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Medical mystery worthy of reality TV

Posted on February 05 2016 by Pat Killingsworth | 3,397 views

I’m a medical mystery. Why should I be surprised? Some of the medical news is good. But overshadowing basic improvement are a long list of unanswered questions. I’ve never had more blood drawn in my life!

Let me pause here to apologize to a number of readers that commented following yesterday’s post. Our WordPress blogging platform automatically updated at just the wrong time and your comments–along with my carefully drafted responses–have been lost. They’re floating around somewhere in the cloud, with no way to retrieve ’em.

That’s unfortunate, because hearing from so many of my dear friends has given me the strength to face more than few frustrating days.

Moving on, I wish my doctors could. I have good and bad news.

The good news? It looks like my pneumonia is a common, bacterial strain. It’s responding great to several different targeted antibiotics. There are a half dozen specialists on my growing medical team. My infectious disease specialist, Dr. GuerreroDr. Ivan Guerrero, thinks I’m doing so well that he is going to suggest I be released on Friday. About time!

But it ain’t happening. I’d be shocked if I could get out of here tomorrow, even though it would be the best thing for me. I’m off oxygen. and Dr. Guerrero thought my lungs sounded clear. I’m guessing I’ll need a good looking chest X ray before I’m released.

Here’s the fly in the ointment. On to the medical mystery part of the story. I shared yesterday that all of the chemo from two turbocharged stem cell transplants literally changed my blood type so much they couldn’t match it up for 12 hours at Baptist Health’s sprawling Jacksonville campus.

In the end, nurses administered two IV bags of platelets. The result? There was a three hour bump up over 20,000. By the 3 am daily blood draw my platelet count was back down to 11,000. Why? No one knows. My creatinine and blood urea nitrogen (BUN) levels are improved, but remain elevated. Why? Now my liver enzymes are screwed up. Why? Earlier this evening an ultra sound of my liver and kidneys prompted the tech to ask, “Are you getting dialysis?”

For a tech to ask a question like this is very unusual. You know the drill. Test techs most always defer to the expert that interprets a test. In this case, the young lady positioned me to watch the screen. I’ve never seen an ultrasound image of a kidney before. But I could see it looked scarred and beat up. She thought my kidneys were enlarged. Why? I’ve never had liver or kidney issues before.

My guess? The toxicity that allowed Dr. Tricot to pronounce me myeloma free has damaged my organs. Or maybe it’s the result of an infection; a holdover from when my stomach was swollen, not allowing food or liquid to pass last fall.

Ironically, today was a dark day. I should focus on the positives. But the medical mysteries yet unanswered has me concerned. Hopefully its nothing more than temporary inflammation and there won’t be any permanent damage. Lord knows the last thing I want is to need dialysis. Thanks to Pattie and her sister’s work at Davita, I understand the challenges facing renal patients. I’ve fought through enough. Don’t need that, too.  Maybe the kidneu doc that will be reviewing my case tonight can shed some light on things.

Feel good and keep smiling! Pat

3 Comments For This Post

  1. Danny Parker Says:

    Pat,

    I can post my advice again. I think you might be best to discuss the doctors about backing off the level of the consolidation therapy. My opinon: not a doctor, but I think your regenerating marrow may not be able take the drug level. Inability to resist bacterial pneumonia indicates likely indicates immune system weakness regardless of what WBC and GRAN shows.

    The blood typing issues likely reflect the same thing. Your marrow is not up to speed 110 days out, particularly after the beating of two back to back SCTs.

    I think you’re doing a great job with it all, but as you know pneumonia is our largest killer. Next is renal failure. Gotta be careful that vanquishing myeloma doesn’t leave prey to opportunistic infection that can kill while we are trying to beat the cancer.

  2. craig Says:

    Pat is a blog I cut from your MB opinion update. Sorry for the redundancy.

    I’m all dexed up at 3 am anyway.

    It took me 55 year and an ultra sound of my kidneys to learn not only did I have two of those suckers, but they looked like a bean too. Who knew. Ive seen my heart too and it doesn’t look anything like a box of Valentine candy. Guys that’s all the warning I’m giving you.

    So sorry for your current situation. I truly have been there. I too had tandem transplants, then during consolidation I crashed (60 days after the second ASCT) with dialysis, dehydration, elevated BUN and Creatinine, MRSA, c-diff and a terrible rash and top shelf antibiotics. The only thing different was: 1) I didn’t have pneumonia, and 2) I didn’t run around bare ass naked. That was a funny story.
    It wasn’t the shortest hospital stay.
    Maybe relevant to your case. I too had low platelets and red blood cells. I passed a little blood in my stool but the GI doc didn’t think it was the cause of low counts. I kept getting daily blood and platelets transfusions, but I remained low. Was my system attacking my donor’s blood? They finally poured the platelets into me to get my level up to 50. I don’t know if that plugged a hole somewhere – but it seemed to do the trick and I got discharged soon afterwards.
    I’m not convinced what caused it. Maybe toxicity. Maybe drug reaction. Maybe delayed GVHD even though mine was a autonomous stem cell transplant too. I do think my rash and permanent peripheral neuropathy were symptoms of the same funk I was going through.
    I can offer hope in the sense that after my kidneys apparently shut down – I did require 4 kidney dialysis – BUT they recovered. My BUN and Creatinine are now high normal.
    That was just over a year ago. Other than a slow recovery, I haven’t had any major issues since last March.
    I just want you to know you are just about there. Just a few more wrinkles.
    Tie a knot on that rope and hang on a little longer. Try to get those platelets higher.
    Craig

  3. Nick Says:

    Pat –

    I’m sure somebody on his team is reading your blog but please make sure your doctors there are in touch daily with Tricot — he will likely have seen all this before and know what to look for before they do.

    Hang in there! It will be worth it. I know it can be hard to keep your eyes on the prize when you are in the thick of it — but the prize is out there.

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