This topic contains 9 replies, has 6 voices, and was last updated by  Susan Howitt 2 weeks ago.

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  • #20953
     Susan Howitt 
    Participant

    Yesterday had 6 month review.  I have CPFE, Brochiestasis and Sytemic Scleroderma. Lung function test and 6 minute walk etc.  6 minute walk test with and without oxygen came out the same, down to 77 blood oxygen, lady thought that was odd.

    As people with CPFE will know our lung function test come out normal only oxygen diffusion is bad

    I was told that because of this normal lung function test that I had to get fit and not sit about !! That is the last thing I do, I walk my dog every day up slopes (difficult) and into the forest for about 2kms, I walk round the supermarket every day, up and down all the aisles.  I live alone with my dogs so I have to do every thing, I mow the lawns all 2,000m2 of it,  I also run a holiday home so have to clean that and mow the lawns, again 2,000m2, my daughter now helps me with that as I can’t do it all in time for the next clients, I am fully booked up until Nov 2nd. In the winter I get in and stack logs, bring them into the house etc.  Hate not doing anything so some days I really have to force my self to over come the fatigue and get some get up and go.  I am being forced to go to exercise classes three time a week on hour and a half’s drive away, having to see the consultant next week.  Diagnosed last May, by this May on oxygen so going down hill fairly fast but have been upbeat about it until yesterday. I am devastated to basically be told I am not trying, now feel like giving up, haven’t stopped crying since yesterday.

  • #20957
     Mark Koziol 
    Keymaster

    Hello Susan, you made me tired just listening to the amount of work you do. Please don’t let the ignorance of one person deter you in your quest to get better and yearn for a better quality of life. Keep doing as much your body will allow and try to ignore the negativity in your life. I’m sorry you had to hear this from a medical professional. Keep your spirits up. Mark

  • #20954
     Kristina grilo 
    Participant

    I am so sorry….do you have a Bible you can read? I find that my faith really helps a lot when all seems lost. Please don’t give up, God loves you!

  • #20960
     Marsha 
    Participant

    Susan, first, I send you warm hugs and total understanding of how you must be feeling.  Depressed?  Absolutely.  Angry?  I would certainly think so!

    When only one month after chemo and continuing IPF, I saw my Pulmonologist who told me to stay active all day (no laying down) and use my bed only to sleep (“dance around and play” she said).  I felt incredulous at what I was hearing.  As if she knew nothing about my physical condition in the 2 years as my Dr.!  I was also very angry at her insensitivity and frustrated but was not able to express any of these to her.  I was speechless and wanted to get the hell out of there asap.  Next came terrible times of depression and hopelessness.

    I might be way off but our stories seem to parallel, along with our respective depression.  For me, depression helped me push my anger inside myself instead of expressing it.  Depression turned my anger toward myself instead of my Respected All-Knowing Dr.

    Whoever told you to not sit around and get moving knowing all that you currently do that exhausts you does not understand your needs at all!  I feel your frustration, sadness, anger and, yes, I feel your loss of hope which often manifests itself as depression.  I am so sorry you are going through this.

    There IS hope.  There are doctors out there who will work with you, be interested in how you feel, what your limitations are and take all of this (along with their knowledge of your diseases) into serious consideration before offering suggestions relative to your activity/what you should and should not do.  It is your right as a human being to work with Doctors who take the time to assess and respond to your unique needs.  There is hope for you.  Perhaps you can energize enough to make a few calls to organizations that are centered on the diseases you’re diagnosed with who might refer you to such Doctors.  It took me a few months to reach out and find a suitable Dr. for me and depression no longer comes over me insofar as my Dr. is concerned.  I even look forward to seeing her…

    If you are still ok with your Dr., prayer, talking with your daughter or someone else you trust about your feelings behind your depression might help lift it.  I know how difficult it is to engage with people and how easy it is to isolate when depressed.  If this is true for you, please know that the more you identify and talk about your feelings with those who care for you, the sooner you will have enough energy to act in your own behalf in getting your needs met and speaking up when they are not!

    You are in my prayers, Susan.  I will be happy to send you my email address if you’d like.  Hang on, my dear…better days are coming!

    Sincerely,  Marsha

     

     

  • #20962
     Susan Howitt 
    Participant

    Hi Marsha

    You’re so sweet, thank you

    Our stories do have a familiar ring to them. I was also speechless I couldn’t even protest, also just wanted to run, never had depression before, it arrived yesterday, almost immediately after that disaster of an appointment, cried all night, not at all like me, not a nice feeling. I also was so shocked that my pulmonologist hadn’t read my notes and just assumed I had IPF or COPD like most of the patients he sees, my combination is very rare indeed. I can go for hours without oxygen as long as I don’t move, as soon as I move I plummet, the lowest blood oxygen I got to was 49 the other day just getting a few things out of the car because I could be bothered to put on my oxygen back pack.  It is this highly respected pulmonologist has ordered I do a supervised course of a month of running and skipping and hard exercise to get my lungs functioning as best they can as according to him my lung function tests are very good so no reason why I can’t do these exercises, the reason why I can’t is that I have CPFE + & + !!! Said I have to get my muscles in good shape, I know I am a little overweight, by about 2 stone, steroids have a habit of piling the pounds on you, haven’t put any more weight on for months. What is left of my lungs function well, just can’t diffuse the oxygen into my blood hence I become very breathless, no amount of exercise will improve that, the opposite will happen,  low blood oxygen = organ damage.  Why is it I have to do the research, one medication I was given nearly killed me, should never have been prescribed to some one with CPFE.  I so want to give up fighting, (haven’t got long left,  I know that, husband already dead of the same poison) got my rescue dogs to think about, they keep me going, keep me active, have to think of them not me

    I live abroad and out in the sticks, 10 houses here all nationals, I am the only foreigner, nearest pulmonologist is the one I have, 1 1/2 hours away, no chance of changing, he is charming and speaks English to my daughter so she can understand, she hasn’t been out here long, I have been here 30 years.  Found people melt away when there is something obviously wrong with you, they were fine until I had to be on oxygen, nasal prongs and a back pack, dead give away., same when you become widowed, it is amazing how many people no longer stay in touch !!

     

    Thank you, you lovely people sorry to moan yet again.

     

    Cordialement  Sue

  • #20973
     Charlene Marshall 
    Keymaster

    Hi Sue,

    Oh goodness, I am so sad to read your latest update and apologies for the time it took me to read it and write back. I just wanted to echo the sentiments of Marsha, Kristina and Mark above; know that you are not alone and focus on the positives in your life. I know that is so hard though, so I don’t want to encourage that without the acknowledgement that this is far easier said than done. Are there other ways to help with the ‘being fit’ request that your doctor wants, that maybe aren’t as physically taxing? My colleague recently just changed her diet because she wanted to lose some weight and exercise is impossible for her given another condition she has, and she’s done really well with the weight loss so far! I’m not suggesting this, just trying to get creative in ways that might help you achieve what the doctor wants AND not be absolutely exhausting for you.

    Spend time doing what makes your soul happy this weekend and feel free to write any time. So sorry to hear of your experience with this particular medical professional!

    Hang in there,
    Charlene.

  • #21026
     Nan 
    Participant

    Hi Sue and Marsha, i can so relate. I actually just posted in a different forum about my challenges with the medical field and the dismissiveness. I have been through cancer and now PF and both times i have had to deal with this. Doctors really dont handle personal relationships well and are notorious for saying the wrong thing, please dont take it to heart. You know how hard you work, you know how compliant you are, try not to let their remarks get to you, i know way easier said than done but remind yourself all that matters is that you know the truth. Give yourself major koodos for what you do. You are doing way more than me and i am just new on this journey, not on oxygen. I have been really down on the dumps to. One time driving home from a hospital I bawled my eyes out, like real hard cry, my poor husband. I was able to get on because of people reminding me that what I know is what matters. Give yourself lots of love, give yourself a break, the doc is there for medical stuff and just brush comments off, i doubt he/she meant to break your spirit. I know how easy it is to go into a dark place and hard to get out, just keep up the positive self talk ( I am telling myself this too). Hugs to you both and the others here too, so glad we have this place to come to. i too have rescue dogs, love them. You are a good person and do everything you can, dont give up!

  • #21027
     Susan Howitt 
    Participant

    Thank you Nan

    Think this week if I didn’t have my dogs I might have just stopped fighting, daughter back in the UK for a week. People tell me I know my own body, yes I do but here you don’t argue with the medical profession, I do, this is because since a medical mistake by a careless dr , nearly ended my husbands life 20 years ago, I research thoroughly absolutely every thing.  The combination of the 4 lung diseases I have is pretty rare but the effects of CPFE are fairly well documented and pulmonary rehab trials ALL indicate that there is no benefit in it for people with CPFE and one states it to be detrimental, on all the English sites I look at but not so on French sites, only found one mentioning CPFE or SEF as it is called here. I thought my pulmonologist knew about CPFE and its effects but now it is glaringly obvious he doesn’t and that has left me feeling extremely vulnerable and with nowhere else to go.  I am not scared of dying but don’t want to go there sooner because of some one else’s ignorance.

    I am in a very sticky position here with Brexit and the threat that our medical care might have to be paid for by a full private insurance, no insurance company would take me on even if I could afford it or the worst scenario possible, that any one being a drain on resources, financially (that would be me as atm as oxygen and treatment are 100% free) could be sent back to their country of origin.

    Got initial consultation with the exercise person on Friday, will see how it goes.  Am scared will be dumped completely if I don’t go through with part of it at least.  Because I refused to go on Esbriet my 3 monthly appointments and scans were immediately dropped to six monthly and no more CT scans and smack bang in the middle of those 6 months I was hospitalised and needed to be put on oxygen !!! I need drs notes every six months for the oxygen.  The care system here is extremely good if you don’t argue, don’t know anything and toe the line and do as you are ordered, buck the system and there are consequences so it seems.

  • #21085
     Nan 
    Participant

    Hi Susan and everyone else, hope you are well. Just wanted to say i think of you often. When i hear the brexit stuff i think of you. I know you are doing everything you can, don’t let anyone “blame the victim”. Hugs to you and your dogs.

  • #21094
     Susan Howitt 
    Participant

    Hi Nan

     

    Thanks for the encouragement, had appointment yesterday, 5am get up as hospital is 1 1/2 hours away.  Rehab fella had never heard of what I have got but said all lung problems are the same and respond in the same way !!!!!  I have actually got a bit of a get out, proffs secretary forgot to make an appointments for the next stage of rehab, tests to see what I am capable of, should have been made at the same time as this appointment, now nothing available until June 2020 anyway, in a way would have liked to have done them just to prove if I was right or they were.  But have decided that I am going to *forget* or *misunderstand* (joys of being foreign)  about making the appointment until I see the proff in February.  Worked out the cost of going to this rehab three time a week for three months, over 2,800€ in diesel alone, British pensions aren’t up to that sort of bashing  over three months. On top of that there are the car costs, I know I shouldn’t think of money where health is concerned but I do when I think the treatment will be an utter waste of every ones time. Maybe I am strange but I actually don’t want treatment other than the oxygen and not to suffocate to death at the end quite ok about it. Stress is not good. Being emotionally blackmailed by family too, rehab will not make me live longer my conditions are progressive.

     

    A bientôt    Sue

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