Distractions and detours.

po18guy
po18guy Member Posts: 1,298 Member

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.

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Comments

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,736 Member
    Geeze

    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

  • illead
    illead Member Posts: 880 Member
    No more telephone booths

    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
    Sal0101 Member Posts: 136 Member
    Week

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

    Sharon

  • po18guy
    po18guy Member Posts: 1,298 Member
    "Lethargic Man"?

    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.

  • po18guy
    po18guy Member Posts: 1,298 Member

    Geeze

    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

    Nothing suspicious on the scans.

    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. 

  • yesyes2
    yesyes2 Member Posts: 591
    Nothing easy for you............

    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

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,736 Member
    po18guy said:

    "Lethargic Man"?

    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.

    R.V.W.

    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

  • po18guy
    po18guy Member Posts: 1,298 Member
    yesyes2 said:

    Nothing easy for you............

    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

    Jakafi...

    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
    DJS628 Member Posts: 77
    Sorry to Hear You're in the Hospital, Poguy

    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
    po18guy Member Posts: 1,298 Member
    DJS628 said:

    Sorry to Hear You're in the Hospital, Poguy

    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

    Thanks, Debbie

    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
    DJS628 Member Posts: 77
    po18guy said:

    Thanks, Debbie

    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.

    Glad You are Home!

    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
    PeprmntPat55 Member Posts: 66 Member
    Praying!

    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
    yesyes2 Member Posts: 591
    Hey po18guy,

    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
    po18guy Member Posts: 1,298 Member
    Thank you!

    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
    Max Former Hodgkins Stage 3 Member Posts: 3,736 Member
    po18guy said:

    Thank you!

    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!

    Hope

    Po,

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

     

  • po18guy
    po18guy Member Posts: 1,298 Member

    Hope

    Po,

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

     

    Burial will be held at...

    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
    po18guy Member Posts: 1,298 Member
    OK, so...

    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
    Max Former Hodgkins Stage 3 Member Posts: 3,736 Member
    edited March 2019 #19
    po18guy said:

    OK, so...

    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.

    Well....

    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
    po18guy Member Posts: 1,298 Member

    Well....

    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.

    CTs with contrast

    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.

  • po18guy
    po18guy Member Posts: 1,298 Member
    edited March 2019 #21
    A sneaking suspicion

    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.