wbcgaruss said:

Dear Crystal

You have certainly been through your own trials and troubles galore. My heart goes out to you. We are all here but we didn't want to be. But cancer visited us and life has not been exactly the same. For you, though Crystal it has not just visited you it has plagued you. And now side effects and other things are affecting you. All I can say you are one strong gal mentally and physically and I admire you. Of course, I wish I could have a solution and solve your problem but I don't have it. I will continue doing the thing I can do and that is praying for you. you have been on my prayer list for a long time. Crystal I hope the docs can come up with some solutions to make your life a little easier, no wait, a lot easier. So in the meantime Crystal, I am Wishing You The Best and if you ever want to or need to feel free to private message me anytime-Take Care-God Bless-Russ

Okay, here is the second report to come in from my Bronchoscopy on Thursday. Well, the third report...The first one showed I have no Viral problem in my lungs. No Adenovirus. No SARS. No Corona ( there are 4 types they test for) etc. Long list of viruses, I have none. But when they removed the Saline Wash ( Lavage), it contained Red Blood cells, WBCs,.. Fluid Segs, Neutrophils, macrophages.  So, infection and ongoing damage.  And this report below came in today, Sunday, to me.::  So, I have nasty E. Coli pneumonia once again.  Gross. 

We are awaiting many more tests, so more things might show up as well. And today I've dropped another 1/2 pound, I am down to 70.3 pounds. Not good.

 

CYSTIC FIBROSIS SPUTUM CULTURE - Details

motorcycleguy said:

Crystal,

I am very sorry to hear about your struggles. That has to be tough.

I don't know a lot about E-coli. Does this mean antibiotics, as a treatment?

I can remember how scary it was, when I lost 45 pounds, so I can relate just a little bit to that. I really hope you're able to turn the corner on that challenge!

I hope life takes a good turn for you very soon - it sounds like you deserve it!

MG

Hi motorcycleguy,

Thank you for the kind message!  One f my Pulmonary doctors e-mailed me at 1 am last night, as he was working in the ICU.  He is trying to decide whether to admit me for intravenous antibiotics, etc, .... Or give me antibiotics at home to put through my G tube. He's leaning toward admitting me because I need nutritional support and consult. I have Cachexia already, but recently started losing even more weight. Likely due to breathing problems..  I'm supposed to see my Liver doctor Thursday but we will see, depending on where I am on Thursday!!

I will get through it somehow.   I do not have a caregiver so I do get very fatigued.  And I live in a condo with lots of stairs.  That keeps me in shape though !! LOL!

This cancer just causes so many other problems to occur. Mine is Stage III Recurrent, and I had tumors come back less than a year after Radiation. At that point I literally Begged y R O for more Radiation to mop up after 2 surgeries. He said He!! No,.  He said it would rupture my Carotid Artery and I would have a Bleed out.  

But its like a Domino effect in that the cancer and its treatments, in advanced stages, cause so many other issues..  I'm not at 5 years yet, and have already had 5 recurrences and other serious crap going on.

Oh well, I will keep going regardless !

Stay safe , MG

motorcycleguy said:

Crystal,

I can't imagine the challenges you're having. I seem to sense that underneath your situation, that you're a hardy person, who has the spirit to get through it.

My own issues seemed easy in comparison, but after losing 45 pounds, I can still remember how happy I was when the weight drop finally stopped.

I hope you find the support you need, to help you along your path. I recall how happy people were to give me assistance (like a ride, when I needed it) - or the people on here, just to listen and offer up encouragement.

I'll be looking forward to the day you tell us all, that you've turned it around, and gotten the lung issues resolved ... and started to put on weight again.

MG

Hi again!

Yeah, I am a strong female but I need big time help right now to combat the pneumonia and Bronchiectasis .  I use a Nebulizer now, twice daily with Albuterol for the lungs. My G I doctor just e,-mailed and told me to up the rate on my feeding pump.

I just went out on my back deck and I don't see any Vultures circling the house yet, so I guess I'm okay for right now LOL !!

I keep a suitcase packed with all my nice night clothes, for when I go in the hospital and I live just 3.1 miles away .... So, its no problem if they admit me for this pneumonia. i will get a ride from someone....I just want to get started !! I'm ready .

So glad you turned the corner and are doing okay now?

I will check later perhaps with an update.  Thanks again, great to get your messages!

Crystal 

motorcycleguy said:

Crystal,

Lol - vultures... Well, you definitely display an industrial strength sense of humor - which is a priceless commodity!

I am doing fine so far, nearing 2 years out of treatment, and so far my tests have been good. I have a bit of neuropathy in my forearms, hands and feet, which is probably the worst effect I'm still dealing with.

From what I can tell, you're ready to fight - and I'm really looking forward to hearing about it!

Thanks for sharing,

MG (aka Curt)

Hello Curt,

Feel free to private message me if you like. Please notice that I just posted about losing my Beau , Randal, this morning from our same cancer Stage IV.  ( I am stage III Recurrent).  He may have been on this forum at one time years ago but I font know for sure.

I will update you on me, soon. Tonight I'm not functioning too well..

Crystal

Hi Russ,

Right now, I'm taking an antibiotic pc at home, if n suspension form for my G tube. 

What happened in my case is, my symptoms got progressively Worse over several Months time. And remember, I have a genetic ( Primary) Immunodeficiency. I was born with it .  So, infections take hold easily with me. Cancers too...

Anyway,, I didn't get a clinic visit but my Immunologist called in Levaquin for me ( same class of antibiotics as Ciprofloxacin). So, I took it for 7 days and had No Change.  My symptoms were bsd---- Shortness of breath at times. Couhhing from my chest and so much phlegm having to get out of bed to try and clear it do I could Breathe. Night sweats, ... Weight loss ( down to 70 pounds. Still there!! Its not budging) Very fatigued. Foul odor coming up from my Airway. Wheezing at times ( a whistling noise)I

So anyway, after I finished the Levaquin, and was no better, my doctor then ordered CT Chest without contrast .  LOL! It came back Very Abnormal. Its actually worse looking than someone with COVID..

It showed Bronchiectasis ( permanent damage, irreversible).

So, Pulmonary decided to definitely do a Broncos copy with BAL lung washing.

All my tests aren't back yet. Some  take6 weeks total.

Well, the E. Coli infection cultured out first. They tested it and discovered that this E. Coli variety I have has become resistant to Levaquin and Ciprofloxacin . Those will not work anymore, against my E. Coli. Antibiotic resistant.

So, they found which ones will work and I'm on one now. However they told me to keep my bags packed because they still might admit me anyway.

I live only 3 miles away, so no problem. 

When Pulmonary listened to my lungs in clinic, before my hospital procedure , he Heard that it had already Progressed from the Middle lobe, where it showed on the CT the week before, to the Upper Lobe as well, in just a week. He wrote in his noted , and told me that day that it was progressing quickly.

Thus, the Broncos copy was scheduled really quick.!!

Russ, I gotta do a breathing treatment right now, with the Nebulizer ...

I am trying to keep going, through the profound grief and damp cold Fog I'm under after the loss of Randal. His daughter found some photos she wants me to have and she's sending them to me.

We never know what's next or when. And there is no way to be ready for it. 

I cry a lot... I swear I felt his hand on my shoulder, this morning...

Crystal

wbcgaruss said:

Dear Crystal

I am at a loss for words but I will try. You already had a load on you with your situation but then to suffer the loss of Randall has to be devastating. All I can say is you have to go on and try to do your best I am sure he would want you to continue the fight. But your fight unfortunately seems to just keep going and traversing into the next thing on top of what you are already dealing with. It would be nice to get things resolved and be free of this for a while. I can sort of relate to your situation a bit but without the loss of my loved one of course. My thing in Sept. of 2019 turned into a series of mishaps and complications I thought I would never get through but I did and I am hoping and praying for you for the same thing to get recovered from all these things and be able to breathe and relax for a bit. Crystal I hope you can hang in there through the heaviness of it all and I hope your new antibiotic works and your lungs clear up. Crystal take it a day at a time and cry when you need to, anybody in your situation would be crying some, man or woman, and I will still be praying for you each day. I still say you are one amazing woman and person to persevere through all the troubles you have experienced and like it is said you can't keep a good woman down. I hope I have helped a little in some way but if not and you can tell me more specifically how PM me and thanks for your personable message-Wishing You The Best-Take Care-God Bless-Russ

Dear Russ,

My gosh, you have Always been there for me. Oh yes, back in 2019, when my cancer came back as a New Primary, less than a year after Radiotherapy, you were So Great to talk with and share with.

Hey, I KNOW that listening/ reading this stuff day in and day out is Tedious at best.  I told Randal from the beginning, that I wasn't going anywhere ... 

Russ, HNSCC was his Second Stage IV cancer ...!! The first one was in 2012, his Stage IV CLL Leukemia.

Well, that Leukemia and the Chemotherapy to put it in remission is what compromised his immune system and set him up for This devil --- HNSCC.  He fought LITERALLY nonstop, from 2012, until May 18 Tuesday last week.  

Think about all I've heard and seen.....

Russ, you are a dedicated and very gifted and patient man, to give all your support here.  I hope that we all can gain from each other and help those unfortunately new to the fight.

I think you Rock!!  ???

Crystal 

Here is part of my update:: I was admitted tonight through the Emergency Dept, and I'm in the Cancer Center hospital, 7th floor, with E. Coli bacterial pneumonia in both lungs. The right lung is worst, in middle and lower lobe. Left lung is lower lobe.

My weight tonight is 70.6. My temp over 100. My oxygen is all over the place....

A pulmonary tech came in at 1:30 am to do a breathing treatment..

I'm exhausted.

Signing off for now.

Crystal