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Sharing For Dawn, New Member Shares Her PH Story
I am sharing this for @dawnt. She’s new here and wanted to share her story. We are happy to have you, Dawn and hope that you’ll find support here. Here’s her post. Let’s all welcome her.
Thought I’d try a shorter post. I’ve actually been following this forum for a few months, you’ve all already helped me through some difficult times! I’ve learned a lot from reading the posts, and so many gave me such relief to know that what I felt were failures on my part in handling my medical issues (mentally & emotionally) were actually pretty common issues on the forums.
It took me a little over 3 years to finally get a diagnosis of ’pulmonary hypertension’, which happened in early 2018. In that 3+ years various testing revealed that I have ’sleep apnea, limited scleroderma, hashimoto’s thyroid, atrial fibrillation, D3 & B12 deficiencies’. When treatments for those didn’t improve my initial issue of breathing trouble and extreme tiredness, my cardiologist finally scheduled a ’pulmonary function test’. The pulmonologist in the medical group I use said my issues were from getting older and my weight. When I told him I didn’t accept that he said ’everyone says that as they get older but it IS your age and weight’.
A friend recommended a pulmonologist, and when I saw him the very first time he reviewed the ’pulmonary function test’ he said there was something not right about how my body was using oxygen. He had my cardiologist do a ’right side heart catheterization’, which showed the ’pulmonary hypertension’, and was referred to a ’scleroderma/pulmonary hypertension’ specialist at Johns Hopkins Hospital. He confirmed the ph, and I started treatment mid 2018.
It took awhile for the medicine to make a difference, and in October 2018 Hopkins found during a walk test that my oxygen level drops significantly when I stand and move around. They still don’t know why, but I started using oxygen shortly after that. I had a portable concentrator, but switched to oxygen tanks last month because the portable concentrator wasn’t getting me enough oxygen. As far as being able to do things more easily the tanks have made a good difference. I had another ’right side catheterization’ at Hopkins in October 2019, and the numbers for my ph showed good improvement.
Even though I know how serious my medical issues are, I try to just keep living my life. I’ve had to make changes to some of the activities I did ’before’, but I try to keep doing things that are important to me. My family, friends, neighbors, co-workers have been great support. As I said earlier, I’ve also found support here on this site just from reading. Having dealt with severe depression in my life, I also have a wonderful therapist who has been a true blessing in my life. I have two small dogs that I adopted from a rescue a couple years ago, and don’t plan on leaving them unless/until I absolutely have to! I’ve volunteered with an equine assisted therapeutic riding program for almost 13 years, and although I can’t do the amount of walking required to participate in the therapy programs any longer I still help in other ways and get to be around the horses. I’ve loved horses (and all animals) all my life and consider it an honor to be around them. They’ve helped me get through ’multiple pulmonary embolisms, deep vein thrombosis, a cardiac ’event’ that doctors thought was a heart attack but it did no damage to my heart’. Many, many blessings in my life that help keep me going. And, I’ve always joked that I must have multiple guardian angels because I think I would exhaust just one! I’ve come through things that I really ’shouldn’t’ have, and I think there are probably arguments over which guardian angel’s turn it is to rescue me because I’m sure I keep them all very exhausted!!
I hope this post isn’t too, too long. I’m looking forward to being part of the forums. -
16 Replies
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@dawnt welcome welcome ! We are so glad that you are now officially part of the group. I am so glad that you wrote all that you did and shared your story with us. We have a lot in common with our diagnosis. I also have a-fib and had a lot of red flags with my PFT (pulmonary function tests) that I have had. When I was very short of breath, doctors never walked me and checked my oxygen, they only ever did it when I was sitting down so my oxygen was always fine unless I was sick or something. I am so thankful for the nurses and doctors who checked my oxygen with activity and found that it was dropping as much as it did. When I am very symptomatic my oxygen can sometimes get to the low 80s and even the high 70s. Usually it has been around 87 with the last few walk tests I’ve had but that was only a 3 minute long test, so you can imagine what my oxygen must do after about 10 minutes time. When I wear my oxygen it does help me feel better. I struggle a lot with wearing it when I am supposed to though and I am supposed to be wearing it with all activity. Is your oxygen use 24 hours or just with activity and moving around too? Just curious ! I hope you keep reading the posts and feel free to respond and post your own topic any time. Looking forward to connecting with you more.
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Brittany, thanks for the welcome. I use oxygen with exertion, and I’ve had it on my cpap machine since shortly after starting cpap treatment. I’m supposed to use the oxygen anytime I stand up and start moving, but I don’t always do that around the house or at work if I’m walking just a short distance. I have ‘off’ days when my breathing is noticeably worse than usual, then I’ll wear it all the time. The way I finally got my cardiologist to do a pft, which lead to my diagnosis, was that I got myself a finger oximeter and told him I was getting readings of low 70s/high 60s. He thought it was due to being an inexpensive over the counter oximeter so had me wear mine and they hooked me up to one of theirs while a nurse and I walked. Their reading matched what I’d told him, so he finally set up the test. I did the same thing when I felt my portable concentrator wasn’t doing enough, which proved I needed to go to tanks in order to have a higher setting available. I was disappointed in not using the portable any longer but know I need the higher setting and it has made a nice difference.
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Hi @dawnt, it certainly can be frustrating when the doctors do not validate your concerns. I am happy that you were advocating for yourself until they do something more. I am sorry that you cannot use your portable. Maybe once you are on treatment for some time, that will change. Have your treatments seemed to help you?
You mention that you do not always use the oxygen, as the doctor said. I think that we all have those days. For me, it was toughest at the beginning. But, still, at home, I do not always tend to wear it unless I feel like I need it. Other times, wearing it before I feel that need, I end up feeling better overall. I hope that makes sense.
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Jen, it makes perfect sense! I know I ‘should’ wear it even to walk to the mailbox, etc., and I do sometimes, I think it’s trying to be like I was before the diagnosis. But I know when I’m moving around that I’m NOT like I used to be! In the long run I’ll be delaying at least a little damage as to heart failure etc. so that’s a good reason to use it every time.
I’m on Ambrisentan & Adcirca, and it has made a huge difference. It took much longer than the dr at Hopkins expected to see results, but it’s been worth the wait. Before I finally got the diagnosis and started medication I really thought they weren’t going to figure out what was wrong in time. It’s funny how many people still tell me they were really worried, thought I looked gray, and think I’m looking so much better. I tell them I appreciate their thoughtfulness, and I was worried myself! Worried and scared.
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@dawnt, Yes, once we learn how much the oxygen is helping, I find that we wear it more. Do you have an at home-fill concentrator? This is helpful to refill the smaller tanks while at home. This prevents the oxygen guy from coming as often, and I think it offers more independence.
I am glad that you see the results from your medications. Often, we tend to react differently to all medicines. I am with you that it is worth the wait if it helps. By reading your comments and the concerns from others, I am sure that your color is looking better.
It certainly can be worrisome and frustrating when the doctors are not listening, and you are waiting on answers.
Another PH friend of mine lives on a farm and does Equestrian training. I can imagine this is quite therapeutic.
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@dawnt it really is scary when other people begin to notice some outward changes in your appearance or when you start to notice things yourself. Sometimes I need others to point out the things that they are noticing before I see them. I am so used to looking at myself in the mirror every day that it doesn’t seem like a huge change when something happens to my appearance. But, people will comment on certain things if they haven’t seen me in awhile or a few weeks. It’s good to know !
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@dawnt it is so nice to hear from you and to read about your journey. What a blessing to find a pulmonologist who listened to you and actively tried to figure out what was wrong. My hear goes out to you for the long road you had to travel to get to that point. My son was misdiagnosed for 2 years. He was told everything from, it’s probably asthma to panic attacks.
Dogs can be so emotionally therapeutic! My son adopted a Jack Russell after his transplant and she has been like a best friend to him. I’m sure your dogs have touched your heart in much the same way.
The equine assisted therapeutic riding program sounds amazing and I would love to hear more about that.
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@dawnt I know the frustration with now being able to use the portable oxygen. It is way easier to use and carry around. I ended up purchasing my own oxygen that was portable so it was definitely costly. I found out after trying to wear it though that it really didn’t do much to bring up my oxygen levels to a better reading. I don’t think my lungs were able to take in too big of a breath to sustain the pulse flow style oxygen. I know that the tanks are better for me, they’re just more cumbersome and require more planning especially if you are going out of the house. A portable charging station for these tanks might be a good idea in the future !
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@dawnt I know the frustration with now being able to use the portable oxygen. It is way easier to use and carry around. I ended up purchasing my own oxygen that was portable so it was definitely costly. I found out after trying to wear it though that it really didn’t do much to bring up my oxygen levels to a better reading. I don’t think my lungs were able to take in too big of a breath to sustain the pulse flow style oxygen. I know that the tanks are better for me, they’re just more cumbersome and require more planning especially if you are going out of the house. A portable charging station for these tanks might be a good idea in the future !
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Colleen, I know how frustrated I was when it felt like doctor’s weren’t listening or looking hard enough to find whatever was going on so it must have been even harder having a child go through that. From what I’ve read it sounds like your son is doing well, which is great!
We always had animals growing up, and since leaving home I’ve had two different dogs (at different times) who passed from age/medical issues. This is the first time I’ve had two dogs, and I’ve always had larger dogs, so it’s been an adjustment. My Benny is about 8 lbs, Bear is about 22 lbs. Both sleep with me, and follow me even if I just go from one room in the house to another! I’d be lost without them. I’ve always felt I deal better with animals than people!
I started volunteering at the program about a year after my mother passed away. I always loved horses, and was told of this program needing help even if you didn’t have horse experience. I was absolutely hooked after the first night! The interaction between the horses and riders, riders being both kids and adults, is amazing. The feedback from parents/caregivers about the changes in their riders after doing the program is so touching. I used to try to explain to people what I get from volunteering there, but can’t really do it. I just know that I won’t give it up until I’d absolutely have to. Mainly I help now with care of the horses, since I can’t do the amount of walking involved in the program. I love the one on one grooming, hanging out with them in the pastures, just listening to the quiet of feeding time. They are amazing animals. -
Brittany, my portable was pulse also. I checked with my ph doctor about switching to a continuous flow portable but there aren’t any that would be enough oxygen. I’ve had a big concentrator for my oxygen at night with my cpap, and they brought a oxygen tank filler attachment when I went back to tanks so I don’t have to deal with exchanging tanks. I’ve never liked using a shoulder strap, so I got myself a backpack for the portable when I had that and also got one for the tanks now as well. Definitely bulky to carry around, but to do much of what I want to it’s a good trade off. I agree, though, that portable fillers would be nice!
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@dawnt I am not a single strap bag kind of girl either. I never carried purses or anything so I’m just not used to that. Even through high school I would carry everything in a small backpack and if I had anything of necessity I needed to keep with me, it was always in a small style backpack that was easier to throw on. I also always liked backpacks because it keeps my hands free. I used a Camelback brand backpack for my oxygen tanks because they fit perfectly and the straps are made for hikers and made for holding a heavy amount so it was really comfy too! Check them out. They have some cool colors too.
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@dawnt you don’t have to try to explain what you get out of volunteering. I get a great sense of how much it means to you just by the way you explain what you do. I’ve always been mesmerized by horses. I think they are beautiful and amazing but would you believe I fear them when up close. Riding one is on my bucket list but I don’t know if I would have the courage to do it. That must sound funny to you. They are so big and powerful and I’m so unfamiliar with how to handle an animal of that size. I’ve heard that they can sense fear and react to it. If that is true I would be a goner.
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Colleen, Your thoughts on fear up close and courage to ride aren’t odd at all. I was scared at first too, still am with an unfamiliar horse until I know them. It’s good to always be cognizant of their size and their behaviors, so you know how to protect yourself and them. Most of the program’s horses are older rescues, and because I am overweight I never did ride often. We did have a percheron named Dixie that I would ride but she passed away unexpectedly last year. She was a sweetheart, such a gentle giant! Just being around them is more than enough for me, I don’t mind not riding. You are right, though, they can sense fear as I think most animals can, and they’ll take advantage of it if they sense you’re not sure you’re the ‘head mare’!
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@dawnt and @colleensteele I love horses. I think they are so beautiful to look at and admire. I always wanted to ride them and actually took riding lessons when I was about 9 years old. My mom and her sisters grew up with horses and my mom and 3 of her siblings had their own that they kept at a local farm. I would have loved to have a horse growing up but found out that horseback riding just wasn’t for me. I can remember going to the stable and my feet were dangling on the horse and my whole leg turned blue from the waist down. Darn circulation issues since I was a kid ! Anyways, I had to end the lesson early due to my feet being freezing cold and losing feeling in them. So that dream ended pretty fast hahahaha. But I did love horses and had a good friend growing up that competed and always went to watch her. It was amazing.
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@dawnt, I love your story on volunteering with the horses. I love horses. I was fortunate to grow up around horses and ride them on various occasions. That being said, I have not ridden a horse in years. Last year for our anniversary, my hubby and I made a short getaway that was like 3-4 hours away. It was so cool. It was an Airbnb on an old family farm. The owners had a small guest home on the property, and every morning at breakfast, the horse would come to say hello. It was so relaxing out there that it was hard to leave.
A PH friend of mine also lives on a farm and volunteers at an equestrian center. I bet it is such a relaxing and therapy for those who can work with them. The PH friend I speak of just last year was actually able to get back on and ride for a short time.
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