Tammy,

Happy day +1!!!! Praying fervently for you-go cells go!!!!


XOXO

Julie

Okay, Day +24 ... looking back and I really feel and hope the worst is past.

Wasn't really up for filling in details last check in but here are the highlights. I've been worried about posting problems and discouraging anyone looking forward to something similar but one thing I've appreciated out of everyone I've spoken to related to this is honesty over sugar coating what's happening so I want to do the same.

About 12 hours after the transplant I had a bad bout of vomiting + the start of diarrhea that hasn't ended yet. Fever went to 103 so I stayed in ice packs and body wraps for a few days until the high dose cytoxin was given and started bringing fever back down on days +3 and +4.

I also quickly started having blood clots and blood in my urine which has been very painful. Closing my eyes and counting was what I ended up with using to get through the worst of it (sometimes loudly!) The pain has finally started to subside although doc expects I'll be seeing it for awhile. Diarrhea has been very bad and got to the point where it came with constant abdominal pain which was worse than urination pain at most times. Confirmed GVHD in colon with a colonoscopy among other tests. Worked with various pain medicines but most made me vomit. I am glad to say that after confirming the GVHD and aggressively treating it I am feeling much better now on that front and am moving up from popsicle-only through clear liquid diet on to GVHD level 1 diet right now.

Had pretty bad esophageal sores for weeks but those are on the home stretch gone now. No mouth sores ... I was vigilant with ice during relevant chemo and all mouth hygiene, caphosol, etc. Vomiting has been much less than everything else, too, maybe 4-6 times total so I'm counting that a plus!

Blood pressure and blood sugar have been high, explained as due to steroid and treatments for GVHD and other issues. I'm on TPN for nutrients but should start weaning off of it today. Getting insulin regularly but nothing yet needed for blood pressure.

Besides the pain I've felt weak and drained most of the time. Went through a stage of up or down 15 lbs body weight in a single day due to fluid and diet intake changes, etc. but we're past that now. Other minor things have been going on but I believe I've covered the majors.

Engraftment was confirmed around 4/13 and my WBC and HGB have been doing well. PLT don't quite seem to be ready to come in on their own yet. Been getting transfusions of those pretty much every day.

Started really feeling up for walking and getting around yesterday. Looking forward to everything to continue to improve.

Tammy, I send all my best to you and hope you are doing well!

- Ev

Eve

Thank you for the update. I am so sorry you have had such a rough time, but now that they have figured out that it is GVHD I am sure you will feel much better.

You are in my prayers.

Tammy,

Happy Re-Birthday. I pray that you are doing well.

Hugs and prayers

Karen

Oh Ev, I continue to keep you in my prayers. So sorry you've had such a rough time. I cannot say I've had the problems you've had but I'm only day +4. Still time for GVHD to pop up. So far my biggest issue is skin rash underarms from Bulsufan and the horrible Foley catheter during cytoxine. Have thrown up after morphine which was used for a headache that wouldn't quit. No appetite at all but still trying to eat. Walking about an hour a day and sitting in chair most of day. Nervous about things taking turn for the worse. Feels like walking a tight rope, one misstep and it all falls apart. Can't wait to get outta hospital.

Definitely don't dread or expect the worst! I know you are strong and will make it through anything that comes your way.

My target for getting out of the hospital is Monday, Day +28. I still won't be able to go home and there is more healing to do but it is an important day for me. Your time will come soon as well!

Tammy and Ev,

I want to congratulate you both for getting here and for enduring the trials that a transplant brings. It is tough, and it continues to be tough in its own way for a good while. You can do it. You WILL do it.

As good as it is to have the info here on transplant team 2015 and before, it is obvious that every transplant is different. Your two transplants will go into the books for others to review in the future. Thank you for keeping track and taking the time to write your experience.

Tammy, expect the best and continued good progress. Please don't worry about the "what ifs". That is a dark path and it does no good at all. Sounds by all accounts you are doing great!

Ev, I'm sorry to hear yours has been a bumpy road. The hemorrhagic cystitis sounds horrible, but the docs see this and are prepared. I admit that I lived in fear of this for a few days with the Bu/Cy regimen. Either way, you are on the back end of it. I also had horrible diarrhea although it was conditioning related. It was so painful using the bathroom that I was moved to verbal counting and expression to get through it as well. Continue on the upswing and things will get back to normal.

My wife and I pray for you both, along with Tony, Shannon and Andy every evening. I promise to continue.

Keep the updates coming!

John

Discharge planned for Monday or Tuesday! Prayers that nothing pops up before then.

Great news Tammy. I'm praying for discharge

Had lunch at the park Thursday with my brother and sister and went to a matinee movie (almost no one else was there and I stayed gloved and masked). It was a wonderful day! Still working on GVHD but it's not stopping me from getting out. Also finally getting used to blood sugar testing and insulin shots without shaking too bad!

I'm now on Monday/Wednesday/Friday outpatient visits. Getting a bone marrow biopsy tomorrow. Doc says we're looking for 100% donor on a chimerism test.

Looking forward to a visit with my son this Saturday. Been a month and a half since I've seen him in person.

How are you doing, Tammy? Any news on being discharged?

YES!!! Great news for both of you. I am so happy for you guys.

Tammy, did you escape officially?

Ev, don't worry if you don't come back 100% donor chimerism. It is still early and it takes a little while. Remember that lymphocytes hide out in other places besides the marrow and blood. It will take them a while to be made by you.

John

Sooooo....Andy....

Yesterday was six months for me which means you were six months and one day. What is shaking out there?

John

Oh gosh. Wrong thread! Wrong year!

No worries, John. Great news is great news. We love it! How are you doing, Tammy and Ev?

Praying for you daily

Blessings
Julie

Chimerism came back 100% donor and BMB has no signs of leukemia. Another great day!

Platelets are being buggers about coming up BUT that is solidifying in my mind that my Essential Thrombocythemia is gone.

Constantly adjusting steroids to deal with GVHD but it's a small price to pay for such large victories.

My son is graduating kindergarten tonight. So thankful to be here for this day even if I can't attend. Will be seeing him again in person this Saturday.

Ev,

I am basking in your happiness. BRAVO!

Cliff