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December 23rd, 2015

Holiday Season Brighter for Pulmonary Hypertension Patient After Surgery

By Cynthia (Cindy) Weiss

Laura Floeckher found help for pulmonary hypertension at Mayo Clinic. The holiday season is much brighter this year for Laura Floeckhler, 45, from Orlando, Florida. Laura was diagnosed last Christmas with pulmonary hypertension, a rare disorder of the lungs affecting about 30 in every one million people.

Laura's symptoms started earlier in 2014, when the mother of three began experiencing shortness of breath. Then her legs and ankles began to swell.

As Laura's symptoms worsened, walking became such a struggle that she began filling a cooler with snacks to keep by her bed. "At one point I couldn't walk 10 feet from my bedroom to the kitchen or living room," she says. "Putting on a pair of pants would knock me out for the rest of the day."

On Christmas day 2014, Laura was taken by ambulance to an Orlando community hospital, where she received the diagnosis of pulmonary hypertension. The diagnosis put her on a path to Mayo Clinic and regaining her life.

Difficult to diagnose

Laura was referred to Mayo Clinic's Florida campus, where she met Charles Burger, M.D., director of the Mayo Clinic Center for Pulmonary Hypertension and Vascular Diseases. The center is one of 26 designated centers recognized by the Pulmonary Hypertension Association for its integrative approach to patient care, research and education. With a team of experts, including cardiologists, pulmonologists, interventional radiologists and cardiothoracic surgeons, Mayo is one of the largest centers for treatment of pulmonary hypertension based on patient volumes.

"At one point I couldn't walk 10 feet from my bedroom to the kitchen or living room. Putting on a pair of pants would knock me out for the rest of the day." - Laura Floeckhler

"There are five different categories of pulmonary hypertension, so this can be a very difficult disease to diagnose and treat," says Dr. Burger, who likens the condition to "a kink in a water hose." That causes pressure to build, forcing the right side of the heart to work harder to increase blood flow to the lungs. Eventually, the heart enlarges and fails, Dr. Burger says.

Sadly, many patients with pulmonary hypertension are misdiagnosed because a number of conditions have similar symptoms, and the disease has often progressed by the time it is accurately identified. Because of this, some patients require a heart transplant or a heart-lung transplant.

"I didn't know how complicated pulmonary hypertension was until I got it and began researching it," says Laura, who on further testing, was found to have a subtype of the condition that causes blood clots in the lungs.

A surprising new option

Laura Floeckher found the answer for pulmonary hypertension at Mayo Clinic. Though pulmonary hypertension is a progressive disorder, some patients with Laura's specific condition are eligible for a complex procedure known as pulmonary thromboendarterectomy, where surgeons scrape the clots from the pulmonary arteries. With the procedure, doctors said Laura could essentially be healed.

Getting her active lifestyle back was within reach, but Laura feared the worst. Though she hadn't realized it before, Laura learned that another member of her family was diagnosed with the same condition at age 16 – but passed away due to complications.

Cardiothoracic surgeon Kevin Landolfo, M.D., assured Laura that technology had improved in the past 30 years. Still, thinking about Dr. Landolfo stopping her blood flow and cooling her body to 16-18 degrees Celsius to remove the clots was frightening.

"I was afraid I wouldn't wake up," Laura admits. But she opted to proceed, and in August 2015, underwent the surgery.

During the procedure, Dr. Landolfo removed the majority of blood clots and scarring from Laura's lungs. "We allowed her lungs to improve, her pressures to go down, and that allows her heart to function in a much more efficient way," says Dr. Landolfo.

Almost immediately post-surgery, Laura could tell the difference. "Just taking a breath was easier," she recalls. And she was up and walking around the hospital floor the first afternoon.

Today, Laura is thrilled to be celebrating the holidays with friends and family, taking in the sights, sounds and smells of the season. She's able to walk freely, is back at work and is looking forward to adventures with her first grandchild.

"I love Mayo Clinic and what they did for me," she says. "I feel normal … I feel like I can do it all."

Learn more about Laura's story and the surgery in the following video.


HELPFUL LINKS

 

Tags: Blood Clots, Cardiology & Cardiac Surgery, Charles Burger, Florida Campus, Kevin Landolfo, Lung Disease, MayoClinicFL, Pulmonary, Pulmonary Hypertension, Pulmonary Thromboendarterectomy

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caseyjuds
@caseyjuds

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Posted by @caseyjuds, Dec 28, 2015

inspiring!


mjoanali
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Posted by @mjoanali, Sat, Feb 25 5:46pm

Hi..my name is Joan and I reside in Ontario Canada . I have pulmonary hypertension and have had pulmonary thrombo endartorectomy in 2013. It was a very scary surgery and like Laura, I was extremely scared knowing that my heart and lungs has to cooldown. I had several complications but thankfully I came out a lot better and am able to walk , climb stairs etc. However , last year the surgeon called me to advise of new procedure called Balloon pulmonary angioplasty (BPA). The first procedure went well and I felt great, however, the following procedures were not great. Several of my arteries were ruptured and I felt as if the life has been “sucked out ” of me. I do not plan to do anymore BPA’S. I am currently being followed by a respirologist who is amazing. I have right bundle block, severely enlarged right ventricle and severe left chest pressure and constant pain. I’m currently on blood thinners because my PH is caused by blood clots as I have protein S deficiency. I am currently on a medication called Adempas which is specifically for PH.
Thank you for reading my story and I look forward to hearing from your team with any feedback that may be helpful to me . My health, especially my heart seems to be detoriating.I can be reached by email and I would also like to hear of other people’s journeys with PH. Thank you and hope to hear from you at your earliest convenience .


margiemae
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Posted by @margiemae, Thu, Mar 16 10:06am

Hi Joan, Thanks for sharing your wonderful Story on your Pulmonary hypertension. My husband of Red Wing, Mn.also found out he has the Pulmonary hypertension in Nov. He has been on meds to help get rid of his cough he has had for over a year. The cough has gotten better but the breathing has not gotten any better as of yet. When he had to snowblow ,I had helped him, as he had to stop many times to get his breath back. We had a wonderful nurse who came to our home every 2 weeks to check out his Vitals & meds.we are now at Rochester Mayo going thur the 6 appt today to see if they can do a balloon surgery on him. Mayo is so wonderful. We are praying for the best answers today. I wish you better health with your Pulmonary too.Hope to hear from others also on thier outcome on Pulmonary Hypertension.Thank you.


mjoanali
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Posted by @mjoanali, Thu, Mar 16 10:29am

Hi Margiemae:
Thank you for sharing your husband’s story and I wish him all the best. ..I have an IVC (inferior vena cava) filter since 2003. It was inserted to prevent clots from going to my heart. It has been recalled by Health Canada because it was supposed to be a temporary filter. I’m going to the hospital today to run some tests and then they will decide what the next step will be.
I wish you and your husband all the best for a speedy recovery. .illness takes a toll on the whole family. God bless…talk to you soon. ..Joan


margiemae
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Posted by @margiemae, Sun, Mar 19 4:37pm

Joan,
It was so good hearing back from you. I hope things get better for you & we can fight this breathing to be 100% better between you & my hubby. We were in for Xray on a spot in his left Lung & we now have to wait to hear from Drs this week on what their Plan is & the Spot they found, Don’t like this Waiting thing! Hard to get it off your mind. Mayo in Rochester is so wonderful, They are right there to help you.I will keep in touch with you, may I ask your age? My hubby is 62 yrs old. We both still working too.
Take care & wishing you the best in your health too. God Bless you, Marjorie


mjoanali
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Posted by @mjoanali, Sun, Mar 19 7:35pm

Hi Margiemae:
So good to hear from you and really happy that you have taken the time to respond. I am praying for your husband that the spot turns out to be just an old scar because when I had the balloon angioplasty last year, my arteries were ruptured and if I have to go to another emergency department, they think that the spots are new clots but it is just the scars from the ruptures. I am 54 years old turning 55 next month. I have had this PH since I was 31…that was when they found the 2 clots in my lungs and the doctors did not diagnose PH..they inserted an IVC ( inferior vena cava) filter into my chest in 2003. I received a letter from Health Canada that the filters were recalled so I did some tests on Thursday and next Thursday, I will see the vascular surgeon to get the results. I will keep you updated and I hope you guys get the positive results that we are hoping for and please tell your husband to keep smiling and God never gives us more than we can endure. It is a test of faith. God bless and hope to hear from you soon. ..
Love
Joan


margiemae
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Posted by @margiemae, Mon, Jul 24 7:08pm

Hello Joan,
How are you doing? sorry, I didn’t get back to you, But I lost the site to find you on here. My Husband had his Surgery last Thursday, They did the 2 balloon percedure, They had him in 2 hrs & kept him over nite. He says he can’t tell yet how he feels, yet. He has to take it easy & no lifting over 10lbs for a week, I think once his lungs get stronger & he can go up the steps, he may find he has more energy. He had this done at Rochester St. Marys Hospital, with the Best Mayo Surgeon Drs.
How have you been feeling? Hope your doing well . Jeff will go in for a Pet scan Aug 2, on his spot in lung, Praying its only a scar tissue or nothing.
Hope you hear back from you too, Take care & God bless you!


margiemae
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Posted by @margiemae, Sun, Jul 30 7:28am

Hi Joan, Good hearing back from you. I am praying for you on Thursday seeing a Surgeon, Hope they have answers for you too. You have been thur so much, & praying they can help you. We will stay in touch. May God Bless you. Take care! Talk soon,
Love, Margie


Lynn61
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Posted by @lynn61, Fri, May 26 10:04pm

After my echo I got my report that says I have tricuspid and mitral valve regurgitation, also mild pulmonary hypertension, I have sleep apnea also and due to low oxygen levels at night my dr. feels this is why I have the mild HP. I am told there is nothing to worry about, he will repeat the echo in a few months, everything I read online everyone seems worried about HP, which causes me to worry. Anyone have any suggestions for me?


margiemae
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Posted by @margiemae, Mon, Jul 24 7:14pm

Hello Lynn,
I just read your story on HP, as my husband had Pulmonary Hypertension, cause from Blood Clots in both lungs, & was short of breath & coughing. A Dr. from Mayo found what my husband had so they started him on pills, Which only helped with pills for 6 months, then they decided to do the Balloon procedure, He also has a Sleep Apnea, machine. The Drs have to do test on you to see if you can have the surgery or meds. I hope you can get help with your Drs, Wishing you the best of health, Hope to hear back from you. Margie


Aashi
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Posted by @aashi, Thu, Sep 14 8:35am

Hi Everyone, i am from qatar treating my mom here as well
She is patient of ASD + high pulmonary hypertension. She used to take bosentan viagra for her . But my mom got side effects from bosentan viagra . Its really expensive treatment for us . She is so young 40years old . Drs observe her disease since 10 years you can she is from 10 years suffering from this . Now her case is going worst day by day . I would love to know about her treatment and how much it will take . We tried to do operation for her ASD but pressure is too high they don’t even can put device . Please suggest me some treatment now she is on oxygen therapy . She is feeling really bad for her self because she is not able to do single thing without oxygen , she is used to take oxygen cylinder to bathroom and washroom . She can not meet anyone coz she started getting allergic from peoples breathing


Linda Binner
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Joined: Apr 04, 2013
Posted by @lsbinner, 1 day ago

Unfortunately, we cannot diagnose conditions, provide second opinions or make specific treatment recommendations through this website. If your friend would like to seek help from Mayo Clinic, please call one of our appointment offices (Arizona: 480-301-1735 Florida: 904-953-0853 Minnesota: 507-284-2511).

You might also consider looking into our Mayo Clinic Connect website (http://connect.mayoclinic.org), where you can communicate with and get advice from others who may have had similar experiences.

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