• What is your CF clinic like?

    Posted by William on May 10, 2023 at 8:40 am

    No CF clinic is the same. They each have their own unique traits but definitely share two things in common: love and care for all of us dealing with CF. I absolutely view my Doctor like a nurturing and funny Aunt.

     

    What is your CF clinic like? What is one word you’d use to describe them?

    Jonny Flores replied 3 months, 1 week ago 7 Members · 17 Replies
  • 17 Replies
  • stacy-french

    Member
    May 12, 2023 at 8:56 am

    My Cf clinic is not for the elderly with CF nor their hospital for CF anyone… the CF ward although newly redone reeks of aspergillus mold.. it is in the masks and the linens and all things that can retain smell.  The building is old and in need of a complete redo.   As a patient, I guess I phone when I think I need to see a doctor… it was at one time every three months that I would be scheduled to come in … no longer… no doctor has ever made future appointments in the past four years.  I have to phone if I need to see someone.  I have been given a new medication for bones which I had to stop using, there was no follow-up appointment made to check on me.  It is quite disheartening.  I did originally travel to North Carolina at UNC however it now has become quite impossible.  My sister goes there and her doctors see her every 3 months… I’m lucky to get an appointment with someone in 3 months.  (oh unless I want to do it facetime) I think is it a bit disgraceful that there is such a lack of care and concern for the patient..this past year,  I had complained quite a bit of difficulty in breathing… 3 months later a heart attack.  Not one doctor looked into it, it was just written off as  CF related issues even though my record shows my mother died of it.   It is sad there is no good clinic here.  It is sad that an elderly newer diagnosed CF patient is ignored… the young elderly (18 and over) seem to be all they are concerned with.   I may have not had a heart attack were anyone listening to me.   But so it goes.  I wish I could move but I am not able.

    • William

      Moderator
      May 15, 2023 at 12:47 pm

      I wish you the best of luck in finding a new care team. It’s disappointing to hear about your issues and I hope that you’re able to get better treatment.

    • William

      Moderator
      May 15, 2023 at 12:47 pm

      I wish you the best of luck in finding a new care team. It’s disappointing to hear about your issues and I hope that you’re able to get better treatment.

    • kay

      Member
      September 22, 2023 at 3:08 am

      Stacy – I have to say that I agree with you. I am late-diagnosed as well. I had a sweat test of 60 and then follow-up of 52 (after not eating anything salty for a week in desperation!!) The whole saga began with advanced pulmonary NTM. [Advanced is where cavities form in your lungs .. it’s end stage.]

      For me, I was treated by a senior respiratory doctor who just so happened to also be head of the CF clinic. He spent most of his time building a wall of indifference to my plight and every single appointment I would come away in tears and spend the next week really depressed. No helpful tips. No hopeful comments. Nothing. Just a wall.

      He performed the bronchoscopy which was to get a sample of lung tissue to identify the NTM. As it turned out nothing grew from that sample anyway. It was a huge waste. Even worse, I collapsed after that bronchoscopy in the waiting room while I was leaving. Code Red or whatever they call it and doctors/nurses/needles flying everywhere. My wonderful senior respiratory doctor told me it was because I was dehydrated. I tried to tell him I’d drunk 1 litre of water before the procedure and there was no way on the planet I was dehydrated. Ignored. He was an excellent “Ignorer”. Clearly I was the dumb patient.

      However, not totally dumb as I sought a 2nd, 3rd and final 4th opinion from respiratory specialists. I knew something was wrong with me genetically. These appointments all cost me a fortune!! The 2nd opinion was a colleague of the original doctor and I was treated with the same indifference.

      My biggest crime? I was tearful. I didn’t want to look at pictures of my CT scan and the holes in my lungs. These doctors HATED that as I guess they didn’t have the opportunity to show off their superior knowledge. For me, I’d already seen the pictures on the website and also read the horrific report with the help of Dr Google. I was so distressed by doing this I didn’t sleep more than a couple hours every night for about 2 months. I would wake with my heart racing like I was being chased by wolves. I should have been on anti-anxiety medication. I should have been given help by someone – anyone. But they weren’t the cards I was dealt in life.

      It took ONE YEAR from the initial lung scan to finally be prescribed hypertonic saline (to nebullise). ONE YEAR. For four months of that time I was in a CF clinic and they only prescribed it because I sent an email begging for help with lung clearance.

      My original doctor – the head of the CF clinic – he didn’t diagnose me with CF. I must be the only person in the world who carries that &*^( situation. How did he handle this? With the utmost maturity – NOT. The response from the hospital, “Dr X is more than happy to refer you to another clinic in another state.”

      My NTM was never treated properly. If you read the internet, they clearly state that lung clearance is a priority for patients – especially with advanced pulmonary NTM. I received no help at all. I asked to attend the “Pulmonary Rehabilitation Clinic” multiple times and the answer was a firm “No”.

      You might think I’m an arrogant horrible patient, just “asking for it”. But no, I was polite at all times. I was never, ever rude. My greatest crime was that I was tearful in the beginning. I should have coped better at being eaten alive. I should have coped better with doctors who were indifferent to my suffering – and dare I say – I think the Head of the CF Clinic actually enjoyed watching me suffer.

      The clinic I’m in now, only helped with lung clearance once I begged in an email i.e. put it in writing. Two years into the clinic and in January 2023 they randomly offer me Pulmozyme / Dnase. But it comes with the warning, “Oh, you might find taking it affects your breathing. YOU may find it hard to breathe.” What do you think I’m going to say to that offer? Yes, “Hell no!”

      I live in no-man’s-land. Eternally grateful that I had delayed CF and the fertilizer storm didn’t hit with full force until I was 52yrs old. I have one known mutation and they said, “There’s no point testing for the other one as it won’t change your treatment which is … nothing.” The CF doctor at the clinic said to me … quote … “YOU don’t have CF. YOU’VE been perfectly FINE your entire life. So when do you want to attend clinic next?” I thought, “Never actually.” The arrangement now that I queried why it took them 2 years to offer Pulmozyme is “You call us if you need us.”

      So, as someone who is in the bottom 5% of weight, multiple tragic pregnancy losses (but went on to have 3 healthy children with the help of clexane), eternal nose issues (but not sinus it seems), one mutation, sweat test of 60 then 52, advanced pulmonary NTM ………

      I do have CF according to the doctor that diagnosed me. I don’t have CF according to the doctor at the CF clinic. I get it. I’m “old”. I was misdiagnosed so many times with asthma, post-nasal drip, post-viral cough, “you’re fine!” … hence resulting in ADVANCED pulmonary NTM.

      I’m thinking of trying to find a USA respiratory doctor that will see me via SKYPE. Would love advice from anyone else in the same Powerball-odds situation I find myself…. My 4 siblings all refuse to be tested despite a huge history of pancreas problems, gall bladder issues/removal, pneumonia, sinusitis etc. Plus they watch how I’ve been treated and go, “Yeah…nah”

    • kathy-gunter

      Member
      October 1, 2023 at 4:37 am

      Stacy, I am so sorry to hear of your situation too (see reply to Kay below). I wish there was a way you could be seen at UNC more often? I have been very curious about their clinic as well. My brother lives part of the year in that area and loves it. It seems to me since Covid, care has slipped quite a bit. Some of that is due to fewer staff and some may actually be due to staff burn-out. Maybe they are numb now and just jaded with a loss of compassion for patients? Whatever the reason, it is palpable – you can actually feel it in the room. Nothingness from so many – like zombies going through the motions. I get it and I actually feel for them after what they have been through, but in our situation, I am really worried. Where does that leave us in our darkest chapters?

      • robert-lane

        Member
        January 25, 2024 at 3:39 pm

        Kathy, I am so sorry to hear of your experience of deterioration of care at UNC. I have been treated there in Chapel Hill since December of 2017 (they diagnosed me). My most recent visit was December 26, 2023–the day after Christmas. I have to say that I have always been treated with the utmost care and respect. I leave feeling encouraged, even when I arrive there feeling pretty low. My doc is on top of the research and clinical trials and takes care to explain the latest findings to me (I try to stay somewhat familiar with the research also, as I was once a research chemist who studied proteins and protein folding. I am very impressed with my doc’s knowledge and treatment recommendations.)

        I sincerely hope your experience improves. This disease is a nasty business.

  • gina-michele

    Member
    June 4, 2023 at 7:49 pm

    The CF clinic that I visit is so incredibly familial and caring – and treat even me (not the CF patient, but the spouse of the CF patient) like they’ve known me my whole life, understand and support me in my integral role as the CF caregiver, and with true love and regard.

    • William

      Moderator
      June 5, 2023 at 6:28 pm

      They sound like a phenomenal center!

      • gina-michele

        Member
        September 27, 2023 at 1:32 pm

        It’s true! They are.

      • William

        Moderator
        September 27, 2023 at 1:43 pm

        God bless them!

  • kay

    Member
    September 22, 2023 at 3:17 am

    Oh and I forgot the best part. My wonderful, pointless bronchoscopy that I collapsed afterwards and met the Medical Emergency Team (MET) … it didn’t stop there. Hospital-acquired pneumonia followed very, very swiftly and I spent 3 weeks in a hospital isolation room staring at a painting of a pathetic solitary bird on the edge of a depressing grey lake. Some sick hospital administrator thought that “inspiring” painting would be ideal for someone in a respiratory isolation room. Bless them. I never felt more alone looking at it.

    So there I am in hospital with pneumonia AND unidentified pulmonary NTM AND apparently some common water-borne parasite in my intestines that is often harmless in people but gave me non-stop diarrhoea. My illustrious doctor of course refusing to start me on ANY medication until the bug was identified. (I’ve read in advanced pulmonary NTM there’s a case for starting on ethambutol immediately.) But not for me. I got no choice. Just told, ‘NO’. So I’m lying there in bed literally being eaten alive, struggling to breathe from the pneumonia and NTM. Performing a climb of Mt Everest just getting out of bed to get to the toilet. Husband in full-blown-panic and blaming me. Kids going off the rails. Mother recently diagnosed with terminal cancer and the icing on the cake? A respiratory doctor determined to build a wall of indifference. I was clearly an “emotional / needy / tearful disgusting patient”.

    And if any doctor or nurse is reading this, stop for one second and remember, “It costs nothing to be kind. NOTHING.” I am very thin and very much the runt of the litter in my family. This unfortunately is familiar territory for me. I have moderate bronchiectasis as a result of the NTM.

    • William

      Moderator
      September 27, 2023 at 1:38 pm

      Wow, Kay. I am extremely saddened and sorry to hear about your multiple unfortunate experiences with your doctors and these clinics. Hopefully you are able to meet with a US doctor via skype or zoom and they’re able to assist you on your journey. Being a late diagnosis seems like a hard place to start from, but hopefully you can rise above it!

    • kathy-gunter

      Member
      October 1, 2023 at 4:25 am

      Kay, I am so sorry to hear all that. Truly…and I can relate. I once had a horrible situation at a center and I left. I don’t think I was ever wanted there and clearly I wasn’t (as no one ever reached out to me after-the-fact). Like you, when something was wrong, I tried (as politely as possible) to request help or a change. It was not well-received and all I got there was cold detachment and the distinct feeling that I was somehow bothering them. It even got back to me from other employees (nurses, etc..) that one of the doctors and one of the nurse practitioners joked behind my back and called me “crazy” and demanding. I wasn’t. And, although I suffer from anxiety like a lot of us, I am not crazy. Apparently, anything less than perfect behavior as you are dying is unacceptable? I have resigned myself to early death with very little medical intervention in this new environment post covid unless God has other plans and intercedes with a Miracle. At least I have lived into an older age, for CF, which is much more than some ever received. My sister passed away at the age of 16 and never got great care as it wasn’t really available back then.

      • kay

        Member
        November 1, 2023 at 2:28 am

        Hi Kathy – Thank-you so much for your message. It means a lot to me. I’ve decided for now to forego my clinic and I have not attended early 2023. Randomly offering me Pulmozyme after 2 years in the clinic and then telling me I might find it hard to breathe while taking it…

        Well, I can’t find anywhere on the internet that says that’s a side-effect.

        I think they were making it as unattractive an option as possible so I’d say “No”. Now, even if I wanted to try it, I can’t as I’m terrified I won’t be able to breathe. Mission accomplished. Patient now completely gaslit. Patient disengaging from the process. That was the goal…

        I do meet the requirements (unfortunately) for a CF diagnosis. Bronchiectasis (moderate) and the next level up is severe. It’s not minor… and mostly I’d say the way it is because of the months and months and months of misdiagnosis of the NTM. When I eventually made it to hospital, at one point they were checking me for sepsis. I had the Head of the CF Clinic come into my isolation room NOT wearing a mask. Everyone else decked out like I had ebola. You couldn’t make this %^& (fertilizer) up. Same doctor that didn’t diagnose me with CF or even think to give me a sweat test. He didn’t care. Nope, he wasn’t overworked.

  • kathy-gunter

    Member
    October 1, 2023 at 4:14 am

    William, your team literally sounds dreamy! What I would give for a feeling like that from clinic! My current team is good, but small (one doctor with a new one on his way) at a very small clinic with none of the traditional “frills” of CF clinic. But the doctor, when he is available, is caring, kind and knowledgeable. However, I get the distinct feeling that I’ll never be able to bond with anyone on the team. They are too busy and pulled in 40 directions. They simply do not have time to devote to an aging, broken down (read hopeless as far as treatments go) CF woman.

  • Jonny Flores

    Member
    February 8, 2024 at 8:34 pm

    Does anyone have any opinions/experiences with the CF clinics in Texas? If so, could you please share your thoughts, good or bad?

  • William

    Moderator
    October 20, 2023 at 2:35 pm

    Yeah, my only hope is that if some of these are in the United States that they immediately get fixed by the foundation. Absolutely horrendous treatment.

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