Welcome & thank you.

[Debbie Prosser]

Hello Charlene

I am a very new to IPF. My Mother was diagnosed three years ago and has recently and suddenly became really quite ill.  I feel a little paralyzed as to how i can help other than practical things. (she had become very negative and grumpy) I have found it hard finding advice and information online. I hoped I might find some it here. Sorry, I don’t have a lot of experience to give back.

Debbie

[Charlene Marshall]

Hi Debbie,

Thank you so much for joining the PF forums and contributing to this discussion topic. I wish it wasn’t IPF that connects us all, however, know that you are very welcome here and we’ll do our best to help you with finding advice.

I am sorry to hear of your Mother’s diagnosis and rapid decline, was this caused by an exacerbation of some kind (which means an external factor triggered a respiratory decline, such as influenza) do you know? Sometimes if this is the case, and the factor causing the decline is reversed, then the patient can be re-stabilized. It just depends on what the factor was that caused the exacerbation. This happened to me in May of last year, and my lung function took a major plummet. I can share more details of this with you, if it would be helpful?

I can relate to your Mother’s negativity and grumpiness, although I can’t imagine how hard this is on you. Unfortunately, I experience these moments too which I mostly attribute to medications but it is very important for me to not get ‘stuck’ in these feelings. Do you think she is aware of her change in mood? Might it be medications (not that it makes it excusable, even if it is…) ?

Please share more with me (if you are comfortable) and I can do my best to help you based on my own experience of being a patient, and my relationship to my caregiver(s), especially when things become difficult. You’re always welcome here and I look forward to getting to know you more.

Sincerely,
Charlene

[Debbie Prosser]

Hello Charlene

Thank you so much for your reply.

My Mothers health has declined since October when she had the flu and pneumonia immunisation. She had a bad reaction to them and around the same time also had a course of chemotherapy to try to dampen down her immune system.  Following that she got a flu like virus that has hit her hard. Now she has to walk up the stairs one step at a time and has lost a lot of weight, finds it hard to shower and do basic chores.

My Mother is aware she is feeling depressed and is currently more or less house bound at the moment due to not being able to walk very far, lack of energy etc. Before this winter my Mother still took part in classes at her gym and let a full life. Yes, the medication she is on could be causing part of the low mood. She is currently on steroid treatment and inhalers. The chemotherapy has now finished.

It’s reassuring to know that you too plummeted after having a flu virus, but also regained your strength and breathing improved again. I have been very fearful ‘this is it’ for my Mum. Maybe I should be more positive and hopeful too?

My Mother has been referred to a transplant unit but she feels she is not mentally in the right place to consider a transplant. She is also 69 years old but was fit and healthy and has led a very healthy life.

Kindest Regards

Debbie

 

[Charlene Marshall]

Hi Debbie,

Thanks so much for your prompt reply and sharing your comments on the forum.

I am really sorry to hear of your Mom’s health decline, especially that it is in response to an immunization 🙁 Can I ask what the chemotherapy drug was being administered for, does she also have a cancer diagnosis? I ask because I was treated with a chemotherapy and steroid protocol last year (cyclophosphamide and prednisone, respectively) and it really wiped me out but seemed to help with the inflammation in my lungs. Since your Mom has become ill, has there been a noted decline in her lung function or oxygen saturations? If so, I hope her medical team is willing to work on addressing this for her, ie. steroid treatments (not that these are enjoyable, and I see she is already doing this, so maybe it warrants a change?) or increasing oxygen needs. Is she on supplemental oxygen already? Sorry if I have already asked you this and didn’t remember.

This disease is so tough not only on patients but on caregivers as well. Would your Mom be open to talking to someone about this? I find connecting with other patients who truly ‘understand’ to be so therapeutic and helpful for me. There might be a support group in your area to check out? Sometimes it can be hard to be hopeful as you say, especially when things seem to be in a constant low or decline. Please do share that I was able to recover and gain my lung strength back after an influenza virus. Maybe this will help encourage her? If there is anything else I can share of my experience with your Mom, I’d be happy to do so. Does she do any type of pulmonary rehabilitation? Not only have I found this actually helps improve my lungs, but it also gives me the confidence that I am ‘doing everything I can’ to get better. When not getting better is out of my hands, it feels terrible, so I find if I am doing something to try then I am in a better mindset, at least for me this helps.

There is so much to consider about transplant, I agree! I actually just wrote a social clip about this which can be found in the “Pre/Post Lung Transplantation” forum, if you wanted to read it.

How have the last few days been for your Mom? I’ve been thinking of her. Let me know if there is anything else you think would help! Hang in there Debbie.

Charlene