Posts Tagged ‘Hemophilia’

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!


We lived in the San Fernando Valley from February, 1988 until September 1994 when we made the cross country trek to Nashville, TN! Immediately after the ’94 quake, I wrote the following detailed account of how the quake effected us and how we dealt with the event! The only thing I left out was my having hemophilia – at the point where I still was keeping it a secret – especially with my job as Assistant Vice President of the FNMA unit of Investor Accounting at Countrywide funding.
For images, I found this link:
So here is what happened……

January 17, 1994
I’m not sure who will read this but I just need to try and capture the feelings of this one day before too much time passes. So, if my voices, persons, tenses or order of events are not consistent sorry. This is / was a confusing time so any variances in writing are probably fitting anyway.
The Players- Dave, Debbie, Meredith, and Lycia (lee-sha) (Meredith’s friend), and Butterscotch (the cat).

1:25 a.m. (all tines are PST)
Nature called so I got up to answer. While I was up I took some pain medication to help me go back to sleep. After all, it had only been 5 days since my eye surgery to repair a detached retina in my right eye. To replace the fluid lost in my eye the doctor injected a gaseous bubble to hold everything in place.
However to make sure the eye healed correctly with the bubble, I had to hang my head downward for two hours each morning and two hours each evening and while I slept at night. With my arthritis, it is very difficult to sleep in this position so chemical
aid was helpful in getting some sleep. We could all sleep in, with me off from work because of my eye, Debbie was still job hunting, and the girls were not back in school yet.

4:31 a.m.

We knew immediately what was happening though we had been sound asleep……..
It had been less than 18 months since the pair of Landers (7.4) and Big Bear (6.6) quakes. This was different though. In the Landers quake the house shook violently, the lights flickered, but there was no damage in Canoga Park or our house. Only one picture fell. This WAS different. It felt as if the whole house was moving up and down and back and forth. The noise was deafening. The groan of the wood frame of the house, the crashing sound of THINGS- though we knew not what. The closet doors slammed open and the clothes on the racks came crashing down.
Debbie and I could hear the girls yelling in Meredith’s bedroom. The shaking kept going on and on. I could hear a primal scream nearby. I looked but it wasn’t Debbie. It was then I realized the primal scream was coming from me. Debbie grabbed me and said – ARNIE, calm down.
At some point we could tell it was ending. The power had gone off so it was dark and eerily quiet. “THAT WAS THE BIG ONE!” I said. Debbie agreed at that point. I also exclaimed, “We are getting the hell out of California!!” There was the sound of car alarms outside that sounded as if we were out there as well.
We could hear police / emergency vehicle sirens in the distance. I sat up on the edge of the bed. I could not find my glasses!! They had been thrown three feet from the night stand. The ground was still moving as if we were on the water in a boat – gently rocking and swaying. Debbie told me to stay put, since I couldn’t see very well anyway, and she went to get the girls. As she felt her way down the hallway she was stopped
Suddenly – a door was in her way. “There is not supposed to be a door here”, she later said in recounting the feeling to me. The quake had opened all the closet doors. She got the girls’ room and stood in the doorway.
Then we felt it start again!!
I yelled, “Hold on!” Debbie told the girls to stay in the bed and wait for it to die down. The earth shook the rest of the day about every five minutes or so. We had over 150 quakes that day alone that registered over 3.0 in magnitude.
I look back in amazement, but not surprise, at what happened next. Debbie jumped into a take charge mode and started getting everything we would need and centrally located in our bedroom. She had found flashlights, water, snacks, and supplies. She placed everything in a clothes hamper. She had been so strong throughout my eye surgery (another short story itself) that it was hard to believe she had anything left for this.
The girls had made a venture through the rest of the house after they put shoes on to protect their feet. I got dressed and went to the bathroom. It was a mess. Everything in the medicine cabinet was in the sink, on the floor, or in drawers that had thrown themselves open.
We had NO water.
At some point they guided me through the rest of the house. The first room I saw was the office. The bookshelf had fallen forward. Both computer monitors had fallen off the desk. It was impossible to get to the other side of the room. One thing we noticed was that every window in the house (the sliding kind) had opened though they had been locked.
The main bathroom was in worse shape than ours. The top to the toilet had been thrown off and broke into two pieces. Water had spilled out of the tank. The glass shower
door, although unbroken, had come off track and fell into the tub.
The living room had a mixture of destruction and normalcy. Everything on a wall came down. A wooden battery operated clock my sister had given us did not fall off the fireplace but stopped at 4:31. Plants had fallen and dirt was everywhere. The entertainment center with the TV and VCR had not moved. The stereo had fallen forward, the glass doors popped off but did not shatter.
The kitchen had broken glasses all over. Cabinets had opened and emptied. The battery operated clock in the kitchen was still on the wall, but the battery had popped out
and the clock read 4:31.
We opened the door leading from the kitchen to the attached garage. The Dodge Dynasty had moved at least three inches and wedged underneath a workbench. A stack of shelves had fallen on our New Yorker and what looked like thirty five years of dust was all over everything. A cross beam in the ceiling to the garage had snapped in two.

5:15 a.m.
Early reports pegged the quake at a 6.6 magnitude (later modified to 6.8). 6.6!!! it felt more like 66.6!!!(I know, there is no such thing.) While this was the same magnitude as the Big Bear quake, Big Bear is 100 miles from Chatsworth and the epicenter for the Northridge quake was about 4-5 miles from our house.
It was somewhere around this time we decided to go outside. We went to open the front screen door but the house had shifted and jammed the door. For a quick second I panicked. I think it was 12 year old Meredith who gave it a shove open. It was still dark and some neighbors had gathered at the end of our driveway around a small 5 inch TV.
Our next door neighbor had cut his head during the quake so Debbie got some bandages and fixed him up. He went with her to go check our gas main to see if it was leaking( it wasn’t), The girls went down the street to check on ‘TODD’ a boy they knew. So here I am, outside in the dark, standing around this television with people I’ve never spoken to before. Anyone who knows what a great small talker I am (not) knows what a stellar moment in history this was.
One of the neighbors asked if I hurt my eye (still patched) in the quake. In a lame attempt at humor I said, “No, I had surgery for a detached retina last Wednesday and now this! Ha, Ha!” Then again there was silence. Outside you can still feel the earth move however, it doesn’t seem so bad. I guess since you can’t hear rattling and creaking of the house it diminishes the effect on the senses.
With Debbie and the girls gathered together again we went back inside and I watched my little 1&1/2 inch TV I got for Christmas.

7 a.m.
There was something comforting in the sunrise. Our security of sleep and the nighttime had been violated. We spent some more time outside and our neighbors helped us get the cars out of the garage.
Meredith and I tried to go back to sleep and Debbie and Lycia cleaned up the kitchen. The earth continued to move every few minutes.

8:30 a.m.
All of us had laid down when we heard some voices outside and the doorbell rang. It was Lycia’s parents, two brothers, and two dogs. The road in front of their Reseda house had buckled open and broke a natural gas main. The authorities evacuated the area so they had to leave their house. They had suffered much worse damage being practically on the epicenter.
Though we had a houseful, it was nice not being alone. We felt isolated with no phones and we couldn’t go anywhere.

10 a.m.
At some point around this time we boiled some water to make instant coffee. Lycia’s father and I had some cereal. We had not smelled a gas leak so our range still worked and we could cook if we wanted.
We knew that family would have heard about the quake so we started trying to make a phone call back to Illinois but to no success. The phones were on what they called ‘slow dial-tone’. Because the lines were crowded, we would have to wait several minutes for a dial tone. Even when we would get a dial tone the call would either be busy or revert back to the dial tone. We kept trying all day taking turns.

12 noon.
As part of my recovery from eye surgery I was supposed to lay my head down for two hours in the morning and afternoon. I sat on the loveseat leaning towards the arm with my head down. Always, just as I would drift off to sleep, the earth would roll. Would it ever stop?

4 p.m.
Lycia’s father and brothers had gone back to their house to see if they could return. The gas leak had been stopped, but they still had no utilities. They brought some frozen chicken breasts back and other food. I fired up the Weber, eye patch and all, and tried to get supper cooked before the sun went down. We still had no electricity. I remember a kind of fear as they drove away, it was just the three of us now and it was dark.
Debbie’s friend, Carolyn from Ventura, got through to us by phone around 4:30 p.m. Debbie asked her to try to reach her brother Dave in Escondido so he could call all back in Illinois. She was able to get through.

8:30 p.m.
When the quake hit and the power went off the air filter in the goldfish tank seemed to back up. The water became very murky. Chubs, the goldfish, had been active but obviously slowing down during the day. By this time he was floating at the top and barely moving. We decided to use some of our remaining bottled water and transfer him to a smaller bowl. He was lifeless. Once every15 seconds or so his mouth would move. It looked like Chubs would become a quake statistic.
Meredith was trying the phone and got through to my sister, Judy. I was so excited and relieved I went running barefoot into the kitchen to pick up the phone. I stepped on a sliver of glass.
It was so comforting to hear someone from my family. While I talked to Judy I would shine the flashlight at Chubs to try to get some response. Finally near the end of the conversation he opened his mouth and moved slightly. A little after10 p.m. we got our power back so Debbie and I hurried to clean the tank and put fresh water in. We hooked up the air filter and put him back in. He dropped to the bottom and just sort of sat there. We fully expected him to be dead the next day, but I’m pleased to report about halfway through the 18th he came out of shock and started swimming around!!!

Earthquake related facts:
* We had to boil our water, which returned on Thursday the 20th for about 10 days
* To flush the toilet we had to get buckets of water from the neighbor’s pool and pour it down the bowl
* As of 3/20/94 we have had over 5,000 aftershocks.
* The cinder block walls between the properties had come tumbling down.
The contractor’s estimate to fix the wall was $15,000.
* 34,500 homes/apartments were destroyed or made uninhabitable..
About six weeks after the main jolt Debbie took me on a drive around the San Fernando Valley. With my eye surgery and all I had only been out of the house to go to work or the doctor’s office and not really seen the damage except on TV.
It was the saddest trip I’ve ever taken. House after house had damage of some sort. Either fallen chimneys or block walls or both. Northridge Mall looked as if it had been bombed. City block after city block of apartment buildings in Northridge were boarded up with red signs on the front. Where were these people living now?
Then we saw the apartment complex called Northridge Meadows where the 16 people had been crushed to death. I don’t think words can describe the feeling when you look at a two story building that used to be three stories. To make matters worse it has become a tourist attraction. There were dozens of people walking around taking pictures. There was a vendor on the corner selling ‘I survived the Northridge quake’ T-shirts.

Yes, driving around made me sad. But it also made me realize that despite all we had been through….
We were the lucky ones.
End of story

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!!!

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


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