BUCKLE UP!!

 

It’s been an eventful week, she's checked into the hospital, and we’re on the final countdown to cell transplantation Aug 1.

But first, the highlights from last week.  It was a pretty good week. 

 

The data review conference was the highlight.  Her care team reviewed with Kristina all the cumulative diagnostic test results that were required in order to push the ‘go’ button on the transplant.  That button was pushed, she’s cleared for take off. 

 

There were a couple of things, one of which was a heart murmur which she thought she had grown out of, but it’s a ‘trace’ and really not a concern.  She also had pneumonia in the hospital last time and she didn’t even know she had it.  There’s some residual lung issues, but not significant enough to stop the transplant.  She did have a couple of minor symptoms (intermittent sore throat and some diarrhea) which caused a few more tests, including a last minute chest CT scan.

 

If there was a low light, it was an extensive interview on Kristina’s extensive travel.  Questions of her recent trip to Peru & if she was in the Amazon. And even area's & beaches she visited while in Sri Lanka just before Covid hit. As a result, in an abundance of caution,  they put her on ivermectin, which came as a shock to her (flipping stunned were her words). 

 

Last week she had 4 bags of blood, 3 reds and 1 platelet, as well as 1 additional platelet bag very early this morning in her hospital room.  Despite that her blood levels aren’t good.  Her neutrophil count was 0.01 (10) and her platelet counts are falling as well and her ‘crit’ level hasn’t maintained despite the transfusions.  She thinks something isn’t right and has chalked it up to the ‘mild’ dose of Vidaza, the maintenance medicine used for MDS patients.  She’s 25 days since her last dose, and her levels aren’t great. Vidaza is typically a 28 day cycle..

 

Her team is isn’t too concerned, but Kristina is a bit – more so about her cell recovery after her current round of Transplant chemo. 

 

One more bit of news – Kristina is CMV negative, but her donor is CMV positive.  The matching process isn’t perfect.  The primary matching points don’t even cover CMV – Unfortunately it’s part of a secondary screening stage of the donor. 

You may be asking yourself 'what, exactly, is CMV'?  It's a virus that infects roughly 100% of folks in Africa and Asia and up to 80% of people in the US.  If 10 people are ready this right now, odds are that 7 or 8 of you have it.  Without knowing it.  It lies dormant most of the time.  It's in the herpes family of viruses, but isn't herpes nor is it considered an STI.  It usually isn't a thing.  Unless you become immunocompromised, then it can attack the kidneys, retinas, and become pretty serious.    It's one of those things to worry about, but likely won't be a problem.  Until it is.  

It can be a problem in young children, and it is similar to  mononucleosis.  From the description of the systems (general malaise) one could suffer from acute CMV but never really connect the dots.   For Kristina it's another thing to be concern with but is outside her control.  If she's healthy, it won't impact her, but in the future, if she becomes immunocompromised, it could cause health issues.   For right now, it's a 'tomorrow problem'.

 

She did follow up on the donor process and they went through 5 donors, some were unavailable, one was pregnant, etc – so they landed on the 6^th donor – despite the CMV positive status. 

So while not perfect, the donor has already had his stem cells collected and Kristina is now on her 3rd day of the transplant chemo cocktail. She is walking laps around the transplant floor and receiving IV hydration & additional prophylactic med's daily.   Things are moving forward. 

 

Kristina is feeling pretty good – or at least better.  She’s gained a little bit of weight back and she was gaining some strength.  But not as much as she’d like.  She’s still exhausted and the fatigue level is a thing.    She knows what’s in store and feels only marginally ready for the challenges ahead.  

 

But psychologically she’s at the point of ‘let’s get this done’.  

 

Kristina is back at UW Medical Center, the main Montlake campus, diagonally across from Husky Stadium. To visit, take the Cascade wing elevators to 8NE floor, rm # 8240 & sign-in.   The actual transplantation of the stem cells takes place on August 1st. Please ping her, visit her, ask if she craves any outside food. By all reports the hospital food is less than... well, far beyond sub par, to put it gently. Oh, and no live flowers or plants.

 

All systems go, buckle up.

T minus 10 days

 July 17th, 2023 --T MINUS 10 DAYS 

 

As of the last post, Kristina had been dealing compounding delays followed by the worse than expected aftermath of the lumbar puncture (LP) and the ‘surprise’ round of chemo. Both the LP and Chemo hit Kristina’s body pretty hard with compounding effects. A one – two punch.   She’s down 10-12 pounds and the fatigue caused by the “maintenance” or “management” round of chemo was far more pronounced than expected.  At the very time she needs to be building herself up for the transplant she’s weaker now than after the first round of chemo. 

 

The plan was to walk, exercise, and get ready for rigors the transplant will bring.   As Kristina says, Chemo is bad, transplants are worse.  As you go into the transplant you want to be as fit as possible. 

 

What has played out is the reverse.  The lumbar puncture brought her down and the ‘maintenance’ chemo furthered that direction.  The July 4th holiday wasn’t all that great as the 1-2 punch took hold.  Weakness, fatigue, and getting winded at the slightest uphill grade.  Plenty of time, about two weeks, was spent on the couch. 

 

That continues to this very weekend -- She’s now 11 days away from being admitted to the hospital in a weakened state. 

 

Kristina is worried about more delays.  Her care team, as recently as Thursday, has assured her there everything is on track and and her fatigue systems “aren’t that unusual”. 

 

And of course, there’s more to the story.  Last Saturday she was rubbing her eye and broke a blood vessel in her eye.  In and of itself, not serious, but an indication of low platelets.    On Sunday the eye was quite red and she called Fred Hutch and gave them a heads up.  They had her come in on Sunday, and her blood hematocrit level (crit for short) was 25, (normal would be 36-44, but if they dip below a certain threshold, a transfusion is called for.  The normal threshold is 26, but Kristina had requested that be lowered to 23.   

 

Now, you may ask, what the heck is a hematocrit level.   It measures the proportion of red blood cells that that carry oxygen throughout the rest of the body.  To low and you become anemic.  Symptoms would include fatigue, weakness, and low energy (ding ding ding ding). 

 

Also on that Sunday her Neutrophil level was 1.34.  Or 1,340. On that score, good news (remember when it was zero and too low to count?).  Her platelet level was 28.  Not great, but, given Kristina’s condition, not terrible either. 

 

But the low hematocrit level was worrisome. 

 

On Monday she did a type and screen in preparation for transfusion (red blood cells) which she got on Monday.   Her crit level was 24, but her platelet level had dropped to 20.  Neutrophils was 1.09.   

 

On Tuesday, she went back for another test and the  platelet count was down to 10. (transfusion threshold was at 11).  Monday’s red blood transfusion should have bolstered her crit numbers, but instead they only bumped one point.  The low number for the platelets triggered a platelet transfusion which she had on Wednesday – followed by another red blood transfusion on Thursday.

 

The neutrophil count had declined to .74.  Worrisome. 

 

All of this has Kristina on edge.  She should have been regaining strength headed into the transplant.  That isn’t the case.  

 

In addition, the trust she’s had in her care team has eroded a bit.  On this score there’s a bit of, well, let’s just call it ‘wiggle room’ for interpretation.  Kristina is in a battle for her life and feels like she’s negotiating for her care.  Her care team has missed some significant things, starting with the lifetime cap on one of her chemo meds which she knew about but took her doctor by surprise.  There have been some other mis-steps with the presentation of some clinical trials which were not appropriate for her.  She was also on Posaconazole for about 6 weeks too long (the side effects of which likely contributed to some of the symptoms she’s been experiencing).  She hasn’t been Neutropenic since May 30^th, but was just told to stop taking it last Friday night at 5pm.    Another point that her chart isn’t being thoroughly read.

Kristina has felt she’s needed to read up on these trials to keep things on track.  Kristina would urge any transplant patient to really dig into the research -- at a minimum you're going to ask better questions to your care team -- or, in the case of Kristina, have facts that correct the treatment plan. 

So – where does that leave us right now? 

There’s another BMA test this Wednesday followed by a team meeting Thursday – a data review to ensure everything is coming together for the following week.  The donor, a 12 out of 12 match, will begin harvesting the 25th.  Just 8 days from now.  Two days later, Kristina goes into the hospital on Thursday the 27th. 

It’s all coming together, but not in an optimal way.  But again, there’s nothing optimal about being in the fight for your life.  After fighting twice before.