and be prepared to go at a moment's notice. That means I will have to have everything packed in a bag waiting to go and have a "plan of action" in place (phone tree, who to call, what to do, where to go, etc.)with a plan B, C and D.

I have spoken to transplant patients about when they got "the call" and they said that you're so excited about transplant at that point, that you don't really have time to get nervous. You just drop everything and go.

Getting Wait-Listed

If I am sick while I am waiting for my transplant, I will get wait-listed, which means that if a set of lungs become available then I won't be considered for candidacy. So that is why it is very important that if anyone comes to visit me before transplant - they make sure that they are not sick or have been around anyone that has been sick (especially kids). I will also ask that you shower in instant hand sanitizer before you enter my home (just kidding).

How do I get to Shands?

I just found out that we are close enough to drive. That is awesome news.

Dry Runs

Sometimes you will be contacted for transplant and then when the team inspects the new lungs, for whatever reason - they decide that they are not good enough for transplant. They will then cancel the surgery and send me back home. Hopefully they will determine that before I get all the way up there, so we can just turn around. But I'm praying that I will have the perfect set of lungs at the perfect time and I won't have to experience any dry-runs.

Preparation for Surgery

Prior to surgery, I will be examined by the coordinator, the surgeons, and anesthesiologists. I will also have a chest x-ray, electrocardiogram (EKG) and sputum specimen. I will also have blood samples taken and an IV catheter will be put in my arm and hand to get a dose of immunosuppressive medicines. They will also check my blood pressure, pulse and temperature. I will have to sign a consent form giving the surgeons and anesthesiologists permission to perform the lung transplant. My family should be able to stay with me to comfort me during this time - but I will probably be the one comforting them. Maybe they should hook us all up to some IV anti-anxiety meds.

In the Operating RoomBack to Home Page

When the surgery begins, the doctors will prepare me to receive my new lung(s). Only after my new lung(s) have arrived at Shands will my old lung(s) be replaced. I have not done any research on the actual procedure, nor do I want to. This is one of those situations where I'd like to be oblivious to the technicals. The less I know the better. I'm going to be knocked out, anyway, and there' s nothing I can do but put my life in the hands of the surgeons. As far as the actual surgery goes, it is going to be much more difficult for my family than it will be for me.

Care in the CICU (Cardiovascular Intensive Care Unit)

Please note: I will not be allowed to have any fresh flowers or plants, because they have bacteria. We ask that if you want to do something, visit my How You Can Help page or make a donation to my Breath of Hope Fund. You can also leave me a message or "Virtual Gift" on my CarePages website.

When surgery is over, I will be taken to the CICU where I will stay in a private room. As soon as I am settled in my room, my family will be allowed to visit. The number of visitors will be limited and only immediate family will be allowed to visit. The reason for limiting visitors is to decrease the risk of infections, which is more likely when there are more visitors.

During my stay in CICU I will be cared for very closely. A nurse will be close to my bedside 24 hours a day. There will be all kinds of monitoring equipment that will keep track of my bloodpressure, heart rate, breathing, oxygen levels, etc.

The best news is that my dog, Hurley, will be allowed to come visit! They say it helps patients with their recovery. They will also have me up and walking as soon as possible. I heard it's "lung transplant boot camp".

I will be in CICU from 3-7 days, depending on my recovery. After I leave CICU, I will be placed in a private room until I am discharged from the hospital. I will be in a private room in order to limit the number of people I will come into contact with.

Monitoring Equipment After Surgery

I will have a breathing tube which will be connected to a mechanical ventilator (respirator) which will breathe for me during and after surgery (until I am strong enough to breathe on my own). When the tube is removed, an oxygen mask will be used to supply me with additional oxygen.

A nasogastric tube (NG tube) will be passed through my nose into my stomach to keep air and fluid from collecting in my stomach. The NG tube will be removed as soon as I am ready to take food and beverages. I will also have an intravenous line or catheter on the right side of my neck that will be used to monitor my heart and lungs.

Over the incisions where the surgery was performed, bandages and tape will be placed and changed daily. In addition, I will have EKG monitor patches, about the size of silver dollars, placed near my shoulders and sides to monitor my heart rate.

Below my chest incision will be 2 or 4 chest tubes. They are plastic tubes that are passed through my skin and placed around the area where the surgery was performed. The chest tubes keep air and fluid from collecting in my chest and help my lungs expand. The tubes usually stay in place for 5-10 days, sometimes longer.

To check the function of my kidneys after surgery, urine will be collected and measured every hour. To do this, a small rubber catheter is placed into my bladder after I am "knocked out" for surgery. Usually, this catheter stays in place for 2-3 days after surgery.

Finally, on each arm, there will be one or two intravenous catheters or IV's. One of these IV's will be placed into the artery of my wrist to measure my blood pressure and collect blood samples without the need to be disturbed. Until I am fully awake, my hands will be restrained by cotton straps. This is so I don't accidentally move my arms too much and disconnect any equipment.

I will have my vital signs checked hourly. Every day I will have a chest x-ray to see how my new lung(s) are doing. Every day I will also have a bath and my bandages changed.

As I recover from surgery, the monitoring equipment won't be as necessary and I can get up out of bed, sit in the chair, and walk at my bedside.

Care After SurgeryBack to Home Page

During the first few weeks after surgery I will be especially vulnerable to infections. They want to limit my visitors while in the hospital. But I will be able to have contact by phone... and I'm hoping they have wireless internet so I can use a laptop.

I will walk around the hospital floor during low traffic periods in the morning and late evenings after visiting hours. I will always have to wear a mask when I am outside my room and especially when I go to have any tests such as an x-ray.

During the hospital stay after surgery my family and I will be involved in a number of activities designed to: help me recover from surgery, monitor the function of my new lung(s), prepare me for going home, and inform me about my health care and lifestyle once I am discharged from the hospital.

Recovery and Rehabilitation

During the hospital recovery and rehabilitation phase of the transplant process a lot of different people will be involved in my care including doctors, nurses, respiratory therapists, physical therapists, dietitians, and social workers. The first step in the recovery process will involve a combination of chest physiotherapy, proper nutrition and exercise with appropriate periods of rest.

Chest physiotherapy (also called CPT) is extremely important after a lung transplant. CPT involves a number of activities that are designed to keep the lungs clear of secretions and prevent collapse and pneumonia. Activities involved in CPT include deep breathing exercises, use of the incentive spirometer, chest precussion, coughing, and the use of inhalation medications (aerosols).

Deep breathing exercises are designed to expand the lungs to their fullest capacity. These exercises help open up even the tiniest airways in the lungs. They also help strengthen the breathing muscles, especially the diaphragm and muscles between the ribs.

The transplanted organ will not have the same nerve attachment. The effect of this is as follows: the old remaining lung (if applicable) will continue to send messages about coughing and breathing, but the new lung will not send messages the same as the old lung. It is important that if mucous or fluid is felt in the back of the throat to make an conscious effort to cough and attempt to clear it.

Exercise

After surgery, exercise will be an important part of the rehabilitation program. In the beginning, exercises will be directed toward maintaining the flexibility of joints and tone of muscles. Physical therapists and nurses will assist until I am strong enough to do them on my own. At first, walking will require assistance, but will then progress to longer periods of exercise designed to increase endurance. In the beginning, ability to exercise will be limited. Once out of bed, it will start with short walks (50 to 100 feet) assisted by others or with a walker. By gradually increasing the distance walked each day, this will help build endurance and strength.

For the first several weeks, as the body gets used to the new lung(s), it is common to fatigue easily and become short of breath quickly. This can be frustrating at times and it may be difficult to feel like the body is getting enough oxygen. Hopefully, supplemental oxygen will not be necessary past the second or third post-operative week. It will take the body and the mind a little while to get used to the new lung(s).

The Immune System, Rejection, Infection and Medications

The Immune System

The immune system of your body works to prevent infections, limit the spread of infections, fight infections and rid the body of foreign living substances (aka - my new lungs). The technical name for a foreign living object is an antigen. When the body recognizes an antigen, it tries to make specific cells called antibodies to fight the antigen. Think about an antigen as a lock on a door that needs exactly the right key to open it (antibody). Your immune system has the ability to make a lot of different antibodies for a lot of different antigens.

Unfortunately, the body may recognize the new lungs as an antigen and will try to make antibodies to fight against it. Therefore, after the transplant the immune system must be suppressed to prevent the formation of antibodies that would cause the body to reject the new lungs. Suppression of the immune system is done with medicines, some of which will need to be taken every day for the rest of my life. While taking these drugs, the body becomes vulnerable to infections with bacteria.

Rejection

The word rejection means that the body has recognized the new lungs as ones that I was not born with. If rejection does occur it means that the body's immune system is trying to fight against the new lung. This is to be expected, but must be controlled by the medications taken after transplant. The diagnosis of rejection after a lung transplant is made by the doctor based on the results of a biopsy performed during bronchoscopy. "Biopsy" means to take a small piece of the lung tissue (about the size of a bread crumb) for examination under a microscope. Before and during the bronchoscopy I will be sedated. To be sure that I am experiencing rejection and not an infection, other tests may be performed including a chest x-ray, PFT's and sputum and blood samples.

Lung biopsies will be performed on a regular basis after transplant as a "surveillance protocol". The treatment for rejection is IV steroids or an increase in steroid medications taken by mouth. Treatment for rejection may need to take place in the hospital and may require a stay as long as 10-14 days. During and after treatment for rejection lung function will be monitored closely.

In the case of chronic rejection, a re-transplant may be considered.

Infection

After a lung transplant, infections caused by bacteria or viruses are of great concern because the drugs taken to prevent rejection increase the possibility of infections. Sources of infection include not only other people and things, but my own body as well. For example, bacteria in my body live in places like the mouth and digestive system help break down and process food.

The diagnosis of infection will be based on cultures taken of blood, sputum, urine and other sources, as well as other tests including blood samples, x-rays, etc. In the hospital, steps to prevent infection include: a private room, limited number of visitors, no flowers, hand washing, wearing a mask outside of the room, walking in the halls during low traffic hours, close monitoring of temperature, oxygen saturation and blood samples.

Prevention

At home, these are the things to help prevent and detect infections:

• Wash hands before meals
• Avoid construction sites
• Avoid gardening
• Don't change litter boxes or bird cages
• Avoid crowds, crowded rooms, and sick rooms for children and friends; also, avoid sick family members and friends if they come to visit
• Contact the transplant team before having any dental work performed (including cleaning)
• Wear a mask when in the hospital or doctor's office

Detection of Infection/Rejection

Monitor body temperature, heart rate, breathing, weight and blood pressure. Notice any unusual coughing or any sores or cuts that won't heal or look red. Early detection of infection/rejection is very important. Generally, the treatment for infection is directed toward treating the infection with the appropriate antibiotics, antiviral, or antifungal medications.

Medications

Here are some of the medications I will be on and the side effects I have to look forward to...

Cyclosporine or Prograf - Supress the immune system & prevent rejection. Side effects: increase in blood pressure, tremors (shaky hands), cramping of the arms, hands, legs and feet, hair growth, changes in kidney and liver function, anxiety, swollen gums, susceptibility to infection and headaches.

Azathioprine - Supress the immune system & prevent rejection by reducing the number of white blood cells that fight infection in the body. Side effects: easy bruising, skin irritations, mild hair loss, intestinal irritation, anemia.

Prednisone - Steroid and immunosupressant to inhibit or decrease inflammation. Side effects: Mood swings (euphoria, depression, easy to anger, easy to laugh), increased appetite, weight gain, muscle weakness, joint pain, fragile skin, easy bruising, increased likelihood of sunburning, softening of bones, rounded face, growth of fine hair around the face, arms, body. My doctor also told me that it makes your bloodsugar high, which means my diabetes will not like prednisone. I will have to increase the amount of insulin I'm taking.

Cardizem - Antihypertensive; lowers blood pressure - to combat the side effect from the Cyclosporine.

Furosemide - Diuretic. Eliminates excess body fluid to help lower blood pressure.

These are the most common drugs, but due to complications from my diabetes and anemia, there could be others.

Getting Ready to Go Home

Getting ready to go home from the hospital will involve learning more about taking my own medications, exercising, diet and nutrition, and how to take my own "vital signs" and FEV1. During the last week in the hospital, I should be ready to take all of my medications all on my own. Physical therapists will help with daily exercise routines while in the hospital. As I get ready to go to a local apartment that we have to rent, the therapist will schedule me to come for exercise Monday through Friday as an outpatient.

Finally, the transplant coordinator will teach me how to monitor and record my vital signs (temperature, pulse, blood pressure, etc.) In addition, the coordinator will help arrange clinic visits and prescriptions from the pharmacy.

Rules After Leaving the Hospital

• Always wear sunscreen when exposed to the sun. Transplant patients have an increased chance of developing skin, cervical and lip cancers. These cancers are ten times more common in transplant patients than in the general population. Therefore, regular dermatologist visits, annual Pap smear and mammograms are required after transplantation.
• Never take aspirin or medicine containing aspirin or ibuprofen, because it is very irritating to the stomach and can cause kidney damage. Use Tylenol only.
• Check weight, heart rate, blood pressure and temperature every morning and evening at 9am and 9pm.
• Hair care - Prednisone will probably effect the condition of hair. Tints, dyes, and bleaches may cause hair to break. Wait until prednisone dose is below 20 mg/day before having permanent color applied to the hair. Use a good conditioner.
• Alcoholic Beverages - Three months after surgery, if there have been no rejections, alcoholic beverages may be drunk in moderation; however, liver damage and liver failure are a concern due to being on Imuran (immunosuppresive drug).
• Pets - NO CATS. Not only do they carry diseases but their fur contains pollen and allergens if they are allowed outside. Also, NO BIRDS.
• Pregnancy - MUST NOT BECOME PREGNANT (That's okay... there are plenty of kids that need to be adopted)
• Modify potassium intake, modify salt intake
• Avoid food borne illnesses and use safe food handling procedures
• Maintain adequate protein intake, minimize fat intake

Housing - 4 to 8 Weeks After Discharge

Upon discharge, we will have to rent an apartment for approximately 4 - 8 weeks (we are hoping to save enough money so we can rent an apartment for my husband and visitors while I'm in the hospital, too). Doctors will check routine labs, chest x-rays and pulmonary function tests as this is a very crucial time in the post-operative course. I will also have scheduled physical therapy Monday through Friday. I will have to make sure that someone is with me 24/7 in case of emergency.

Finally Returning Home

Returning home will be something that I will look forward to my entire recovery. I will have to re-adjust to living in the real world again without the safety net of my doctors and the hospital being right across the street. I will have to keep a close monitor on my condition to make sure I can catch rejection early. I will have to go up to Shands once a month, and then after several months it will go down to every three months, then every six, and eventually only once a year. They will continue to monitor me for the rest of my life.

I will always have to make sure I'm not around anyone that is sick or may have been exposed to anyone that is sick... so I ask all my family and friends to be aware of that and make sure they don't come visit if they have been exposed. It will be an adjustment to get used to, but it's much better than the alternative. It's just what I have to do to live. And I'm going to live the heck out of life when I'm better!