Pulmonary hypertension is a type of high blood pressure that affects the arteries in your lungs and the right side of the heart itself. Some forms of this disease are serious conditions that get progressively worse and can lead to death. Pulmonary hypertension causes the tiny arteries in your lungs called the pulmonary arterioles, and the capillaries become narrow, blocked and eventually destroyed. This can limit and can cut off blood flow and supply to your lungs, which in turn raises the pressure within the lungs and arteries. As pressure continues to build, the lower right chamber of the heart, or right ventricle, must work harder to pump blood through your lungs, which then causes your heart muscle to weaken and eventually fail.
While some forms of pulmonary hypertension are not curable, treatment can help to control and lessen the symptoms and increase the quality and longevity of life. Living with pulmonary hypertension can be difficult and hard to adjust to. There will need to be changes made to accommodate this disease where intimacy, intercourse, or any amount of exercise is expected.
What are the signs of pulmonary hypertension?
In the early stages, pulmonary hypertension is not always noticeable and can remain hidden for months or years before symptoms truly begin to show. As it progresses, these symptoms become very magnified and worsen rapidly. Those symptoms include:
- Shortness of breath initially while exercising and eventually while at rest.
- Fatigue that seems to come on strong or at unexpected times, or that lasts, and lasts.
- Dizziness or fainting spells with syncope.
- Chest pressure or pain that does not ease or comes on suddenly or abnormally.
- Edema and swelling in your ankles, legs and eventually in your abdomen.
- Bluish color to your lips and skin is a sign of cyanosis, and a sign that oxygen is not being moved in the body as it should be.
- Racing pulse or heart palpitations out of the norm for your body.
Do I have a higher risk factor for developing pulmonary hypertension?
If you are in any of these categories, your risk for developing pulmonary hypertension may be higher.
- You are a young adult, as idiopathic pulmonary arterial hypertension is more common in younger adults
- You are overweight or obese.
- You have a family history of the disease or other respiratory or pulmonary conditions.
- You have one of the various conditions that can increase your risk of developing pulmonary hypertension.
- You use illegal drugs, such as cocaine or amphetamines.
- You take certain appetite-suppressant medications or diet pills.
- You have an existing risk of developing pulmonary hypertension, such as a family history of the condition, or you live at a high altitude.
What are the complications I face living with pulmonary hypertension?
This disease can lead to a myriad of complications. The most important on the list to pay close attention to are:
- Blood clots. Blood clots help your body stop bleeding after an injury. In some cases, these clots can form where they are not at all needed. If a number of smaller clots or one larger clot dislodges from the vein and travel into the lungs. This type of pulmonary hypertension can generally be treated and can be reversible with time, treatment, and the proper lifestyle. Having pulmonary hypertension increases your risks of developing clots throughout the body, but especially in your lungs where your arteries may be narrow or blocked.
- Arrhythmia is a word meaning, irregular heartbeats, from both the upper and lower chambers of the heart. This complication of pulmonary hypertension can cause fainting, dizziness, and can be fatal.
- Right-sided heart enlargement and heart failure happen when the heart becomes enlarged and has to pump blood much harder than usual to move it through the smaller arteries. At first, the heart will compensate by thickening its walls and expanding the chamber of the right ventricle to hold more blood. This thickening and enlarging are not good and will eventually cause the heart to fail.
- Bleeding happens with pulmonary hypertension when the lungs are aggravated and irritated from coughing and the over-function of the heart. Coughing up blood or hemoptysis can be a potentially fatal condition.
How will living with pulmonary hypertension affect my ability to be intimate and sexual with my partner?
Pulmonary hypertension comes with a host of symptoms and annoying side effects that can definitely hinder your intimate time. More important than anything is to remember to openly communicate with your partner about all aspects of your disease and how you can work together to ensure you both can still share pleasure-filled moments and intimate time together.
One of the first things that can affect a person with pulmonary hypertension’s life is the new addition of an oxygen tank and cannula. The oxygen must be worn to help your body get the amount of oxygen it needs through the narrowed arteries, and the cannula is the piece of the tubing that rests on your nose and around your ears on a daily basis. Many have a hard time adjusting to this very visible change and feel that being tethered to a machine is life-altering.
Others first realize they are having serious issue when they cannot perform intercourse for longer periods of time or do any sexual activity without becoming out of breath and faint. Some lose their confidence in being able to please their partners or themselves because the lack of oxygen can cause other sexual side effects all throughout the body. Erectile dysfunction, loss of the ability to orgasm, and lost libido are only a few of the reported issues of the newly diagnosed with pulmonary hypertension.
People diagnosed who are not in a long-term relationship worry that they will not find anyone who will want to share the difficult journey with them, or have trouble finding the courage to share the details and possible intimate related side effects that come with the territory. Because of the nature of this disease and its ability to cause rapid deterioration, many people simply choose to ‘give up’ on intimacy and relationships.
All cases of pulmonary hypertension are different and will cause different issues for you in your intimate and sexual relationships with your partners. This is inevitable as the disease makes breathing very difficult, which makes any activity involving any amount of real energy a challenge or even impossibility.
My partner has Pulmonary Hypertension and I would really like to try and reclaim our intimacy together. Any tips on how to do this?
Absolutely! It can be difficult for partners to go from a two-person partner team to a caregiver-patient scenario. And while communication is always the key, intimacy and sexuality play a huge role in maintaining the balance, too. Here are some tips to gradually engage in conversation about your intimacy, and how you can reclaim some normalcy once again together.
Allow for a period of adjustment. One patient told us, “If someone had told me how difficult the first year with PH was going to be on our marriage, I think I would have been better equipped to handle the fighting. I wouldn’t have taken it so personally. Looking back, I can see it wasn’t that we were broken. It was that we were both worried out of our minds. Now, four years later, we take things one day at a time, and we’re closer than ever.”
Find ways to care for your caregiver. While you might not need to care for your loved one the way that he or she cares for you, it can be helpful to identify places where your caregiver needs and appreciates your help and support. This can help reestablish a sense of balance in the relationship.
Do what you can for yourself. When you’re feeling up to it, do the chores you’re capable of. Helping out around the house when you’re able can offer a sense of independence and contribution that many patients miss when they’re feeling sick.
Know and respect your limits. Talk openly and honestly about what you can and can’t do. Listen to your body and encourage your caregiver to listen to you when you communicate your limitations.
Work up the courage to talk about physical intimacy. Pulmonary hypertension patients and their partners have active and fulfilling physical relationships. If you or your caregiver is concerned about your physical limitations in the bedroom, raise your concerns with your doctor and nurses. They have heard it all before and may have recommendations, tips and suggestions from other patients. Pre-discussion helps to get the details about air tubes, GI tubes or any other apparatus that is now attached to your partner out of the way, so the good times can be enjoyed.
If you are struggling with intimacy after being diagnosed with pulmonary hypertension, do not hesitate to contact your doctor and discuss the possible ways to further ease or work around your symptoms so you can once again enjoy spending intimate time with your partner while still living with this debilitating disease.