August 22, 2019 at 3:37 am #20953
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.
August 22, 2019 at 9:25 am #20957
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
August 22, 2019 at 9:25 am #20954Kristina griloParticipant
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!
August 22, 2019 at 11:17 am #20960MarshaParticipant
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!
August 22, 2019 at 3:17 pm #20962
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.
August 23, 2019 at 12:13 pm #20973
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,
August 25, 2019 at 4:46 pm #21026NanParticipant
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!
August 25, 2019 at 6:15 pm #21027
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.
August 30, 2019 at 5:52 pm #21085NanParticipant
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.
August 31, 2019 at 5:16 am #21094
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
November 4, 2019 at 2:01 pm #21858
Bit of an update, feel better now I have taken control. Been testing myself in what I can actually do with out doing damage to my self as far a *rehab* goes. I have never actually kept my oximeter on my finger when I walk the dogs, only testing when I start to get dizzy, and then find I am down to 81/79 blood oxygen, takes a minute or two’s rest to get back up to 90. Today I put the oximeter on as soon as I started walking, went down to 83 after a minute, didn’t feel the effects until 10 minutes later, do I do this every time I move? shall be finding that out over the next few days. Have definitely decided I will NOT be going to pulmonary rehab, would be too expensive, too tiring and I feel, for me personally, dangerous, I don’t think I am being a wimp which is what some people are saying, doctors know best, at the moment I DON’T agree.
Does this happen to every one on oxygen?
I know I am getting worse fairly quickly unfortunately.
I am on 5 ltspm, that is the maximum my back pack will do. Will now see if I drop low on the house O2 machine when I just move around normally, i.e going to the bathroom or when I do something more strenuous like getting the washing out of the machine and hanging it up.
November 4, 2019 at 2:04 pm #21859
P.S I have absolutely no need for supplemental oxygen when sitting at the computer or watching TV, talking with friend etc, stay at around 95 which is good, the minute I move I have to have O2
November 5, 2019 at 7:07 pm #21878
Thank you so much for writing us about this topic and providing an update – kudos for your courage on bringing up something so important. I am attending the PFF Summit in Texas this weekend and anticipate learning a lot about mental health (ie. depression) and PF.
Glad you’re feeling a bit better now, with taking control of some things. I find this really helps me too: finding something I can do about a situation gives me back a bit of power when I need it most. Does your saturations continue to drop below 89 with exertion? While you know yourself best and can decide on pulmonary rehab, strengthening the lungs may help with this drop or give you some tools to help with this. I certainly wouldn’t call you a wimp, some people find pulmonary rehab helpful and others don’t. If you need more oxygen with the portable machine (sounds like you have a backpack) bring this up to your provider, and they should be able to accommodate you if they can.
Hope you continue to do okay, and thanks again for writing. Keep in touch!
November 6, 2019 at 3:43 am #21887
Thanks for replying. I have recently found that even when wearing oxygen the minute I move my sats drop usually to below 80. I walk my dogs every day bar weather that they will not go out in. Cannot to the slightest incline but have found places here that are flat and I walk, at a brisk pace because my two dogs are very energetic, for at least two kilometres, not much compared with the 5ks I used to do daily. For my age, 73, I am pretty fit, living alone and doing everything myself from stacking logs, I have log fires, mowing very large garden and doing the house work, the only thing I can’t do is the shower floor, now can’t bend down. Besides walking the dogs I drive to the biggest supermarket here every day and walk ALL of the aisles to get in more exercise. My back pack is on its top limit and there are no others here that go higher unfortunately. I actually tried using my exercise machine and then turning my house O2 machine up to 8ltm, still the same drop in sats , I continue as I don’t feel the effect in this drop until about 10 minutes later when my eyes go fuzzy, my knees turn to jelly and I get dizzy. I stop for a minute and my sats go back up to 93, fairly quickly. Really need to find something that will stop this drop as I only have one kidney and with the systemic scleroderma already have problems associated with this.
The pulmonary re hab is 1 and 1/2 hours away, in the capital city here (pollution) makes me ill every time I go there for consultations with pulmonologist. I do all the lung exercises I have found on line, plus have a fairly active life style, obligatory living in the sticks and mountains. Maybe I am not doing the lung exercises right, will have to look into that. I do know that it is not because I don’t exercise
Always moaning of late, sorry.
November 7, 2019 at 1:42 pm #21904
Never feel like you have a need to apologize – living with this disease is tough, and we most certainly all have our difficult days and “get it”. I’m actually on my way to Texas right now to attend the Summit and I’m looking forward to attending a session on PF and mental health. There is no way that a disease of this magnitude can’t impact our mental health negatively…
So sorry to hear that the desaturation isn’t resolving with higher 02 use. When do you see your doctor next? I’d book an appointment sooner than later, as sats lower than 89 can have an effect on your other organs so you want to avoid this whenever possible. I know, easier said than done! You’re right, something needs to be fixed to stop that drop, if at all possible. I’d call your physician’s office and ask about this as soon as possible.
Sounds like you’re doing everything you can, which is a lot with a lung condition so kudos to you. Keep up all that work, and staying active as that will help but I know it isn’t easy. Feel free to write anytime!
November 7, 2019 at 2:11 pm #21906
Hi Charlene, Great to know that you are going to the conference, hope you find it informative.
There I absolutely no way I can get an earlier appointment with the pulmonologist, next is Feb 3rd. Out here I have to work things out for myself, because I have bucked the system (professors are treated like gods out here, and I haven’t followed his advice as a good French person would do without question) and besides with Brexit it looks like I might be left with no medical cover at all and no insurance company will accept me as a patient even if I could afford the 100% medical cover it looks like England is forcing us ex pats to take, even though paid in all our working lives. I am almost certain the French will no allow me to suffocate to death by taking away my O2 but not kicking up a fuss, looking out for things I can do to help myself. ordered myself a lung trainer, see if that can help strengthen what capacity I have left.
Wish this rain would stop so can do a bit of walking, can’t get my back pack wet as the highest point has the zipper on it so of course rain would get in, what a stupid notion not to put water proof protection there like with the rest of the back pack. Walking 2 dogs and holding a brolly is not practical.
November 7, 2019 at 2:53 pm #21914
Hello Susan, it looks like you are going to have to kick up a fuss. There is no reason why you should have to go without supplemental oxygen. I am hoping there is someone near who will also be able to help you with these bureaucratic procedures. Mark
November 10, 2019 at 7:07 am #21928
Please forgive the brevity of my response, I am just about to board the plane home from Texas. The Summit was incredible, so much information. Send me a private message when you can, I may have a solution for you in terms of needing oxygen but losing insurance. I had no idea an association existed out there to help patients with this exact issue, but there is! I don’t know about it’s connection in the UK but worth a try – the woman was absolutely lovely that I spoke with.
Keep doing everything you can to strengthen your lungs – this is the best thing we can do for ourselves I’ve learnt since the Summit. Lots of good information that I look forward to organizing in the next few weeks and sharing with the forum members.
It was also such a GIFT to meet many members of the forum in person – to those who shared hugs, tears and laughter with me this weekend, THANK YOU.
November 7, 2019 at 4:12 pm #21918
Hi Mark, I am VERY good at kicking ass and the bureaucratic ponderous procedures here, but there is absolutely nothing I can do about Brexit, if there is no reciprocal agreement between UK and France (UK being the problem) there will be thousands of us, here and in Spain etc, up the creek without a paddle.
November 7, 2019 at 4:58 pm #21920
Hello Susan, what a shame you have to endure the fruits of this political mess. I would hope they could come to a resolution for the persons who have put into the system and now need the healthcare. Mark
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