Pneumocystis pneumonia (PCP / PJP)

[natnnnat]

This is kind of a transplant story, move to off topic if that's a better place with apologies to moderators.

I took Gregory into hospital on Saturday and he was duly shipped up into the renal ward where he has been ever since. I have been waiting to find out what Gregory has (flu like symptoms) and still don't know for sure, but they think its Pneumocystis pneumonia (PCP) or pneumocystosis  - a form of pneumonia, caused by a yeast-like fungus.  "Pneumocystis is commonly found in the lungs of healthy people, but being a source of opportunistic infection it can cause a lung infection in people with a weak immune system. Pneumocystis pneumonia is especially seen in people with cancer, HIV/AIDS and the use of medications that affect the immune system." (says Wikipedia, a wretched source but I'm in a hurry)

Gregory is looking slightly improved for the first time, tonight. He shook and flapped about like a fish in a bucket until Monday afternoon, and each afternoon came relatively good till 6pm when the shaking would recommence.  Monday afternoon his oxygen got low (80). That caused a stampede into his sealed room, of heart specialists, lung specialists, people with machinery, renal doctors, and even a representative from ICU. It felt like we were in a Dr Seuss book, the machinery kept getting crazier and crazier, and the specialists more and more varied. Gregory said he was expecting them to send a plumber next.

Creatnine stable but high: from 516 on Saturday it is down to 466 or so every day.

On Tuesday they seem to have hit on the right antibiotic. The shaking is much more subtle, and he has started to go on short walks about the ward.  Today (Thursday) I snuck him out of hospital to a nearby park.  We stayed in the car, but drove slowly about looking at the scene for an hour.  We got married in that park, so it was nice to be back there.

He is having a diagnostic test tomorrow - a bronchoscope - where they put a tube into his lungs.  Urgh, I hate to think about it, but they promise it will be easy and not hurt him.  I wish he were home with me tonight, must be the rain making me sentimental.  Other than the impending “bronchoscope” I am glad he is in hospital, they have got his symptoms back under control and that is a great relief.
Hopefully he can come home “next week” they say.  But there is a team of endocrinologists sniffing around his thyroid, he has lumps there and they wonder if that is the cause of his calcium levels, which they say was “dangerously high” (was 3.6 on Saturday).  He is more nervous about them, he says, “they’re not getting my thyroid”… I’m more nervous about the test tomorrow, yukko.

[Chris]

Sorry to hear
I had that occur to me either last November or March of this year (I can't keep my hospital stays straight past last one). I had to do breathing treatments, diferent antibiotics till it was pinned down. Not a fun experience, but to me it was better feeling than pneumonia I had shortly after transplant.
 
Hopefully he will get out soon.

[natnnnat]

hearing that you have weathered these storms is a great encouragement to me Chris, I will tell Gregory when I get in there today.   I'm hoping that his creatnine and calcium will go back to normal once his system recovers from the PCP. 

Another way of looking at this however is, img Chris, you have been through a pile of stuff.   

[billybags]

Hope Gregory gets well soon, It is horrid when you are a lone at home and they are in hospital. Give him our love.

[Poppylicious]

*huggles* for both of you ... hope he's home soon.

[natnnnat]

Gregory home from his adventures now. Got home 7pm.
:-)
watching telly with a cat on his lap. Everybody is happy.
they say creatnine is coming back down and expected to continue downwards when the bactrin is lowered  (using it as treatment)
Thanks to you all for wading through my long compositions, and for all your kind words on this and other threads, which I have read to gregory over the phone or otherwise communicated to him. Kept me smiling some nights.

[bette1]

So glad to hear that Gregory is home and feeling better. 

[Chris]

Good to hear natnnnat.

[Jean]

that is such good news. Good for him, and I am sur eyou feel better too.

[paris]

I love that you share the comments with Gregory.  We all feel like we know him too.

Our family works with the HIV/AIDS community and that particular pneumonia is the one they dread the most.  I am so glad to see Gregory is getting better.  He has been though some tough times.    Since we are getting so friendly with Gregory,  give him a big hug from me     

Enjoy your posts Natnnnat!   

[okarol]

  Hi natnnnat,
Hope things have continued to improve. 

[Desert Dancer]

Hi, Natalya -

I didn't see this when you first posted it and I apologize I was not around to support you. But I am so glad to hear Gregory came through all right and is comfortable at home. I hope he continues to recover quickly.

On the plus side, they *didn't* send a plumber.

[natnnnat]

A quick update.  How can I make this short.  Hmm.

Gregory has been quietly recovering from his pneumonia at home, we go into clinic once a week to check in.  Last week, we got a doctor he has never seen before, who looked at his chart (creatnine at 518, then 480, then 410 or something like that) and said that he was heading towards renal failure within a year or two.  She advised him to look for donors and consider PD.  She told him to get his teeth checked as part of preparation for a new transplant.  I said, do you think its a reaction to the pneumonia and the kidney mightl recover?  Maybe, she said, but then went back to her discussion of renal failure.  Afterward Gregory called her "Dr Doom".  The next day I rang the clinic to get his creatnine level from the day before:  it was 350.  So we reminded each other of what Chris said, and Cariad's words:  they (or at least Cariad, memory is vague here) had creatnine spikes, and then got back on track. 

When we went back yesterday to renal clinic, the kidney thing seemed to be in the background (and his creatnine was 310).  This week they have a confirmed Papillary carcinoma (thyroid cancer) and Gregory is booked in to “whip that lump out” in December.

Gregory's response was:  "Ah well bugger it!"  "No point being negative," said Gregory to me.  This morning when I left, I woke him up.  I said, wake up, restless leg. (His leg was shaking about).  He sang, “the sun has got  his hat on…hip hip hooray!” which is some childhood song he sings to exemplify waking up manically cheerful.  Then he said, "go on then, go to uni, leave me here to die of cancer.”

I complain that he doesn't always do what they recommend (e.g. he decided not to go to renal clinic yesterday, I guess I went and he followed me), but he makes me laugh, no doubt about it.

[natnnnat]

PS a great quote from the doctor we saw yesterday:

I said, at the end of the meeting, something like, "What about his kidney?  Last week, it appeared that it was about to fail, he had to think about donors and so forth, but his creatnine dropped after that to 350, what is the situation with his kidney, is it still a problem?  I said something like that.  Doc looked about and found that his creatnine today was 310.  “But,” he says, “you’ve still got a fairly grotty kidney.”  “It’s a 20 year old kidney,” said the nurse.  “A 20 year old kidney in a 20 year old body, how did you manage that?” says the Doc to Gregory, who laughed proudly.

I had a whole list of questions I wanted to ask, but I notice that was the only one I got out.  The others were all forgotten.  I couldn't seem to see them on the page.  Wierd.

PPS:  thanks DesertDancer, Okarol, Paris, Jean, Chris, Bette1, Poppilicious, Billybags for your lovely messages.  I gave him the hug, Paris.  He seemed to like it.

[natnnnat]

I'm so happy today:  Gregory got his creatnine tested again yesterday and its down to 281!  YES!!!
Down from 516 = 5.83, today it's 281 = 3.1!!!!!!    Surely the bean is coming back!  That bouncy bean!
I say 
Gregory says 

[Chris]

That's good news there. Let''s keep it going down.