Forum Replies Created

  • w-hoh

    Member
    February 15, 2024 at 3:51 pm in reply to: New Port-a-catheter and Using the Percussion Vest

    I would seriously ask this question of my CF Clinic. I’m sure they’ve run into this before.<div>

    There’s always the option of doing it old school, i.e. manual chest percussion therapy. I know that it’s difficult to find someone to do it for you. And you may not have a treatment table. And it may not be as efficient. But it may be better than nothing. And it would avoid the port area. But again, it’s just an option that should be discussed with a doctor.

    I would talk with the pulmonology fellow on call at the hospital where your CF Clinic is. If he/she doesn’t know, they can find out… by calling the doctor who did your port procedure at home. Etc.

    </div>

  • w-hoh

    Member
    September 29, 2022 at 2:19 pm in reply to: Late CF Diagnosis

    My son was diagnosed via newborn screening in 2008. I’m a physician but I had to admit I didn’t know much about cystic fibrosis because it was outside of my field of practice as a Public Health Physician

    As I read about traits of cystic fibrosis; things like changes on chest x-ray, pancreatitis, infertility in males, Etc… I began to think of my brother-in-law.

    My brother-in-law had fibrotic changes on chest x-ray that they had blamed on his work at an aluminum plant. He had been diagnosed with asthma at an early age and had several pneumonias that were difficult to treat, attributed to his asthma. He also had aspermia due to congenital absence of the vas deferens.

    I advised him to get checked out for Cystic Fibrosis. He refused for a number of years, but when he finally got a sweat test and genetic testing, he was double Delta f508.

    He was 50 years of age at the time.

    Late diagnosis are becoming more and more common because Physicians are thinking about it in older patients.

     

  • w-hoh

    Member
    September 29, 2022 at 2:19 pm in reply to: Late CF Diagnosis

    My son was diagnosed via newborn screening in 2008. I’m a physician but I had to admit I didn’t know much about cystic fibrosis because it was outside of my field of practice as a Public Health Physician

    As I read about traits of cystic fibrosis; things like changes on chest x-ray, pancreatitis, infertility in males, Etc… I began to think of my brother-in-law.

    My brother-in-law had fibrotic changes on chest x-ray that they had blamed on his work at an aluminum plant. He had been diagnosed with asthma at an early age and had several pneumonias that were difficult to treat, attributed to his asthma. He also had aspermia due to congenital absence of the vas deferens.

    I advised him to get checked out for Cystic Fibrosis. He refused for a number of years, but when he finally got a sweat test and genetic testing, he was double Delta f508.

    He was 50 years of age at the time.

    Late diagnosis are becoming more and more common because Physicians are thinking about it in older patients.

     

  • w-hoh

    Member
    April 26, 2022 at 2:45 pm in reply to: Caregiver Role Reversal

    As the parent of a child with cystic fibrosis and autism, you are right. It can be exhausting being a caregiver. But it’s a very rewarding experience also.

    My wife is basically a saint, caring for my child throughout COVID-19 and caring for me after my spinal cord injury in the military.

    Now you  understand that caring for a loved one through an illness is not a burden. It’s something you freely want to do because you love the person who needs the help.

    Prayers for your husband’s full recovery.

  • w-hoh

    Member
    April 22, 2022 at 12:42 am in reply to: Trikafta and conjunctivitis

    Hello,
    I’m a retired physician who specialized in occupational and environmental medicine. I have a 14 year old with cystic fibrosis. And I have a lot of personal and professional experience with issues like this.

    it could be that you have allergic conjunctivitis due to an allergen in your environment. The fact that your eyes respond to the antihistamine eye drop would suggest this is the case.

    your symptoms starting after beginning trikafta could be coincidental, as allergies can begin at anytime in life. Mine began around age 35.

    We use pataday antihistamine drops in my family. The lodoss just went over the counter and the higher dose is still prescription only. Maybe they would work better for you. Just an idea.

    There are other things you can do if it is an allergy. We run a HEPA filter in our home heating / air conditioning unit. We also run a filter in my bedroom and that of my child’s bedroom.

    My kid is 13 years old and has cystic fibrosis. His severe allergies begin when he was five and he’s started kalydeco at age six. Worst allergies I’ve ever seen. Without antihistamine eye drops, his eyes can literally swell shut in the spring.

    Consider seeing an allergist who can give you other recommendations and may do some testing. Well worth it.

    For instance, I was convinced that I was allergic to our dog, but testing showed I was not. His long coat was bringing in pollen from outside. So now we keep our Cocker Spaniel’s fur cut short during the spring and summer months.

    There are so many suggestions they can make. They suggested purchasing a Roomba to cut down on dust in the home, as I’m allergic to dust. It has helped a lot.

    These are just things to consider. Of course, always talk with your own Healthcare team before taking any new medication, changing medications or stopping medications.

  • w-hoh

    Member
    December 10, 2021 at 9:32 am in reply to: A short horror story

    My son has cystic fibrosis so I’ve spent time on the phone with private insurance companies as well as Medicaid. I’m a disabled veteran and rely upon Medicare and the VA system.

    What you experienced was the end of the year rush that insurance companies have to deal with, when people are trying to “get their medical care in” before their deductibles and out-of-pocket maximums reset on December 31st.

    Everyone tries to get medical procedures during Dec. and there are Insurance questions regarding what facilities are covered, how much will a procedure cost, do they cover the procedure, Etc. It gets even worse in another week or two.

    I worked at a health insurance company so I know.

    I thought I understood health insurance but I had to reach out to CFF COMPASS for help on several issues. You can get in touch with them through cff.org sometimes you’re just too sick to deal with the insurance company and need some help and that’s okay.

  • w-hoh

    Member
    September 17, 2021 at 12:25 pm in reply to: Warning: Ranting About Docs and Accommodations and Telehealth

    CFF.org lists the care center data for various cf are centers. They list the Guidelines for care (for pediatric patients) as
    “percentage of children less than 18 years of age who have had at least four clinic visits, two lung function tests, and a sputum or throat culture. ”

    In order to accomplish this in a high enough percentage of patients to maintain a high-level ranking, they must see you in a CF clinic in person.

    That’s is part of the reason why, and it is wrong.

  • w-hoh

    Member
    September 14, 2021 at 2:32 pm in reply to: Monday Shoutout: The Capable Disabled

    This capable disabled individual is a physician who became disabled due to a spinal cord injury in the US Army Medical Corps during the global war on terror (GWOT)… specifically Iraq military engagement.

    When I had recovered enough; my wife and I decided to have children. Our first child was diagnosed with cystic fibrosis early in life. (We decided not to have anymore children after that.)

    My son was also diagnosed with moderate to severe autism at age 3 with some level of mental impairment, formally called mental retardation.

    It’s been a serious challenge, being a father to a child with CF and autism while struggling with my own life changing injury.

    I’m not telling my story to gain sympathy for myself or my son. I’m doing it because I know that others have similar experiences and may be other just starting their journey as a disabled parent of a CFer , or have traveled many more miles down this road. And of course CFers can have children with CF or other disabling conditions.

    I know my story is not unique. My wife has an autoimmune disease that is slowly destroying her joints and her ability to care for our son. She can relate to what I’m going through.

    I also know of a blogger at CF news today, Bailey Vincent, who has shared that she has both CF & deafness.

    I would appreciate knowing how the two interact in Ms. Vincent’s life, making her struggle with CF more difficult. (She had discussed how deafness makes CF procedures more challenging and I know it takes courage to talk about personal things like that publicly.) I know she is also a dancer, and that has to be a challenging career choice for her.

    And anyone else that wants to share, I would be more than happy to listen. Thank you.

  • w-hoh

    Member
    August 10, 2021 at 2:25 pm in reply to: COVID-19 check in

    My son is 12 years old with cystic fibrosis and I’m a retired public health position.

    Here in Charleston WV, people are basically being knuckleheads. They’re not getting vaccinated insufficient numbers. the estimate that only approximately 10% wearing masks at the local stores.

    Positive side, we can buy and 95 masks at the local Home Depot and Lowe’s.

    We are homeschooling my son because they are not requiring masks in the schools.

    Not sure when this became a political thing instead of a public health concern, but it needs to stop.

  • w-hoh

    Member
    March 18, 2021 at 11:17 am in reply to: Social workers and CF

    I’m so happy you wrote this post!

    I’m almost embarrassed to admit, that as a physician, I didn’t see the point of having a social worker on our team at the CF clinic at University of Pittsburgh… UNTIL I needed her.

    There are so many programs out there to help children/adults with chronic healthcare needs but you rematch need an experienced expert to navigate to system. THE SOCIAL WORKER IS THAT EXPERT NAVIGATOR!

    Also, licensed clinical social workers/LCSWs can practice as psychologists in most states. They’re very good at listening and helping to get you “hooked up” with a mental health expert if/when you need one.

    They may not get the respect they deserve, but they ARE very valuable member of any CF team. I think they should be there for every patient at every meeting. (Univ of Pittsburgh CF clinic has a clinical social worker there for us at EVERY visit and it has been extremely helpful!)

    Never be afraid to ask the social worker what they can offer to your care. An open-ended question like that may give you a surprising answer.

    Thank you all for taking the time to read my reply. And as always Jenny, keep up the great work!

  • w-hoh

    Member
    March 10, 2021 at 2:56 pm in reply to: We Are Failing At Accessibility in The OR

    My apologies. I rely primarily upon voice recognition to “type” and made a blunder.

    Did not mean to say “not many deaf INDIVIDUALS have proper training in medical terminology”.

    Should’ve read… not many deaf INTERPRETERS have proper training in medical terminology, not deaf individuals”. (I know that you do by this point in your life.)

    I really should proofread better.

    Total respect for the soldiers I served while in the Army! It was my honor every day to take care of them.

  • w-hoh

    Member
    March 10, 2021 at 2:48 am in reply to: We Are Failing At Accessibility in The OR

    I’m a physician and have done “spinal taps” in a fluoroscopy suite, similar to an OR, on a large number of occasions. they are usually done in a procedure room, or if there is a real need, in the OR.

    I was also injured while serving in the U.S. Army Medical Corps, suffering a spinal cord injury. I’ve had lumbar punctures done on myself on a number of occasions. My wife had an “epidural” when she had my son, which involves a lumbar puncture.

    I’m sorry that you feel unheard and I understand anxiety regarding procedures, ESPECIALLY when someone is doing something involving your spinal canal.

    Regarding the lack of warning during the procedure, notice that the the doctor’s fingers localize the proper location between vertebrae and the patient prior to placing the needle. A suggestion: you could ask the doctor to have an assistant give you a tactile reminder (tap your hand several times or something) right before s/he enters with the needle, without violating sterile conditions.

    There really isn’t a danger to a lumbar puncture/LP, previously referred to as a spinal tap. They’re entering well below the level of the spinal cord, and the risk of damage to a nerve is very low, again because of the location of the procedure. Some physicians overemphasize the minimal risk because of fears about medical malpractice. if the physician or nurse who obtains informed consent doesn’t tell you all this, I apologize for them.

    Actual communication while doing the procedure is rarely needed. the procedure is routinely done on newborns with a fever, to rule out meningitis. Spanish-speaking only (SSO) patients did not require interpreters for this procedure where I did them in El Paso. Maybe that was a mistake, but as long as we explained what was going to happen before hand, they were comfortable with it. And I understood some basic Spanish words like stop, pain, no, wait, etc.

    I would insist that an interpreter be nearby after the procedure is done to communicate any postprocedural symptoms. like the postprocedural headache.

    Just talk to any physician who performs this procedure and they will verify everything that I’m saying.

    And in terms of an interpreter for deaf people in a medical setting, not many deaf individuals have proper training in medical terminology. That’s something you need to address directly with the hospital. As you’re well aware, it’s an ADA issue. The hospital may need to use a different deaf person interpreterservice… Or this individual needs additional training from the service that employs her.

    If I recall correctly from an earlier post, you mentioned that you have serious anxiety related to work situations also. There’s treatment for severe anxiety that most people would consider to be somewhat excessive. And while I’m not attempting to diagnose you, OCD is an anxiety disorder.

    And OCD is actually much more common in persons with chronic medical disorders like CF. My son has CF and seems to be developing some anxiety issues too.

  • w-hoh

    Member
    March 4, 2021 at 3:02 pm in reply to: Gender In The Doctor’s Office…

    I’m a male physician who has a 12-year-old with cystic fibrosis.

    Keep in mind that males who go into pediatric pulmonology are not forced to do so. They recognize that cystic fibrosis will be a large part of their practice and knowing that CF is much more common in females for an unknown reason.

    In other words, they’re choosing a specialty where the patients are predominately female. If they truly were sexist, they would not choose this specially.

    Now adult pulmonology is quite a bit different. In the past, adults were seen in the pediatric CF clinic because they weren’t that many adults with CF due to the devastating nature of the disease. Now, in large part due to automated chest therapy, Pulmozyme, and other medications including the Vertex meds… there will be CF patients living very long lives. so you have adult pulmonologist to now have CF clinics filled with females.

    I spent a good part of my career in the U.S. Army, which was predominately male. Tell Mike to think I never was sexist towards females, as I treat everyone with respect.

    Just my observations. And of course there are exceptions to every rule.

    I have never been intimidated in terms of asking our son’s pulmonologist a question about his care. But I also recognize I’m not the typical parent who may be intimidated by “the doctor”. We been fortunate at the University of Pittsburgh CF clinic. great docs and nurses across-the-board.

  • w-hoh

    Member
    March 2, 2021 at 3:49 pm in reply to: Gender In The Doctor’s Office…

    Sounds a lot like obsessive-compulsive disorder. OCD can be a serious condition and is a very common anxiety disorder in chronically ill.

    Talk to someone you trust about it and get a referral for an evaluation.

    I can tell you from my own experience, you can totally change your life. I used to stay up all night worried about presentations or meetings I shouldn’t worry about also. It is treatable and you’ll be much happier, assuming it is a form of OCD. (And not everyone with OCD is a Germophobic handwasher. That’s only one of many types.)

  • w-hoh

    Member
    March 2, 2021 at 3:43 pm in reply to: Gender In The Doctor’s Office…

    Sounds a lot like obsessive-compulsive disorder. OCD can be a serious condition and is a very common anxiety disorder in chronically ill.

    Talk to someone you trust about it and get a referral for an evaluation.

    I can tell you from my own experience, you can totally change your life. I used to stay up all night worried about presentations or meetings I shouldn’t worry about also. It is treatable and you’ll be much happier, assuming it is a form of OCD. (And not everyone with OCD is a German phobic handwasher. That’s only one of many types.)

  • w-hoh

    Member
    April 23, 2022 at 9:48 pm in reply to: Trikafta and conjunctivitis

    I’m a physician board-certified and residency trained in occupational and environmental medicine.

     

    What I say is based upon best available medical evidence.

    What other people say is…

    less authoritative.

    And not all allergies are seasonal. Including pet dander and allergies to things such as dust (aka dust mite feces)  and mold.

    End of discussion

  • w-hoh

    Member
    January 5, 2021 at 5:23 pm in reply to: CF and alcohol consumption

    Salt intake, not old intake.

    Forgive the typo, I must rely upon voice recognition due to a service-connected disability. Thank you.

  • w-hoh

    Member
    January 5, 2021 at 5:22 pm in reply to: CF and alcohol consumption

    Paul is wrong about’s old intake. People with CF do need to take extra salt in addition to what they get in a normal American diet It’s a well-established fact. but don’t trust me, some random guy on the Internet… Listen to your dietitian in your CF clinic.