My Bone Marrow Transplant: Introduction

This daily blog of my bone marow transplant experience is written to all those people out there who have just returned from their doctor's office with the news that they or someone they love need a bone marrow or stem cell transplant.  When I first heard I needed one, I automatically headed to Google to do my own research.  I didn't want to hear just the doctor's perspective on what I would experience, I wanted to hear it from someone who had actually gone through the experience.  My findings were minimal.  The doctors list the plan of attack, upcoming procedures and all the prescription you'll be pumped full of, but that doesn't answer the day to day questions that I knew I would have.

Bone marrow transplants are able to cure many different blood cancer diseases.  My diagnosis falls under the Aplastic Anemia category although a definite disease has not been pinpointed.  Bone Marrow Failure is the go-to lingo.  As a young teenager I learned my platelet count was below the normal range of 150-400 so I was sent to an oncologist for testing and answers.  At the time, my platelets hovered around the 100 mark but over the next twenty years have slowly but surely dwindled away and today my platelets do good to get above 20.  To put it in perspective, a count below 10 is life-threatening.  One minute you're fine, the next minute your brain has started to bleed and it's over for you.  Enter the need for the transplant.    

My doctor in Memphis referred me to Vanderbilt University in Nashville, TN and after an initial meeting in May of 2012, it was determined that I was approved for transplant.  I was told that a search for a donor would be initiated and as soon as one was found, I would have to travel back to Vanderbilt for a round of testing.  After five weeks of waiting a donor was found and I spent two days at Vanderbilt getting tests run to make sure I was in good enough health to handle the transplant.  I hope to blog more about what happened in those two days just to pass on the experience in layman's terms.   

My initial donor backed out about a week before the move to Nashville, but thankfully I had a second perfectly matched donor who had been found and was willing to donate.  A new transplant (or Day Zero) date was scheduled and again, about a week before I was planning to move to Nashville, I was told my new donor had some 'minor medical issues' that needed to be resolved before they could donate.  A third transplant date was scheduled.  If the whole process of waiting for a donor taught me nothing else, it has taught me an extreme amount of patience.  Go with the flow is the only advice I can give to anyone waiting for a donor or having trouble with setting and keeping a transplant date.   Anxiety is not your friend at this time.  Relax and breathe. 

So here it is, August 6, 2012 and my caretaker (my mother) and I have settled in an apartment near the hospital for the next 100 days.  I should only be in the hospital between 30-35 days and the next 60 or so I will be staying in the apartment with my mom.  The transplant plan runs on a timeline: Negative Days, Day Zero, and Days 1-100.  The negative days are for my preparative regimen of chemotherapy and radiation to condition my body to be able to accept the actual transplant on Day Zero.  Days 1-30 are spent in the hospital waiting for engraftment to occur (around Day 14) and be on the look out for Graft versus Host Disease (GvHD).   Around Day 30, patients are usually able to leave the hospital but must stay within 30 miles from the transplant team.  Since I live in north Mississippi, moving to Nashville was necessary.

On August 7th, I was preadmitted to Vanderbilt for the insertion of my Tri-Fusion port near my heart scheduled for the next day.  A small amount of paperwork was handled, labs were taken, and I met with my Nurse Practitioner, and the attending physicians.  At Vanderbilt, the attending transplant physicians are on a rotating schedule.  A team of doctors will handle your care but you may not see the same doctor every day.  Be assured that they are all keeping up with your transplant and know about your and your case.  

On August 8th, I had to receive platelets before the insertion of my port since my platelet count was 17 that day.  The surgery for the port was really no big deal.  I changed into a gown and got settled on a gurney and waited for my turn to be transported back to the surgery room.  There are several different ports that can be used but I was given a Tri-Fusion port wherein three separate lumins (as they are called) will hang out of my chest.  These are just access lines for the nurses to draw blood and administer prescription.  Thankfully, no more needle pokes to the arms!  I was sedated during the whole procedure with what they call twilight sedation.  You can hear people talking but you could not care less what they are saying.  They prepped the area first with Lidocane to numb my skin and I felt a pin prick and sharp pain at first but it went away almost immediately and I honestly didn't feel a thing after that.  The entire process lasted about 30 minutes, most of which was spent prepping the area and covering me from head to foot with paper blankets.  Afterwards, I felt well enough to go eat at a nice restaurant with my parents but soreness kicked during the meal and I just wanted to go relax in my recliner at the apartment. They gave me prescription for pain in case I needed it, and I did take some that night but overall this procedure is not one to be too anxious about.   

Tomorrow, August 9th, is my admittance to the hospital date and the beginning of my conditioning regimen with chemotherapy.  

So far, so good!