Sad News

This blog has been an important vehicle for Ed to share his progress with his family.  I am Ed's girlfriend, Lisa and I wanted to pass on to anyone currently reading this blog or anyone in the future what has happened with Ed.  We lost him last week to a hemorrhagic stroke.  The bleed in his brain first caused him problems in Sept of 2012.  It was discovered then that on top of the ITP he had a cavernous malformation in the pontine area of his brain stem.  The cat scans showed that there had been   a small amount of bleeding in this area prior to the Sept stroke but because his platelet count was higher that the current typical 2,000 range it was able to heal itself and not cause any serious issues.  In Sept with the low platelets added in it caused the stroke.  He was able to recover from this but it made us both painfully aware that the two competing conditions where deadly.  I will be honest I have been scared ever since.  The week of the 7th of Jan was a rough week.  You can read back and see that his hemoglobin dropped to 5.2 and his white cells where lower than normal.  He was going to the hospital daily for either platelets which stayed around 2,000 or hemoglobin.  On Thursday we went to the hospital for hemoglobin.  Everything seemed somewhat routine as any other day of transfusions however, Ed wasn't feeling well and he was very eager to get home.  He was scheduled to go in Friday for his platelets.  We left the hospital and when we arrived home Ed said he felt like he might be able to go to the bathroom.  A few minutes later he was calling me, he was throwing up and thought he was having an allergic reaction to the transfusion.  I very quickly realized something else was going on and called the ambulance.  Ed had suffered another much worse hemorrhagic stroke and even though they gave him platelets the bleed was so significant that this time we lost him to it.  The doctors said that the throwing up was most likely caused by the stroke itself.  I did some research and this does seem to be true.  The throwing up more than likely also increased the significance of the bleed.  I want to be able to  give advise to others that may be in this situation but I don't know that I can.  I guess the best thing to do is to stay close and ask the person throwing up questions.  This was how I recognized that he wasn't simply throwing up but that something more serious was going on.  He was talking and fine one second and the next he didn't know what month it was.  The moment you notice that call 911.

I just want to give you a quick summary of Ed's other condition that contributed to the stroke, ITP.  This condition has been our life for the last three years, starting with me noticing some unusual petechiae around his ankles.  That led him to asking his doctor about it and from there the diagnoses of ITP was given.  At that point his platelets where anywhere from 20,000 to 80,000 dipping down below 10,000 as time went on.  Ed actually kept a spreadsheet that tracked his blood counts from the beginning.  We looked for something to correlate but nothing really stood out.  This year was rough because his platelets stayed below 10,000 and mostly were right around 2,000.  Just last month, after the 4th bone marrow biopsy I believe, they saw that the bone marrow had depleted to 1% and that discovery led them to diagnose Ed with Aplastic Anemia.  He wrote about the multiple day treatment that we hoped would make a difference in Dec.   The treatment did not show any positive results so the next step was a bone marrow transplant.  We were walking down that path when his life was cut short from the stroke.  I pray that no one has to suffer from these conditions but I know it's out there.  There is not enough research into any of these conditions and somehow we need to keep pushing the medical community to find a better way to treat ITP and associated conditions.   The problem is that ITP really is not a condition but a symptom.  Finding that underlying condition proved to be difficult in Ed's case.  If they could have identified earlier would the outcome of all this been different.  For me it's hard to say but I do know if they had he would not have had to go through the treatments that were unnecessary, like the removal of his spleen.  If you have this or any condition please remember you are your own best advocate.  Push your doctors for answers.  I wish you the best of luck.  Thank you so much to Ed's family and friends for all your love and support to Ed and to me.  ~ Lisa

8 January 2012

Whew.  A few days absent.  A few days with significant occurrences.... to top that, 20mg of oxycodone are kicking in just at this moment.  Pardon the typos.  Let's hope the pain goes away.  The past few days have generated some things to talk about.  Forks in the proverbial road.

I think I saw a giant pink lizard crawling across the floor just now... good thing I have my small flashlight to check.

The basic gist of this week has been to worry about hemoglobin, which isn't going well.  I seem to lose one point each day and drop to 5.2 if i don't keep the blood tranfusions happening.

9 January 2013 (Wednesday)

This week's challenge has been keeping  hemoglobin levels high enough to get by.  I haven't had too much in formation hit me on the diet side (red meat, beans, etc), but the big-impact option with the medical folks to get rest and add blood cells.

I've had a couple of those this week. 

Platelets consistently drop to 2 or 3.  Hemoglobin level dropped quite a bit with the Wednesday reading.  This has kicked off some planning work toward a stem cell replacement.  The doctor originally recommended doing this at City of Hope in the L.A. area.  However, the desire / need for support from family leads him to suggest UCSF.  Stanford is also on the list.  He's contacted them and sent supporting test results and I'm waiting to hear from them.

If this proceeds... here's what to expect.  I'd fly out to SF for a consultation and then return to Maui.  They'll do some testing and evaluation and consultation, etc.  Once back in Maui, I could sustain the transfusions and do other preparation work.  The time after that to wait before going back for the transplant is something like 2-4 weeks assuming I have everything coordinated regarding the donor and such.

The good news is that each private room is provided with real privacy.   It's a one-month period in the hospital combined with two months after where I must maintain close proximity to the hospital.  After that, 

Today's weather seems alright.  Yayyyyyyy.

Blog Note #1

Plucking nose hairs from a low-platelet nose... not a good idea.

3 January 2012

Phase II or hemoglobin boosting is in effect as the red cells flow in.  Had a rough night getting the pain out but finally did it by about midnight.  Nice chunks of solid sleep, but still broken. 

PICC Line report:  It's been nice having this thing.  No pokes... just step up to the plate and hook up the IV or blood sucker.  If pondered on too much, the line can add to an overall general weirdness of this whole process.

2 January 2012

Today begins the 2013 section of my medical journey as I join the oncology center in welcoming new platelets and new blood to my tensed body (as well as some lunch and pie).  As expected, platelets were low at 3.  However, the disappointment came with the low hemoglobin at 6.8 after seeing stable numbers the past few times.  The data does support the lethargy of the past day and tiredness when walking around and such (versus having some other issue going on).

The nurses were kind enough to stick around late for me to get one unit, so tomorrow I'll get the other.  At least the white cells were still above 4 after being 5.2 last time (or something like that).

Prednisone is keeping me at weird hours like it did in the past, but that's tapering off day by day until I'm off of it.

1 January 2013

It would be easy to make a simple resolution to "get better" in 2013... but this is me we're talking about, so maybe it's not so easy.  After all, we don't know the source of my problem in the first place.  I talk a lot about symptoms on here... low blood counts, pains, aches, etc.  There's even a new diagnosis, but it still doesn't get at what triggered or caused the condition in the first place. 

So, recovery is an odd concept.  Does it mean that I get to where the symptoms disappear?  Or, is recovering a condition where the root cause is gone?  If the latter, is it possible to pinpoint what means.  If the root cause is that I had a perfect storm of conditions that allowed my immune system to go rogue, then what are those conditions?  Which is the one that really caused this?  Is it so simple as not having enough sleep? 

I think it's important to assume that the gray area of  undefined turmoil leading to this strange state still started from an unhealthy overall context.  I need to rework the foundation.  A better mental focus.  More alignment of my ambition and my daily activity.  Less breadth and more depth?  Not sue about that yet. 

So, for the new year... the Big 2013... an undefined recipe' for a stronger life foundation.  No clear definition of ingredients yet, but certainty that we're not just talking about the dessert menu.