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Did you attend PHA’s 2018 International PH Conference and Scientific Sessions? I went as the Conference photographer and had an overwhelming (mostly good) experience. I actually caught a cold and returned home sick and so, so tired. Luckily, I recovered quickly, and my lung function is stable.
I have been writing some of my reflections after attending Conference for the first time without my family, and without my former PAH diagnosis. I was so happy to see old friends at Conference, and meet new ones. While I did feel more a part of the community by being there, it was strange that people couldn’t tell I was a patient until I told them. Unless they knew me from before, they assumed I was some random photographer. I tried to introduce myself to as many people as possible. Upon learning I had a transplant after battling PAH for 16 years, the attendees were more willing to have their photo taken!
This week and next week I’ll be sharing about my experience. Take a look at my first post, and learn how I react to being put on the spot (hint: it relates to why I am a photographer).
It was great to meet @brian-gilbert and @charlotte-gilbert in person. I hope more of you can attend the next Conference in 2020 in Anaheim, California (much closer for me)!
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Was great meeting you as well @kathleen-sheffer! Last week was lung transplant evaluation week at Duke. Fingers crossed we get accepted and are invited to relocate.
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Heard anything yet, @brian-gilbert? Fingers crossed!!!
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Hi Stehannie,
I wonder how often they do the conferences? I am part of the congenital heart disease groups too and have been to one of those conferences before and really enjoyed it. I think they are every 2-3 years for the heart group but not sure about how often they are for the PH Conference. Something to look into 🙂 -
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Yes! They want her as their patient. The plan is to get her to their ph docs and get her disease more under control. She’ll need to gain some weight with the help of the nutritionists. Once those things happen, the plan is to put her into pulmonary rehab. After she’s stronger, they will then review if she’s ready to be put on the transplant list. We’ll be relocating to Durham to eliminate the stress of travel (we currently live about 5 hours from Duke). Long road ahead but we’re very excited and thankful.
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That’s great! We definitely want her to go into the procedure at her strongest, despite her disease severity. There’s also a chance that these changes might make her feel a lot better and not need the transplant (were you at the fashion show? The woman in the cape was able to go off the list with diet and exercise). I have a couple friends going through the same process right now, and I went through pulmonary rehab after my transplant. It was fabulous! My mom went to my sessions with me and was so impressed by the women in their 70’s and older who were there every day lifting 5 pound weights! She started doing the workouts with us and has built up strength herself. It’s a fun community!
Have your heard of Help Hope Live? As you know, the costs of relocation and wage loss during recovery are significant. We did some fundraisers before my transplant and asked friends to donate to my HHL account. Donations are tax deductible (unlike gofundme, etc) and can only be used for medical expenses. But we were able to submit the cost of housing post-transplant among other things, and I’m still getting reimbursed for my mileage on trips to and from my center. Let me know if you have questions about fundraising. It’s definitely a long road ahead, but the good news is you don’t have to do it alone.
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Thanks Kathleen! I was only at the fashion show very briefly. It looked like fun though. I don’t recall seeing the woman in the cape. Now I wish I had stayed. : )
Day 1 at Duke we got to visit the pulmonary rehab facilities and meet the staff. These people know their stuff. They were very familiar with pulmonary hypertension and knew exactly how to build an exercise plan for Charlotte.
Duke called yesterday and 8/13 is the big day. We go in for labs, 6 MWT, nutritionist, and we see a cardiologist who specializes in PH.
We’ve secured an apartment that will be ready on 8/15.
The financial liaison with Duke covered many topics, including fund raising. If Charlotte were accepted into the transplant program, her insurance covers up to $10k relocation expenses. We’ll be moving up ahead of that so it’ll be out of pocket initially. Fundraising might be a good way to help us. I’m VERY fortunate to work from home so my job goes with me as long as I have the internet. Charlotte is on disability so our income should stay roughly the same. Rent will obviously be a new expense that we’ll have to budget. Fund raising would offset that expense. Thanks for referencing HHL. That sounds like a great place to start.
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Oh, I’m so relieved insurance will cover some of it, and you have income sources that will move with you. I’m less stressed now, haha! But I say if your friends want to help – let them! It is nice to have a buffer, and extra spending money for all the new workout clothes and outdoor gear Charlotte will need to buy after her transplant 😉 Climbing shoes, probably!
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I didn’t go but would love to know when the next one is and where to get information about attending.
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Hey @andrewstrunk, PHA hosts Conference every other year. The next one will be in Anaheim, California. You can get information at PHA’s website. They will update it for the 2020 Conference soon.
PHA will also host a patient support phone call on July 26th. More info here.
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No, I missed this event. I was ready to come to this event, in fact, I bought passes from Coupons for Florida Ticket Station, but due to some issues I have not attended this event, but next time I will surely attend.
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Hi Noah,
I’m sorry that you had to miss the event. I hate missing out on events that I really was looking forward to but I try to remind myself that there WILL be a next time ! I have attended conferences for the Adult Congenital Heart Disease Association and it was such an amazing time. I think the best part of it was the personal connections that I made with so many people there and just hearing each of our stories. It’s amazing how different our stories and reasons for PH and other conditions can be but we share so many similarities. That was the best feeling to leave with knowing that there was a room full of people who just “got me”.
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