txplumber's Blog

I have been diagnosed with a life threatening disease, myelodysplastic syndrome.  I am an outpatient of the hematology department at Ben Taub General Hospital in Houston, Texas.  Monday I had a scheduled appointment at 2:15 pm.  My blood was drawn and we found my HGB blood count to be 6.1.  The average is 12.0.  I was in desperate need of a blood transfusion.  With an impending tropical storm approaching, our city was preparing for the worst.  A Tuesday transfusion was ruled out because the clinic was closing in anticipation of Eduardo.  Hematology referred me for admission.  I was seen by Dr. Collins.  He examined and than processed my admission paper work.  I was a patient on the fifth floor section A.  I was met at the admission office by a medical student of the Blue Team, Lisa.  She saw me to my room and answered all my questions.  I was drinking ice water and laying in bed in time to watch the 6:00 news.

There have been negative and unpleasant experiences at our county health facilities.  Fortunately for me, that is not my story.  I was prepped for transfusion and set to receive three pints of type O+ blood. Many thanks to the selfless volunteers that give of their time and themselves so that I can continue to live - Thank you blood donors without you this would be an obituary you are reading.  The transfusions were administered without complications.  When my new blood level was checked I was only at 7.8.  Still below the level I need to walk and breathe.  Two more pints were ordered and Monday blurred into Tuesday.  My level rose to 9.2, a good level.  At this time the other two hospitals I have been admitted to would have prepared me for discharge.

Members of the Blue Team were thorough and investigative.  I thought I had a sprain in my thigh/groin area that had bothered me for a few days, thinking that it was from lying in bed.  I was reluctant to say anything but Lisa's attention to detail got me to open up and say something.  My white blood cell counts are under 2.0 which means I have a weakened immune system. Dr Collins examined me and quickly noticed it was an abcess and called for a surgery consultation.  Late Tuesday night I was scheduled for an incision & drainage.  Two surgeons were in and out within an hour.  This is a painful process that made my eyes water and silently scream for my "mommy".  There is no man that can go through this and say it is pleasant.

On Wednesday morning my blood level had me feeling pretty good.  I would have been 100% had it not been for a one inch incision made in my groin area.  I needed to shower and change my dressing.  Pulling tape off of the above described region is a spine tingling experience.  When it came time to change the dressing I was helped by nurse H. Ali.  Her personality and profesionalism takes your mind off the fact that you are laying nude and having gauze packed inside your wound in a first rate trauma center.  I was ready for discharge on Wednesday evening.  Dr. Collins again performed an exam and was uncomfortable releasing me.  I was administered more antibiotics and held for a surgical exam to be done this morning.  My cat scan as well as blood cultures came back negative. The surgeon examined and cleared me.  I picked up prescriptions for antibiotics and pain.  I was at my parents home in time to watch Jeopardy!.

There are alot of good things I have to say about my time at Ben Taub.  The most important is the fact that had the doctors and staff not shown the compassion that they did, I would have been sent home with an infection that may have ended my life.  Battling with this disease is a taxing experience.  The last 4 days and 3 nights I was treated like a guest in a welcoming host's home not like a person that does not have adequate health insurance.  Like I previously stated, there is more good to say and I will later on my website at www.IHaveMDS.com .  I am trying to finish this message so I can send it to the Houston Chronicle along with everyone else in my address book.  I ask you to share this message so that residents of Harris County know that if the time comes and you have to go to Ben Taub, you will be treated to excellent health care regardless of your tax bracket.

The bracelets pictured on the homepage are now in. Your contributions help in so many ways.  Please contact Des (832) 233-0983 or Elle (832) 863-7949 for more information. 

Thank you,

Roger Contreras

To whom it may concern, 

      I never planned on visiting your establishment. I drove by it numerous times but never thought twice about stopping. Never had a reason to. That changed a few months ago. It was time for me to go in. I did not choose to stop there, my gas gauge chose for me. With the rising cost of fuel, for me to have more than a 1/4 tank of gas would be a luxury. So I pulled into the emergency room. Blood transfusions were required. Your staff treated me well, there is not much they can do for me other than transfuse me. Which they did. When I walked into the hospital it feels like my chest may explode from breathing so hard and my skin color is pale white. Without blood in my system, I also lack oxygen, a key ingredient in living. After the transfusion my color returns and the breathing return to normal, I am soon discharged.

      I soon enrolled in the county healthcare system. With all the patients they attend to, their care and knowledge is most impressive. I have made every appointment and followed every order but there has been a time that I have felt the loss of breath returning and I was to far to make it to the county. I again returned your hospital. The diagnosis was known so it was a matter of getting my blood count and typed and screened for transfusion. It is a relatively commom procedure. Other than taking my vitals at the beginning of the transfusion I do not see much staff. I am than discharged.

     With the disease that is eating away at me I am unable to work. It is an achievement to go to the grocery store. Any strenuous activity depletes my blood supply that much faster. I have lost 3 pints of blood in less than 6 days. Needless to say this does not bode well for my finances. I receive notices from my bank alerting me to the fact that my account is below $20.00. This I am aware of, months ago it was different. Now I am receiving bills from the hospital. My question is this, how is an unemployed, unable to work person supposed to pay a $17,000 hospital visit bill? If that isn't a kick in the pants now I am receiving billing statements from the x-ray dept, doctors, and I think there was even one from the landscape department. I am a proud man and pay as I go that is why I have no credit cards. If I wanted or needed something I paid cash. If I did not have the cash than I must not have needed it that bad. At the rate these bills keep coming in not even the lottery could help me get out from under this debt. Is there any assistance out there? Because at this point the 2-6 statements I receive daily are doing nothing but harming the environment. If I had any source of income I would try to make payment arrangements, but you can not get blood out of a turnip, or me for that matter.

The pulp and paper industry is the single largest consumer of water used in industrial activities in developed countries, and it’s the third-largest industrial greenhouse gas emitter (after the chemical and steel industries).

The average adult receives 41 pounds of junk mail each year (about 560 pieces). 44% goes to the landfill unopened.

On average, we receive 10.8 pieces of junk mail a week, compared to only 1.5 personal letters.

More than 62 billion pieces (4 million tons) of junk mail are produced each year.

The majority of household waste consists of junk mail.

40% of the solid mass that makes up our landfills is paper and paperboard waste.

Junk mail inks have high concentrations of heavy metals, making the paper difficult to recycle.

$320 million of local taxes are used to dispose of junk mail each year.

California’s state and local governments spend $500,000 a year collecting and disposing of AOL’s direct mail disks alone.

Transporting junk mail costs $550 million a year. 

                                       

  When I resume working or win the lotto I will make arrangements to take care of these charges until than your continued mailings are just killing our trees.

Please visit my website at www.IHaveMDS.com you can subscribe there.

                                   

In less than 23 hours I will be back at the doctors office.  It is 3 am. and I am wide awake, again.  It has happened all week.  Maybe it is a sign, was I born at this time? Should I be awake for a reason? Perhaps to find my insomniac significant other?  Long story short, I am awake.

The little one above is my niece.  She is growing up quick.  Although she is young and in the process of potty training, I have started to read with her.  She has her own books and lays down next to me to read.  Any new book must first be bitten, I think that is how she judges whether or not she likes it.  If it passes the bite test than she will settle down with a drink and read.  We have been concentrating on official Scrabble words that start with the letter "Q" but do not use "U".

When she starts school and is asked to spell "cat" she may very well be the first child to ask for a definition.  I can hear her now saying something like "Oh, I thought maybe you meant the evergreen bush. Which by the way is spelled, Q-A-T".

Her little mind is like a sponge, mimiccing all that you do. Inquisitive.  Spending time with her takes my mind away from some of the problems I am going through.  Thinking about her, instead of the needles that I am going to have to endure soon, may help me go back to sleep. 

For those of you out there with inquisitive minds I have included a list of words beginning with "Q" and not using "U".  qabala, qadi, qaid, qanat, qat, qi, qindar, qintar, qiviut, qoph.  I am sure I probably have more reading time available than most of you, but these are helpful words to commit to memory.  You never know when you will be on Jeopardy or in an intense game of Scrabble.

With this new format I went to, I am able to title my entries as well as archive them.  Readers can comment on each topic.  Most important, you are now able to subscribe to these narrations by going to the the "Subscribe" box on the left and entering your email.

I am at my parents home and I saw some watermelon and porkchops in the fridge.  Time for a mid-Morning snack.  The website is still changing, bear with me.  I am thinking of putting a dating profile of myself on here. See if I can't land me a date.  Let women subscribe and find I am the only available match. Yep, that sounds like a plan.  Will get started on my next sleepless night. Thank you all for the letters and phone calls of support.

Goodnight Ali, love "E-M-E".

Please visit my website at www.IHaveMDS.com

Please visit and book mark my website at www.IHaveMDS.com don't forget to visit the message board and sign the guestbook.  Thank you.

July 23, 2008 5:11 am.
     I took my third dose of my chemotherapy medication 46 minutes ago.  After the first two pills I felt pretty good.  I am adjusting the time I take it so that it will be taken before sleep.  Waking up at 4pm yesterday I took a shower, a long one.  I shampooed, rinsed, repeated and still was not out of breath.  It was time to push it to the limit, I conditioned.  I was even able to scrub off the tape residue from where they insert the IV.  All this and I was still standing, not dizzy, not gasping for air.  Feeling the way you probably do everyday, it was a small step for me.  The lady of the house noticed a difference in my appearance and ordered pizza for dinner.  I ate 5 slices of large Domino's Meatza.  This is something else thathas not been done in awhile.  My appetite is coming back.  That means weekend at Mom's for home made chile relenos, menudo, caldo de res or all of the above.
      This first round of chemo is 28 days long and I am barely into day 3, but if the first 2 days are any indication, the future just got brighter.  If hurricane Dolly leaves us alone and I can wake up at a decent hour I may venture out to a barber, than who knows maybe even shave these 12 hairs on my face I try to pass off as a beard.  I love you, Elle. What a difference a pill makes, granted it is a pill in the neighborhood of a few hundred dollars, but it makes a difference.
       I am wide awake, this is a wierd feeling at this hour.  I could keep typing but I have not read in awhile.  There is a new author that I started, not a real page burner but it was a loaner book.  I am going to start something like it, go to the homepage to find out more. Did anyone catch my subliminal message in the paragraphs above? Thanks for reading.
    
                                                   
                                              July 21, 2008 1:00 pm.
     Today was the scheduled delivery date of my much anticipated drug.  I waited by the door like a puppy awaiting his owner.  I jumped to my feet at the passing of each vehicle.  FedEx arrived about noon.  I ripped open the package, read the warnings and took my first pill.  This prescription can save my life.  I learned alot in the first 100 days of this disease.  I want my life back.  I want to go to work and provide for my daughter, something I did not always do in the past (for various reasons).  My parents need to be proud again, they instilled good values and taught me well, they deserve more from me.  I want my sister not to worry about me (as much) she has MANY children of her own and needs to spend her time with them, not worrying about her brothers blood count.  These are just some of the things I want to do when I can walk around the block again.  When I can go an entire week without the need of a blood transfusion.  One of the biggest task I want to start and know I will never accomplish is to repay the kindness, and generosity of my two cousins Mr & Mrs Maradiaga.
   I would like to thank you for the comments & emails.  They do indeed brighten my day.  I am getting tired again, so I am signing off for now.  Take a moment to read our message board on the "Your Stories" page.  I will be back. 

The First 100 – My introduction to purgatory on earth
July 21, 2008 3:00 am.

      Four months ago I was a plumbing superintendant overseeing a multi-million dollar project.  I recruited my staff, trained, supervised, and mentored them.  Maintaining labor and material costs while maximizing productivity of a quality product were traits that drove me.  Adulation from peers, and superiors was something I strived for.  My experience and training in the field is well noted.   Pressure is part of the project.  Deadlines, inspections, manpower issues - stress was breath.  I ate antacids and Tylenols throughout the day to relieve the heartburn and strain on my chest. This is not a cover letter, or an introduction to my resume.  It is a statement of fact as to what I was before April 10, 2008. 

 

 

 

 

 

     This was a day that I started to work in the yard.  I went to bring in the trash can and made it from the driveway to the garage.  There is where my knees buckled and I began breathing hard.  Light headed & dizzy I went inside to get a glass of water.  I went online and found a clinic in the Tomball area, asked the cost, $54.00 for an initial visit.  With $54.00 in my wallet I drove to the clinic.  Once there the doctor saw me and immediately told me that I could not be helped there.  I had to go to the emergency room.  They offered transportation but I turned it down deciding to drive myself.  Having to see a doctor is something I had been avoiding.  When I had my last birthday a few of the ladies in my family brought up the topic of a routine visit.  I said I would look into it.  Who takes the time to go some place that they are afraid of?  Needless to say, I had not seen a doctor in a few decades prior to this date.   Now I would be seeing more than any person should see in a lifetime.

 

 

 

 

 

      When the nurse had me in the observation room my heart was pounding, I was gasping for air and my arms were starting to tingle.  The response of the emergency room staff was incredible.  They ran an EKG, catscan, X-rays.  The whole time I am laying on a gurney in wranglers and work boots you overhear the possible diagnosis.  Heart attack, stroke, ruptured ulcer.  I let them take off my shirt for the tests but I was keeping my pants and boots on.  All that I needed was maybe some asthma medicine or a pill, even a shot but I was not staying there.  (I think that was a run on sentence or improper grammar, but when you saw all the medical drama going on at the time you would understand why my English skills were not up to par.)  A male nurse walked by and noticed my skin color; he suggested that I may be hemorrhaging.  That was something that had not been suggested so blood was drawn.  After an immediate reading they found my HGB level to be at 5.0, the norm is 14.0.  With no blood in my system I had no oxygen.  I was typed & matched and prepped for my first blood transfusion.

 

 

 

 

 

     Since that day I have been living in limbo.  It took months to find the cause of my illness and I still await a cure.  FedEx should deliver a much anticipated prescription drug later today.  It will not cure me but should extend the period of time between blood transfusions.  I received my 26th pint of blood yesterday.  Actually it was 4 pints of type O positive administered intravenously within a 24 hour period.  The only cure is a bone marrow transplant.  My doctor told me that they could not begin a donor match until funding for the transplant was set.   

 

 

 

 

 

     I started this message with so many thoughts that I wanted to put out there.  My mind keeps wandering.  In 2 ½ hours I should be waking up and getting ready for work.  This is the summer, the hottest time of the year.  You can work an endless amount of hours.  The sun and heat never bothered me.  I want to put my boots back on and get muddy.  Sweat dripping down the spine of my back, bones aching that is what I want to be doing this afternoon.  Not waiting on a FedEx truck.  I do not make plans anymore; no one knows when I will need another transfusion or when I will sleep 20 hours in one day.  Frustration has been an emotion I am learning to live with.  There is a cure out there but it appears to be out of my reach.  Loneliness is a constant factor.  I have the love and support of family but that is different from sharing a precious moment with a special woman.  Insomnia has set in, I hope to see the sun come up and than I hope to take the trash can out to the curb.  That is my goal for today. Tomorrow is a lifetime away.  Please take a moment to read more of my story at www.IHaveMDS.com

 

 

 

 

 

                 July 12, 2008 2:34 am.

     Saturday am.  So much to say.  Do not know where to start. Am going to change the pace and make myself feel good.  I had recieved an email from my daughter.  Without her permission I am going to repost it here. I like reading it.

     There is no other man better than my daddy.He's one of a kind, a man that will last forever.He gives me the example of what to look for in a young man.He's the best father ever; I could never ask for better. He takes every gray and dark day and makes it better than ever.

      He fulfills all my needs and helps me when I'm in need.My daddy is so wounderful no one could ever compare to the person he's been to me in my life. He's more than just a dad, he's a wonderful man.If I had a choice to ask for more, there wouldn't be a single thing I would wish for.

      My dad is the best gift I've ever had and will ever receive. No other's love has been better and will never compare to the love I HAVE for my daddy! When the day comes for me to get married,it will be someone similar to my daddy! 

I love you, Dad.




                       July 9, 2008 1:29 am.
    Monday was my appointment with the Hematology dept.  I checked in with a 6.8 hgb level.  Iwas admitted for the night.  Got a refill with numbers 20, 21 and my 22nd pint of "the O+" I have now had more pints of this than I have of Bud Lite over the last 3 months.  My final results came in, I tested negative for PNH ( Paroxysmal Nocturnal Hemoglobinuria (PNH) is a disorder in which the most immature of the blood forming cells in the bone marrow, the stem cells, are lacking proteins that prevent them from being destroyed by the body) this was the last remaining test needed to conclude my diagnosis. 

     I have MDS. Nothing  else just a rare bone disorder that can only be cured by a bone marrow transplant.  I can not imagine what the total cost for the procedure would be.  That is why I am at the mercy of the hospital to schedule and accept an uninsured patient.  At the same time I need to find a donor.  My sister is a possible match, she would have to be tested.  How do you ask someone to save your life?  Your kid sister at that.  I used to be the big brother. I protected her from everything frogs, bugs, boys while growing up. Over the last few years she has become my protector, adviser, friend.  If there is not a match I am entered into the national data bank. It could be months until the procedure is performed.  I am now receiving transfusion at a weekly pace.  The needles scare the BLEEP out of me and I still cover my eyes  and want to cry.  I can not take much more of the poking and probing.  What I am going through can not be normal.

       There is a medication available that may extend the time between transfusions, Revlimid this drug is very expensive.  Over $200.00 a pill that must be taken daily. Good news arrives.  Wearing a gown with my boxers exposed and a needle in my arm I receive a great phone call.  It is long distance, I answer and it is a medical company.  My first thought is that my bill collectors are on the prowl, looking for cash.  I just remembered a phrase.  Squeeze blood out of a turnip. Kind of funny and appropriate.  I have neither cash or blood. Back to the phone call. I said " This is he speaking" and waited for the onslaught.  Much to my suprise, it was the offices of Revlimid.  they received my application from the Doctor at Ben Taub and approved me for my first months supply of Revlimid.  If all goes well I can take my first pill by Monday.  Good news can strike at any time.  I have not been praying as much as should, I want to and am always thinking in my head but have not got down on my knees. I should have, I will.  I have family, friends and people I have yet to formally meet praying for me.  The prayers are being answered.  My hope and faith in my recovery has been rejuvenated.

      When I am in need of a blood transfusion, it depletes my body of oxygen.  Shortness of breath is the main symptom I suffer.  Being moody, irritable and tired is another.  I am basically experiencing "that time of the month."  I apologize and thank my cousins for seeing me through this time.

 

 

 

 

 

Independence Day 2008.


Our legal separation from Great Britain occurred on July 2, 1776. Congress debated and revised the Declaration, finally approving it on July 4, 1776. In a letter to his wife on July 3rd John Adams stated "The second day of July, 1776, will be the most memorable epoch in the history of America. I am apt to believe that it will be celebrated by succeeding generations as the great anniversary festival. It ought to be commemorated as the day of deliverance, by solemn acts of devotion to God Almighty. It ought to be solemnized with pomp and parade, with shows, games, sports, guns, bells, bonfires, and illuminations, from one end of this continent to the other, from this time forward forever more." He was only off by 2 days.

I am a proud Mexican-American that was raised to look forward to this date. When I was young I was not fully aware of the significance of this date. As I grew older it had more meaning. I was a member of the United States Navy & was immediately instilled with patriotism. Today was a day to look forward to, but like 1776 I too had an important July 2nd. That was the date of my 19th blood transfusion. The first received as an outpatient. It has become so routine that I do not even take the entire newspaper. The sports section, a bottle of water along with some airline nuts is all that is needed to get through another intravenous injection.


Fourth of July 2008. Awake at noon to brush teeth. Color with my niece for awhile. Asleep again by 2. Need to go out and see the sun. Am sitting out by the pool by 4. Decide to jump in, am able to swim half lap before I head to the side to reclaim my losing breath. The sun on my body and the warmth of the water brings back many memories. Two years ago I was the Senior Project Manager of a multi-million dollar project in Southwest Florida. The water and sun were my back yard. I worked hard but played just as hard. Twelve hour work days followed by hours of rec time on the beach were a daily occurrence. The world was my oyster, I divulged like I would live forever. Forever may no longer an option.

.The day of independence that I once looked forward to, I can only try to forget. For I am no longer independent. I am dependent on family for shelter and food. My bone marrow is the dictator of my body. Telling me when to eat, sleep and how much of each to do. I try to break free from its grip but what was once a simple task of taking a swim is now enough to put me flat on my back gasping for the air that was once taken for granted.July 7, 2008 I see my doctors again. I hope to have a treatment prescribed or at least begin the necessary procedures for my bone marrow transplant both are life changing experiences. 60 hours of the unknown. A prisoner in my own body. I do not feel very independent today.

I have now moved to my new website that will offer the opportunity to share more information. Please visit at www.IHaveMDS.com

As strange as my story seems .   My Fox Houston has posted in on its community page, but has never asked me a question.  Their concern for my well being is astounding.

It is 2:31 am. About the time you come home from a night of fun and drinking. My evening has been anything but, I completed reading James Patterson's Beach Road moments ago. The format is different and makes for a difficult read but once you overcome that, you will find it is well worth your time. I will not spoil the ending for you, but I will say that you will never see it coming.

Tuesday morning I had a bone marrow biopsy performed. I am scheduled for a follow up visit this coming Monday. Unless bad news is detected on this latest exam. The doctors seem to believe there is a conflict in my first biopsy and requested this second one. A bone marrow biopsy is sort of like a root canal or walking barefoot on broken glass. I was not pleased to have to go in for number two. There was just cause to order it. I may not be afflicted with the disease that was originally diagnosed. Could be better could be worse, I expect the worst and hope for the best. If they find something that they are looking for I could be admitted to the hospital as soon as Thursday to begin chemotherapy. That is today. All day (Wednesday) I hoped for the phone not to ring. It didn't. Partly because it was dead, needed a transfusion....I mean charge. The number given to the doctor is that of my cousin. I know if the call comes in she will find me. I called to check and there were no medical calls. Now I have to survive today. I charged my phone. It never rings anyway. I have T-mobile ,the Fave Five plan. I can not come up with 5 people to put on there. I get unlimited texts and those are mostly the Astro's scores and news. For the record the 4 that are on my 5 call and send their love everyday.

It is now 3 am. I never wanted my phone not to ring more than I do now. RETRACTION. I gave my phone number to someone just minutes ago. It would be good to have this phone ring. Either way it would ring in a new chapter of my life, should I hear "Live like you were dying" from Tim McGraw (that's my ringtone). I would start treatment for whatever disease has decided to invade my bone marrow and I can start the fight to get my life back. Or I can hear the voice of a new friend and that is something I could use right now.

It is incredible what the love and support of family and friends can do. Brings on energy and hope that you did not know was there.

I am not afraid for the phone to ring. I have it in my right hand. I am ready for whatever comes next.

trust–noun
1.
reliance on the integrity, strength, ability, surety, etc., of a person or thing; confidence.
2.
confident expectation of something; hope.

Ben Taub General Hospital a member of the Harris County Hospital District provides access to cost-effective, quality health care delivered in a compassionate manner to all residents of Harris County regardless of their ability to pay.

    That is a statement from their website.  I was admitted into an emergency room on April 11, 2008 because my body was lacking 3 pints of blood.  Transfusions were administered intravenously & I was released.  My healthcare and treatment or should I say lack of it has been non-existant. Eventually diagnosed with MDS. I was immediately set upon a path of frustration and  anguish.  This is a rare disease.  Along with being rare it carries a heavy price tag.  I tried to survive at 2 different regional hospitals and an outpatient clinic but burned through my life's savings without ever receiving any form of treatment.

    I was referred to Ben Taub.  I called and was told I needed an appointment to establish eligibility.  The earliest was 2 weeks away.  I took it, met the criteria and received a gold card.  I immediately called the hematology department for an appointment and was told the soonest would be 3 weeks away.  June 9, 2008 12:30 pm. This is a day I may never forget.  It seemed like a lifetime away.  I was admitted into the emergency room 3 times while waiting.  The whole process appeared useless.  I stuck it out with help from my family.  Last Mondays' appointment had me sit on an observation bed and answer questions.  I than submitted vial of blood for numerous exams.  I have been doing this for almost 9 weeks now.  I receive a transfusion and than it is examined.  I feel like my veins are being used as a filtering system for some testing institute.  It is pumped into my right vein and withdrawn from my left hours later.  I am afraid to drink tomato juice because I have so many holes in my arms that I am afraid of springing a leak.  The thought of red fluid draining from my veins when I so desperately need it may send me into shock. 

    I am scheduled for a follow up visit on June 16, 2008.  I do not make it with the assistance of an emergency room visit and the transfusion of 3 pints of blood.   Sitting on the table again.  This time there is news.  Contradictions are found in my bone marrow biopsy slides.  I can hear it coming, the statement I do not want to hear.  Time stopped, I could not breath, hear, or talk.  The doctors of BenTaub want to perform their own bone marrow biopsy.  This procedure is the most painful and scariest I have ever experienced in my life. A needle through the skin, into the bone, through the bone into the marrow and withdrawing fluid.  Not a pretty site.  Now this Doctor whom I just met for 15 minutes last week is asking me to come in today and submit to my second procedure in 2 months.

  Dr.Mimms is reassuring and knowledgeable.  I consent to the exam that was performed 10 hours ago.  I am sitting with the right side of my posterior off the chair because the numbing injections have faded and I feel that needle in my bone.  My next appointment is this Monday.  Unless something comes up on this biopsy exam.  After all this time of frustration and despair I begin to see some light at the end of this tunnel.  I do not know how long this tunnel is, I am wearing my glasses.  I can see really far with them on, but there is light somewhere down there.  I am going to follow it. I learned a new word to today that is going to help me on this journey. TRUST. That is what I have now have for Dr. Mimms and her staff.

Should'nt menudo be good for the marrow ? Bone marrow that is.

      As far back as I can remember, menudo has been around. My family cooked this traditional Mexican caldo on special occasions. When I was younger & my family was larger, the preparation and making of this spicy soup was truly a family affair. The cutting of the meat, which is actually beef tripe was usually delegated to my dad, but ma and gramma had to tell him how to do it. He probably still cuts it to this day and is still offered vocal assistance from my mom. "That piece is too big, someone is going to choke. That piece is to small." He cuts anyway. For some reason I remember it having to cook all night long. Music had to be playing. I think Vicente Fernandez was part of the recipe. The whole time it cooked the adults talked, drank, danced and had a good time. When the kids were allowed to stay up we just listened. It was fun to hear the stories of our parents. And when we were sent to bed we told the same stories in case someone missed a part. Menudo is a meal that is not prepared to be eaten alone. It does not come in a 16 oz can. When it is made at home it is meant to feed every cousin, aunt, uncle & neighbor within miles. And they do come out for it. On Sunday mornings menudo was treated as a very special meal. The cure for hangovers to hunger. Now that I am older we do not see as much home cooked menudo as we did. I have tried this dish at various restaurants, but it will never compare to that, that was cooked in the old house on Melbourne where every came out to be when Linda started cooking.

     I had my first appointment with MY Hematologist Monday. There is no new news but there is no bad news at this time. A battery of tests were ordered & I follow up this coming Monday. The most comforting news is that I will be seeing the same doctor and she plans on seeing me through this disease. I will still need a transfusion before my next appointment, but at least now I have a Doctor on my side. That alone has lifted a huge weight off my shoulders. I just wish this whole disease thing could go away and I could go back to being a big brother to my sister & brother and wait for the menudo to be ready.

With all that is going on with my health, I have pretty much been bed ridden. I take the 13 steps to the facilites and return to this bed. I have a laptop with internet access, a cell phone (that my daughter is currently paying for because I am unemployable), and a large television with an antenna that can get one channel, but it is hooked up to a DVD player. I am wearing my copy of "George Lopez" pretty thin. Hint, hint, I will take used DVD's.

I am afraid to venture out much because just the simple task of cleaning out my truck wore me out. I had to take breaks from my truck to the garage. I have a 15 month old niece that can out run me. I really am in desperate need of oxygen. I do not look forward to wheeling around a tank and have tubing running to my nostrils, but at this point I can care less about my outward apperances. This does not bode well for my chance of meeting my significant other. I know she is out there, she just does not know where I am. PS... I am in a beautiful home on the outskirts of Tomball, thanks to my dear cousin and her husband.

While watching the telecast of the final leg of the Triple Crown today it appeared that Big Brown was as sure to win as the sun is to rise. I did not think he would do it. I was correct and in the minority. Fortunes were lost by going with the favorite in this historical event. A 5'2" jockey from Lima, Peru who entered the race as a 38 - 1 underdog went wire to wire to shock the horse racing world. Alan Garcia, had his appendix removed and went on to pilot Funny Cide in 2007 and Da' Tara in todays Belmont Stakes. He faced insurmountable odds and proved victorious. He did not do it alone. His father & grandfather who were both jockeys andwere there in spirit and in prayers along with many others.

As Monday June 9, 2008 12:30 pm. fast/slowly approaches I too will be entering an event of historical proportions. It will be my history. My diagnosis and treatment plan in this battle against MDS will be decided by a team of Doctors at this time. Prescription medication, transfusions, IV therapy, chemotherapy or a bone marrow transplant are my options. My nerves are driving me crazy. So many thoughts, questions, fears keep running through my head. I want to take a jog a good brisk run to air them out. It is 3 am . I try to lace up my K-Swiss and am soon out of breath. I made it past the 13 steps to the bathroom though.

When Monday comes I will need the support, comfort & love that has been here all along, even before this disease began to ravage my body. I do not know who reads this or when I will be online again, but I have to let certain people know that I would not have made it through the last 8 weeks without them. My daughter, who seems to forget who the parent is in this relationship. My sister that acts as another mother. My parents who I so defiantly rebelled against for so many years are still by my side. My cousins that have opened their home & hearts to me. A niece who may be my workout buddy by the end of next week. And the many email-ers and well wishers that I have met while on this journey. I thank you all.

They say it was a miracle that Alan Garcia won today. I choose to think it was with his heart and support team that got him through. I choose to believe that because I will be using the strategy to get me through the next few days.

Score a small victory for Team Contreras. As of this moment I may be the only official member of this team, but I am actively recruiting. I am now entering week 8 since my initial admission to an emergency room facility to receive a blood transfusion. Being without health insurance and having an illness is an uphill fight in itself. When a member of the medical field introduces himself with a horrible bedside manner and proceeds to make racist and negligent remarks while I am still in a hospital gown, well that is something that I will fight to my last breath or this laptop crashes, which ever comes last.

The person named above, I will refrain from using the name again in this article because each time I think of him it causes me to gag. My breaths are limited as it is, I can not waste them on this one bad apple. My encounter with this man is detailed in earlier blogs so I will not bore you with the details. Let me go to what I perceive as a small victory. As can be seen by my repeated emails and postings, I am quite vocal. Actually it would technically be email vocal since all my correspondences have been through email. When I was treated like the dirt beneath ones boots I notified the Texas Medical Board. It was via email. It has been weeks since the initial letter. I had again lost faith in the system. Until today.

                                                   From letter dated June 3, 2008

"Based upon the information you provided regarding the above referenced licensee of this agency, an investigation has been initiated to determine whether a violation of the Medical Practice Act has occurred. This case has been assigned to an investigator in the field."

If you came into contact with this man and felt you were treated unjust please let me know so I can forward that information to the investigator. I hope Tomball Regional Hospital is aware of this latest investigation, they will be hearing more from me in the near future.

Murtaza M Bhuriwala MD - One bad apple

I was asleep, I think. It's not the same, this bed, this room, the glimmer of light as it reflects off the outdoor swimming pool. I could be in this room, turn down the blinds and sleep for hours. Tonight I was reading The Appeal, it is a John Grisham & I have read all his books except for the one prior to this. This is Memorial day weekend & I should have been planning a trip to San Diego to see a cousin graduate from college. Instead I have made sure I have a few good books, a stack of magazines and some iced tea in the fridge. I do not plan on venturing further than 30 paces in any direction from this bed. The excitement.

I woke up, I think. I will not know for sure until it is light outside and I have showered. Than it is time to pour a glass of sweetened iced tea ( you can purchase some of the best tea for $1.29. It is the Kroger brand found in a plastic gallon container in the refrigerated section near the milk) with this done, I than fire up this trusty Gateway. She is not lightning fast,but she has not let me down. I go to my email account first, waiting for some good news from someone. Than I check the Astro's site. Did we make up any ground on the Cubbies? I wish the best for our closer Valverde, he took a shot to the head last night but stayed in to close out the game and record another win. Than I come here, to this blog page to see if any comments were posted or if I had written something during the night.

I dream, or foresee. Asleep, a good one too. The kind that has saliva dribbling down the side of your mouth. I hear something, shake my arm, can feel the tube resting on my vein. Want to roll over and sleep on my stomach but am afraid I will pull the IV out, so I lay here on my back. It took me under a minute to drink a pint of Bud Lite. It takes 4 hours for a pint of blood to be introduced into your body. Sometimes you can feel it as it goes in. To make room for the blood sometimes they give a diuretic to get rid of urine. It is time to pee. This is a job in itself. Gotta do what I gotta do. Should have asked for that urine bottle to keep by the bed. I am too young and nurses are too cute, so you know I didn't ask. Let's go pee.

Open my eyes, its dark in here. See some LED lights,machine whirring. Same old same old. Need to catch my bearings. Where's my call switch that has the light button? Disorientation is the worst. I see a table lamp. Turn it on. LED lights are my cell phone charging. The whirring is the ceiling fan. The IV tubing on my vein is the power cord to this laptop. I fell asleep and woke up to write this. I think. Will check tomorrow, after I pour my tea.

 

Thursday June 5, 2008 2:15 a.m.

When does 7.0 plus 2.0 equal 7.5?

This simple arithmetic problem shows a variance of only 1.5. If this equation was as simple as my niece’s homework assignment I could correct her and show her how to solve it correctly. It is quite basic, you can actually solve and prove it on your fingers and still have a thumb left over. The equation is more complicated than that. So complicated that men and women of medicine can not solve it. The lack of a proper answer is bringing me closer to the moment when I take my last gasp of oxygen here in the city that is home to the best medical services in the world.

Allow me to explain. Let’s give the numbers in the above equation some substance. In this case the number 7 represents the amount of blood (in pints) I had in my body at 2 p.m. yesterday. The minimal amount should be 12.5. I am admitted into the hospital via the emergency room. My vitals are taken and I am typed and matched. A transfusion is ordered, 2 pints, they arrive roughly 10 hours later. Did my blood count fall even lower while I waited? No one bothered to test.

A little after midnight I am administered the first of two pints of the fluid necessary for me to continue breathing. It takes about four hours for each pint to enter and circulate my system. This is where the number 2 comes into play in my equation.

A blood test is taken to see where my count is. As far back as I can remember, if you had 7 apples and added 2 more you would than have 9 apples. This simple logic does not pertain to an uninsured person lying in an observation room that has been diagnosed with MDS. Myelodyplastic Syndrome. It is a bone marrow disease that some consider a pre-leukemia. For this equation the answer is 7.5. The answer may not be correct mathematically but it is realistically and on lab results.

In the span of 8 hours I was administered 2 pints of blood. Thirty minutes later I was tested and found that 1.5 had left my body. Where did it go? The obvious reasons have been ruled out. My bone marrow is not producing or killing it. My spleen was measured at 17 cm over a month ago. It may be filtering out the bad blood cell and in doing so grows even larger. The doctor has plenty of suggested treatments but since I do not carry health insurance, his information and knowledge fall upon deaf ears. The course of treatment? Administer another pint and if blood level is over 8.0 he is suitable for discharge. My interpretation is “get him stable to walk and let him die elsewhere”. I was tested and reached 8.4, time for immediate discharge. I still do not feel well. I have asked for assistance via email from numerous sources over the last 7 weeks. My only reply is still out there, I have yet to hear anything. I may not be physically abused at the moment, but I am definitely being neglected. The fatigue & worry brings me closer to the point where replies will be too late and I will be a distant memory. A casualty lost to big insurance.

Roger Contreras
(786) 281-8316
txplumber @gmail.com

Unanswered concerns

3:47 a.m. May 3, 2008
To whom it may Concern,

My name is Roger and I am currently a patient at Tomball Reginal Medical Center in Tomball, Tx. I was originally admitted 3 weeks ago for shortness of breath. I just turned 40, do not smoke and work in the construction trade. I consider myself to be in above average health. Upon arrival at the emergency room the staff of TRMC treated me as if I was the only patient here. Vitals were immediately taken, an EKG and blood work were promptly performed. It was determined that I was lacking blood. I am not sure of what type or medical term, but I was 3 pints low. A few members of staff asked how I was able to walk. I was admitted to a room on the 4th floor and a blood transfusion was started.

I have not had need to seek medical attention in over a decade, so I do not have a primary care physician. Like most men in my trade, I also do not have medical insurance. Tomball Regional was aware of that and to this day they proceeded to treat like gold. I was assigned an admitting Dr. Natthani. X-rays, EKG's and cat scans were performed. During this process I received 3 pints of blood. I continually asked every Dr. I came into contact with, where those 3 pints of blood went to. I did not lose it through bowel movements, nor did I cough it out. I was told it was possible that my body could not be creating it. This was on Friday April 11, 2008. Tests were to be performed. On Saturday morning the charge nurse came to my room & told me that my blood count was back up and that I was being discharged. When I asked about where my blood went I was told I needed to contact Dr. Nathanni.

I followed up with Dr. Natthani a week later. He ordered another blood count to be performed in 2 weeks at Quest Diagnostics. I did that this Wednesday. I was contacted by his office the following day to be informed that I had already lost an additional two pints of blood and that I was to go to the TRMC emergency room. I did that and the ER team typed and matched my blood and began transfusion within a few hours. Again I was admitted to a room. Here in room 339. In the morning I was told that the transfusion was not successful and that I was still short 2 pints of blood. More transfusions were started. The staff, room, and care are above expectation.

My problem lies with my Doctor. I was/am under the care of a Dr. Murtaza N. Bhuriwhala M.D. of the Houston Cancer Clinic at 13414 Medical Complex Drive, Ste 10, Tomball,TX 77375 (281) 516-3662. He came to my room yesterday at 5:20 p.m. My daughter and cousin were present so that they could help me gather information as to what I am to do in after care. The Dr.s bedside manner is horrible at best. Not that it should matter, but I am a Hispanic male that was born & raised here in Houston, TX as wer my parents, and their parents. Dr. Bhuriwhala's opening comments to me and my family were " are you here legally?" when I answered yes. He proceeded to embarrass me and scare my daughter & cousin. I was informed that a bone marrow exam is needed to rule out Leukemia and provide further insight as to my condition. I asked when would that be performed. His answer " If you had insurance it should have b een today, since you do not, you will have to go to the county hospital." I asked about the 2 pints I had lost overnite and could he at least let me know what I needed to do to stabilize me. His answer was further tests were needed. I asked would he performing them. He laughed and said " You can not afford me" and needed to go to a county clinic. He than left.

I informed my case worker and she promptly went to see him and had him order some more exams. I can not sleep, wondering what will happen to me. I began typing this at 3:00 a.m. Delores Shivers R.N. came to my room a few minutes ago and found me typing and crying. She comforted me and said I would not be put on the streets in the morning. I am a hard working, proud man, just because I do not have insurance does not mean that I will not pay for my treatment. It may take me a little longer but it will be paid. I just want and need to know where these 7 pints of blood have gone.

My name is Roger C, each day that passes brings me closer to a death that could very well be avoided. I have been diagnosed with myelodyplastic syndrome. Here is a brief description.

Myelodysplastic syndrome, or MDS, is a group of diseases in which the bone marrow doesn’t produce enough healthy blood cells. Red blood cells, white blood cells and platelets originate in the marrow and move into the bloodstream when they mature. In MDS, the marrow produces too many immature cells (blasts). These blasts die in the marrow or soon after entering the bloodstream, resulting in too few healthy blood cells and low patient blood counts.

I have been seen in 4 emergency rooms and admitted to 3 of them over the last 6 weeks. I have received 3 different blood transfusions totalling 10 pints of blood in that same time frame. At the time of my first transfusion I had only 5 pints of blood running through my body. The norm is 14- 18 pints for my size.

I was admitted at a regional hospital for my initial transfusion. Two weeks later I was readmitted. I had a bone marrow biopsy performed by a caring oncologist who saw that the hospital was unwilling to assist me because of the fact I did not have health insurance. This is when I found out I had MDS. On a Friday afternoon the symptoms of blood loss began. I went to the Ben Taub emergency room. After 7 hours my blood count was taken. I was at 8.1 pints of blood, low but not low enough I was discharged and referred to there Hematology department. I made an appointment with the HCHD to apply for a gold card. Appointment was kept and I received the card. I called the Hematology department to schedule an appointment as was told it would be about 2 weeks and they would notify me. I could not make it that long. The Monday following my trip to Ben Taub I was admitted to another hospital with 6.6 pints.

I was just notified that my appointment for my initital consultation is June 9, 2008. This is 2 weeks away and will be 3 weeks since my last transfusion. I will definitely be in another emergency room before than. There are various treatments for this disease that can save my life but we do not even know what options I have until I see a Hematologist. Each day that passes without treatment can mean numerous days taken off my life cycle.

If you or someone you know can help by getting me seen any sooner, I would greaty appreciate it. I will be forwarding this to some media outlets and ask if you can please do the same. My email is txplumber@gmail.com I have copies of my medical records with me and would be happy to answer any questions.

Thanks,

Roger