Diagnosis Day for Dad

[Wellyboot0_0]

After waiting a month from our last visit to Papworth and my last post on here we are going back tomorrow to get the diagnosis and treatment plan. We are anticipating IPF.

Since we last went we had an extra appointment with the Thoracic department at our local hospital, which had been booked in error by them. However far from the waste of time it could have been the doctor there had time to talk to us, she asked if we had any questions, and probably wished she hadnt. Since my last post Dad still isnt coping well with having an expiry date so just said he wanted to know how long he had got?! From here she explained that 3-5 years was the median expectancy but to try not to get hung up on that because there were so many variables. Just to try and make the most of every day and not just sit waiting.

My brother has bought him an electric scooter, he has been out on it but needs to gain confidence. He has started going for lunch with my mum to a local pub where they play friendly bingo. We stumbled across it by mistake and have been regulars for a few weeks just for fun.

I still go over once a week at least and tomorrow I am taking him and my mum to papworth. I have a cold, runny nose and mild cough, no aches and pains. I have bought myself surgical masks to wear and am hoping it will be a nice day so we can sit outside so I dont pass anything on. I also have anti bac hand sanitizer which I use religiously. Typical that I should get it now.

I am really concerned about spreading my germs to him or anyone else, but I really havent got an option and need to be there for them both...any advice gratefully received. Also can anyone give me an idea of what we should expect tomorrow from the hospital, what are the chances of treatment being offered and when will it start?

My dad is 74

[HungryHufflepuff]

Wishing you and your dad all the best for the appointment.

[Whitechinchilla]

Sorry. Nothing concrete to help as such. Except prayers and good wishes and blessings for you both.

[Caspiana]

Hi Wellyboot0_0 .

I was wondering how your dad is doing. You are doing right by trying to keep your germs from him. It is the prudent thing to do. I suspect your dad is undergoing a period of adjustment. It really takes time to come to terms with everything. I find I try and live everyday knowing that I may not have tomorrow rather than worry about how much time I have left. Ironically, worrying about an expiry date wastes precious time and hopefully he will realize that at some point. As for life expectancy mine was said to be between two and five. I am now at year five and still here. 😊

As for what to expect, remember that presumably, the specialist at Papworth is experienced and will guide you through his course of treatment. It will take time and adjustments. Patience🍀 is the word of the day.

Keep up with those outings with your parents, it does sound like fun. xx 🙋🐕

[Wellyboot0_0 in reply to Caspiana]

Hi Cas, thank you for your reply, sadly we got a call yesterday cancelling the appointment for today as they had no one available to do his oxygen test (or something along those lines). They have however told dad that he is going to get the medication, I think it is the Pirfenidone and he will get called in the next week or so. Although it would have been good to get it sorted I am quite relieved that hopefully my cold will be on its way out by the revised date. I would have felt awful passing my germs on to anyone. X

[santisuk]

I see* that Papworth Hospital is finally moving from Papworth Everard village to Cambridge Biomedical Campus down in the South of Cambridge City next to Addenbrookes. It will take place over the 3 weeks starting 23 April according to their website. I think I had better relay that info as a separate posting as I know a few people on the BLF site go there

So presumably you will be going to the old location and being seen at the Thoracic Outpatient Clinic in the Bernhard Baron building. When you arrive at that building the reception has its own seating/waiting area and it's only a short (30 meters?) walk from there to the Thoracic Clinic, which has a waiting area that is usually very full. If you are concerned about spreading germs you could discuss with the receptionist at the day ward and ask whether you can sit at the reception lounge and be called from there or maybe they have another suggestion or at least maybe they will assure you that it's not a problem!

*Really glad I read your post as it prompted me to look for the hospital map. Had I not done so I would not have found that they are moving imminently. I knew it was happening sometime, but they have been saying 'next year' for the 4 years I've been going there I was just about to contact my consultant's sec to fix up an appointment for my annual monitoring tests in late April early May - and I am coming all the way from Thailand for that. I might even have booked a flight first, then found I couldn't get an appointment (I'm private so I can usually get at fairly short notice). Think I'll defer a couple of months to let everything settle down!

[Wellyboot0_0 in reply to santisuk]

Hi, thank you for your reply. Yes we were due to go to the old building, we went there 6 weeks ago and they did tell us they were moving to the new site. Unfortunately we had a phone call yesterday to say our appointment had unfortunately been cancelled and now you have remimded me about the move I wonder if it is because of that? Thankfully they are rescheduling for the next week or two so by then hopefully my cold will ve a distant memory!

Im glad that my post may have saved you an expensive plane journey and think it may be wise to defer your appointment until after the move as it may be a bit chaotic for a while.

My dad is an nhs patient, but they have been so good with our appointments. My brother did offer to pay for his initial appointment so that he could 'go private' but the private date was only 3 days different so it didnt seem worth it, but Im sure for follow up appointments it gives you better flexibility. Do you live in Thailand? It looks so beautiful my friend is there at the moment visiting whilst on a cruise. Hope you are keeping well xx

[santisuk in reply to Wellyboot0_0]

Already written to my sister (lives in Cambridge and my go to address when visiting UK, hence Papworth) to say 'thinking Jun/Jul, not Apr/May'. Yes - you may well have saved me a few hundred quid flight change penalty!

Yes - I live in Thailand and it's a lovely place to retire (earlyish) to after a 30 year career in 'the City', particularly when you are living a second go round at married life, this time with my first ever child (now 9 yo) - and my Thai wife's 22 yo young cousin who we adopted 7 years ago. Lots of reasons to work hard at managing my condition so I can stay fit, active and above ground

Keep on caring - your Dad is a lucky guy. Hope he is able to manage his condition so it doesn't put too much of a strain on you.

[Piperava]

Please try not to get hung up on the 3-5yrs median expectancy as my husband was diagnosed in 2015 but prior to that was told wrongly in 2012 it was COPD so really it's been nearly 7yrs. As for meds he started taking Mycophenalate over a year ago which seems to have halted the progression. That's good he has a scooter to get out and about, my husband is in the process of going down that road.....he is on ambulatory oxygen too. Yes he must try to keep away from anyone with coughs and colds but strangely the hospital is where he usually always picks something up, worse place for germs. Hope the diagnosis isn't IPF but if it is keeping healthy and as fit as possible and also a positive outlook is the way to go.....we will not let this horrendous disease beat us. Stay strong 🙏

[Wellyboot0_0 in reply to Piperava]

Hi, thank you for your reply. Unfortunately my dad is not the most positive of people and also does love Dr Google and consultant Mr You Tube! However the doctor at our normal hospital was really good at trying to change his thinking and we are continuing to try and help him with it. Sadly our appointment for today was cancelled yesterday afternoon, but they have told him that he will get Pirefinedone so I am guessing that means he has got IPF. They are making us another appointment for the next week or so and Im sure will fill us in then. At least we know he is getting medication so although that means he has got the condition from a positive point of view it also means that he isnt too far gone for the treatment to help, they wouldnt give it to him otherwise.

Hopefully dad will see this as a positive. He is on this group, I added him, but as far as I know he is only observing. I dont think he has posted anything but hopefully he will still be getting more factual support than that from the internet doctors.

It is comforting to know that you are outside of that median and I hope you remain so for a long time. With regards to the scooter, my dad has been driving all his lfe but was nervous driving the scooter. He has only been out on it with my brother once and on his own at the service place when he picked it up...we got it mainly so that he could still go with my mum to take their dogs for a walk. Despite my cold I have still got to go to their house today so my plan is to make sure we get him out on it so that we arent couped up indoors with my germs xx

[HungryHufflepuff in reply to Wellyboot0_0]

Hello Wellyboot’s Dad!! 👋

Sorry to know the appointment was cancelled. That’s always disappointing, especially when it’s last minute.

[BrianTaylor]

Yes, as HungryHuffle said a big hello to Wellboots dad! Hope you all managed to get the dog out for a walk, and that you managed another go on the scooter! I also have IPF, not sure about much else at the moment as I have to wait to see the consultant in about 6 weeks. All the best

[Dedalus]

Good luck and best wishes for tomorrow x

[Wellyboot0_0 in reply to Dedalus]

Thank you, unfortunately appointment was cancelled but he has been given the go ahead for treatment so we will be going back next week or the week after now x

[Dedalus in reply to Wellyboot0_0]

That's not too long a wait. Again, good luck, and please keep us updated x

[Wellyboot0_0]

Thank you, will do x