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Living with PH and Primary Biliary Cholangitis "PBC"
PH and PBC are both incurable and chronic illnesses. I can only imagine the challenges of treating both. We have at least one member living this experience. Do you have Pulmonary Hypertension and Primary Biliary Cholangitis? Please consider sharing your challenges with these co-existing disease.
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20 Replies
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Loving this branch of the forum! Thank you, Colleen, for posting this. I have been diagnosed with PH for six and a half years. The PBC I’ve only known about for a few weeks or so. I have to admit the diagnosis knocked the legs out from under me, and I felt myself going to a dark place. I think I’m doing ok emotionally right now, but I know that will be challenging to stick with as I face more obstacles. I sure would appreciate any input from anyone.
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Hi Robin, I’m s sorry to hear of your new diagnosis. I had never heard of PBC, so of course, I had to research a tad. Once I read it , it makes sense as it’s thighs to be an autoimmune disease per Mayo Clinic,PH and autoimmune diseases are quite common. I found the information quite interesting,
Did your doctor mention meds to help? I know , more meds….yay , but if you’re t can slow the progression , worth it. I miss sorry it wasn’t the cause of your gastro issues.
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Hey Jen,
I have found that sometimes the medications we have been given for other conditions really do start to effect our lungs or other co-existing conditions in our body.I also believe that we have to do our own research when it comes to this and our health. Looking up medications on a trusted website and seeing it for ourselves makes it easier to bring to the doctor (or pharmacist) attention.
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Thanks, Jen. The G.I. doc who diagnosed it sent me on to a nephrologist who specializes in such conditions. I was immediately put on Actigall (Ursodiol) three times a day and was sent for a boatload of follow-up blood tests and an axial bone density scan (because I guess it can cause osteoporosis, too.) I’ll be having an esophagogastroduodenoscopy in August. And they wanted me to have some kind of an ultrasound that determines the elasticity of the liver, but the manufacturer of my pacemaker shot that down since it involves magnetic imaging. (I wasn’t familiar with it, and the doctor who ordered it knew I have a pacemaker, but when the scheduler asked a few questions — including “are you claustrophic” — it got me thinking it didn’t sound like any ultrasound I’ve ever had before. Sure enough, it’s not a normal one. You really do have to be on your toes and be your own advocate, questioning everything even if it’s ordered by a professional. That would have been a horrendous mistake.) Anyhow, one of the primary things all these tests are for is to determine what stage of the disease I am in and how much the liver has been damaged so far. I’ve had numerous CT-scans in recent years due to a mass and some cysts in my liver; and I also had a liver biopsy, because the oncologist had been thinking this was a metastatic breast cancer that turned up in the liver. They remained unconvinced and have just been keeping an eye on it. Now they’re saying they want to do another liver biopsy, which I’m trying to talk my way out of, since I had some complications with the previous one. I’m holding out hope that somehow this has been caught early and that medication will slow its roll. I hear the prognosis on late-stage isn’t so great, so I really have all my fingers and toes crossed at this point.
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Hiw did the bone density scan go ? Sometimes I wonder if disease in general especially because of the stress our bodies are under every single day has some type of impact on our bones. I am also getting a bone density scan soon and want to post a topic about it shortly to ask others if they have experience with this and have been diagnosed with anything as a result of this.
You are truly such a fighter and I know there are many in the PH communuty and in these forums (*including myself) who love having your jnput into conversations. Your story is one that needs to be told because it will leave a lasting positive impact on others. The way you hold your head high and talk about this and still hope for the best is inspiring to me.
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Brittany,
Thank you for your kind words and encouragement. The results of the bone density scan came back “normal” for my age and for a post-menopausal female, so I was very happy to hear it. I understand I will have one every two years unless something indicates it should be checked sooner. (That sounded like exciting news to me, because I decided to take it as “someone thinks I’ll still be around in two years!” lol!) I had just recently had a bone scan and didn’t understand at first why I’d need another. But the first one was a nuclear bone scan, which is very different. It was to look for cancer in the bones, since my bloodwork was throwing all kinds of red flags. (And thankfully it did not indicate any.) This other scan — axial bone density — was really a piece of cake. Took like 5 or 10 minutes at the most. It was pretty much like lying down and getting an x-ray. And the results showed up in the portal the very next day. Nothing to it. I guess it becomes the baseline to watch for any developing osteoporosis or osteopenia. -
Robin, I’m not saying you will need a liver transplant but this recent article is interesting if you haven’t read it yet.
https://pulmonaryhypertensionnews.com/2019/06/05/sildenafil-reduces-symptoms-of-pphtn-before-liver-transplantation/ -
Colleen,
Thank you. This is very interesting, and I’ll hang on to it. (I actually take sildenafil.) I have wondered on and off since my cancer treatment concluded whether or not I’d even be eligible to receive a transplant (heart, lung or now liver) due to the whole cancer thing. And you want to know the truth? I’ve been too chicken to let the question come out of my mouth at any doctor appointment. I don’t think I want to hear a doctor definitively say it, but my gut has been telling me they wouldn’t “waste” a perfectly good organ on someone who’d had a cancer with a high risk coming back … and also on someone over a certain age. I’m 58. But it’s always inspiring to read about any advances that will help us get treatment or procedures to keep us around longer, so I do thank you for sharing it. -
Robin, if anything I thought the fact that they have possible found another benefit from Sildenafil was interesting and maybe hopeful for you. I didn’t mean to awaken any worrisome thoughts of transplant for you.
Brittany recently wrote a wonderful article about hope in her column and I think she really expressed well what many of us have encountered, that hope is an important part of our self-care. Who knows what the next medical advancement will be, but whatever it is, keep hoping that it might be something that will help you. I’m keeping you in my thoughts and prayers.
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Robin,
sounds like they will be keeping a close eye on things. I’m happy to hear that things were in the “normal” range for age and post-menopause. I know that osteoporosis is something they worry about with me too because I am post menopausal due to surgery to remove my fallopian tubes and both ovaries. I am on a really low dose of estrogen right now that I get through a patch and it it supposed to protect my bone health the best it can. I still am looking to strengthen my health with this though and would be willing to take supplements of vitamins (as long as they’re okayed with my medical team). Did they suggest any type of preventative things you can do or take to help protect your bone health? Being a woman too, this is something that we are at more risk for when we reach post menopausal age or have changes in our hormones either naturally or artificially. -
I agree with you Brittany on the bones and I have that on my list to check soon. My Case Manager has been after me to schedule a bone density scan for a year or so now. Keep us posted on yours.
Robin, great to know that your bone scan came back , “ normal “…you are a great inspiration and I’m just reading all about you lately , here in the forums. You’re such a positive burst of sunshine! Keep us updated!
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Jen,
I’ll have to schedule one too. We will both have to just get it done and let each other know how it goes ! We’re in this to win this hahaha! 🙂 -
Most definitely, Brittany! We will schedule these tests and compare notes before long, hehe
We ARE in it to win it 😊
Colleen, I look forward to hearing of your experience and results from your son’s bone density scan.
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As long as I’m out of the hospital by next week I am actually planning on discussing the bone density scan with my primary care doctor next week on Thursday. I really want to start being more proactive in my treatment and preventative measures and just doing all I an so things don’t get any worse. I really believe strongly that I deserve a longer time of feeling well and living well until the next things strikes. I want to be able to get out of the hospital and say “this last month I didn’t go to the hospital!” That is my goal right now with the upcoming summer months fast approaching. I would just love to be able to enjoy that time with family, friends, and my boyfriend. we all deserve that break from reality for a bit.
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Brittany,
It breaks my heart to see you have to use the phrase “until the next thing strikes.” You’re so young and you shouldn’t have to live in that frame of mind. But I completely understand it, after the past several years, because that could be the theme of my life now. (In fact, I’ve been joking to people that I feel as if I’m starring in the latest sequel to “Final Destination” because it just keeps coming for me one way and then another and then another.) But I’m 58, and I’ve had a chance at a life that wasn’t filled with just one medical issue after the other. Everyone deserves that. I try to laugh it off and I have a tendency toward so-called “morgue humor” because I’m just trying to put others at ease, especially when they seem overwhelmed and don’t quite know what to say. But, it does weigh all of us down at times, I think, when the “trauma and drama” just feels relentless. I am hoping you get a nice long break from any hospital stays and can enjoy your summer fully, and I am very happy to hear that you’re going to be as proactive as possible toward doing everything you can to keep all issues in check! -
Robin,
I have grown used to just living for each day at a time and when my health is better and better managed, I plan on taking full advantage of that. It can get frustrating when we can’t exactly plan for the next “good thing” either because we just don’t know where out health will be at that time. Of course, nobody really knows what is going to happen or what can happen in a day, but for those of us with PH and chronic illness it’s a lot more pertinent in our life and something that we do have to think about. It’s hard to just keep the “anything can happen to anyone even a healthy person” mindset (I have heard this all too often). Even though it’s true it’s not something that the average person has to think about and that’s something that a lot of people take for granted.your positive attitude in all that you are going through is really inspiring to me. I certainly plan on taking the best care of my health and controlling the things that I have control over. I feel like that’s all we CAN do.
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Wow, Robin, it sounds like you’ve been very much your own advocate and as you shared, it’s so important that we do that!
Some doctors and medical staff, in general are often clueless, it seems. Thankfully , you caught on and you’re taking charge of your health. I know once we have dealt with any illness long, we definitely become the pro at knowing what our bodies need and react to.
You’ve been through so much already, sorry I’m just now catching up on all of your illnesses and I’m just impressed in how you’re dealing with it all and continue talking behave such positive vibes about you. I just feel like we could meet and you would be a fun, bubbly friend . Hugs to you and keep us posted.
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Jen,
Aww, thank you for saying so! (I like to think of myself as “fun and bubbly” but then I think sometimes I must be a real pill! LOL!) -
LOL Robin, we all can be fun and bubbly, but I, too find I can be a “real pill” in the butt some days…lol Love that…
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Robin, I am overwhelmed by all that you are going through, but more so by your positive nature and ability to keep advocating for yourself no matter what new things get added to your mix of health issues. I’m keeping you in thought and prayer. It’s good to hear that the bone density results showed no concerns.
Brittany, my son has a bone density done every year. When you post it as a topic I will share his experience and the results. It is a fairly easy but important test to have, especially due to all of the medications.
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