Archive for the ‘Hemophilia’ Category

In the late 1980’s – early 1990’s I took four “semesters” of songwriting classes when we lived in the San Fernando Valley area in Los Angeles. I took 2 “semesters” with Jack Segal and 2 with Jason Blume. The one thing both recommended is to “write what you know”! In other words, if you know nothing about being a sailor, writing a song about that would be a struggle if not impossible.
I had also been given this advice by some very kind music publishers from Nashville when I was pitching songs to them in the early 1980’s. So around 1980 I wrote a song called “Out My Window” – a story about a person lay up in a hospital bed unable to walk. Because of my hemophilia, I had spent many weeks and months in such a bed in Decatur and Macon County Hospital in Decatur, IL.
davejudyhosp This photo is me and my sister, Judy in 1972 when I spent many weeks in the hospital because of a swollen left knee that wouldn’t heal.

Another such incident is chronicled in this excerpt from my upcoming auto-biography:
“Second grade, fall of 1962, was life changing. Again, we started the year walking to school. Nine days into the school year I was swinging on our home swing set. In hind sight, after having grown some in height, , the chains to the swings should have been adjusted to raise the seat higher off the ground.

            I used to love to swing as high as I could – each time trying to see over the top of the swing set as I rose on the back side. I would often swing very high and then on the down swoop – jump straight ahead into the grass. It felt as if I was flying!

This particular day, as I pumped my leg on the up swing to increase my speed, my right leg somehow caught on the ground underneath me and my right knee twisted horribly. This is kind of hard to write about as I can still feel the excruciating pain in my mind. Mom used to say she heard me cry out and immediately her heart seemed to stop.

I limped from the swing set into the house crying. My right knee had already started to swell. It wasn’t broken, but it didn’t need to be. With hemophilia, strains of any sort can cause bleeding into the joint, whether in an elbow, knee, hip or ankle.

Mom and Dad rushed me to the hospital where I would spend the rest of the year in and out of – sometimes for 30 days at a time. I can still remember the doctor saying I might never walk again. Well, he didn’t know me! I would show him!”

In all my years of writing songs before 1980 and since, the song, “Out My Window” is the only song that speaks on the subject of my bleeding disorder – though I do not refer to it by name. Another rule of lyric writing is to make the lyric as universal as possible – so I only refer to being in a bed and not being able to walk. Hopefully that will resonate with folks that have had a similar experience or know someone who has been bed ridden – only being able to look out the window hoping to one day return to walking!

A recent music video with lyric of OUT MY WINDOW (click link) is posted on Youtube!

Halloween has always seemed somewhat odd to me as holidays go! Kids dress up as their favorite fictionalhalloween-468026_1920 character going house to house requiring payment of candy in exchange for not “tricking” the homeowners. But one Halloween, when I was only seven years old, gave me an early insight into the kindness of my fellow human beings…..
Second grade, fall of 1962, was life changing! Nine days into the school year I was swinging on our home swing set. I used to love to swing as high as I could – each time trying to see over the top of the swing set as I rose on the back side. I would often swing very high and then on the down swoop – jump straight ahead into the grass. It felt as if I was flying!
This particular day in early September, as I pumped my legs on the up swing to increase my speed, my right leg somehow caught on the ground underneath me and my right knee twisted horribly. Even writing about this I can still feel the excruciating pain in my mind. Mom used to say she heard me cry out from inside the house and immediately her heart seemed to stop.
I limped from the swing set into the house crying. My right knee had already started to swell. It wasn’t broken, but it didn’t need to be. With hemophilia, strains of any sort can cause bleeding into the joint, whether in an elbow, knee, hip or ankle.
Mom and Dad rushed me to the hospital where I would spend the rest of the year in and out of – sometimes for 30 days at a time. I can still remember the doctor saying I would never walk again. Well, he didn’t know me! I would show him!
bats-42379_1280In the midst of this turmoil something amazing happened at Halloween! While I was home in between hospital stays, being unable to walk I naturally could not go “Trick or Treating” with the other kids. That evening it broke my heart to watch Mom go to the door each time a new group of goblins and witches came to get candy. Dad had brought my mattress into the living room floor so I could watch television and though I felt self-conscious – I did want to see the goings on and not be left out.
Well, unknown to me a neighbor boy and friend, Tim Malone, had carried an extra bag with him. As he went door-to-door he explained about my knee and asked people if they would give extra candy so that I might have some for Halloween. When he showed up to give me the bag of candy, I was so surprised and happy! What Tim did for me in bringing the candy is one of the biggest acts of kindness I’ve experienced in my life. Wherever you are Tim, thank you so much!
As odd as Halloween has seemed to me, that unusual Halloween of 1962 will always be my favorite!!
Have a Happy and safe Halloween!!!
Dave

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 rational-use-of-blood-component-24-728bag 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!

CryoCryoprecipitate – 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 basedAlphanate
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.                                                                                         Factor 8 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!!

Today I turn 60 – SIXTY – years old!! When I was born in 1955 in Peoria, Illinois, the average life expectancy of someone with hemophilia was less than 20 years of age!! TWENTY!! Now I am 60!!!
While modern medical advancements were critical to my staying alive, so many people over the years – WAY too many to mention separately – helped to get me here! But there are some I need to mention!
Mom, Dad, sisters Judy and Cheryl and brother, Fred – my family! Without my family, 60 years of age does not happen!
Then there are all the nurses and the interns at Decatur Macon County Hospital up until 1978! From 1978 until his passing in 1987, Dr. Andrew E. Weiss – himself a hemophiliac – taught me so much.
When I was 10 yrs old The Creator of this universe placed my wife Debbie into my life – together we produced our amazing daughter, Meredith!! Now she and husband Rusty have blessed me with more incentive to take care of myself – our grandchildren, Austin Ann, 3 yrs old and Mason, 1!!
I’ve also been incredibly blessed with my lifelong friends always treating me “normal”-never letting me get to feeling sorry for myself! Back in high school and college, even when I would have a swollen elbow or knee, my buddies would come get me to go driving around! Or if I was unable to walk, one friend would come over to our house and we would play several games of chess! Getting me out of the house or keeping my mind occupied was instrumental in speeding up the healing process!
My music also played a role in keeping me going….but that is what the rest of this blog is all about!
So I approach my 61st year with gratitude, with thankfulness and hope!
I must be here for some reason! 
Love you all! Dave

daverainedout 2007

2007 RAINED OUT

2008 Sun in my Face

2008 Sun in my Face

2009 singing to tracks after getting over a broken elbow!

2009 singing to tracks after getting over a broken elbow!

2010 - favorite year

2010 – favorite year

From 2007-2011 I was blessed to have been invited to perform each year at the Decatur Celebration in Decatur, Illinois! As they get ready to head into the 30th year anniversary next weekend of the annual street festival, I think back fondly on the experience – even the first year I got rained out!
Regardless of the year, it literally takes a village (my family) to get me up on that stage! I sang on a relatively small stage set up for local performers that was called the Mini Place Stage, later changed to the Street Jam Stage. Between Debbie nervously making sure I didn’t fall and my son-in-law and brother-in-law helping me up and down the 4 stairs on the side of the stage, I could not have done it without my family! Each year friends I’ve known since childhood would take the time to come see and hear me sing – that has meant so much to me!
My song, “My Decatur My Hometown” had gotten some local press that initially brought about my invitation to perform. I had put together a CD of my original songs called “HOME” and our daughter, Meredith, ran the “Merch Table” selling that as well as t-shirts we had made up. 2009 Celebration merch table

2007 Rained Out!

2007 Rained Out!

Each year was special! In 2007 I was 5 minutes from getting on stage when the clouds opened up and it rained, heavily, for two hours!! Never made it to stage that year!

2008 Sun in my Face

2008 Sun in my Face

In 2008 the sun was in my face most of the time but I did get interviewed by the Herald & Review newspaper regarding the rained out year and my song about Decatur!

2009 singing to tracks after getting over a broken elbow!

2009 singing to tracks after getting over a broken elbow!

2009 I had just healed from a broken left elbow so I sang most of the songs to the music tracks recorded here in Nashville! I did play two songs on the guitar but didn’t feel I could play the whole show! 2009 ended special as well with my wife Debbie, my sister Judy, her husband Rich, my cousin Bryan and his son Tony joining me on stage as the Colvinnaires to sing “My Decatur My Hometown”!

2009 Colvinnaires

2009 Colvinnaires

2010 - favorite year

2010 – favorite year

My favorite year was 2010. They had moved the stage from in front of The Arts Council building to over by The Avon Theater. It seemed more wide open – folks could sit on the grass or at the couple of picnic tables. The stage had a little shade roofing it had not had before. The temperature was warm but not hot as it was the other years.

HOT 2011 final performance at the Celebration

HOT 2011 final performance at the Celebration

After barely getting through the extreme hot temps of 2011 and cutting my performance short by about 10 minutes, I felt it was probably time to call an end to performing. It was getting more difficult getting me up on stage and more difficult getting through a set that I use to be able to perform much longer and more easily!  My elbows were swelling more frequently adding to my decision.    2011 Dave and Debbie

So after a final local performance in Brentwood, TN. (another outdoors- in the heat situation) in August of 2011, I’ve not performed since save for a talent show appearance at our church!
I had surgery on my right elbow in 2012 and just had surgery on the left! Now that both elbows are fixed – maybe we can find some indoor venues where I can more easily share my music?
I will always, however, be grateful and thankful for my years playing at The Decatur Celebration and thankful to my family and friends for helping me do what I love doing!
I have the whole half hour show from my fave year of 2010 here from Youtube for you to watch if you like!
Filmed by Lewis Marien with a little help from his family! 🙂

On July 7th, 2015, the anesthesiologist said, “take deep breaths” as he placed the oxygen mask on my face……
….Wait….Let’s first head back in time to December of 2014. I finished my latest CD of cover songs from the 1960’s and 1970’s called “Musical Reunion” and was promoting it on social media sites. As part of my treatment regimen for my hemophilia, I use prophylactic treatment every other day infusing a 50% dose of my clotting factor – the protein my body is missing causing my hemophilia – that keeps my joints from having bleeds. But recently my left elbow was barely making it, without swelling, to the 48th hour before giving the next dose. We treat intravenously using a 23 gauge butterfly needle and a 20 cc syringe – Debbie and I take turns “sticking me”! This helps my veins have time to heal and increases the number of veins we can use. I’m left handed so I can only use the veins in my right hand – so Debbie uses the left hand/arm veins.
Despite diligent treatment, the elbow kept starting to swell. This went on for 6 months – I kept thinking it would get better.
But, deep in my soul I knew what was ahead for me. …
Right ElbowIn 2012 my right elbow had gotten so bad that giving a 100% dose DAILY could not keep swelling in check. So, my hematologist recommended me to Vanderbilt’s best (my opinion) hand/forearm surgeon to evaluate the elbow. X-rays revealed severe arthritic damage and SURGERY was the only option. The surgery was for a synovectomy with a radial head excision. The synovial membrane contains tons of blood vessels that is the main cause of my joint bleeds. These days surgery is routine for the average person but for a “bleeder” so much has to be considered.
We came up with a plan to dose 100% right before surgery, another 100% 12 hours later – another 12 hours after that then 50% every 12 hours for the next 5 days. Then 100% daily for 5 days followed by 50% doses daily until healed. I’ve been told that a 70% clotting factor level is all that is needed for surgery but for my peace of mind keeping it around 100% was necessary!
As a side note, Vanderbilt Hospital uses only ADVATE as the “clotting factor 8” of choice. For some reason, I have tried several of the recombinant clotting factors but they don’t seem to work as well as the plasma based Alphanate does. So we bring our own factor with us! Debbie mixes it up and adminisers it via the IV access the nurse starts.
Going into surgery I admit I was very nervous! I wasn’t even sure I would ever be able to play my guitar again! While the surgery went well, the first 12 hours post-op were the most pain I have experienced in my life. Considering the thousands of joint bleeds I have had in my life that is saying a lot! They had kept me in the hospital overnight to monitor my clotting levels. Debbie slept in the recliner in the room with me getting my pain meds when needed.
But the next morning I could tell the pain was subsiding – thankfully.  They had placed a cast on that arm that went from my shoulder to my wrist – I asked them to cut out an area so I could access the hand veins in my right hand.
The cast was on a little over a week – we bought a plastic sleeve that covered the cast enabling me to take showers! When the cast came off the elbow was still pretty swollen but hardly any pain! They started me on physical therapy, which helped regain my range of motion.
By the end of the second week post-operative I sat on my piano bench, picked up my Ovation guitar, which I had not been able to play in almost a year and started playing a song! But by the second line of the verse I broke down crying

Dave creating a new song

Writing and recording a new song!

– I WAS able to play my guitar!!!

As a postscript to my story of surgery on my Right Elbow, since October 26th 2012, I have not had a single bleed in that joint!!

(back to July 7th, 2015)…..As I started to lose consciousness from the anesthesia, I reassured myself that this surgery on my left elbow would be worthwhile because of the success of the right elbow sur…ger…ree……
– to be continued in the next post…. Dave