My Bout With MDS

My Schedule

  

2005

Friday, April 1

Move to Rochester - done

Thursday, April 7

Blood drawn for over 15 different test, urine test, bone marrow biopsy, 24 hr. urine test, stool sample, electrocardiogram, pulmonary function tests, social worker meeting, chest and sinus xrays, echocardiogram - done

Friday, April 8

Meeting with nurse in transplant unit, spinal tap - done

Saturday, April 9

Blood test to determine hemoglobin level (determined I needed a transfusion - done

Sunday, April 10

Blood transfusion of two units - done

Monday, April 11

Meeting with oral surgeon to see if any mouth infections or decay, meeting with psychologist to see if Deb and I are up to the mental challenge - done

Tuesday, April 12

Meeting with nurse practitioner in transplant center to explain entire process, meeting with surgeon that will install Hickman venous catheter in my chest, meeting with nurse practitioner and transplant doctor to summarize test results and review next steps, blood drawn for total blood counts again to prepare for chemo - done

Wednesday, April 13

Begin wearing mask any time outside the apartment, begin taking Actigall, which helps prevent liver injury from the chemotherapy done

Friday, April 15

Total blood test, meet with doctor that is a "fellow", meeting with nurse practitioner and transplant doctor - done

Sunday, April 17

Begin Dilantin treatment to prevent seizures from chemo, hemoglobin and platelet transfusion in the afternoon into evening done

Monday, April 18

Continued Dilantin treatment, surgery to implant Hickman IV port in my chest, pre-chemo haircut, check into transplant unit in hospital at 8:00pm - confirm internet access - done

Tuesday, April 19

Begin chemo with Busulfan and many other precautionary drugs done

Wednesday, April 20

Continue chemo with Busulfan - done

Thursday, April 21

Continue chemo with Busulfan - done

Friday, April 22

Continue chemo with Busulfan, last day of Dilantin - done

Saturday, April 23

Continue chemo with Cytoxan, install urinary catheter to continuously flush bladder - done

Sunday, April 24

Continue chemo with Cytoxan (last day of chemo) and bladder flush - done

Monday, April 25

Rest Day!! Urinary catheter removed, anti-rejection drug. Cyclosporin begins, also need a red blood cell transfusion - done

 

Cyclosporin begins, also need a red blood cell transfusion - done

Tuesday, April 26

My international donor cells will not arrive until Wednesday morning. So, I will have an easy day of rest and a pass to leave the hospital for a while - done

Wednesday, April 27

STEM CELL TRANSPLANT DAY - The stem cells should arrive at theRochester airport about 10:30am. Then, they will be inspected by the Mayo Lab before bringing to me and transfusing into me under close supervision for possible reactions - done

Thursday, April 28 - Day 1

Begin Methotrexate and other anti-rejection medicines to reduce problems with new cells. Got released from the hospital at 2:30pm - done

Friday, April 29 - Day 2

Move to outpatient management. All drugs at this point are to reduce risk of complications and help manage nausea and diarrhea.

Saturday, April 30 Day 3

Report to hospital at 12:30pm. - Daily outpatient checks at the hospital for complications, possibly move back into hospital if lengthy treatment needed. But can most likely stay in apartment. Got second of small dose chemo to help Graft VS Host disease - done

Sunday, May 1 (Day 4) thru May 3 (Day 6)

Daily management of condition. Process is to report change, discuss alternatives, switch to new strategy and then note progress. During this time, suffered from nausea, dehydration, swollen tongue, skin rash, loss of some body hair, and fevers. Changed many drugs to others that may work better or have reduced side effects. Readmitted to hospital - done

About Day 15

Should be producing my own blood by now - starting with white blood cells, then red and finally platelets - begun

Day 18

Released from hospital to outpatient status - done

About Day 27-100

May begin to see symptoms of graft versus host disease - two bouts with skin rash so far

About Day 50

Most likely earliest date to move home to Orono, but report to Mayo twice a week - been home every night since June 9th (Day 43)

About Day 100

Earliest day to discontinue weekly checkups at Mayo - this finally happened at about January 12th, 2006 or Day 260.

Day 274

My doctor scheduled my next appointment for one month away my longest break!

April 2006 - About 1 Year

(May Should begin to feel normal again, although energy level may never return to 100%

© Dan McGlynn