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    • #34830
      Brenda Denzler
      Participant

      Hey, folks. I’ve asked MamaBear about this and she says she’s never heard of it. So I thought I’d check here, though I suspect that MamaBear’s answer is the norm for PH people.

      I have nodules on my lungs that have increased in number and to some extent in size since they were first noted in 2009 (when I was diagnosed with inflammatory breast cancer). Doctors have dismissed my questions about whether they could be metastases. Docs insist the nodules are just benign and meaningless.

      Do people with PH have lung nodules that are relevant to their PH diagnoses?

    • #34834
      Colleen Steele
      Keymaster

      @brendad53 I’m not familiar with pulmonary nodules. When I did a search this is all I could find in regard to PH. I debated sharing it because I don’t think it applies to you, I don’t want to frighten you and it only briefly mentions nodules. Plus it’s an old article from 2015. But since you have dealt with cancer I would feel remiss if I didn’t share it.

      Metastatic Cancer Complications Can Cause Acute PAH, Sudden Death According to Case Study

      On a brighter note, the following claims lung nodules are common, that most people have them and they are usually benign. May this be the case for you!

      Pulmonary Nodules

      • #34837
        Brenda Denzler
        Participant

        Thanks, Colleen. I understand that most everyone says lung nodules are nothing. My doctors have been waving them away with a brush of their hand for a number of years.

        My theory (only recently developed) is that the nodules are growing in number and size, slowly, because the cancer I had was highly, HIGHLY estrogen positive, and I’m on permanent estrogen deprivation now. So **if** they are metastases, their fuel for growth has been cut way back. Until they become the source of noted symptoms, there’s no need to be concerned about them.

        But I wanted to make sure that they weren’t related in some way to PH, or at least PH in some of its manifestations. It seems that PH comes in various flavors, and I wanted to make sure that none of the known flavors included pulmonary nodules.

        The general idea I get is that they are not related to PH, and I’m not inclined to point them out to my pulmonology teams in NC and in Boston because I think they’re probably a rabbit trail. But if I do mention them, MamaBear gave me good advice about how to handle it.

    • #34859
      Aunt Lizzie
      Participant

      Hi Brenda.  When I was diagnosed with PH in 2012, I had a raft of scans and one found a nodule / polyp in my lung.  Nothing to worry about they said.  Then when I was re-scanned some time later – no nodule – WOT.  It was decided it was an aberration in the scan, but I had seen the photo of it.  Now I have a bigish polyp found in my stomach – not cancerous.  28th July will see its removal.  I’ve got bits and bobs on kidneys, pancreas, adrenal and so it goes – all said to be nothing to worry about.  Hope yours do the disappearing act too.  LOL

      • #34864
        Jen Cueva
        Keymaster

        Hi @auntlizzie, I, too, hope that Brenda’s nodules do the disappearing act, too. That would be fantastic!

        I’m also grateful that your stomach polyp is not cancerous. Is it bothering you, or did they catch it in a routine scan? I’m hopeful the removal will go well next month if it doesn’t disappear before then, LOL.

        Thanks for sharing your experience, as I’m Brenda, and others will find it hopeful if they struggle with polyps or nodules.

    • #34915
      Terese Tuohey
      Participant

      Dear Brendam

      I have the CTEPH variety of PH.  My lungs have been showing nodules on and off for several years.  Mostly they just disappear.  And then another one shows up.  So I’m on a 6 mo check with a CT scan for my pulmonologist to keep an eye on things.  So far, nothing to worry about.  So if your Dr says don’t worry – DON’T WORRY!

      Wishing you well.

      • #34929
        Brenda Denzler
        Participant

        It’s interesting to read of others’ experiences with pulmonary nodules. Mine don’t disappear. They have slowly (over the last decade) increased in number and in size. Doctors are unconcerned. If the nodules did a tap dance and sang Swannee, I’m sure the doctor would remain unconcerned. Just like they were with the pre-laryngeal nodule.

        While I wish I could trust physicians’ judgment when they say, “Don’t worry about it,” I have found in the past that they are not always correct. So while I’m not “worried,” I do note that the nodules exist and the conditions under which they have existed for a decade.

        • #34941
          Jen Cueva
          Keymaster

          I certainly understand that, too, @brendad53. It’s much more difficult than said not to worry about the nodules. With your experience, I can see how challenging this is with any doctor now.

          But grateful you can read others’ experiences and feel the support.

          We do our best to keep you laughing between the serious stuff, right?

        • #34948
          Brenda Denzler
          Participant

          True that, Jen.

        • #34949
          Jen Cueva
          Keymaster

          Hugs to you, @brendad53; I hope you and Maggie Mae enjoy a relaxing 4th of July weekend.

    • #34921
      Jen Cueva
      Keymaster

      Thanks so much for sharing your experience with pulmonary nodules, @tervo. I’m sure that @brendad53 will appreciate the good wishes and the positive experience you share. It certainly would offer me more hope and to chill out and monitor as suggested.

      How are y’all doing this summer? What have you been up to?

    • #34931
      Scott
      Participant

      Pulmonary arteriovenous malformations (AVMs) can appear as a lung nodule or nodules and the feeding blood vessels to these may not be seen in a chest x-ray.  Pulmonary AVMs are common in Hereditary Hemorrhagic Telangiectasia (HHT) and a small percentage of HHT patients develop PAH due to their gene mutation.  Do you, or any family members, have a history of frequent nosebleeds (which are seen in 90% of people with HHT).

       

      • #34935
        Colleen Steele
        Keymaster

        Thank you for this information @scott

        I thought nose bleeds are common for most PHer’s, especially as it progresses? My son had frequent nosebleeds when he had PH but since transplant, I can’t remember him having any.

        • #34939
          Scott
          Participant

          Many PAH medications can lead to increased bleeding due to vasodilation and anti-platelet effects.  Oxygen therapy can also dry the nasal mucosa which can lead to bleeding.  However, these effects are greatly increased in people with HHT due to the telangiectasia in the nose.  Frequent nosebleeds are not always due to the medications alone.  There are a number of people with PAH who have not yet been diagnosed with HHT.  Frequent nosebleeds, especially if they occur in other family members should raise the suspicion of HHT.

        • #34942
          Jen Cueva
          Keymaster

          Thanks, @scott, for this information. But I want to remind everyone that nosebleeds are not always a sign of HHT. But yes, many are left undiagnosed.

          Other blood disorders and drier air (oxygen, too) can cause nosebleeds, as @scott mentions.

          Hypertension or high blood pressure also causes nose bleeds.

          How are you doing as of lately, Scott?

        • #34958
          Scott
          Participant

          Very true.  My point is that frequent nosebleeds are not always due to oxygen therapy or medications and can be a sign of another disease linked to PAH.  This is especially true if there is a family history of nosebleeds since HHT affects 50% of family members.  The average time to diagnosis for HHT patients is 27 years and it is important to screen for the potential complications of HHT because they can be life threatening and prevented.

        • #34961
          Jen Cueva
          Keymaster

          Twenty-seven years, wow, that’s insane to think about! But yes, you make some very valid and helpful points, @scott.

          You’ve certainly had your experiences and share of this stuff. Are you actively involved in HHT research with all of your knowledge? Or is this learned knowledge from experience having a family with HHT?

          I hope I didn’t come across wrong. I was trying to remind others that nosebleeds happen for other reasons, too, as you mentioned. Your contributions are greatly appreciated.

        • #34963
          Scott
          Participant

          It is a combination of all of the above.  As a physician and having a large family with HHT and some members with PAH as well as working with the HHT community.  Unfortunately, the combination of these diseases presents challenges to treated each one.

    • #34936
      Terese Tuohey
      Participant

      For the record, I will be having my follow-up CR July 7 and seeing my dr for the results on  the 11th.  Then I need to check with my GI dr for the once-a-year thing, and my OBGYN in Aug.  My dentist is on the Aug. list as well,  but thankfully, no more medical marathons.

      I’m actually feeling well.  I walk with my buddies 3 times a week for 2 miles each day, and do exercise classes at the senior center the other 2 days for an hour each day.  Lunch out with my friends is practically a weekly event these days.  MI cases of Covid are way down!  Life is almost normal!

      Best to all of you for the Independence Day weekend.=!

      • #34943
        Jen Cueva
        Keymaster

        Wow, it sounds like at least a mini medical marathon, @tervo! But kudos to you for being proactive and keeping all up to date!

        It certainly sounds like you are doing well and keeping active! I recently started doing a bit more exercise and am enjoying it. But I’m quite a bit behind you, hehe.

        Your weekly luncheons sound lovely. If we were near, we would all join you.

        Yay- for an “almost” normal life in MI!

        Take care, and thanks for checking in with us.

        Wishing you and your hubby a relaxing and fun-filled 4th weekend!

    • #34940
      Terry
      Participant

      Oh My I’m not sure I needed to know that. My wife has HHT ,which is hereditary , and takes one or two Cyklokapron a day ( can take up to six) to clot the blood . Light nose  bleeds almost daily and one huge one every two weeks or so provided she takes her tabs. If she forgets her tabs a huge bleed guaranteed. If bleeds ( gushes) for more than 20-30 mins its off to emergency. The usual ENT question first time is poke your tongue out as it is common for  HHT persons to have tiny blood blister type dots all over tongue and or on earlobes. My wife’s energy levels are next to zero most days and we have assumed it is due to low iron and b12 levels due to continual loss of blood . Her doc. has never mentioned PH .

       

      • #34944
        Jen Cueva
        Keymaster

        Hi @terry, I wouldn’t worry much, Mate. I’m sure your wife has excellent care for her HHT. Not all with HHT have PH. PH is often a complication of HHT. But if you’re pretty concerned, ask your specialist. IDK if she has any other symptoms that would make you worry about PH.

        I tried researching the prevalence of those with HHT who developed PH, which was unclear from multiple peer-reviewed sources.

        Does your wife, by chance, receive iron infusions to help boost her iron levels? I have had to get those almost every year or more often. The last one has lasted nearly a year thus far, and my iron values are still within my normal limits.

        • #34950
          Brenda Denzler
          Participant

          I note when you talked about your iron levels, you said that the last iron infusion has ‘stuck’ and your iron levels are within “my normal limits.”

          Care to elaborate on your wording? (Sorry. As an editor and writer, I do notice wording a lot!)

          The fact that you said “my” normal limits instead of simply “normal limits” seems significant to me. I’m a big, big fan of the idea that there is “herd normal” limits to various lab test values and “personal normal” limits. HN usually encompasses PN. But, IMHO, not every value that is within HN is a PN. Thus, a lab test can possibly read “normal” according to herd standards but is not “normal” for a given individual.

          So…what is your normal iron level?

        • #34952
          Jen Cueva
          Keymaster

          True that, @brendad53! Yep, I did mean that my iron levels may not be within normal herd limits, as you suspected. Too often, doctors base things on these ranges, and we all aren’t within those limits.

          I better be careful with my posts. You will have them all marked up with your editing skills, hehe.

          Because of my anemia, my iron levels are based on multiple labs. My hemoglobin needs to stay above 10. My ferritin level is currently at 8 and holding. My iron is 9-10. Again these are my normals, and we know I don’t yet need the infusion. But I’m not far from needing it. However, I’ve been holding these normals for several months.

          Again, these are not within the normal limits of lab values for others.

        • #34954
          Brenda Denzler
          Participant

          Exactly, Jen.

          Your post makes me ponder, though. I had a bout of unexplained anemia back in 2016-2017 (if memory serves). We had no idea why it happened. It took a long time to get me back to normal because my body doesn’t like iron, it would seem. (Long story.) I’ve been fine since then, but not “real good.” Just “fine.” No more grossly abnormal “herd” values.

          Another thing that is happening is my eosinophil level is starting to fluctuate. It stayed at one level for decades, but within the last couple of years has risen and even begun to occasionally bounce up above herd normal. (Which may be why my skin itches me to death sometimes, I guess.)

          And, in recent years the lab values for my kidney function are sputtering between “barely normal” and “not normal.” I’ve also noticed changes in their performance, but when I have mentioned these changes to docs, they shrug and brush it off. The lab values are never wildly out of herd normal, so the docs do nothing.

          I can’t help wondering if these things are related, in some way, rather than being individual instances of “faulty functioning” in my body. Does this ring any bells with anyone? Declining kidney function, rising eosinophils, PH symptoms, one case of unexplained anemia…. Are these pieces of one larger puzzle?

      • #34960
        Scott
        Participant

        Terry and Jen,

         

        PH occurs in up to 20% of HHT patients so it is something that must be monitored.  Most cases of PH are due to shunting of the blood through liver AVMs which occur in up to 70% of HHT patients.  PAH is much less common and occurs in about 1% of patients, most with the ACVRL1 gene mutation.  HHT patients should be screened for liver AVMs and those with them should have periodic echocardiograms to monitor their heart function.  PH in these situations is treated by managing the anemia, heart function and medications such as Avastin to improve bleeding and liver AVMs.  Bubble echo screening should be done periodically to look for lung AVMs which can cause many of the same symptoms as PH can.  Lastly, in the past HHT patients had to accept living with anemia and iron deficiency.  With better iron products and the use of antiangiogenic medications such as Avastin and Pomalidomide, those with HHT do not have to be anemic.  As you probably know, iron and ferritin levels for those with HHT need to be higher than many other people.  A “normal” level may not protect against the anemia that may be one bad nosebleed away from happening.

        • #34962
          Jen Cueva
          Keymaster

          Wow, thanks for those numbers and more information, @scott. This answers my question in the previous comment to you. You must constantly research this and have vast knowledge from years of experience.

          Your valuable information will benefit others reading who may want or need to read more about HHTand PH.

    • #34956
      Jen Cueva
      Keymaster

      Hi @brendad53, of course, these things make us wonder. We know our bodies and when something is off.

      I had anemia sometime before I had PH. It was easier to control alone. Plus, I didn’t require the infusions back then. As my PH progressed off and on through the years, the anemia worsened.

      My kidney disease has been linked to 10 plus years of high doses of three diuretics to keep my heart from failing. Then it started. Now, stage 3 kidney disease for at least 5 years, probably 7 now. Thankfully, I’m on a lower dosage of diuretics to hopefully keep my kidneys from worsening.

      High eosinophils are often related to things like Gerd, Crohn’s, IBD, endocrine, and allergic disorders. Thus, that itching would be an indicator.

      I know you will be ready to have some answers and validation @brendad53. But even once you get that for PH, it sounds like you may have a few more specialists to add to your team. I know it’s no fun, but many of us have multiple specialists. Some related to PH, others not.

      • #34957
        Brenda Denzler
        Participant

        Yeah. I already have a cancer person. A heart person. A blood person. And, technically, an allergy person. Now a lung person. The thought of adding a kidney person and an endocrine person. I feel like an old junker car being pieced out for this part and that part!

        • #34959
          Jen Cueva
          Keymaster

          LOL, @brendad53, I guess I and many others are part of the old junker cars. Maybe we should hang around the junkyards for extra parts, huh? That’s too funny but true; it sometimes does feel that way.

    • #34965
      Charlotte McCabe
      Participant

      In 2013 a routine CAT scan found 2 or 3 very small nodules on the left upper lobe of my left lung. Docs said, “we’ll watch them. By 2015 it was 4 or 5 with one of the nodules growing to 7mm in size from 3mm. My Docs couldn’t say for sure what they were or if they were related to my PH (which was diagnosed in 2005). I chod
      see to be aggressive to find out as I had been a smoker years before and I had not had any cancer dx so far.

      Wound up having lung surgery to get to the nodules, remove them and then find out what they were. Not cancer, they were amaloid deposits. To this day my docs still don’t know if they were related to my PH. Thankfully they were not cancer, and I do not have amaliodosis.

      • #34966
        Brenda Denzler
        Participant

        Thanks, Charlotte. You have an interesting history with pulmonary nodules. It’s nice to hear a story like that.

    • #34967
      Terry
      Participant

      G’Day Scott and Jen,

      Thanks for sharing Scott. My wife at 79  has lived with HHT for the last 60 years and has had  infusions but not for three years as her doctor has her on appropriate medications to keep her iron and b12 levels in the low normal range . She knows infusions will again be inevitable. Regular fbc etc. have  shown all other bodily functions normal which astounds the doc.  Coming from a large long line of HHT sufferers she has seen the  failures in  attempting to cure the nose bleeds.  It can jump generations and although our three daughters have not shown any symptoms one of our grandsons has.
      I think I will leave her to manage  as she wishes.

      • #34978
        Scott
        Participant

        Terry,

         

        I am glad she is doing fairly well.  Just one word of caution.  HHT is an autosomal dominant disease.  If you get the gene, you have it.  50% of children get it.  HHT DOES NOT skip generations.  It can have very variable penetrance.  About 10% of people with an HHT mutation do not have nosebleeds yet can have lung and/or brain AVMs which can be life threatening.  We have seen too many families lose children because they were assumed not to have HHT because of a lack of nosebleeds only to have a massive lung or brain hemorrhage.  Every child of someone with HHT should have genetic testing done if possible.  If they are positive, their children need testing.  If they are negative, then none of their children will be at risk and no further person in that line will need to worry.  If genetic testing is not possible, they should be screened for lung and brain AVMs to prevent a catastrophe.  If your grandson appears to have HHT, he should be screened and his mother  must have HHT as well but all of your daughters should undergo testing not just for them but to know if their children require it.

         

        • This reply was modified 9 hours, 27 minutes ago by Scott.
        • #34980
          Terry
          Participant

          Scott,  Important info. I will pass it on . Thank You.

        • #34981
          Terry
          Participant

          Scott , Thankfully it seems it was just me who thought it jumped generations as everyone is well aware it does not.   I was also reminded about her cousin Pam who did not know she had it until she started coughing up blood , no nosebleeds.

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