Living with two foreign lungs and 70 pills a day "I have no doubt, life is beautiful"

undeniable (47)in #story • 7 years ago (edited)

On November 2017

Maria Margarita Gamboa underwent a medical intervention at Cleveland Clinic. She had lost weight and muscle mass, her values were below normal and she had chronic diarrhea; through the esophagus, they put a capsule with a monitor in her stomach to try to find the cause. It could all be a side effect of the double lung transplant you received, but the cause could also be another. Until today, the doctors are still not clear what is happening to her.

For almost three years

Maria Margarita has been living with two transplanted lungs and the possibility of rejecting them: her body recognizes them as foreign objects and usually tries to get rid of them by damaging their tissues. Rejection is the greatest risk for any transplant patient and, although it is most common during the first few years, it can occur at any time.

Fevers, chills, dizziness, nausea, night sweats... there are many indicators that something may be wrong with your body, but rejection can also be asymptomatic and not always treatable. That's why, since the transplant, on December 23-2014 she has been taking anti-rejection medications and must have different daily, weekly and monthly check-ups to monitor her values and organs.

I never thought I'd hear so much of the word rejection as I never imagined the happiness I was going to feel every time they said,"No rejection," Gamboa says. It provokes singing, jumping, crying, screaming, dancing, holding hands, it is something inexplicable. No matter how many times it happens, every day I get a result I feel the same emotion.

According to United Network Organ Sharing In 2016

2327 lung transplants were performed in the United States more than 80% of these patients survive at least one year after surgery, and between 55% and 70% after three years. However, in Maria Margarita's case, the prognosis is uncertain because she has systemic scleroderma, a rare autoimmune condition.

The cause of her transplant was the stone woman's disease, also known as scleroderma, which hardens tissues and skin. She was diagnosed in 2007 and progressed so far that she enlarged her heart and affected both lungs, to the point that she could no longer breathe. Now she's breathing, but scleroderma is still active and could take the new lungs, damage theire tissues and make them stop.

Wayne Tsuang and Marie Budev are two of the doctors on the transplant team at the Cleveland Clinic who care for Maria Margarita in Ohio. Lung specialists say that in addition to rejection the patient also has risks of infections (bacterial, viral and fungal), due to the use of immunosuppressive drugs (the anti-rejection drugs) that weaken his or her immune system.

She have been especially warned about respiratory infections, which are the most common in this case, and she should take care of cytomegalovirus (CMV), which can affect almost any organ. And there are risks of chronic kidney disease, worsening of your hypertension, deterioration and loss of bone mass and the development of cancer, including medication and side effects.

For her, the risks include all of the above and chronic aspiration through the lungs (saliva and fluids go into the airways) and from skin ulcers, due to her scleroderma. The risks will be there forever and she must change her hobbies, activities and lifestyle to try to avoid some of them.

70 pills a day, $7,000 a month.

Maria Margarita's days begin at 6:00 am at her home in Miami with a check of her vital signs; she measures blood pressure, temperature, glucose, lung function and weight three times a day, after which she makes a report. At that time, she also plays the first dose of pills: between immunosuppressants, anti-rejection drugs, steroids and vasodilators, she takes 70 pills a day and the number can increase, depending on the adjustments made by her doctors.

Not every day is a good day

Those wich are not good I have to accept them, stand up and say forward without looking back she explains. In the morning, when she has more energy, she plans his next appointments, exams, checkups with the transplant team in Cleveland, prescriptions and drug purchases. She does it all with the help of a transplant coordinator assigned to her by the hospital.

Between medical checkups and drugs, post-transplant care expenses can exceed $7,000 a month and unanticipated testing is always possible. Neither social security nor private policies cover 100% of the expenses. There are government and state plans that offer financial assistance, however, many patients have to resort to institutions or fundraising strategies such as Maria Margarita.

In addition to savings, donations and help from family and friends, it is funded through "Respirar es vivir" a foundation created to support patients who require transplants or people who have already received them. They raise funds through "GoFundMe" and by selling bracelets with the word "Hope" printed on them.

Extreme care and a large dose of uncertainty

Do not eat red meats, seafood, dairy products, or unpasteurized beverages. Buy vegetables and fruits as fresh as possible, take care that canned products are not packed and drink bottled water. Wash hands with turnip and hot water before touching food and eating, use disposable breads to wash and dry dishes, use plastic cutting boards because wooden ones accumulate bacteria.

The alert list seems endless. An oversight can be so dangerous that you should even use a thermometer of meat to verify that they are cooked well before eating them. And you should pay special attention to the cleanliness of your home and the spaces in which it operates. All in order to prevent possible viruses or bacteria that her body is not able to fight. For her "is a routine full of uncertainty.

On medical advice, you should exercise every day; they cannot be contact sports, or abrupt. That's how she got to Pilates and ballet, which are also a way of restoring inner peace. Another activity that has helped her emotionally is photography and this year she managed to make her first exhibition in Miami.

As ambassador for the Life Alliance Organ Recovery Agency, Lifebanc and the United Network for Organ Sharing, she gives talks and workshops to promote donation in schools, hospitals, churches and businesses, especially in the Hispanic communities of South Florida: "I am alive because a person decided to be an organ donor"

María Margarita Gamboa is no longer "the lawyer" and university professor she is still trying to adapt to his new reality and to live without certainties such as not knowing if she will have enough money next month to pay for his expenses, why she is losing so much weight and muscle mass or, simply, how much longer her life will be with his two foreign lungs

"Sometimes it is so overwhelming that it is almost impossible to carry, but I am succeeding one day at a time. I was ready to die, so I focus on life, every day. I have no doubt, life is beautiful"