I'm Aware That I'm Rare: Joanne Sperando

Joanne Sperando lives in North Babylon, NY and was the third person in her family to be diagnosed with Pulmonary Hypertension (PH). Joanne’s mother lost her 23-year-old sister Josephine to PH in 1963.  Joanne’s brother John was diagnosed in 1995 and passed in 2015 and she received her diagnosis in 1998. Joanne formed and currently co-leads the Long Island Pulmonary Hypertension Support Group. In this episode, Joanne shares a number of important lifestyle tips for newly diagnosed pulmonary hypertension patients. 

Transcript:

My name is Joanne Sperando, and I am a long-term survivor of pulmonary hypertension.

Today I would like to talk to you all about some lifestyle tips.

We’ve seen in our support group folks who are newly diagnosed coming in, and they didn’t hear everything their doctor said, or they were overwhelmed by their diagnosis. But they don’t remember some of the lifestyle things that they have to watch for, and I’d like to share some of them with you today.

Under the topic of recreation, some of the things that we have to be careful of are treating our bodies perhaps a little more gently than we would if we were 100% well. You might want to speak to your doctor about some of these activities and if they’re the best idea for you.

One of those things is sun exposure. If you’re on certain medications, that’s going to make you more photosensitive. Also, being in the sun can be very draining. PH patients can be more sensitive to the sun. That’s just something to keep in mind.

The other thing that you should really be aware of is that PH patients really don’t do well in hot tubs, saunas, steam rooms, even super-hot showers. I only passed out once in 19 years with pulmonary hypertension, but the second time that I came incredibly close was when I had taken a very, very hot shower. The reason for that is that we are already vasodilated. All the drugs that we take dilate our blood vessels. A hot tub, or a sauna, or a steam room does that even more. That is very overwhelming to the heart and can make you feel very faint. There’s also a vapor that hovers over a hot tub that contains bacteria if the tub is not 100% clean. That can cause an illness called hot tub lung. As you know as a pulmonary hypertension patient, we have to be really careful with our lungs. Hot tubs and saunas are something that you might want to avoid.

Also, if you’re on blood thinners, life on blood thinners is definitely a little more complicated for us. We have an increase of danger. If we hurt ourselves, we are going to bleed internally as well as getting a bruise. I’ve heard stories from other PH patients of a woman who went sailing and bumped her head on the mast of the sail and ended up getting a brain bleed and requiring surgery. My INR had gotten out of control, and I didn’t know it. But I was in between tests. I hit my leg and bled into my leg and developed something called compartment syndrome. I required emergency surgery.

Life on blood thinners is complicated, so you want to consider any leisure activity that you think is possible that you’ll get hurt, but definitely talk to your doctor. You’re going to hear me say that over and over today. Some people might be OK to go into a steam room. Talk to your doctor. That’s what’s really important.

Another thing that we’ve heard a lot of is PH patients going on rides at an amusement park. Some of those rides have become so intense that you can actually be pulling Gs on a roller coaster. That can also cause you to faint or make you feel faint. That’s also something that you should talk to your doctor before you dive into.

A good rule of thumb is always remember to keep your head higher than your heart. If you are exercising or you’re doing yoga, just remember that being upside down might not be the best position for you. We were also told not to lift very heavy weights. Most of our PH patients come to the support group and say they’ve been given restrictions of no more than five or 10 pounds. Again, talk to your doctor before you’re going to do anything that strenuous.

PH patients tend to have good days and bad days. All the good days, sometimes you feel like, “I feel wonderful. I am going to clean the entire house today from top to bottom.” I can almost promise you that you are going to be paying for that tomorrow. I think it’s important for PH patients to remember to pace themselves. Overdoing will absolutely lead to a problem or exhaustion. Then you’ll have to pay for that for sometimes several days.

We’ve also talked about being out in the cold. The cold air is very constricting. It’s probably not a great idea for a PH patient to be out there shoveling heavy snow. It might be worth it to you to perhaps hire the local kid to shovel your snow. Just remember that exerting yourself when it’s cold out can be very dangerous.

When it comes to your overall health, most PH doctors recommend the flu shot annually. Again, speak to your doctor. It may be different for your individual case, but most often, they’re encouraging us to get the flu shot in addition to the pneumonia vaccine, which you can get once every five, seven, or 10 years, depending on how your doctor feels about it.

It’s important to remember to be careful when you’re around anyone who’s ill. You want to do your best not to get sick. That means that your family, anyone who’s physically living in your house, should also consider getting the flu shot.

We also have some medication issues that have come up. Again, folks have walked into the support group never hearing this or not remembering if their doctor told them. No muscle relaxers. Our preferred drug is usually acetaminophen. If your doctor approves you taking muscle relaxers, that’s fine too, but definitely talk to the doctor first.

Decongestants can be dangerous for PH patients, as they constrict vessels. Some of them contain caffeine, and they can cause palpitations and irregular heart rhythms, so be very careful. If you do have a cold and you go to the drug store, you want to make sure that you’re not getting a drug that is going to exacerbate your pulmonary hypertension.

You also have to be careful of supplements. Some supplements can impact your coumadin level, your blood thinness. Definitely research interactions on any supplements that you might take.

The other thing when it comes to medical issues is if you’re having a visit to the ER even for another reason that has nothing to do with your PH, it’s imperative that the ER doctor bring your PH doctor into the discussion, that they be contacted. Of course, all patients should always carry a listing of all the medications they’re on. That’s really, really important. It should be kept on your person at all times. Your caregiver should also have access to that as well, a copy for themselves.

Travel is a really big topic for PH patients. Even if you’re not using oxygen at home, it’s possible that when you go onto an airplane that you may need supplemental oxygen. You should definitely speak to your doctor about that. Be prepared. You can’t do anything at the last minute. Using oxygen requires a doctor’s note, and the airline is going to need to know that you’ll be traveling with a portable oxygen concentrator.

The other thing that we hear in our support group very, very often is that PH patients have checked their luggage and put their medicine, or their supplies, or their extra pump into the luggage, and then the luggage gets lost. I cannot stress enough that PH patients must keep their meds, their pumps, and their supplies in their carry-on at all times.

If you’re traveling to a place that has high altitude, that’s also a concern. You may need your portable oxygen concentrator if you’re visiting Denver or another city that is high elevation and lower oxygen levels in the atmosphere. Definitely research before you leave so that you know that you’re prepared if you are going to a place that has a high elevation.

Back in 1998 when I was diagnosed, my parents bought me a fingertip pulse oximeter. I remember back then, they were $200, but now you can get one for $20. That is a wonderful thing. It’s just a little device that clips to your finger. While you’re up in the plane, you can actually see if your oxygen level drops, which for a lot of people, it does. Purchase a little fingertip pulse ox if you can.

It’s also a good idea to alert your specialty pharmacy and your doctor’s office, PH doctor, if you plan on traveling. Something that I always do is, wherever I’m traveling to, I take a look, and I try to find out on the internet are there any doctors that treat pulmonary hypertension in the place that I’m going to and what hospital are they affiliated with. It’s always a good idea to plan ahead, because if you have a problem, forewarned is forearmed. Do that little bit of research first.

The other thing is a medic alert bracelet, or a medallion, or a chain. It’s important that if you faint and you lose consciousness, that someone is going to be able to check your wrist and see that you have this medical problem. Also, if you are on a small pump, that can be confused with an insulin pump. Then EMTs may think that you’re a diabetic simply by looking at your pump, so very important to identify the fact that you have this illness. Again, always keep with you that list of meds, that list of doctors, a list with all your diagnoses and information that’s going to make it easier for any emergency service personnel who’s going to be responding if you have a crisis.

My name is Joanne Sperando, and I’m aware that I’m rare.

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