It has been almost 5 years since my second double lung transplant (March 2010) and 13 years since my first (March 2002). It is truly amazing how fast the time has flown by. I’m here because someone gave me the gift of life. Not a day passes that I do not stop to reflect how grateful I am. Their gift, the most unselfish gift ever, has given me the opportunity to live; to breath, to laugh and create memories.
In the past 13 years, I have done and seen more than most people will in a lifetime. I have watched my family grow in size, enjoyed adventures all over the world, made new friends and even got my own dog (the best dog in the world – Sheba). The time has allowed me to blend into society – to feel somewhat normal and not have to worry about any of my old arduous C.F. treatments.
Not a day goes by without my sincere gratitude and appreciation to the families that have given me this gift. That’s truly what it is, a gift of generous portions that have allowed me to share time with my family, friends, and others, whose connections I have made through social media.
Only about 55 percent of patients survive five years after transplantation. Those rates are a little better at networking hospitals, where about two-thirds of patients can expect to survive that long. Nationwide, only a third of patients live 10 years. It is unclear what, exactly, goes wrong after the first year.
Most patients die of what is known as chronic rejection, which causes the airways of the lung to deteriorate slowly. Doctors do not yet know how to prevent or stop this process. This is the main reason why some people are re-evaluated for a second lung transplant. The procedure is the same as the first one but with more variables. The patient still has to go through a series of tests to see if they are physically and mentally able to handle a large operation as well the medication given after transplant can lead to high depression!
Over the last few months, my PFT’s have been slowly falling, Pulmonary function tests are a group of tests that measure how well the lungs take in and release air and how well they move gasses such as oxygen from the atmosphere into the body’s circulation. This is a common test used for anyone with lung issue. After a lung transplant, this test is done monthly to make sure there are not any complications such as infection or rejection.
There are three kinds of rejection after a transplant:
Hyperacute rejection happens within minutes after a transplant has been done. This is due to antibodies in the organ recipient’s bloodstream that reacts with the new organ and results in organ failure. During this rejection antibody molecules suddenly bind with multiple target cells leading to death.
Acute rejection this is the most common type of rejection for transplant patients, it develops generally within the first month after surgery but it may appear at any time, even years after. Lymphocytes from the thymus (t-cells) are blamed for causing acute rejection. For most organs, the only way to show unequivocally that rejection is occurring is by biopsy of that organ.
Chronic rejection is also so known as either hyperacute or acute rejection. It is caused by multiple factors: antibodies as well as lymphocytes. Transplanted lungs with chronic rejection are said to have “bronchiolitis obilterans“, a scarring problem in the substance of the lung.
Due to the consistent drop in my PFT’s the transplant team decided to have me in for a bronchoscopy. Bronchoscopy is a test to view the airways and diagnose lung disease. It may also be used during the treatment of some lung conditions.
The following day after my bronchoscopy I received a call from my transplant coordinator letting me know that they had found the Influenza virus in one of the washing from the bronchoscopy. Influenza is a real bad flu for most people but for people with chronic illnesses/transplanties such as myself, can cause more issues as well damage my lungs. I was put on a 5-day treatment of Tamiflu; in addition, I took some time off work just to so I could recover a little faster. I returned to work at the end of the week feeling much better.
A few days after my return to work, I received a call from my transplant coordinator telling me that they had the rest of my test results back from my bronchoscopy. I was kind of worried, as I always believed that no new is good news. The test results came back showing I had developed antibodies and some rejection. As I listened I could feel my heart racing, I felt light headed and a knot of dread formed in my stomach. I was told to come in the following week to have my blood and PFT’s done.
Antibodies and rejection are two things someone after a transplant do not want! Antibodies are large Y-shaped proteins in the plasma of the blood cell. They are recruited by the immune system to identify and neutralize foreign objects like bacteria and viruses. Antibodies can also develop through exposure to foreign tissue, through pregnancy, blood transfusion or a previous transplant. The main concern of finding antibodies or proteins in the blood are that they will identify and attack foreign tissue, such as transplanted donor organs.
It should be clear why rejection is not good for any transplant recipient. Almost every person who has had a transplant encounters acute rejection. When a person receives an organ from someone else during transplant surgery, that person’s immune system may recognize that an organ is a foreign object. This is because the person’s immune system detects that the antigens on the cells of the organ are different or not “matched.” Mismatched organs, or organs that are not matched closely enough, can trigger a blood transfusion reaction or transplant rejection.
This is why the transplant teams react quickly when both of these issues come up in a patient’s results. When I head down to Toronto General Hospital to do my monthly blood and PFT’s, there are few things the team would look for in the blood during these tests.
WBC tells us if your white blood cells have increased (usually a sign of infection) or decreased (indicating a lower defense against infection).
HCT measures your hematocrit, the percentage of red blood cells present in your blood. Red blood cells carry oxygen to all parts of the body. When your HCT is low, you may feel tired or have little energy.
PLTS measures the level of platelets in your blood. Platelet cells form blood clots when your body is injured. Low platelet levels may cause you to bruise easily and to bleed for a longer time period.
There are also a couple of drug levels to be drawn as some of the medication taken can be too high causing toxic levels in the patient. Drug toxicity is also a major concern as the body has basically been poisoned leading to severe central nervous system (CNS) toxicity, manifested by confusion, cortical blindness, quadriplegia, seizures, and coma.
Blood work is also a monthly requirement after transplant as it helps to monitor all drug levels. It also helps to monitor kidney and liver levels as the medication taken after a transplant is very hard to these two organs.
Heading for my PFT’s, I still felt a little short of breath. I had been experiencing shortness since my run in with the Influenza virus. Once my PFT’s were completed I was asked if I was feeling short of breath as I had dropped another 30% in my lung function.
Thirty percent is a large amount to lose in just over a month. These results set off alarms for the doctors to step in and figure out what is going on and what is the best form of treatment.
The next day I received a call from my transplant coordinator telling me I needed to come into the clinic on Monday. There was no need to redo my PFT’s but the team wanted me to repeat my blood work as well have an antibodies count drawn and a Xray to see if there was any infection in my lungs.
My mom (Tanis) decided to tag along to my clinic appointment as she had some questions of for her own and wanted to see what the doctors had to say. We met with the doctor and she told us that she was worried about the antibodies they found. The transplant team speculated that I had developed some kind of virus in November or just before as that is when I started to show signs of my PFT’s dropping. This would also explain why I could have developed these antibodies all of a sudden.
Now you probably have come to the conclusion that antibodies are good, for most people as it helps them fight off virus and illness. But for someone who has had a transplant or needs to be imunnesupressed they are not. Imunnesupressed involves an act that reduces the activation or efficiency of the immune system. Some portions of the immune system itself have immunosuppressive effects on other parts of the immune system, and immunosuppression may occur as an adverse reaction to the treatment of other conditions.
The formation of these antibodies and the protein they make are not a good thing for me. My immune system goes into attack mode making proteins to fight off what they think is an alien organism which in this case is my lungs.
What are the treatments to remove this protein and antibodies; this was the first question that was asked. Plasmapheresis is the treatment that they use to help stop rejection. In addition to Plasmapheresis, they also recommend a large pulse therapy of the drug prednisone which is a treatment used in chronic rejection. Pulse therapy is a discontinuous I.V. infusion of a high dose of prednisone (more than 250 mg) given for one or more days.
Plasmapheresis is a little more complicated, a few more steps are involved in this procedure. Simplified I think of a large trash can or an oil change for the body – the blood being the oil.
It is a procedure similar to dialysis where my blood is spun in a centrifuge, filtered through a machine that separates it into plasma and blood cells. The plasma is removed and replaced with another solution, such as saline solution, albumin, anticoagulant and the reconstituted solution is then returned back to my body. The anticoagulant is added so the chances of blood clots are less likely to happen, as a blood clot could cause a stroke.
Removing the plasma also removes the antibodies that have been sent out to attack my lungs. Plasmapheresis is used as a treatment for many conditions mostly including autoimmune disorders. While there are risks, the procedure is pretty safe.
The reason why the albumin is added back to the blood is because it makes up 60% of the total protein in our blood and plays many roles. It keeps fluid from leaking out of blood vessels, nourishes tissues, and transports hormones, vitamins, drugs and ions like calcium throughout the body.
For the Plasmapheresis treatment to go smoothly I needed a central line put in. My veins have been well used in the past with all of my hospital admissions. This procedure is usually done in a room like an OR Room as there is some special equipment required (CT scan and an Ultrasound Machine). I did not get my central line input in till a few days after my admission, as there had been a long waiting list. This will push back my hospital stay a little longer than planned.
My central line was inserted on the right side of my neck, not a pleasant location, however, the job was done. I could officially start making maple syrup, I mean to start my Plasmapheresis treatment. It felt as if I was tapped like a maple tree, to collect sap. Unbeknownst to me, I developed “taco neck” this would be my own medical term. Let me explain what “taco neck” is; it when you tilt your head left or right on a 20-25 degree angle as if you were eating tacos so all that delicious filling slides right into your mouth. However I was not eating tacos, it was just that my neck was stiff and sore. It may be convenient while eating a taco, however, having your neck in that position for two day’s will cause some discomfort not to mention look a little funny. This un-medical term “taco neck” was a result of the catheter being too tight resulting in my neck muscles tensing up. This only lasted for two day’s so I was quite relieved once it went away, allowing myself to sleep a little better at night.
A central venous catheter, also called a central line, is a long, thin, flexible tube used to give medicines, fluids, nutrients, or blood products over a long period of time, usually several weeks or more. A catheter is often inserted in the arm or chest through the skin into a large vein. The catheter is threaded through this vein until it reaches a large vein near the heart. A catheter may be inserted into the neck if it will be used only during a hospital stay.
I had a reaction to the Plasmapheresis during my first treatment. My blood pressure dropped considerably causing dizziness, light-headedness, some loss of concentration, a little blurred vision in my right eye, nausea, my feet/hands and head felt cold clammy and my skin was a little pale. My breathing was shallow; I was really tired as well I developed a migraine which lasted over 8 hours. They attributed this to the fact that I had been given my blood pressure medication before the procedure. In addition, I reacted to the blood thinners that were given during the Plasmapheresis.
My second treatment went a lot better, I was not given my blood pressure medication before going down and the blood thinner was decreased. My blood pressure did drop however not as low and I did not have any of the other symptoms.
The Plasmapheresis treatment is a minimum 5-day course; I asked the nurse what the cost of this procedure would be if I did not live in Ontario. She asked me to guess, I came up with $1,000 each session. She told me I was very close and was impressed, then informed me that each session can cost up to $1,300-$2,000 per procedures. Thus a five-session course of Plasmapheresis can cost anywhere up to $5,000-$10,000, (not including hospital stay) now that is one expensive oil change! Another reason to be thankful for the health care provided in our country.
Once I have finished the five-day treatment of the plasmapheresis the transplant team will decide if they want to go ahead with the pulse treatment of prednisone. They would like to wait until I am finished the plasmapheresis as they want to deal with each issue at a time or wait till I have had my 3rd treatment of plasmapheresis. The reason for this is so the pulse drug given through the IV will not be cleaned out of my blood during the next plasmapheresis.
Once again my support team (friends, family, individuals I have never met over social media and my transplant team) have been by my side the entire time. Words can not describe how much this means to me. It helps to build my spirits when they are low. It helps to give me back my sanity when I am on the verge of losing it after endless hours of sitting around my hospital prison.
Your continued support has helped me to be the fighter. Your encouragement lifts my spirits. Once again I find myself standing in that dark, chilly, damp, lonely lion’s den. As I stand I feel the cold loose sand in-between my toes, my feet lightly sink with each step. However, I will not fall. Your support allows me to stare deep into the powerful green-yellow glow of the lion’s eyes. I will not let fear overcome me. Your energy fills me with the strength and power necessary to put the lions to sleep, allowing me the chance to climb out of the lion’s pit once again, scarred but even stronger!
My greatest thank you is given from myself and my family!
Category: Another Perspective, Blog, Gift Of Life, Life Story, Organ Donation, Pass.it.onTags: (t-cells), Acute rejection, albumin, Another Perspective, Antibodies, antibodies count, anticoagulant, autoimmune disorders, Blog, blood pressure dropped, bronchiolitis obilterans, bronchoscopy, C.F. treatments, calcium, central line, central venous catheter, cf, Chronic rejection, CNS, collect sap, CT scan, Cystic Fibrosis, Drug toxicity, drugs, family, friends, Gift Of Life, HCT, Health, hormones, Hyperacute rejection, imunnesupressed, Influenza, ions, Lymphocytes, maple syrup, OR Room, plasma, Plasmapheresis, PLTS, prednisone, proteins, Pulmonary function tests, pulse therapy, re-evaluated for a second lung transplant, saline solution, social media, stroke, taco neck, Tamiflu, Transplant, Transplantation, Ultrasound Machine, update, veins, vitamins, washing, WBC, Xray