A Songwriter's Journey

From the time I was born in 1955 until the mid-1960’s I received Fresh Frozen Plasma to help stop my bleeding episodes. I generally received 2 bags at a time. At 250 ml per bag that came to almost 17 fluid ounces – quite a lot of volume for a little feller! It was also a very cumbersome process. From the moment I would feel a “twinge” in my elbow, knee or ankle, Mom would call ahead to the Emergency Room so they could start the paper work. Once we arrived I was sent to the lab where they would stick my finger – it was necessary to cross match my blood type (A+) with the plasma. They also would wait until the blood sample would clot – which never made sense to me – that might take 45 minutes! The bags of plasma took 30 minutes to thaw. I would then be sent back to the ER to administer the plasma. Each bag took from 30 to 45 minutes to drip in – so I had to lay there for up to an hour and a half – again being so young it wasn’t easy to lie still for so long. But my sweet Mother would read me Superman and Legion of Super Heroes comic books while the plasma dripped to keep me occupied! While we waited for the plasma to thaw, she would often take me to the Card Shop and Snack Bar where she would buy me two brownies from local bakery, Van Zetti’s, a glass of milk and a couple of comic books!
They could never be certain how much clotting factor was in each bag of plasma which meant repeating the process the next day for a follow up treatment! Occasionally, it was necessary to go in the middle of the night and looking back I am so thankful for my family being so understanding!
My joints suffered so much damage in those early days due to the extreme amount of time involved and the lack of enough clotting factor getting in me quickly to stop the bleeding!

Cryoprecipitate – mid-1960’s
I remember being told a story of a nurse who worked in a hospital that had hemophilia patients. She happened to notice that as the plasma was slowly dripping in, she saw little white specks floating around in the bottom of the bag. Further analysis found these white specks to be the actual clotting factor that was needed – the rest of the plasma was not. So they came up with a process that spun the liquid down from 250ml to 15-20ml’s per bag. Also each bag contained 80-100 units of clotting factor! In my case I received 8 bags per episode. The process was significantly reduced in time and volume. It took only about 20 minutes to administer and only around 160ml of liquid!
It was around the mid-sixties I started to become interested in music – learning guitar and piano.
I started performing in public in the spring of 1968. I frequently would over use my elbows and need factor. But with the process improved, I’d get the Factor in me quicker resulting in less damage to my joints! I soon was accompanying the choir with my guitar and singing in school talent shows. By the time I reached High School, especially after I learned to drive, I told Mom I could go to the ER by myself! Looking back it was amazing how she always pulled it together to get me to the hospital for treatment! She also didn’t drive so Dad or my older sister Cheryl had to take us! I don’t ever remember hearing anyone complain about the inconvenience!
Factor VIII – Plasma based
Though concentrated Factor VIII was available from the mid-1970’s, I decided to stay with Cryo since the process was working so well, especially having set up a process in Normal, Illinois while I attended college at Illinois State University.
I had been given Factor VIII on different occasions on summer trips in 1974 and 1975. It seemed to work, but didn’t seem to me at the time to be as effective. Looking back it is very possible the ER nurses didn’t give me enough of the Factor.
I began using the concentrated product in May of 1978.
I still use the plasma based clotting factor to this day. There is an artificially created factor that is not from human plasma, but so far I’ve found it to not work as well for me. For others it seems to work well, and I keep trying new products but have returned to Alphanate. As clotting factors are created to work longer between doses, it is my hope to one day be able to use the newer brands.

The new process has changed my life DRAMATICALLY! From the moment I feel a bleed coming on, I can prepare the factor and administer it in around 20 minutes! This photo shows what I now go through in receiving factor.                                                                                          I place a towel on the table to create a sterile field. A 50% dose – shown here is 1830 units – comes in one vial of white powder. It is mixed with a liquid diluent that blends clear. I place the blue end of the transfer device into the dliuent, turn it upside down and into the powder vial, the vacuum sucks the liquid into the powder and after 5 minutes is completely mixed.
Having removed the blue end of the transfer device, I draw the liquid up into a 20ml syringe. After tapping out air bubbles created in the transfer, I tighten the tourniquet around my forearm, clean the surface of my hand with an alcohol swab, then start the IV with a 23 gauge butterfly needle.
After slowly administering the factor via IV push, I discontinue the IV with some 2X2 gauze. Applying pressure for about 5 minutes, I then place a bandaid on the vein site. All in about 20 minutes!
The past few years I’ve given the Factor on a prophylaxis basis every other day! It has reduced normal bleeding episodes from weekly to just a few each year! Life changing!!