[Kristin]

Hello Judi:

You are I are living the exact same lives, and it would be wonderful to compare notes. My mom recently went through a ‘flare’ and is still having issues.

Would it be possible to chat with you on the phone? I’ll send you a friend request, if you accept, I’ll send along my phone number…

Kristin

[Kristin]

Robert,

Thanks for the reply.

Live in MetroWest, corner of 495 and the Pike.  If you’re ever in the area, please lmk!

Beth Israel is a great hospital.  Went there for a cardiac MRI – their tech is amazing, and doc’s spoke TO me, not DOWN to me.

MGH is a huge disappointment.  My mom’s pcp prescribed nitrofurantoin, which almost killed her, and caused her fibrosis to really kick in. It has a side effect which clearly states ‘not to be given to people with fibrosis.’ Yeah…

Her pulmonologist in Cox, can’t be bothered with us… and try to obtain the necessary paperwork for supplemental oxygen out of pulmonary… never happen without pushing the lazy workers there.

We have been blatantly lied to in emergency room about my mom’s condition – told mom’s fibrosis has gotten ‘significantly worse,’ then all of a sudden it’s ‘stable!’  (The emergency room there is an absolute circus).  I had one nice e/r nurse tell me to ‘get my mom out of there, or she will become more sick!’ Can you imagine?

Not a fan of MGH. I was… but not anymore.

I hope you have better luck there.

 

[Kristin]

Thank you both!

Lots of information… Bill, #6 – that is a huge concern of mine… if the power goes out, and I just purchased a backup generator that should cover mom’s two concentrators.  As it stands, her poc goes to 6 pulse, and that’s just not enough. She has no tanks available.

Looking for a support group in Massachusetts on the Internet… if anyone knows of a good one, kindly let me know?

And thanks for the suggestions from rehab!

Hi Karen…

Mom is currently using a Y connector with two 7′ green tubes (Salter 1227-7-7), a green 25′ extension, and a clear nasal cannula… QUESTION: is the clear nasal cannula restricting oxygen flow?  If it is, mom might not need to run two concentrators.  Would you happen to know the make and model number of your cannula?  I’m just going to order it… it would take an eternity on the phone fighting to get mom a cannula from her oxygen provider. I’m going to send you a message with my phone number… please feel free to call me anytime.  I’d love to compare notes with you!

[Kristin]

Hello everyone!

A few more oxygen questions for you all, as our pulmonologist is just dreadful.  Never responds to any of my questions!  And he practices at the second best hospital in the country (?) Just dreadful!

Nasal cannulas… I’ve been reading that basic nasal cannulas aren’t meant for a flow rate above 5 or 6 lpm (?)  Then what are you all using at a flow rate above 6?

Using a Y connector… Have any of you used a Y connector to connect two concentrators?  If so, does the flow rate have to be set the same on both machines? Such as 6 lpm on one, and 6 lpm on the other?  Anything else I should know about this?

What does an exacerbation/’flare up’ entail, and how long have they lasted for you?

Mom is having a ‘flare up’ as our pulmonolgist calls it, and told us to stay at home, do not come to Boston/MGH ER because of Covid.  So, we’re trying to sort through this ourselves, and it’s scary!  Is there anything I should be doing to mitigate the flare up?  Mom is just requiring a crazy amount of oxygen… no coughing at all, nothing unusual other than the low oxygen… she is not on any medication other than an antibiotic for a possible lung infection I assume (?) Why would he put her on an antibiotic?  Again, he is really not a conversationalist, so when I ask him anything, he treats me like an imbecile, and tells me he knows what he is doing… can you imagine?

Thanks to all of you for your responses in advance!

Love (!)

Kristin

[Kristin]

Thanks, Charlene.

Caring for a 93 year old, I simply don’t have time to search through every thread.

And thanks for the response.  The reason why I ask about Metformin, is because my mom was prescribed Nitrofurantoin in December of 2016, and I’m sure you know what happened.  She was in MGH for 5 days with pneumonia.  I was livid.  Now, I try to ask questions about what could happen before she takes ANY new meds.  Physicians seem to prescribe meds like giving out candy on Halloween, and they don’t check for any pre-existing conditions which could essentially, kill you. You have to be your own doctor, and this was the second best hospital in the country, and her pcp attended Harvard Medical School.  Absolutely shocking to me.

Again, thank you for your kindness, and I do hope you are feeling better.

K

 

 

 

[Kristin]

Hi Jaime – thank you for responding.  Mom is on a low dose, only 250mg.  It seems that she has good days, and bad days with her fibrosis.  It’s like some days she requires more oxygen, and some days not so much.  Her pulmonologist uses the term “flare up.” Wondering if anyone else has had this happen?  I would definitely say that your IPF has been very good to you.  🙂  Again, thanks, and best wishes always!

[Kristin]

Thanks, Ken.  I’ve been reading about studies online stating that Metformin somehow lessens symptoms/reverses ILD.  While I’m very skeptical based upon all the reading I’ve done that this disease is irreversible, it was giving me some hope to cling to.

Virginia: I haven’t been able to discuss the validity of any of these studies with my mom’s pulmonologist in Boston, (he’s always so busy), you might want to bring it up with yours when you meet next.  Good luck!

[Kristin]

@casey

Hello Karen:

Thank you so much for the suggestions with regard to dressing my mom, while she is wearing her oxygen.  It is a learning experience for us both.  I try to allow her to dress herself to give hear some sense of independence.  I like to do things myself, and my mom feels the same.  I rigged up a hook in the bathroom that constantly holds the cannula cord for her, as I don’t want the nose piece ever touching the floor. So far so good.  This isn’t easy, and I worry for our future, as this disease follows its’ own timetable.  I hate it.  We are starting pulmonary therapy, but with the snow here, I’m going to ask for exercises for mom and I to do at home, as I don’t think we’ll be attending much.  I’m keeping her oxygen level at 3L now, as she seems to be doing well, and not out of breath as much.  The poc vs. the tanks seems to be a toss-up.  If I don’t plug in the poc, it doesn’t last very long at 3L.  I am happy that I’m not filling tanks anymore though.  With regard to her cardiology appointment, mom’s lungs are pushing blood back into her heart, causing it to work harder.  I’m just so upset with all of this.  Her heart rate has stabilized with the metoprolol 50mg 2x, thank goodness.  We are managing, struggling, and learning.  I lost my dad on September 30th, and I feel that my life is a nightmare that I can’t wake from.  Thank you all for your kind words of support… if anyone is in the Boston, Massachusetts area, please feel free to message me.  I’d love to chat locally with someone who is living this life as well to compare notes.  Thanksgiving blessings to you all. ~ Kristin

[Kristin]

Thank you to everyone for the suggestions. 🙂 I’m so happy that I found you all! It’s so hard going through this alone! We have an appointment with MGH Cardiology tomorrow. It’s tough because the symptoms of heart failure mimic those of the ild/fibrosis, and mom has RVSP/elevated RA pressure, from her echo of a few weeks ago.  With regard to oxygen – we just received our Inogen at Home concentrator and an Inogen poc, after a long paperwork battle with medicare, Inogen, and our pulmonologist office. They are both so very quiet, and cannot be heard throughout the house, unlike the Invacare we had. Could someone please tell me why tanks still exist, when there are poc’s? I just don’t understand that. We were also prescribed nasal spray, Atrovent, for the post nasal drip, and we are starting pulmonary rehab/therapy in two weeks. I’ll let you all know if either help! Again thank you all! <3 ~ Kristin