Lung disease as new complication

ozymandible

I'm glad to hear from you too

I'm glad to hear from you too.  That was a long time to be too sick to come to the phone!  Sounds like you'll be up and at 'em soon!

Logan51

maybe me too

Been FT-dependent since 8/2019, and still fighting aspiration with major deep coughs in the morning getting the yellowish Jevity up. Last couple days I've had major lower-bodyaches, fatigue, and fever. Tonight, felt hot when I got up from my nap on the recliner, and thermometer read 99.8*. Typical for me, post-tx, is 97.4. Know they can do an X-ray of the lungs, and blood tests for oxyen level and elevated white blood cell count for infection. TURNS OUT THE STUFF I COUGH UP IS JUST LUNG CONGESTION WITH THE ADDITION OF ICE CUBE LIQUID THAT GETS INTO MY LUNGS.

Have a PCP appointment @ 3 tomorrow, know there will be tests, and then who knows...

Keep up the fight, Crystal. You've helped me with your story and info.

motorcycleguy

ozy,

Crystal is incredible. She's in a hospital, fighting lung infection ... but she takes the time to warn me to be careful of Covid!!

I LOVE people with an undefeatable character like that!...

Curt

motorcycleguy

ozy,

She is in a hospital, that is also an education center for young, medical professionals. I have a feeling she is an excellent "teacher" - when it comes to the whole patient/care-giver relationship!

Curt

motorcycleguy

ozy,

Thanks for the advisement on HYPO-Thyroidism. It looks like I'm currently OK - but I will potentially be dealing with that at some point.

Curt

LitlCJdoll

E. Coli Pneumonia again

This is a little complicated,  and its serious but here goes-- i was admitted with Klebsiella pneumoniae,  but now i have the Drug Resistant E. Coli pneumonia that has once again Colonized in Both my lungs.

In the hospital,  my Pulmonary team wanted another Cystic Fibrosis sputum culture, to see if the 2 antibiotics they were giving me, were working. They told me they expected the culture to grow the Klebsiella , because I would need full course of antibiotics to attempt to clear it out .  I myself knew I was not getting better. They were all hearing Crackles in both lung bases, etc. 

Anyway, my 7 doctor team came in one morning, and they were not smiling at all. They said my culture grew out E. Coli and that they now had to change antibiotics. 

 

I'm aspirating my stomach contents/ my Reflux.  I was due to have an esophageal dilation, but my doctor said no way, with the infection I was admitted for.  He said wait until my lungs are clear, ( LOL...)... But now I've been hit with another E. Coli infection.

My swallowing is treacherous, with or without my allowed liquids.  The infection is really smothering me. I'm up all hours of night, trying to clear my chest, so I can breathe and drink some water.

Before I left hospital, I had 2 IVs in right arm, and a separate.pump for each one, plus my feeding pump. Then they put in my PICC line.

They wanted to get me out of the hospital because they said if I contract an infection from the hospital, in addition to my pneumonia from aspirating--- that it would easily take me outta this world . 

My white counts are Low. So are my red blood cell counts.

So, I came home with another Double Lumen PICC 

line, with two 14 inch extension sets, through which I infuse myself with the antibiotics.

 

So, I was admitted for Klebsiella pneumoniae, ---- but now that drug resistant E. Coli I was admitted for in June, had now Re Colonized in my lungs.

I have fallen 4 times since home.  Inpatient they put a Fall Risk bracelet on me, not allowed to leave my room. The Lovenox injections in my abdomen to prevent blood clots--- they had trouble giving them to me because they couldn't pinch up enough skin to inject into. Because I'm  70 pounds. Ouch.

 

I have found a lesion growing at site of one of my previous tumors, but to H with it right now. I'm just going to watch it..... Time will tell...

 

Nov 10 I go to Pulmonary / Critical Care clinic to see my doctor . He will decide how many weeks I will have the PICC, for my IV antibiotics and also what's next. This was my 3rd hospitalization since June, and this has been a long one. I am really weak  Home Health nurse came today, and she's calling my doctor today, to reiterate how bad my lungs are, my breathing and this infection.

My swallowing is the worst its ever been.  Thus, my lungs are, as well.

Trying to get through, each day.   Gotta try harder I guess but I keep getting b hit with something else 

Stay Safe, all. ?

Crystal

 

 

 

 

ozymandible

Prayers up for you Crystal

Prayers up for you Crystal and also for your family, friends and medical team.

LitlCJdoll

I am trying

I am trying to fight. Right now in middle of a 30 minute breathing treatment, after infusing through my PICC.  Something has to work eventually, right?  Or my lungs will fail..

After a hospitalization, I usually have to followup with my long time PCP..

Not this time.... They have sent me straight back   to Pulmonary/ Critical Care. My Teaching Fellow Dr. Meier.   Anything lesser is a waste of time., they now realize.  They have to get these lungs under control. ..

. I kinda like Breathing , you know..

A whole lot went on during this admission.  I might tell you later....

Crystal..... I haven't been this fatigued since radiotherapy.  .. Because Both my lungs have pneumonia , I do not have one good one to help me. So, its a true struggle. 

 

 

motorcycleguy

Crystal,

You are fighting one heck of a fight, and we're all behind you, here!

I hope you fight some relief, soon - and also some joy in your day.

Curt

LitlCJdoll

Not responsive to Treatment

So,... I am again in bad shape and in 2 days Wednesday December 1st, I go under anesthesia again in the hospital for an Urgent Bronchoscopy.

November 4th I was released from hospital, this time weeks treated once again for Another Bilateral Pneumonia. my second admission for double pneumonia this year.

lots happened during my weeks inpatient.. They decided after a while to check a Culture to see if the original bacteria was still in my lungs. Reasonable thing to do, right?  But No, with my genetic immunodeficiency driving things ( like my cancer recurrences)-- the culture came back Positive for yet another bacterium, a different one than the one I was admitted with.

So, the Pulmonary team had to switch the meds I was getting IV.  This extended my hospital stay, even more because it was a complication .

Anyway, I was sent home yet again with a PICC line.  Before that though, they Blew Out 9 ( yes, 9) veins in my arms, trying to put a Second IV in.  They finally got the second one in, right above the first one, and both were used simultaneously. . I had 3 pumps going at once one for each IV line and then my feeding pump.  

My pole with 3 pumps on it weighed more than me, and I wasn't allowed up very much. Fall risk.

I went home with PICC line, and 3 more Weeks of same intravenous antibiotic. However, I made no progress. My lungs were  not clearing at all.

Weight 70.8 pounds... Not well. In fact, getting sicker. WTH?

 

Pulmonary scheduled a CT Chest Urgent. With contrast infusion ( they used my PICC line)

The CT results were in my Inbox by the time I got home,pthat day and at 6 pm my doctor called me. I had already read the results. Terrible news. Awful.

The CT showed that my lungs have in fact Worsened since April, before my June admission.  My Left lung especially has worsened in Every area, Upper lobe, the Lingula, and lthe ower lobe ( the base ) Right lung involved throughout as well, with No Area being clear. Unbelievable after 2 admissions being treated intensively twice for double pneumonia and I'm worse in both lungs, especially left.

Dr. Meier and my home health nurse had been telling me that they were hearing increased Crackles and Squeaks in my left lung.. That's part o why he ordered an Urgent CT. The nurse reported back to him what she saw and heard ..every week. Even the Hospital Specialty Infusion Pharmacy was in touch with my doctor, telling him to extend my IV antibiotics another week, which he did. But it made no difference .

 

By then I was becoming concerned...

Because of the bad CT, then, he said they have to go back Into both my lungs, down to the Bases and get direct specimens/ cultures/ biopsies,... Dr. Meier said, " We are missing something, Crystal. We have to go back in the lungs. Both of them. We might have to admit you again if complications..."

So anyway, this Wednesday morning I go under, again, with 2 lungs not working optimally .

 

To tell you how sick I am, Pulmonary will not allow me to get the Flu vaccine, nor will they allow my esophageal dilation.  I'm not up to having either one  they told me. 

I've been sick with double pneumonia since January/ Feb this year.. Quite exhausted, that's an understatement.

Crystal

 

wbcgaruss

Dear Crystal

This makes my heartache for you and I can certainly hope they can do something to give you some improvement
I don't know what to say exactly after reading your latest posting here.
It just seems you get a little improvement in one place and something goes wrong in another area.
And then you have things going wrong every which way.
I am glad you have the doctors you do as they are familiar with your case for many years and are certainly the best for your case.
As you know you are on my prayer list and in my prayers several times a day.??????
Sending you some distant hugs and well wishes, prayer, and support and Wishing You The Best-Take Care-God Bless-Russ

Windmill

I wondered where you had been

I wondered where you had been.? Taking it easy in bed eh. No seriously it sounds like you are going through hell but what I've read from you is that you are one tough cookie. So hang in there you will get through this, just think of the electricity etc you are saving at home ?

LitlCJdoll

Tomorrow

Hi there, 

 

Great to hear from you and I'm due in the morning for my Bronchoscopy..  This one is risky because Both lungs are in bad shape and they are going into Both lungs.  

I've had collapsed lungs before...I'm hoping that doesn't hapoen, but never can tell.

Whenever I'm able and feel like it I will be back.

Hoping that YOU, are doing okay?

? Crystal

LitlCJdoll

So, my story continues and still no relief nor resolution so today December 9th, a week after my Bronchoscopy, today I go to the ENT Clinic, to be scoped and suctioned , and whatever else they want.

Cheers

Crystall

wbcgaruss

Thanks for the update.

Prayers continue.

Take care-God Bless-Russ

Logan51

Yes, Crystal, to what Russ said.

motorcycleguy

Crystal,

This new format doesn’t seem to allow PM’s via my phone.

But, I wanted to check in and make sure you’re getting through these latest challenges!...

I hope you’re getting any help you need!

I’m thinking about you!

Curt