Mayo Clinic Connect
I have a friend suffering from pulminary hypertension. Trying to connect him with a group on connect. Any suggestions?
@hopeful33250 Of course the equipment is adjustable — if you can figure out how to adjust it. There are two gyms at my club, the upstairs one where I go does not really have lifting equipment. When my son is visiting and I bring him he goes downstairs and I go upstairs.
I did go to the gym section of my club yesterday but felt so inadequate. The only things I am comfortable with there are the treadmills and ellipticals. My PT said he might come to help me transition from the equipment at the PT place where his to this equipment but so far he has not followed on it.
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@llwortman Thanks for this great reminder, Linda. Pacing ourselves is very important. Teresa
@contentandwell I understand what you mean about being intimidated by the equipment. I find it very hard to adjust the equipment to deal with the fact that I’m 5 feet tall and everything seems to be set up for the 6 foot guys who try to lift 50 plus pounds. In a pool all of those problems are gone! Teresa
@hopeful33250, Teresa, I will be happy to check with her. She is closed on Mondays, though. I seem to recall that there was a shampoo that you had to use all the time to prevent hair loss and she didn’t want me to use that one. But there was one that she encouraged me to use for a while. She does a lot of hair and wigs for chemo patients.
I’ll let you know what I find out. I do hope my memory is correct on this!
Liked by Teresa, Volunteer Mentor
@rosemarya No rush, Rosemary. I’m not having any hair loss, but I have friends who go through chemo and would like to have something practical to suggest. Thanks for looking into it. Teresa
@rosemarya I suspect that I will just have to live with them too. As I have said before it is a small price to pay overall even though the sweats really are so frequent and bothersome. I tend to be a person who is normally somewhat cold so I wear clothes for that making the sweats even more of a problem.
I was a redhead but it started browning as I got older and now I have no idea what the natural color it is, probably the awful yellowish grey that redheads get. My hairdresser keeps my color at a good and natural looking color though.
Liked by Rosemary, Volunteer Mentor, Teresa, Volunteer Mentor
@contentandwell Hair stylists are an important part of our support network! I appreciate mine as well. Teresa
@hopeful33250 Teresa, you are so right. I have been going to the same one for quite a while now and he is wonderful. I’ve even gone to church with him! My nail tech is also great. After I was sick and ended up in the hospital one time my husband had to cancel an appointment with her she asked me if she could connect with my daughter on facebook to know how I was doing. She’s in her 40s and like a surrogate daughter.
Hello my name is Dave I’m new here so bare with me. I was diagnosed with Pulmonary Hypertension on Feb 17,2017 I have had a lot of heart health issues since birth. (oh by the way I’m 62 years young) I’m just looking for someone to I can relate to. Thanks
Thank you for sharing your story. I hope you are continuing to feel good! I could not help but take interest in the fact that "Tobramycin changed your world." Can you tell me more about that? Was it determined that you were sick from a chronic underlying infection? Can you tell me more about your history, symptoms, tests, and treatments? I have been sick for years as well but still have no answers. Maybe your experience will give me a new path to pursue. Thank you.
Liked by Terri Martin., Volunteer Mentor
@maryd Mary, I read over your posts and I swear, our stories are identical. I too saw doctor after doctor and had test after test without getting real answers or proper treatment. I was told for years that I had asthma and put on meds for that. Turns out it was bronchiectasis. My heart was wacky. I had heart arrythmias; sometimes my bpm would go as high as 180 for hours (hence my ambulance rides). I was put on heart meds to regulate the beat. That helped tremendously. Btw, all heart tests showed no issues except mild mitral valve prolapse. I complained to many of my doctors that my esophagus burned horribly, not a ome suggested it could be acid reflux. Turns out I had GERD (aka acid refux) I got super ill in 2005 right after my father died. I am sure the stress of losing him weakened my immunity. Anyway, I was diagnosed with MAC. I had suffered repeated lung infections prior to catching that though. I declined the Big 3 treatment for mac at that time. By the time 2013 rolled around, my lungs were so clogged with infection that my avioli couldn't function. It was recommended that I seek a possible lung transplant. I sought yreatment from the Mayo clinic. My wonderful doctor there got the mac knocked out. But, I still had the constant cough. I did catch pseudomonas in 2016 and cough got worse. Was put on Tobramycin and after one month, cough disappeared, and it hasn't been back. Now, as far as I know, I am cleared of infections. My heart issues went away also because the lungs are functioning so much better. My story in a nutshell: had GERD, they suspect imhaled stomach acid may have caused the bronchiectasis, which in turn invited mac infection. Stressed lungs, stressed my heart. Questions to you: Have you had a ct scan to see if you possibly have bronchiectasis? Have you ever had a sputem sample tested for mac or pseudomonas?
@maryb The tobramycin was prescribed to kill the pseudomonas that I got in 2016, which it did. My doctor said it does not kill mac thouh. I don't know what changed, or how it worked., but after using it, the cough I had for years disappeared and I felt so much better. Almost normal again. The only reminders I have that my lungs aren't healthy is that I am very short of breath at times and have fatigie issues. Other than that, people would look at me and swear there is not a thing wrong with me. I had a good friend of mine say to me the other day "Terri, I don't think you are as sick as you think you are". I have a lot of damaged lung tissue and my lung function is at 37%. It is a hidden disability, plus, I always have a cheerful upbeat personality, so some people find it hard to believe that I have serious health issues. I take 5 mg of Adderall a day for energy. I was pre-qualified for a lung transplant in 2016 because my doctor at Mayo said that I have no reserve lung tissue. And that one bad case of the flu could wipe out what is left. In other words, any kind of bad infection could cause me lung failure. So, I was pre-qualified and if any nose-dive emergency should come up, they will list me. Before I write another long post about all of my tests etc. I'd like to know if you have had much in the way of testing for your lungs? They couldn't find anything wrong with your heart, it might be possible that your lungs are dragging your heart down; like mine did.
Hi Windwalker. Thanks for your reply. I've had CT scans of the chest periodically mostly to rule out blood clots. They have never mentioned bronchiectasis. I don't have a cough. I only had a cough when the initial event occurred in 2006. I had a respiratory infection which landed me in the ER with chest pains I was weak and short of breath with odd sensations in my chest for years and still can not build any exercise tolerance. Recently had a normal Stress MRI and Echo. Also just had a cardio-pulmonary stress test but I don't have the results yet. Since the initial event occurred in 2006 my O2 sats which used to be 98-100 are now always 94 or less and even went to 89-91 after the pulmonary stress test. I don't have GERD. I never had a sputum sample to test for MAC or pseudomonas. When do you think you acquired the MAC and how long do you think it was causing your symptoms? What does the Big 3 treatment refer to? I recently had the flu Dec.2017. A chest xray was done at that time which was normal. Have your O2 sats been affected? Did you have fevers?
@maryd It wouldn't hurt to request a sputem test. Tell your doctor that you'd like to rule out mac or pseudomonas. Most private practice doctors don't ever think to test for that. Some cases of mac have no symptoms at all. What just caught my attention is when you mentioned odd sensations in your chest. I was dagnosed in 2005 with MAC. But before I was diagnosed (it took 5 months for doctors to figire out what I had) I complained when I first started feeling bad; that I had odd sensations in my chest. I told them that it felt like many little flowers were blooming inside my lungs. They said they had never heard of that before. When I felt that, I instintively knew something was very wrong. I feel certain I caught mine from our outdoor hot tub. We were in it every night. That was in 2005. I had fevers and night sweats. I still have night sweats, but it could also be post menopause. The 'BIG 3' we fondly use to refer to the 3 antibiotics cocktail that most doctors like to prescribe to eradicate mac. I capitalize the word 'BIG' because some of the drugs can be hard to tolerate and are also toxic for the body. I have read that rifampin, and ethambutol can be brutal for some. My O2 sats used to stay at 90-91 and drop to 84 when I'd walk. They were that low from 2002 until 2012. Couldn't walk 20 feet without having to stop and catch my breath. That was when I lived in Tucson at a much higher elevation. I moved to the S.C. coast, now at sea level in 2012. My sats improved to 94. Then I sought treatment at Mayo in 2013 to the present and my sats are now at 97! It is something I never thought I'd see. I did work to get it to this point. I was consistant with my meds, took yoga classes, chi quong, take one hour cardio class 3x week, ride my bike frequently, walk 30 mins in the a.m. as well as p.m. It is beautiful here with miles of flat bike trails so it it conducive to wanting to exercise. Hopefully, I have answered all of your questions. It is not all rosey though. I still get very short of breath and fatigued. Regular exercise actually helps with those two things.
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