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Distractions and detours.

po18guy
Posts: 1011
Joined: Nov 2011

Have been away since Monday on another medical detour. Fresh out of one ER and two hospitals. Over last weekend, began feeling worse. By Monday, much worse. Lethargy. Near zero appetite, rising fever, strong headache and major balance deficit, making walking dangerous. Off we went to the regional ER. They did chest X-ray, blood draws, and a CT of my head/sinuses as well as head-to-pelvis CT series with contrast. Did not like what they saw in my lungs. Mentioned a bronchoscopy because of the widespread inflammation and lung nodules. Did not like the blood numbers. At all. Hemoglobin and hematocrit had both tanked, being at times less than half of my formerly unacceptably low numbers. Internal bleeding was suspected, but none was found. Dual I.V. lines placed. Lost count of how many blood draws and cultures were run. Received free prostate exam in the search for blood loss.

I was fairly seriously anemic. The PA's worry at the original hospital was the readings lead them to suspect sepsis. Recalling Paul Allen, upstairs to a room I went. My history was impressive to them, but also caused considerable consternation when they contemplated my history and the transplant and GvHD issues - which they do not deal with. however, they transfused me as that was only immediate solution to the blood problem. No source for the iron loss or anemia was obvious. Marrow failure was a possibility, or a hemolyitic condition in which my body was actually destroying its own red cells. Exactly this had occurred when my AITL was active.

They contacted my current hematologist and discussed the matter with her. In the meantime, I called Dr. Shustov (no longer under his care ) and described my symptoms. Took him 1.5 seconds, maybe less, to diagnose the anemia. Had I the blood numbers in front of me, he likely would have diagnosed the remainder as well. DW wanted to transfer to the UW Hospital if I needed a transfusion, but we decided on the first unit locally. Fortunately, they had blood in store that was acceptable for transplant patients. That perked me up quite a bit, but I was now a hot potato since they do not deal with transplant issues. They agreed to transfer me to the UW but no room was available, so we had to wait. Yesterday, Thursday, a room was available.

Once we arrived, it was straight to a room - same floor and just a few doors down from where I spent my transplant recovery in 2015 - all very familiar. Repeats of bloodwork done every few hours. Much to my chagrin, new sticks for each of them. Took four tries for one sample at the at the first hospital. At least 8 doctors visited, from the resident transplant doctor and his in-patient team to two pulmonary specialists and an infectious disease team. 20 questions is easy. 200 questions not so much.

Another unit of blood at the UW. More I.V. antibiotics. I have a so-far unidentified fungus or virus (possibly both they said) in my lungs. Sadly, Jakafi is known to produce anemia so we discontinued the only drug that has helped with GvHD. Sigh. It all seems to have been a perfect storm of one or more viruses, pneumonia and anemia. However, the blood and numerous anti-everything drugs had perked me up considerably (if only to get out of the place!) so it was agreed to release me this evening. Now all of the follow up appointments begin.

Still delighted to be anywhere.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

Po,

My sister-in-law has had severe sarcoidosis for about ten years now.  It is an amassing of granulomas, which present as large lymph nodes, usually first, and primarily, in the lungs.  It took a long time for a large team of doctors to diagnos her -- months.  Most agreed initially that it was lymphoma.

Sarcoidosis is non-cancerous, but in some ways can be worse than lymphoma, since it is not curable, and at times only moderately treatable. Treatment is mostly via steroids and inhalers.

Two years into NED, I went severely anemic and had to go on IV iron.  The doc did a lot of testing to determine the cause, but never could (colonoscopy was his first test ordered).  But, my levels then returned to normal and have been perfect since.

It seems you are reasonably sure that this is graft v. host related somehow, but ask your team about sarcoidosis....it is almost never on an oncologist's or even pulmonologist's first list of causes. On CT, it looks identical to HL or NHL.

max

po18guy
Posts: 1011
Joined: Nov 2011

Dr. and I considered sarcoidosis back in 2013 or 2014 due to my unusual symptoms. It was not - it was AITL, which triggers a veritable plethora of auto-immune conditions. I think the Jakafi has been hammering my red cells for some time, but tey finally reached the precipe and fell of. That and one or two pathogens causing the pneumonia. A kind of mini-perfect storm. 

illead's picture
illead
Posts: 846
Joined: Aug 2012

That's it, you couldn't find one to change into your Superman gear!  You are the hero and we are your audience and with you every step of the way.

Hang in there,

Becky & Bill

Sal0101's picture
Sal0101
Posts: 125
Joined: Sep 2015

Oh boy, that’s quite the week!!  Glad you’re doing better! 

Sharon

po18guy
Posts: 1011
Joined: Nov 2011

Thanks, all! Never mind getting off the ground, I can barely get off the couch! My cape would have to be purple, to match all of the contusions. My hands and forearms look like I have been porcupine wrestling. I guess I'll have to lay low for a few datys.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

Po,

I'm gonna shoot for Rip van Winkel Man...will have to train to not catch the beard in my cape.   I've averaged 10 hours a day sleeping since chemo ended 9 years ago, but have slept 14 hours straight on occasion.  Think of me as the Joey Chestnut of competition sleeping....  I take super B supplements, eat well.  Blood panels normal.

There's fatigue, and then there's whatever I have.

--- R.v.W. Mann !

 

https://en.wikipedia.org/wiki/Joey_Chestnut

yesyes2
Posts: 590
Joined: Jul 2009

Wow, sorry to hear of your past week.  Glad that your feeling better but looking like you've been abusing the needle isn't a very good look.   Wasn't aware that Jakifi caused anemia.  My current iron saturation level is 3.  I'm finding that couch a very comfortable place to hang out.  

Hang in there, we're all pulling for you.

Leslie

po18guy
Posts: 1011
Joined: Nov 2011

Is used to treat PV, which is excess red cells, and Essential Thrombocythemia which is excess platelts. Most effective in the marrow from whence the horseman of anemia cometh. We were hopong to strike a balance. First attempt not so good. We either re-start the drug at half dose, or move onto Ibrutinib.

As to needle use, I get lots of sympathy in Seattle, until they find out I'm not a heroin addict.  

DJS628
Posts: 48
Joined: Mar 2018

Hi PoGuy,

So sorry to hear you are in the hospital.  I've been praying you were going to keep doing well for many years to come.  I hope they get it all figured out and fix you up soon so you can get back home.

Now, you are maybe wishing you had that port yet?  Mixed emotions on that one, I bet!

At least you are in familiar territory and the nurses & doctors know you and all about your history.  Do you still recognize some of the staff taking care of you?

We are all sending positive thoughts and prayers your way.  Hopefully, this is just one little "blip" in the road and it'll be of short-duration.

 

Take care and keep us posted on how you are doing.

---Debbie

po18guy
Posts: 1011
Joined: Nov 2011

I survive through prayer. Have been out since Friday night. Rough day yesterday - thought I be be back in, but the fever dropped. Actually glad to have the port out, as it was specific to ECP and I'm done with that. As to the staff still being there, Dr. Hickman who placed my first port had already retired twice. The doctor who placed my first Hickman line retired. The RN in radiology is retired. Either I am a notably difficult pateint or have just been at this for quite awhile.

DJS628
Posts: 48
Joined: Mar 2018

Hi Po,

 

Glad to hear you are back Home Sweet Home! 

 

I hate it when everyone retires on you! 

 

Yes, prayers do help!  Been praying for you and all cancer patients.  I pray you will be doing well from now on.  Do you have any more testing or treatments coming up?

Take care, get your rest and stay out of the hospital, ok?

 

---Debbie

PeprmntPat55's picture
PeprmntPat55
Posts: 60
Joined: Aug 2016

Hey po18guy,

praying for you that your energy soon returns. enough of hospitals and dr's. spring will soon be here and hopefully that will help :-)

wishing you the best,

yesyes2
Posts: 590
Joined: Jul 2009

Just dropping in to say hi and hope that everything is looking up for you.  You continue to be an inspiration to many oo us on this board both because of yur unimaginable medical experiences and yoour wealth of knowledge and willingness to share this knowledge with others.  Hope that you are heading towards sunnyier days.

Leslie

po18guy
Posts: 1011
Joined: Nov 2011

Pat, Leslie and Debbie! Some weeks are like this. Had a blood draw earlier today and the numbers are falling once again, so off it was to be squeezed in for my third unit of blood. A little perkier now, but my arms and hands look like a battle field. In the lest two weeks, I've had more needles than the Seattle Parks system!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

Po,

And you have to pay for your needles, and have them disposed of in a biohazard manner.....

 

po18guy
Posts: 1011
Joined: Nov 2011

Due to my overal toxicity, the only plot of land that will accept me is the Hanford Nuclear Reservation...

In for another unoit of blood last evening. Watching for a marrow turnaround.

po18guy
Posts: 1011
Joined: Nov 2011

On nurse's advice, back to the U of W ER last evening. A liter of fluids and several more blood panels run, including the most comprehensive viral panel available. That will take two weeks, but they found little evidence of pneumonia, so that seems to have been treated fairly well. Temp still varies widelay, from 96.9 to 100.8 or so. Since the immune system regulates body temperature, it is clearly in a state of turmoil.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

At least the medical personnel are not ignoring you.   Classical Hodgkin's routinely causes an oscillating fever, that comes and goes, not staying high, with no detectable infections in the body.  But your medical path has never been "classical" or that simple.  Plus, no one wants HL.

po18guy
Posts: 1011
Joined: Nov 2011

Were all clear. It is clearly a combination of events - the perfect storm of suppressed marrtow and red cells, one or two viruses (so far unidentified) and possibly some other factors. Max, you know this very well: as it is with reasoning, we cannot avoid suffering. We can only avoid suffering well.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

Super, regarding the CT.   

Live like Shakesphere wrote of Romeo: He loved not wisely, but too well.

 

.

po18guy
Posts: 1011
Joined: Nov 2011

Both my wife and son are asthmatic. It occured to me that since asthma is an inflammatory (i.e. immune system) response, and having both of their  DNAs in me, I might eventually develop asthma. Upper respiratory tightness, shortness of breath and dry cough got me to wondering once again. I gave myelf a couple of puffs of albuterol, and about 10 minutes later, it was gone. Will have to inquire Thusday at my next appointment, but we have extensive experience with asthma, so no biggie there.  

illead's picture
illead
Posts: 846
Joined: Aug 2012

That is great news, we are so happy and know what a relief you and your family are feeling.

Hope the Superman suit still fits, Laughing

Becky

po18guy
Posts: 1011
Joined: Nov 2011

My only hope.

po18guy
Posts: 1011
Joined: Nov 2011

I either dodged yet another bullet, or more likely slipped and fell just in time. Marrow seems to have rebounded, as my hematocrit has climbed back up to my normal substandard level - a win. Mo more talk of a marrow biopsy, as it seems to be alive. As to what was wrong with me in recent times, it shall forever remain a mystery, even if a painful, costly mystery. So the plan is to take a diuretic for three days or so to ease the painful edema in both lower legs and ankles. After about two weeks, we will re-introduce Jakafi at 5mg daily and watch my blood closely.

Research must be more fun from the physician's side.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

I'm pretty sure Po won't mind me putting a bit of other good news on his thread.  I went today for my annual PSA test, following post-Davinci prostate removal surgery.   Only two things produce PSA: a normal prostate gland, or prostate cancer cells.  Therefore, for a prostectomy to be successful, a man after the surgery must always have Zero PSA the rest of his life; any significant PSA reading indicates relapse.  I was blessed with another 'Undetectable' PSA result.   This is now 4 years; after next year, the surgeon cuts me loose, and I just have an annual PSA test at my family doctor's office.

max

po18guy
Posts: 1011
Joined: Nov 2011

Congrats! You have enough to keep busy with!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

https://www.rd.com/health/healthcare/most-expensive-prescription-drugs/

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