Gearing up for the PH International Conference and What’s up with my heart?

Living On Oxygen for Life

I’m super excited to be going to the PH International Conference in Dallas this month. Hooray! I’ll be surrounded by so many people who have the same disease that I have. I hate to even call it a “disease” but that’s what Pulmonary Hypertension is. It’s a disease that has no cure but it’s slowing amassing some amazing medicines to help battle the symptoms that PH causes. We still need a cure. The conference is going to be a way for me to learn even more about PH. I want to actually try to find other people to have Pulmonary Hypertension who also has Scoliosis like I do. My PH is secondary to Scoliosis and Restrictive Lung Disease due to Scoliosis deforming my rib cage. Finding others like me will be difficult. Not many people out there like this. PH is a rare disease. I want to find those people and compare how they manage life with how I manage life and breathing. Maybe we could learn something from each other. *fingers crossed*

Before I go to this conference, I have to get through the next 9 days of the 10-day Halter Monitor I’m wearing to get a read on what my heart is doing. Tikosyn is not really helping my heart arrhythmias which is discouraging. The doctors didn’t believe me so I “suggested” that they do a Halter monitor to see what’s going on. We’ll find out one way or the other. Right? Like I said, *fingers crossed*

I’m actually impressed with the newer halter monitor that I’m wearing. It’s cool! I get a “Sensor” that has 3 leads and I wear it around my neck from an attached lanyard. Plus, there is the “Monitor” which is like a cellphone. When I have an “episode” with my heart skipping, I get to push a button on the screen of the monitor and go through a few questions about: What is happening? (I check: Heart skipping), What’s your activity? (I click either resting, mild, moderate, or heavy). So far, I’ve not had to click on heavy activity. I’m not crazy! haha! It’s raining and humid here. So, my activity is limited to indoors, low to minor-moderate activity because I get tired a lot faster in this kind of weather. There’s no telling what my carrots look like in my garden. I only have one orange left on my dwarf orange tree. The wind blew the others off.

If you want to see the many pictures of Klondike’s Adventure in Germany, you can view them all here… you don’t need an account to view them. My sister really did show my rubber chicken a good time so far. His trip is coming to an end soon. I’ll be meeting my sister and her family when they fly through on their way home. Maybe I should make her some more cookies! Shh! It will be a secret!

Stay well and be safe. Lots of love to you all! *heart emoji!*



11 thoughts on “Gearing up for the PH International Conference and What’s up with my heart?

  1. Like you, I have this condition plus double scoliosis. I have had three sleep studies. I have 52 events in one hour. Right now am being told that Medicare won’t pay for the bipap machine I need. The one I’m using barely helps. Without the new machine, I am practically bedridden because I can’t stay awake and when awake am so “out of it” I stagger. The new machine is my only hope. When it was used at the last study i slept all night! I was diagnosed two months ago.

    • I believe Medicare will pay for a new machine every five years. You could try to appeal Medicare’s decision with your doctor’s help. Is it that your settings only need to be changed in your current Bipap? That would be easy to have done by having your doctor send the corrected settings to the DME of your Bipap for them to have a Respiratory tech come to your house a change them. No new machine necessary. I hope this helps you. I feel your frustration. Are you needing oxygen with your Bipap?

      • The settings have been changed and are as high as they can be set on this machine. My doc is aware of the problem with Medicare. The machine provider is aware of my circumstances and why a different machine is mandatory ASAP. Yes, I may need supplemental O2. Love your blog. I keep telling myself that if you can do it, so can I. I’m a retired R.N.P.. For seven years I have been very ill with the symptoms that I now know come from this condition. Zounds!

      • I hope everything works out for you. Thank you about my blog. There are times when I tell myself…”If everyone else can do it, then I can too. There are always people who are worse off than me.” *hugs*

    • *hugs* I hope are doing well. Restrictive lung disease for me is a serious struggle because of all the energy that goes into breathing and expanding my lungs in such a confining space. It plum wears me out and then to have PH on top of that. Do you feel the same way?

  2. Hi Christine. So sorry Ive not emailed you for an age. Health crisis after crisis this past year – But my afghan kept my spirits up! Email me soon x Annettte

    • Annette… It is so very good to hear from you. I’ve thought about you often. I’m so glad you have left me a comment here. I will email you. I hope you are past the health scares. *hugs* ❤️❤️❤️

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