Please Subscribe to get a daily link to Pat's blog via email

Subscribe!

Your privacy is important to us. We will never spam you and keep your personal data secure.

Transplants

Home/Transplants
8 02, 2016

I’m not dead yet!

Tags: , |111 Comments

The commonly used name here for plasmapheresis is plasma exchange. I"m being hooked up for my third, three hour round of plasma exchange. Honestly, I'm in pretty bad shape. I'm not eating. I could give you a lot of technical information about my situation, but the bottom line is this: Five doctors and none can

6 02, 2016

My world turned upside down

Tags: , |35 Comments

As difficult as my myeloma journey has become, the one silver lining has always been my excellent kidneys; no worries on that front. That all changed today. I learned today that my kidneys are/have failed. I was devastated to get the news; with both Pattie and her sister working for Davita Dialysis, I've heard horror

5 02, 2016

Medical mystery worthy of reality TV

Tags: , , |3 Comments

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

20 01, 2016

It shouldn’t be so hard to get excellent care

Tags: , , , |7 Comments

Reliable healthcare. One would think all of the money spent on our behalf would guarantee a consistent standard of care. Au contraire! It's disheartening for me to admit it, but without a dedicated caregiver advocate--or patients like us that work tirelessly to stay up-to-date--it's likely that the care received by someone who isn't paying attention

16 01, 2016

Blood Glucose, MGUS, Myeloma & Metformin (Part Nine)

1 Comment

A lot has happened since I ran two of the final installments about the importance of controlling blood glucose by Danny Parker: Blood Glucose, MGUS, Myeloma & Metformin (Part Seven and Eight)   ASH, unscheduled trips to the ICU, Iowa City drama. A lot went wrong in December. I'm still having trouble bouncing back from

5 01, 2016

Stem cell transplant fallout front and center in 2016 (Part Two)

Tags: , , , , , |10 Comments

I kicked off my 2016 posts yesterday this way: "Euphoria over a myeloma free PET scan doesn't make everything else OK. I've been struggling with post transplant side effects... Still plenty of drama to kick off 2016." Monday I wrote about how stressful insurance mix-ups can be. And I didn't even get into the financial

28 12, 2015

My Patient Power interview at ASH

Tags: , , |2 Comments

Saturday I shared a link to an interview Jenny Ahlstrom did with me the second day at ASH. Can't get enough of me unabashedly sharing my opinions about myeloma therapy options on video? Then fasten your seatbelts! CLL survivor and dear friend, Carol Preston, interviewed me at ASH for Patient Power. The link below should

26 12, 2015

Video highlights of my first few days at ASH

Tags: , , |4 Comments

Good friend and fellow myeloma survivor, Jenny Ahlstrom, is a lot better at the technical side of blogging than I am. She uses a lot of video on her site. Jenny interviewed me on Sunday at ASH. You can listen to it here: http://www.myelomacrowd.org/live-from-ash/ Now that we're past the holiday, I'm going to be going

18 12, 2015

An amazing emotional roller coaster ride

Tags: , , , |33 Comments

I promised to follow up on yesterday's amazing news. Dr. Tricot reassures me that my tests confirm there isn't any active myeloma left. Yet I didn't go into our meeting expecting such good news. Late Wednesday night I was able to take a sneak peek at my PET scan results Tuesday. I’m usually pretty good

14 12, 2015

Back to ASH: Ninlaro and Pomalyst combo promising

Tags: , , , |0 Comments

Before I pass along important information about Takeda's new oral proteasome inhibitor, Ninlaro (ixazomib), I wanted to share an update about how I'm doing. Much better, thank you very much!  Squirting a shot of vancomycin liquid into the back of my mouth (yuck) every six hours seems to be doing the trick. Another antibiotic, Flagyl,

13 12, 2015

BMT Bondage

Tags: , |18 Comments

I'm feeling a much better today. I was in such a dark place. Feverish and saddled with abdominal pain and now nine days of diarrhea, To be wheeled from ICU up to the BMT unit was discouraging beyond words. But as so many of reminded me with love and certainty, "It will get better!" Funny

12 12, 2015

I’m tired of being sick

Tags: , |14 Comments

They moved me from the University of Iowa ICU to the 7th floor BMT Unit late last night. I'd like to say that I'm resting comfortably. Still no fun on so many levels, but I am feeling well enough to get up and get around. I did eat oatmeal for breakfast and part of a

11 12, 2015

I’m in the ICU

Tags: , , |21 Comments

I left Orlando Wednesday afternoon. Sorry that I didn't post Thursday, but I was too sick--and in too much pain to do anything but moan, groan and sleep. A was already in bad shape when I arrived in Detroit to catch my connecting flight to Iowa City for tests. Missed the tests, ended up in