If you’ve received the diagnosis of a spontaneous pneumothorax, known as “bleb disease,” you’re probably wondering “now what? Can I resume my regular world living in Philadelphia? Counseling? Therapy? Life? After healing from surgery some people will need to make little change to their lives. Other people with bleb disease will need to make significant changes due to recurring blebs or collapses and chronic pain as a result of the surgeries. Consider the following suggestions below as you cope with your condition.
1-You are your best advocate.
There is relatively little known about bleb disease. The importance of advocating for yourself becomes even more important given the lack of information about this condition. Family and friends most likely will never have heard of this disease before. Thus you need to prepare yourself to educate them about the disease and specifically what you need from them as you manage your recovery. Additionally not all doctors will be very familiar with this disease. If you are in a major city, there are doctors who have knowledge in this area, and if you are in a rural community you may need to bring some peer reviewed journal articles with you to help bring them up to speed. While your doctor may only have minimal knowledge about bleb disease, they have a much broader understanding of medicine. If you are having trouble locating information, do not get discouraged. While it can be challenging to find information, some recommended articles are:
Chan, P., Clarke, P., Daniel, F., Knight, S., & Seevanayagam, S. (2001). Efficacy Study
Of Video Assisted Thoracoscopic Surgery Pleurodesis for Spontaneous
Pneumothorax. The Society of Thoracic Surgeons, 452-454.
Collins, Robert K. (1994). Hamman’s Cruch: An Adventitious Sound. The Journal of
Family Practice 38(3), 284-288.
Hendricks, P., de Vos, B., Van Schil, P., Van Hee, R., & Hendricks, L. (2002). Long-
Term Results after Video-Assisted Thoracic Surgery for Spontaneous
Pneumothorax. Acta chir Belg 102, 439-44.
Jones, Stephen L, & Fred, Herbert L. (1997). Sudden Retrosternal Pain in a Young
Weight Lifter. Hospital Practice, 152-159.
Leiber, Major James D., & Phan, Captain Nghia T. (2005). Pneumomediastinum and
Subcutaneous Emphysema in a Synchronized Swimmer. The Physical and
Sport Medicine 33(8), 40-43.
Passlick, B., Born, Ch., Sienel, W., & Thetter, O. (2001). Incidence of chronic pain
After minimal-invasive surgery for spontaneous pneumothorax. European
Journal of Cardio-thoracic Surgery 19, 355-359.
A great web resource is:
www.dannfuria.com
Read up on this disease. The better you understand your condition, the better you will be able to manage your condition. In addition, if you know your treatment options before hand you will feel more prepared if you are faced with another collapsed lung and are presented with various surgical options. You will also be more likely to decide for yourself if surgery is even necessary.
2-Know your blebs.
How you experience blebs varies from how other people with bleb disease experience their blebs. Any past lung surgeries could influence the pain level and sensations of the blebs. Other medical conditions or problems from past non-lung related surgeries could influence how blebs feel as well. It is important for you to know what your blebs feel like so you can make the appropriate modifications to your daily life until it heals. In addition, you will be more likely to know when there is a more serious problem, like if the pain is more severe or if the bleb seems to be taking a longer time to heal. Again, its important to know the specifics for yourself. What is the normal course of a bleb for one person, could be different for another.
3-Your pain is real.
Often people with bleb disease experience a phenomenon known as “unexplained pain.” The pain is called “unexplained” because evidence of the cause of the pain cannot be found on x-rays or other scans. However, blebs are not always seen on x-rays. So the pain most likely can be explained by a troublesome bleb that is just not appearing on an x-ray. It is important to realize that even if the doctors cannot see your pain, it is real. You are not crazy. From our perspective, the fact that you have pain which the doctors can’t identify yet, simply means that more research needs to be done so that doctors can better assess and treat this condition.
4-Establish a team of medical professionals.
If you have bleb disease you need to find doctors who are experienced in this area. Given the rarity of this disease, not all good doctors will have had this training. The amount of information that a doctor is supposed to know is overwhelming. Not everyone can be an expert in every aspect of medicine. One way to know if you are with the “right doctor” is that she/he will openly share with you about what they know and what they do not know. Remember, not much is known about bleb disease so even a doctor who truly understands this condition is not going to have all the answers because there are none! Medicine in this area is still in its infancy stages. Additionally, it’s important to choose a doctor who has a holistic perspective of how your mind and body works in conjunction with this condition. Frequently osteopaths are trained to look from this perspective. Finding the right doctor in part will depend upon your personal beliefs. Another type of doctor that you may want to include in your medical team is a pain specialist and a physical therapist. A pain specialist will help you manage the pain and a physical therapist will teach you ways to strengthen the muscles impacted by surgery. Lastly, we strongly encourage finding the right therapist or support group. You don’t have to be alone. Help is available.
5-Learn to explain your pain.
After having experienced a spontaneous pneumothorax you will need to learn how to communicate when you are in pain or when you need help from others. Having bleb disease is not like having a condition where people can easily see the impact, unless of course you are just recovering from surgery. For this reason you are going to need to learn to talk about your pain and learn when to ask for help. While you are recovering from surgery you will likely be more dependent on others and it will likely be more obvious to others that you need help with certain things like carry heavy groceries, walking your dog, doing laundry, etc. However it is likely to be much less obvious to others that you need help when you are experiencing pain from a suspected leaking bleb. Unless you tell others what you are going through and give them specific instructions about what you need, others are unlikely to realize that you need help.
6-Consider daily life adjustments.
While recovering from surgery you will have to make daily life adjustments. Some people with bleb disease, however, will have to make adjustments even after they have healed. Depending on the severity of your condition and limitations you were left with as the result of surgery, you may need to make daily life adjustments. You may have to adjust your level of physical activity and the type of physical activity you engage in. Tasks that were once simple, like carrying in a heavy grocery bag, may now be difficult. These adjustments require you to do things differently-both physically and emotionally. The good news is that your shopping can mostly be done online. You can have fresh organics foods delivered once a week through www.suburbanorganics.com You can buy all of your household cleaning supplies through www.amazon.com. This is just one example of how you can still maintain your independence by being open minded and exploring different avenues for completing various tasks. The point is simple; if you allow yourself to get creative there are simple steps you can take to adjust your lifestyle while maintaining your independence.
7-Be prepared for broader impact adjustments.
Blebs are more likely to stretch or burst if they are subject to changes in atmospheric pressure. Both of these scenarios can be extremely painful or even lead to another lung collapse. Therefore, some people with blebs disease are not advised to fly. This can be a hard adjustment for many people who love to travel or are required to travel for their job. Scuba diving also makes the list for things to avoid if you want to prevent your blebs from rupturing. Some people chose to fly or scuba dive after they have healed and they have not experienced blebs for some time. Only you can decide whether these risks are worth taking. The big question you need to ask yourself is, is it worth the risk? For some people the answer is yes, and others the answer is no. Regardless of what you decide to do, in the short term there are some pretty concrete life adjustments that you will need to make. Our suggestion is to take one day at a time.
8-You may have to become an expert in chronic pain management.
In addition to blebs being painful, the surgical treatment of collapsed lungs may leave you living with chronic pain. As a result of your injury, you may experience permanent nerve damage caused from scarring on your lungs. Due to periods of inactivity resulting from a lung collapse, some people also develop muscular-skeletal pain or even muscle atrophy. Successful management of chronic pain is usually a combination of methods. To determine what helps you best manage your chronic pain you will have to do a lot of research. You will also have to go through a trial and error process with medications, physical therapy and other treatments that may help you better manage your chronic pain.
9-Staying healthy overall becomes even more important.
You should do everything you can to maximize your overall health so that when you do experience a bleb, or have to undergo surgery, your body will be better able to cope with the experience. Staying healthy overall will also help you better manage any ongoing chronic pain you experience. You should eat healthy and even consider seeking the advice of a dietician who could help you improve your diet and incorporate foods that facilitate healing and reduce inflammation. Look into daily vitamins and other supplements that will help you maintain good health. Exercise is very important and it is important to stay within a healthy weight range. While you might be limited in the type of exercise you can engage in, figure out what you are able to do and engage in these activities. Physical therapy can help you strengthen areas of your body that may have weakened by the surgeries. You must also make sure that you are in good mental health. Reach out to others. Attend a support group. Go to therapy. Engage in self-care activities and activities that make you happy.
10-Be aware of the overall impact.
It is important to consider the emotional impact of a collapsed lung and the resulting complications, not just the physical impact. If you experience chronic pain as a result of bleb disease or its treatment, it is important to know that many people who suffer from chronic pain become down or depressed. This is normal and is part of the body’s reaction to being in pain for so long. However it is important to address your depression even if it is considered normal for people in chronic pain. You may need to grieve the loss of activities you once enjoyed depending on the severity of your condition. Due to these changes you may also face an identity crisis. Depending on severity, bleb disease may also change the relationships you had with important people in your life. If you are struggling with the emotional impact of bleb disease, consider seeking therapy to deal with these issues.
11-You may need to modify your sex life.
Your sex life may be impacted if you have experienced a collapsed lung caused by blebs. First, if you are recovering from surgery to treat a lung collapse, you will need to modify your sexual activities. In addition you will need to modify your sexual activities when you are experiencing a period of pain due to complications, of which there are many. Patients may suffer from chronic pain due to the surgery. Also, they may suffer from more pain if their blebs continue to leak air. You will likely need to expand your sexual options. By expanding the type of activities that you and your partner can engage in you are expanding your available options for when sex needs to be modified. Many couples get stuck in defaulting to intercourse and forget about the many other activities that are equally pleasurable and fun. You and your partner can benefit from experiencing a varied sex life and will likely learn more about each other as sexual beings.
12-Be prepared for role shifts.
Depending on the severity of your condition, you may experience a shift in roles and changes in relationships with people important to you after surgery and possibly even long after you recover. Gender roles place certain expectations on male and female behavior. Gender roles must often be challenged, especially if you are a male with bleb disease. You may find yourself at times unable to engage in traditional male roles, like being the one in the family to carry or lift heavy things. Both males and females with bleb disease will also have to challenge gender roles around labor associated with caring for children or a family. It may be hard for yourself and others in your life to adjust to these new roles and expectations. Focus on what you do contribute to the various relationships you are in and what you could potentially contribute. The key is to be patient, open minded and flexible. Do not let societal norms and traditional gender roles prevent you from doing things that are going to improve your health, effectively manage your family and be a supportive partner.
Speaking with a counselor can help. Call The Center for Growth / Therapy in Philadelphia to speak with a therapist today (267) 324-9564.
