The nurse came back to me this morning and apologised for not having any contact with me since May , she has had a lot of time off for family reasons, which re- enforced my thinking that I have been pretty much left to manage on my own . Anyway to get to the point , she said nose bleeds are normal, she suggested getting a water based cream from the chemist , not anything with petroleum which I knew anyway. She then said about leaving the canular off for a little bit , which I was amazed at , as there is no way I can do that right now, and I realised that she was giving me general information and not specific advice for me. In the past I have followed her advice/ instructions to the letter, but not anymore , and I try to get my husband to be present on her visits, because the advice can be wildly variable and at least I have back up. Don’t get me wrong , she is lovely and was fantastic in getting my rescue pack sorted and got me into hospital when I needed it, but other times , she has said I will phone you in July and then it’s December when she gets round to it , or recently last visit/ call May now coming next week (September) as I have been put on oxygen 24-7 and just left to manage on my own, with the instruction 1lt at rest , 6 for on the move , everything else I have worked out for myself, showering etc. She said in May forget about the walks now , but asked me this morning if I was still exercising,? ( good job I am ! ) I know they are very stretched, and have had the challenges of COVID , and I know it has not helped that I am under the Brompton and not my local hospital , so information does not get passed on and invariably I have to chase things up , like making sure blood test results and X-ray are passed on , had a stay in hospital in May but absolutely no follow up with a consultant as to my progress since then I think one thinks the other one is doing it. Sorry for the long post , have gone off track slightly , anyway the sun is shining so here’s to another good day !!
Is this Normal- update : The nurse came... - Lung Conditions C...
Is this Normal- update
Yes loss of information sometimes does happen, but as many have said in the past, you must be vigilant about your health AND your information. I know from experience that my GP is often left out of the loop and that conflicting opinions on my Emphysema Bronchiectasis crop up all the time.. as people say, we just have to live with it. Wich is what one consultant said to me .... Funny Fella!
😂
Like you i am under the Bromppton, but because of covid my local hospital have also been looking after me eg lung function and appointments to see consultant. As you say communication has to be you getting involved. The Brompton CNS has been great and answers any question either by text or email the same day. I had blood test at gp last week and i will have to speak to go secretary to get her to email them to the Brompton and if any of the wbc or iron results come back iffy i have to get them sent to the Haematologist im under at local hospital. I now have to tell my gp exactly what to id like him to do as he is not up to date with my illnesses, my usual gp left. Get control for yourself, its the only way
Thanks Suzie , yes that’s what I am doing , it’s constant, checking , chasing and correcting ! Looks like it’s standard. Also have a new GP who is very young and told me my illness was too complicated in relation to other stuff and referred me to a consultant, who I have a suspicion doesn’t think I should been there as the appointment has been cancelled several times. It goes on !!! Enjoy the Sunshine if you have it. X🌷
My young gp who first diagnosed IPF who new every little thing about me left. I was devastated by it. It was her choice but split from her partner and went back to near her mother in Herefordshire. Her new patients will be very fortunate. She did my blood tests, got them sent to whoever herself, delivered medicines to me in lockdown. Phoned me regularly to check how I was. Just amazing. Now I'm back to normal with nothing like everyone else. Still I had 2 years with her.
I can't enjoy the sun now as on Esbriet and have cover up, hat, total sunblock to go outside, but at least they dont upset me as much as Ofev.
Take care x
Oh goodness ! Yes I remember now , glad that Esbriet works for you . Well it looks like us Brompton folk are all in the same boat !! That GP was a very special breed and just shows us what’s possible!!!Take care, keep well and thanks for replying. x🌷
Same to you, take care x🌻
Hi Bb
I wonder if you requested an oxygen nose / mouth mask in addition to the cannula that you could switch too when able to give you some relief from the continual cannula use. Every little helps.
Yes its another wonderful day, Enjoy 
Thanks , i am claustrophobic so would be a bit hesitant about that , but could mention it and maybe give it a go . Thanks again.👍🌷
All this sounds horribly familiar and similar to my husband's experience before he got his lung transplant. Half his treatment from one hospital and emergency admission to another. As for the nosebleeds my husband had some nosebleeds but it was coming from his nasal passages which were inflamed and dry to the point of bleeding. He used KY jelly which is water based. He applied it with cotton buds. He actually got more help from the palliative community care team which our local hospital referred him to. This included a 2 week stay at a hospice who helped him in lots of ways as well as giving me a little break from caring for him. He coped a lot better when he came home after that stay. You must be finding things very hard.
Thanks Biofreak , that’s very helpful, and it would appear that my experience is standard. I have a Consultant appointment at the end of the month with the Brompton, so will see where that takes me , will have questions at the ready. I was also being considered for transplant last year , but got taken off the list , due to age and weight, and since then it feels like they have given up on me. My appointment in March was very odd , it was a telephone appointment, and they speak to you in that gentle voice and it was over in 5mins , I asked a couple of questions, but that was it. How long ago was your husband’s transplant? Hope all is well . Thanks for replying. Enjoy the Sunshine if you have it! . 🌷
He had his transplant on 29/6. Things have been up and down since and he is currently back in hospital with pneumonia they think. Thing were going very well and he had started Pulmonary Rehabilitation, then out of the blue.....wham. He has done everything he was told but many have said these things can happen after transplant and it's not straightforward. He improving and hopefully all will be well. I hope you get the care and attention you need and deserve xx
Wow ! Firstly well done to him , even though you have come out the other side it’s not without its challenges, and I hope he starts to improve asap . Good luck with the road ahead and wish you both more good days than not . X 🌷
Thanks Beachballs. Good wishes appreciated. My husband also had the protein drinks because he found it difficult to eat and no appetite. He had lost a lot of weight and it was the only way to make sure he was getting the vitamins and proteins he needed. I wish you well xx
So much juggling to do Beachballs. Not always easy to keep up with it all. I hope the nurse and everyone else do their best for you without any conflicting information. Xxx
Thanks ! Yes I hope so too , I am so tired these days as I eat very little, my husband has just gone to the Chemist to get some protein drinks , to see if that will give me some energy!! Fingers crossed and thanks again. X🌷
Thinking of you and keeping everything crossed. Xxx🌹
I hope u enjoy the drinks and feel a bit better x
Thats what this illness causes complete exhaustion. Hope the protein drinks help. The Ofev made my appetite go, but Esbriet has brought my appetite back thank goodness x
I'm sorry that this was the result of your contact with your nurse. I hope that you make some progress with your problems soon. Life can be hard enough without all that hassle. Best wishes.
Thank you ! 🌷
Hi Beachballs as your nurse suggested you leave the cannula out for a while presumably to give your nostrils a rest. Could you try using a biflo mask for a while it’s a little mask that fits over your nose, this is what I mainly use as cannulas irritate my nostrils. My oxygen company supply these for me. Barbs x
Hi barbs47
Thanks for your response, I am claustrophobic, so a bit hesitant about that , however, will give it some thought and at least it could be an option. It’s good to know that you can get them from the oxygen company. Have the cream now, so am giving that a go.
Take care and thanks again. x🌷
Hi Beachball this is a bi-flow mask it is like a small cup which sits under your nose. I also suffer from claustrophobia and don’t have a problem using them. Hope this help you Barbs x
Thanks , will certainly have a look at this . Thanks again x🌷
Your welcome I wasn’t sure if you knew what a bi-flow mask was Barbs x
Another update pneumonia.
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