My husband had his latest lung wash on Friday, May, 8 2015. He went back for surgery at about 8:15 or so and was finished by 2pm! Previous surgeries times were running about 8 hours each. This wash was conducted on the left lung for the first time.
When the doctors and RN's listened to his lungs he was told they didn't hear any wheezing.
We left Houston and came back home on May 11th. His O2 levels this morning were much higher than they had ever been. Where before he was reading 85-90 with a resting heart rate at over 110 - never below, this morning after getting up to go to the restroom - his O2 read 95 and his heart rate at 93!
This is so much of an improvement - he has a follow up with his doctor's in two weeks and we are hoping and praying his numbers stay great!
Tuesday, May 12, 2015
Saturday, December 13, 2014
Small Worlds
Ok ok, I get that I haven't update here as much as I would like. However, something very unique happened to us the other day. A co-worker of my husband's called him and mentioned that someone called his old place of employment looking for him.
This was a lady stating that her husband had also been diagnosed with Pulmonary Alveolar Protienosis. Anyway, she left her number and I recently contacted her. I can't even begin to tell you the relief this gave me. I mean, just to know that someone else out there understands what I'm going through is amazing. I definitely don't wish this disease on anyone...but still.
Anyway, we talked and even though the disease is the same...the circumstances between the two cases are so different.
We do plan on keeping in contact and I wish I could share more of the details, but out of respect for their situation and privacy I decided to keep it close to my heart.
MM
This was a lady stating that her husband had also been diagnosed with Pulmonary Alveolar Protienosis. Anyway, she left her number and I recently contacted her. I can't even begin to tell you the relief this gave me. I mean, just to know that someone else out there understands what I'm going through is amazing. I definitely don't wish this disease on anyone...but still.
Anyway, we talked and even though the disease is the same...the circumstances between the two cases are so different.
We do plan on keeping in contact and I wish I could share more of the details, but out of respect for their situation and privacy I decided to keep it close to my heart.
MM
Tuesday, July 8, 2014
First Things First
You know, I have thought about starting some sort of blog on
behalf of my husband and everything he and I have been going through with this
little rare disease. He's been struggling with this for YEARS. It wasn't until
recently that he was diagnosed - and yes while a diagnosis is great, we still
don't really know much about the disease. It has really been weighing on my
heart to do this; one - because
there may be someone else out there struggling like we have for years with no
answers and maybe, just maybe they will happen upon this blog and not feel so
alone. Two - because it would help
me cope and process the insanity that comes with sitting in a hospital room for
weeks on end.
Of course, all this being said - I had to talk it over with Larry as he is a BIG part of this discussion and I would never want to say something or do something that would make him feel uncomfortable. We are a team, always have been and always will be.
So, if I've posted this - he has given the go ahead. YAY!
Some first things first - I don't really know who will be reading this (aside from those of you who have said you would) - but as Larry and I are both strong in our faith, this blog will sometimes have religious connotations. If you're offended by this - then maybe you should find another blog to read. My life and our beliefs are very deep and usually private (aside for those that know us) but again, I feel like I may help someone find some kind of information for what has and hasn't worked for us as far as this disease goes.
I, 100% think God is behind EVERYTHING that has happened recently good or bad and that only He knows the purpose behind what's going on.
I'm pretty sure at times the posts being made will get emotional - sitting in a hospital room while waiting for your skilled team of doctor's to decide your husband is safe to come off of the ventilator can make you feel things you normally wouldn't.
Being that I've started this blog well after a diagnosis - I will more than likely start at the beginning or try and sum it all up to catch everyone up.
However, it is late now and before I end this post, I want to thank EVERYONE who has donated or shared the GOFUNDME page. We started it today - and Larry and I are both in shock with how many shares and donations the page has received. Me, I just want to cry - in fact I'm tearing up now. It just amazes me how much - ugh see this is where I knew I would be bad with my words. It amazes me how much people care. Just, thank you so much. All the prayers, well wishes, shares and donations are so appreciated. This man - he's my life and means the world to me and in turn it means so much to me that we mean a lot to you guys and gals.
Of course, all this being said - I had to talk it over with Larry as he is a BIG part of this discussion and I would never want to say something or do something that would make him feel uncomfortable. We are a team, always have been and always will be.
So, if I've posted this - he has given the go ahead. YAY!
Some first things first - I don't really know who will be reading this (aside from those of you who have said you would) - but as Larry and I are both strong in our faith, this blog will sometimes have religious connotations. If you're offended by this - then maybe you should find another blog to read. My life and our beliefs are very deep and usually private (aside for those that know us) but again, I feel like I may help someone find some kind of information for what has and hasn't worked for us as far as this disease goes.
I, 100% think God is behind EVERYTHING that has happened recently good or bad and that only He knows the purpose behind what's going on.
I'm pretty sure at times the posts being made will get emotional - sitting in a hospital room while waiting for your skilled team of doctor's to decide your husband is safe to come off of the ventilator can make you feel things you normally wouldn't.
Being that I've started this blog well after a diagnosis - I will more than likely start at the beginning or try and sum it all up to catch everyone up.
However, it is late now and before I end this post, I want to thank EVERYONE who has donated or shared the GOFUNDME page. We started it today - and Larry and I are both in shock with how many shares and donations the page has received. Me, I just want to cry - in fact I'm tearing up now. It just amazes me how much - ugh see this is where I knew I would be bad with my words. It amazes me how much people care. Just, thank you so much. All the prayers, well wishes, shares and donations are so appreciated. This man - he's my life and means the world to me and in turn it means so much to me that we mean a lot to you guys and gals.
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