Lung disease as new complication
Comments
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Hello Crystal. I'm praying
Hello Crystal. I'm praying for you too. I hope things change for the better and very soon. You've been through a lot.
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Crystal,
I hope things turn around for the good with the PICC line installed.
I appreciate the messages and the updates - and I know everyone on here is pulling for you!!
Curt
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Persistent bacterial Pneumonia
So, I am having trouble. My Pulmonary / critical care team now tells me that I needed at least 3 weeks on It intravenous antibiotics. I got just 16 days.......
Tomorrow I talk to Dr. Meier on the phone ( he is the Teaching Fellow) because he left me a message saying they are discussing the options for me next.
I have Chest pain, primarily with my Nebulizer breathing treatments and the big issue is that I am still coughing up infected phlegm. Oh yeah, its still Infected .
My pneumoniae , as i related earlier, resides in right middle & upper lobes and in Both lung Bases. Double whammy Bilateral pneumonia. 6 days in hospital then 11 days of IV antibiotic at home through a PICC line. These lung Bases are difficult to clear, apparently... At my 2 week followup appt, my general internist doctor heard it, I'm n both lungs and he called my Pulmonary team that day. That was June 23rd, and I'm still in the thick of it all. They took out my PICC line too early.
I need to expound on an important issue that's in the background of my cancer, my infections, ...and which makes everything else massively more complex for me. Here it is --------- I was born ( 1964) with a Primary Immunodeficiency disease. Its 100% genetic. Like the color of my hair and eyes, I was born with it.
I'm began getting sick when weaned from my mothers breast milk,as a baby. I was constantly sick....did not grow well ( very tiny). In the 1960s, they didn't know much about these blood diseases, but by 9 years old I was finally diagnosed by a very astute Hematologist ( Pediatric) One tell tell sign was when I got childhood vaccines, some of which are Live viruses----- MMR vaccines, for instance. It actually gave me Mumps and Measles from the vaccine. Uh oh, something is wrong here! But they could not figure it out yet. It took that Hematologist to finally see it and order the right tests.
I have travelled all over the nation and been studied all over :: All Children's Hospital St. Petersburg Florida. University of Alabama Med School - Birmingham. Cleveland Clinic Foundation Ohio. Duke university ( multiple times)-- St. Joseph's children's hospital...
They found on which Chromosomes it resides, in me. They traced the family tree and found early cancer deaths on my mothers side which are suspect but we've no proof.. The 2 cancers usually implicated in my immunodeficiency are Lymphoma and Gastric cancer. No idea why I got hit with this SqCC HN.
So, what is the Treatment I receive for my Primary immunodeficiency?? Well, Every 28 Days, I am admitted to the hospital to receive an infusion, which lasts all day. I receive IVIG, or Intravenous Immunoglobulin. EVERY 28 Days. And I've been doing this over 30 years now.
Its very Flawed, in that it helps only a small part of what my body does not make. IVIG is just IgG antibody, that's all it is. From a donor base of about 10,000 people. Its pooled plasma. But it does not replace the other antibodies to do not make, nor does it give me the T cells and Lymphocytes, which I am lacking.. It gives me just one component. Very limited...
Thus...... Its very a partial treatment and I'm left wide open to Cancers, Infection , etc.. Cancer in me can have a free for all because my immune system #1 doesn't recognize it and #2. It won't knock it out.
COVID vaccine--- what about those, for me? Well, I got both the Pfizer vaccines, however my doctors quickly told me I am Not protected because I do not produce, At All, the key antibodies needed to produce immunity. Nope, nada, None.
Thus, I have to protect many self, forever.
Does this make me paranoid? No. I have lived 55 years with this immunodeficiency. Eventually my time will be up and its usually from Respiratory Failure ( which is why they are very worried right now, with this double pneumonia)--- but I do not " hide". I just live my life and take needed precautions.
Does anyone remember the Television movie, about David, the boy who lived in a Plastic Bubble? The movie is old but it depicted a real kid, whom had the most severe of these genetic Primary Immunodeficiencies. David was his real name and I know his mother Carol. I sat next to her, when I spoke at one of our conferences 1995. David died very soon after they took him out of his bubble. He had No immune system. Very very rare. Nowadays, that disorder is screened at birth, and the kids get Bone Marrow Transplants.. They can lived into their 30s.
Sorry to write this novellette but now you know a little more, of what I'm up against. I'm having to fight the foes of Cancer and infections and fungi and viruses, with a very incomplete immune system.
"Whatever Doesn't Kill You, Will Try Again !"
??
Crystal
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Praying for you Crystal.
Praying for you Crystal.
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Back in the hospital tonight
Hello all,
I cannot see too well to type, -- and am so exhausted, but wanted to write that I am back in the hospital after my esophageal dilation this morning. I had bleeding they want to watch plus I needed Oxygen support so here I am.
I hope to be outta here by Sunday. ??
I have a Pulmonary Function Test on Wednesday, and my G I doctor today called my Pulmonary doctor to move up my next Bronchoscopy .. My weight remains Low at 70- 71 pounds. I am super thin.
As far as drinking liquids for Comfort measures, versus making me go completely NPO --- The Anesthesiologist this morning told me, before taking me back to surgery suite, that I would still aspirate even if I was completely NPO. She said I will ( and am) aspirate my saliva.... And my stomach contents , as evidenced by this E. Coli pneumonia, which I fought in June, and I'm still not clear of. ( Double lung pneumonia)
Anyway, ....Drats !!! Here I am again.
Crystal
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Well Crystal, Dagnabbitt
Of all the darn luck.
I know how you feel we all would rather be home.
Crystal, they want to take good care of ya-better safe than sorry.
But at least it's a short stay and you might as well enjoy the accommodations while you can.
Tomorrow's Friday already where'd the week go?
Boy, that went quick and that's how fast you'll be outta there before ya know it.
So as usual Crystal, I am thinkin of ya and you are in my prayers and on my list.Hugs from afar-Take Care-God Bless-Russ❤️️????
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Oh wow, thank you!wbcgaruss said:Well Crystal, Dagnabbitt
Of all the darn luck.
I know how you feel we all would rather be home.
Crystal, they want to take good care of ya-better safe than sorry.
But at least it's a short stay and you might as well enjoy the accommodations while you can.
Tomorrow's Friday already where'd the week go?
Boy, that went quick and that's how fast you'll be outta there before ya know it.
So as usual Crystal, I am thinkin of ya and you are in my prayers and on my list.Hugs from afar-Take Care-God Bless-Russ❤️️????
Thank you dear Russ.
Or I should call you Star Man, ...because you are like a rare Shooting Star across the night sky, giving everyone a Bright Light to follow. ✨???
Hmm, maybe that's pouring it on too heavy? No, I don't think so because in spite of your own deep burdens, you continue to reach out to others needing help. You keep giving of yourself.
I know you are fatigued, everyday as many of us are. But what you have figured out is that it can sometimes lift our own burden a bit, by us doing something for someone else. Like the baking I do..
. OH!! One of the nurses I had first thing this morning was Wearing the Ribbon Charm for head & neck cancer, on a silver chain. I gave her that Charm early this year and she wore it today, thanking me for it and for bringing attention.
Russ, I like the Choose Hope website, and over 4 years I've bought Tons of head/neck cancer jewelry, stickers, key chains,.Pins.... And I give boxes of it to the Head/ Neck surgery dept., to give out to patients.
I also keep various pins, key chains and other pieces in my purse, to give out to someone who helps me, etc. And people will Remember that its for head & neck cancer.
Thank you, Russ. I am very sore, swallow pain through the roof... Etc. So I am done for tonight. Hoping they let me sleep some, but you know how that is.
Crystal
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Boy I Sure Do
Know how that is-good luck on sleeping in the hospital.
You won't sleep through a night in there they are always checking something every 2-4 hours it seems.
During my last stint in the hospital, I forget the reason I was getting Xrays every day probably for about a week but I think it was because I was getting fluid in my lungs but every morning a guy would come around with a mobile machine and take a chest Xray around 4:00 AM and if I was half awake I could hear this thing wheelin up the hallway.
I never heard of the Choose Hope website but will check it out that sounds like a great idea.
Wow, you have all the good ideas, what a thinker.
Huh, well whaddayaknow here it is the Choose Hope Website https://www.choosehope.com/And Yes Crystal you are laying it on a little heavy and overdoing it, or maybe you have a high fever and are hallucinating.
I found this-
Fever. People sometimes hallucinate when they have high fevers. The hallucinations usually go away within a few minutes. Lowering the fever stops them.
Just trying to help.
And if not but for the Grace of God I wouldn't be here to talk to you so he deserves all the Glory-Praise god.
But if it gives you a lift I am happy.OK Crystal good luck on the rest and hoping for an early discharge from the hospital for you on Sunday
Take Care-God Bless-Russ0 -
Chills and fever
Hi Russ,
I'm still inpatient and having chills and fevers over 100*... Its up and down. They are telling me I'm not yet over the Bilateral ( Double Lung) pneumonia and that additionally, -- I could have aspirated even more during the procedure yesterday morning. It was hard on me and my thinking now is they should have waited longer for me to heal and somehow come back from this pneumonia, before doing this esophageal dilation. It could have waited ..
Dr. Clayton told me I have No Reserves..well duh. At 70-71 pounds no, I have no reserves and I'm definitely not gaining any ground.
Not a good summer, ...Yesterday, Dr. Clayton talked about me losing Randal, to the nursing and Anesthesia staff. He knows I lost part of myself in losing him. But Randal had gone through much too much with this cancer, and he couldn't hang on any longer. So, I am thankful he is not suffering any longer. I keep his words and thoughts and his Example with me as I go forward...or wherever it is I'm going at the moment .
? crystal
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Well Dear CrystalLitlCJdoll said:Chills and fever
Hi Russ,
I'm still inpatient and having chills and fevers over 100*... Its up and down. They are telling me I'm not yet over the Bilateral ( Double Lung) pneumonia and that additionally, -- I could have aspirated even more during the procedure yesterday morning. It was hard on me and my thinking now is they should have waited longer for me to heal and somehow come back from this pneumonia, before doing this esophageal dilation. It could have waited ..
Dr. Clayton told me I have No Reserves..well duh. At 70-71 pounds no, I have no reserves and I'm definitely not gaining any ground.
Not a good summer, ...Yesterday, Dr. Clayton talked about me losing Randal, to the nursing and Anesthesia staff. He knows I lost part of myself in losing him. But Randal had gone through much too much with this cancer, and he couldn't hang on any longer. So, I am thankful he is not suffering any longer. I keep his words and thoughts and his Example with me as I go forward...or wherever it is I'm going at the moment .
? crystal
I am sorry to hear you have developed a fever and of course, the chills come along with it.
I think at least it is good it is up and down as that means to me it isn't a solid locked-in fever indicating something really wrong.
Like when someone has a bad solid fever for days and it finally breaks, well yours is already broken so to speak.
Of course, it would be better not to have one at all.
I thought you said before that the dilation had to be done.
Now you say it could have waited.
Well, lesson learned by all.
We move on and get you better and get you home.
As far as your reserves, well, it's time to restock.
Not a good summer but let's make it a good fall.
So glad you have the memories of Randal and his strength to pull from.
You lost part of yourself but Randal left a part of himself with you, he replaced it.
Dear Crystal "you are not alone" I am here for ya the forum is here for ya and hopefully the folks on here will
post some well wishes or private message you.
So Crystal Get better and get back to your amazing self soon!
And I am Wishing you some well-deserved good days to make up for all the crummy ones lately.
I know it's hard spending time in the hospital but at times it's the best place to be, we just don't want to make a habit out of it.
Crystal tell your nurses and docs and any others that are helping with your care that the CSN forum says HI! and thanks for taking such good care of Crystal.
OK, Crystal sending Love and healing hugs from a distance and backing it up with Prayers and well wishes for timely healing and a return home and regular activities.
Feel free to contact me anytime-Wishing You The Best-Take Care-God Bless-Russ
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It was necessary, he says
Thank you dear Russ.
The animal photos are so pretty!
Hey, the comment I made that " it could have waited", -- waiting until I am without infection before doing the dilation--- That was merely my own opinion, from my own perspective.
But here are the facts::: because it was 2 months late, my aspiration problems did worsen. And every time I was drinking my liquids, it wss also entering and going Through my nose. He told me yesterday that it was happening because my esophagus had become So Tight, that when I swallowed, it was backing up, and forcing it into my nose. See, I am very use to having strictures in my esophagus, starting in 1995, way before cancer. So, I ignore it and keep swallowing.
He said that the liquids were backing up, because I wss swallowing faster than it could go through the 2 dominant strictures. I have an upper one, and a lower one. I'm not going to go into the details ...but there are 2.
When I'm swallowing, I don't think about it and I keep going even to n spite of chest pain. Well, its been forcing liquids back up, and then through my nose ( because that flap doesn't close it well, of course )
He is trying to protect me from more aspiration, because mine is Silent. I can't feel it, so I do not cough nor try to clear it when it happens.
Well, dilating those 2 strictures helps me by allowing the liquids for swallow to flow better, downward. He wants to keep them as open as possible, trying to protect my Airway.
Problem is, my esophagus is so tight overall, all he can dilate it to is now 7- 8 millimeters . Then invariably it begins closing again. Over time, he has tried to determine how fast mine closes up. Thus, I am on a Schedule of these dilations. This time I was 2 months late.
Don't know if I told you, the C02 levels in my blood ( carbon dioxide) are Really High. That's one way they can judge how bad my breathing is. Even apart from the Oxygen reading from ones Oximeter---- The C02 levels in the blood are a big sign that your lungs are struggling to deliver enough Oxygen to the body. High C02 levels are not good!! Its why I get Shortness of Breath, for example.
Its a blood test...
Anyway, Friday morning when I went to my Anesthesia Pre Op clinic visit, I remember that I told you, that the Anesthesiologist who examine me told to PLAN for either Admission, or at minimum a longer time in Recovery. She had me sign Release forms, that day.
Well, they admitted me... And I was prepared. My suitcase was in my mothers car. She took me to the hospital yesterday morning. I learned many years ago to always be prepared ! I'm very pragmatic ... Just be ready for what could be next, dont live in denial.
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Have a great weekend, Russ. I will be alright.
? Crystal
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My hospital at home
Hello forum,
I wanted to make another post about my lung disease because its worsened to the point that now I have to have Machines to help me breathe, and try to keep me out of hospital ( if it works..) And perhaps prolong my life...?
For months I've used a nebulizer to deliver 2 different bronchodilator drugs, and sodium chloride into my lungs. But that hss not been enough, so my pulmonary team ordered Hill Rom to bring me their ultimate Airway Clearance System. To use at home.
I used it in June while inpatient for my double lung pneumonia, in the cancer center hospital. I absolutely hated it !! It beats me up, and they were making me do it every 6 hours a round the clock. Waking me at 2 am, to do this treatment.
At home though, I do 2 treatments per day and they are for twice as long ( at home I have to do 20 minutes, instead f 10).
They also have me do my nebulizer treatments, during the oscillating Vest treatment. This oscillating Vest treatment is so rough on me that I cannot see to read. Its vibrating my chest at 10 Hertz, while I'm trying to breathe deeply through my nebulizer....
I have a repeat CT Chest coming up and another Broncoscopy too.
Until my Stage III Recurrent head & neck cancer, I had never had any lung problems whatsoever. Well, ...now I have permanent lung damage brought about by 5 ( or 6 ?) Pneumonia, ...caused by both aspirating and then having weakness in my coughing ability. Swallowing and coughing are very connected...
Anyway, here's a video to watch explaining this big Machine which for now is sitting on my dining room table, where I sit for my treatments.
I will try to highlight this link so its clickable..
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To clarify for Curt
Hi Curt,
I know you ask me the questions on private messaging but I'm going to answer here just to clarify things
First, no--- I don't wear the Vest " all the time". It has to he hooked up to this 20 pound machine with the hoses to inflate it and then do a session. I am supposed to do 2 sessions a day and each one lasts 20 minutes. I am doing it Once per day now, until I get used to it...
So, its a once or twice daily 20 minute session.
My Nebulizer treatments are actually Much more important and I do those up to 4 times daily. Those are considered a " rescue", -- if I'm wheezing or short of breath, a nebulizer treatment of inhaling the 2 broncho dilator drugs, over a 10 minute period, will help a lot. For maintenance I do those 2 times daily.
So, its just a matter of " scheduling in" my breathing treatments and the reasons are trying to keep me out of the hospital, etc.
Please remember, I do Not have a caregiver. I have to do Everything myself. I take myself to all appts, I grocery shop,...shop at the Mall, just do what everyone else does and the Goal of my doctors is to keep me active and being this independent..for as long as I can. My condo has 24 stairs, and I'm up and down those stairs all day and night.. One project I'm involved in now is Downsizing. I am seriously giving away/ and donating lots of stuff, including expensive items I just don't need.
So, I'm carrying stuff down 24 stairs, out to my truck. Some of its heavy. It is feeling really good to free up space and reorganize !
My doctors know I am fiercely independent, they can readily see this--- so, instead of letting things go, they are being very proactive in trying to keep me active and allowing me to live like I I am use to. I really appreciate their efforts !!
Crystal
PS, the photo here is of Lady, one of my last Obedience Trial Champions . I showed in the show ting for many years. Travelling across the states to show dogs. In this photo, she was almost 11 years old, jumping at full height. She has the dumb bell in her mouth. We qualified and placed Second at that show...
She was a large dog, weighing more than me. I bought her at 9 weeks old and star
ted Obedience at 11 weeks old. I also trained and Certified working Therapy Dogs.
Lady lived to be 14 years 6 months old.
Jen's Lady In Black Pearls, RA, RN, RE, CD, CDX, TD, CGC
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Crystal,
I certainly hope the vest and nebulizers give you some relief.
You should cast about for some support. When I asked for things like rides to treatments, I was amazed at the help I got.
Anyway, I'm thinking about you, and sending all the good thoughts I can.
(That's a beautiful dog!)
I hope you find joy in your day!...
Curt
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In trouble
Today is Sunday, and my results just came in of the Sputum culture I turned in Thursday last week. As you can see, I have yet another lung infection. I have had Klebsiella Pneumoniae before. Problem is, oral antibiotics no longer seem to work on me soi I willl have to have intravenous route.
Damn. Well, Tuesday I will be in the Cancer Center hospital for my regular infusion... I guess my Pulmonary doctor will be calling me. CT scans coming up and another bronchoscopy too. This pneumonia is what keeps me quite tired. Crystal
CYSTIC FIBROSIS SPUTUM CULTURE - Details
Component Results
Component Your Value Standard Range Flag Cystic Fibrosis Sputum Culture ID Normal throat flora Cystic Fibrosis Sputum Culture ID 2+ Klebsiella pneumoniae A General Information
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Hey Tough Lady,
You are amazingly strong, and you're a woman I would pick to win, over ANY infection.
I'm glad you're getting the care you need, and I'm looking forward to hearing that you feel better.
...sending all the good thoughts I can!
Curt
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Crystal,
I'm not sure what's going on with you - but I hope (one way or another), that you're in a good place..
You are maybe the bravest soul I ever met, and I feel strengthened ... just by knowing you!
Curt
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Still in the hospital
Hey,
No talk of discharging me yet. I'm on 8th floor with view of... brick wall and the windows of the Tower beside this one. I can hear the AirCare helicopter leaving right now. ( this is a Level 1 Trauma Center, in addition to being a
Teaching Hospital/ School of Medicine, a renowned Children's hospital, and a Comprehensive Cancer Center. All in one, and the whole shebang even has its own zip code.
My lungs are not clear yet. Awaiting several tests, imaging results, etc. I'm getting 2 IV antibiotics, around the clock with fluids and my tube feeding .. 3 to 4 breathing treatments daily.
I can sleep only 2- 4 hours per night and was awoken this early morning for a breathing treatment... With the %#!@#!! Vest treatment.
No sleep during the day because of so many coming into my room, and its a busy hall too. I've had 1 visitor......
Stay safe.
crystal
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Crystal,
Well - I am VERY glad to hear from you!
I'm sending all the positive energy I can muster!...
Curt
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