Bone marrow SCT Day+55

[kris]

So sorry about being remiss in updates.
I read others post and know we are fortunate and felt compelled to update.
The stress of living six years with MDS was tough. The ups and downs. I must constantly remind myself this is a chronic disease that is specific to each individual no two cases are alike.

Vital organ testing for SCT was completed August 30th.
Admission for SCTransplant was scheduled for September 16th.

Admission was cancelled after arrival due to the fact his pneumonia had not resolved. A necessary precaution but disappointing to say the least. A broncoscopy did not reveal any bacterial infection. No growth of any type. The question was do we do a lung tissue biopsy or treat emperically for fungus. The team decided and Rick agreed to do a month trial on antifungals and then see where he stood. The good news was the treatment was working and the infection was undercontrol, resolving but not yet gone.(CT confirmation)
His cytopenias were getting worse , could be drug effect as wellas he was on Exjade and V-Fend. Rick continued to require 2-3 units PRBC's and close monitoring of his counnts. Platelets danced between 20-24000. He required and received platelets and responded well.(77000) Unfortunately he probably had a blood or platelet reaction as he developed what looked like graft vs host, scarlett red skin on his thighs and back 36 hours after transfusion of 2 units PRBC's and platelets. It was classified as a dermatitis but he immediately became platelet resistant. Additional platelet transfusions drove his counts down. The blood bank did all kinds of testing and matched plt as well with little to no response.

Rick required a PICC line for transplant as a central line/port could not be placed with a platelet count of 16000.

Admitted October 26th for conditioning and on November 1st he was transfused his sisters 10/10 CMV negative stem cells. The events of the days that followed can be read at carepages.com "Lifes_an_Adventure" and That it has been. Going into transplant we knew we would be trading one set of problems for another. To think otherwise would have been foolish. We have not lost the stress of living with a chronic disease but we have greater HOPE!

Rick was fortunate to be discharged Thanksgiving Day. Yes, we had a lot to be thankful for. Today we are still living within minutes of the hospital and Rick requires twice a week visits to see the team at the clinic. Whom we can't sing praises high enough for. Rick has been treated well. The care has been meticulous and very precise. Ct scan shows pneumonia is gone. Counts are good. Hgb 10.8, WbC 3.8, plt 102.

We celebrated Christmas and look forward to the New Year. Also looking forward to day 100 (hopefully going home)but that is just a number...we know we need to look beyond a year, beyond 5 years. Today it is still one day at a time.

Life is not perfect but we are hopeful for a positive future. Rick's 30 day BMB was clear of any MDS and chromosone abnormalities! He is 97% donor and Tcell count is in acceptible range. At this stage who could ask for more.

[Mary4Mike]

I am so happy to hear of Rick's success so far! Praise the Lord! Mike also had a 10/10 -CMV match with his sister. I pray that things will be good going forward. There is life after transplant. Things do get back to normal and there is a point where you don't think about MDS, doctors, hospitals, and bloodwork everyday. Just take this time to rest (both of you) and do what has to be done so that you can get past this phase of the procedure. I am sure that your husband is feeling better already or will be soon.

Enjoy this blessing.

[kris]

Thanks for the reply. It is good to hear things will get better, they are already. just exhausted and wish I could just be a wife. As a caregiver at this stage i feel more like " Nurse ratchet". Don't do this or that. Time for meds, time for a walk, time to eat or drink. At least the Dr appointments and labs are down to weekly.
I know he is ready too. Being home gives us a little autonomy. bets the four walls and being teathered to the hospital and clinic appointments.

yes god is good. I am not complaing, jst venting. Tomorrow will be "sunnier"/

[squirrellypoo]

Thanks for the update - it sounds like he's been through the ringer but hopefully the rockiest roads are behind him now. I think it's especially important for people to share their experiences here so people who are weighing up a transplant choice can see the good, bad and "everything in between" experiences.