Avascular Necrosis -
"Avascular necrosis of the femoral head is a common occurrence in solid-organ transplant recipients, with an estimated prevalence of 3 to 22%. In one study of 63 patients who had undergone lung transplant, an incidence of avascular necrosis of 10% was identified."This is one I had to look up, and talk with one of the doctors on my team about. This is something that the team does keep an eye out for, and is another reason for why they make every effort to minimize steroid use. This issue also seems to be population dependent and seems to occur more often in folks who were transplanted due to Cystic Fibrosis.
As a lung transplant recipient, this highlights the importance of paying attention to your body. New and persistent pains in the hips need to be reported to your team. My exercise routine that strengthens my hips and keep blood flowing around my joints should help with this, as should my diet that is low in inflammatory inducing foods.
Hematologic Complications -
This is another one that made me break out the ol' medical dictionary.
"Cytopenia is the most common hematologic complication of lung and other solid-organ transplants, and occurs due to bone marrow-suppressive immunosuppression medication, namely azathioprine and mycophenolate mofetil and cytoxan, as well as prophylactic antiinfectious medication such valganciclovir, acyclovir, and trimethoprim/sulfamethoxazole."Cytopenia is basically anemia and other disorders that result in a lowered number of blood cells. I know that my team pays very close attention to these lab results and have protocols in place to address any issues that are identified. I really have not done much study on this issue at all. If you are interested in learning more, here is a recent study that you might find interesting.
Thromboembolic Disease -
Another reason why our teams monitor us so closely during that all important first year after transplant.
"Venous thromboembolism disease, which includes deep venous thrombosis and pulmonary embolism, has an increased incidence in lung transplant recipients, with a reported incidence of 8.6 to 29%. Patients that have undergone other solid-organ transplantation have a high incidence (6–8%) of venous thromboembolism as reported in kidney transplants and kidney-pancreas transplants. The time of onset from transplantation to thromboembolic event varies from each study, with two studies reporting a median time of 47 to 69 days, and another reporting a mean time of 11 months with the earliest event occurring at 3 months. The etiology for the increased incidence of thromboembolism in patients who have undergone lung transplant is unclear, but risk factors may be advanced age, diabetes, concomitant pneumonia, greater immobility, and a higher incidence of indwelling cather placement with PICCs and central venous catheters..."My team asks us to check our vitals twice/day, every day, pretty much forever. This includes blood pressure, pulse, temperature and a pulmonary function test. Paying attention to your body, noting changes in your vitals, and staying in close communication with your team is how issues like this are caught early on.
Gastrointestinal Complications -
Now we are getting back to a potential complication that I am actively working to minimize.
"Long-term gastrointestinal complications are common in lung transplant recipients, likely due to higher doses of immunosuppressive medications. In the immediate postoperative transplant period, ileus and colonic perforation are the most commonly encountered gastrointestinal problems, and these can be life-threatening. Long-term common complaints are of nausea, vomiting, gastroesophageal reflux disease, diarrhea, constipation, and abdominal pain. It is estimated that over 60% of patients who have undergone lung transplant have at least one gastrointestinal complaint, and while mild, it can have significant impact on the quality of life of these patients"I am a very strong advocate of using diet to help maintain a healthy gut. Happy gut bugs help a person to lead a healthier life. My daily medications include two different antibiotics, one to prevent a type of pneumonia that lung transplant patients are susceptible to, and one to keep a virus that came with my new lungs under control. I talked about how I maintain a health gut in Pre, Pro, and Anti - Biotics.
My team has prescribed a Proton Pump Inhibitor (PPI) to both prevent acid reflux (acid in my lungs = bad times) and help prevent ulcers that may be caused by my meds. I also have an annual colonoscopy to keep an eye out for any colon issues.
So far, diet and exercise really has minimized 'tummy' issues related to my medications and the transplant.
Neurological Complications -
This is a very personal one for me. Before my transplant, I begin to notice that I couldn't trust my mental math skills. While at work, I came up with the wrong answer to simple math problems. I knew the answer was wrong, just couldn't get to the correct number. I spoke with this with a neurologist during my pre-transplant workup, but he didn't have an answer as to why this was happening. I had hoped to get my math back after my transplant, but nope. Good thing we have iPhones. I know that this example is not a complication of transplant, just what has happened with me. Post transplant issues I see are the occasional bout of tremors and an overall mental fog. These are both side effects of my medications. Here are some more potential issues:
One study of 100 patients who had undergone lung transplant reported an incidence of 26% of patients having a neurologic complication in the form of severe headaches, seizures, strokes, and confusion.The best way to protect against these issues is to pay close attention to what your body is telling you, and let you team know if you start having issues. Your team can adjust your meds as necessary to minimize most issues.
The immunosuppressant medications that keep your immune system from attacking your lungs, also suppresses your ability to fight cancer. This is why there are hard and fast rules requiring a transplant candidate to be cancer free for certain time frames before considering that candidate for the procedure.
Patients who have undergone solid-organ transplant are known to have a higher prevalence of malignancy than the general population. Some estimates place a three- to fourfold increase in the risk of malignancy in solid-organ transplants compared with the general population, while the relative risk of specific cancers may be increased by 100-fold. The incidence of malignancy may be even higher in patients who have undergone lung transplant than in those who have undergone other solid-organ transplants.Skin cancer prevention has become a major part of my personal concerns. I'm going through my third of 3 Blue Light treatments in five weeks this coming Wednesday. I see a dermatologist at least every 6 months. Each time I saw her, she had to burn-freeze-cut off more actinic keratosis and pre-cancer spots. At my last routine visit, there were too many to remove, so we are using the chemical/blue light therapy to maybe put a stop to the issue. I write more about what I do to prevent skin cancer here, but it needs to be updated as I've become much more strict about limiting my sun exposure and wearing high SPF sunscreen.
The team keeps an eye out for the earliest signs of any type of cancer. We have routine labs quarterly after the first year and an annual workup that includes more scans than many people receive in a lifetime.
My go-to cancer preventative is still diet and exercise. It is just an N-1 experiment, but I'm feeling pretty great so far and will continue on as I am.
Post-Transplant Lymphoproliferative Disorder -
Ok, honestly, I have no idea of what this is or how to avoid it.
PTLD comprises a spectrum of disorders that arise in post-transplant patients that are due to abnormal lymphoid proliferation. Histologically, PTLD ranges from benign polyclonal hyperplasia to malignant monoclonal lymphoma. Clinical presentation of PTLD in patients who have undergone lung transplant widely varies from nodal local involvement to extranodal and disseminated involvement.The good news is:
Treatment is centered around lowering immunosuppression. Immunotherapy with rituximab, an anti-CD20 monoclonal antibody, has been used with success for PTLD in solid-organ transplants and in lung transplants.There's a treatment, so if it happens the team will handle it. Yep, I trust my team that much.
A small excerpt from the conclusions:
As the overall expected survival in patients who have undergone lung transplant has improved, and as more patients live longer, long-term medical complications that arise as a consequence of immunosuppressive therapy are seen more frequently.That is kind of a Duh statement, but it says a lot. "...the overall expected survival in patients who have undergone lung transplant has improved, and as more patients live longer..."
We are living longer, more active, and higher quality lives. Yes, a lung transplant is one scary, rough, hard core procedure. And yes there may very well be complications, but life after transplant can also be wonderful, exciting and fulfilling.
I recently shared a panel with a couple other lung transplant recipients, Larry and Nancy. I was the baby of the group.
12 years, 5 years and coming on 2 years post-transplant. Living well and enjoying life.
I didn't write these posts to scare anyone off of the idea of talking with a team about the possibility of receiving a lung transplant, and I certainly hope I haven't done so. I firmly believe that an educated patient is an empowered patient #ePatient. We have to go into this procedure with our eyes wide open, knowing the potential risks, and knowing the potential rewards are more than worth it.
I do hope this post helps to highlight the importance of observing the 'rules' as laid out by your team. Take your meds on time, all the time. Avoid infection. Take proper precautions with sun exposure. Avoid restricted foods (some affect the meds). Get active. Monitor your vital signs at least daily, twice daily is recommended. And more importantly, pay attention to what your body is telling you. Your body will let you know when there is an issue. You will have a phone number to contact a member of your team 24/7, use it when you need to.
If this is your first time here, and if you are interested, you can read about My Lung Transplant here.
Life is good, being able to breathe is awesome, and Donors are Superheroes.