dad's update with procrit

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• August 18, 2005 at 5:19 pm #8324
  Bec

  Member

  Hey All,

  I have been keeping up with all of you. Things here are busy as usual now that school has started back.

  I wanted to share Dad’s update with you.

  Dad had the bad heart scare back in the fall and at that time he was having tx’s every week and sometimes every two weeks. While in the hospital, his Dr. decided to put him back on procrit. He now gets a shot every week and seems to be able to keep his hbg above 8 for almost three weeks. For Dad, this is exciting because like all of you he dreads tx,s. Our tx services here are so bad that every tx is a “battle.” One week they have valet parking with a nice room for tx. The next week, there will no parking and no room for tx. The patient relations dpt. has got to know my Mom very well.
  “Complaining” does help.

  But we are celebrating Dad’s maintenance of this disease. They told us that Dad’s life expectancy was five years. Today my Dad is laying brick on a fireplace for my sister’s new house. (He could only supervise my new house but we did lay a small amount of brick). My Mom is fussing because our heat index is terrible here but he is taking breaks and short “cat naps”. He worries me but I now can say that if he dies laying brick, he will die happy.

  He seems more content now that the tx are only every three weeks. We contribute this to the procrit. He also had a port put in that helps with the tx… He is staying in touch with Moffitt in Tampa and hopes to get on new trial or drug when opportunity arises. Terri, I finally have him sqeezing pineapples..

  His iron level is also creeping up but he is waiting on pill.. My cousin in Med School is trying to stay on top of that drugs approval.

  Thank you to all of you who share. Every thing my Dad has tried has come from info on this web site. Dr.s here in Savannah are too busy with cancer patients.

  You all remain in my prayers.

  Bec

  August 18, 2005 at 8:26 pm #8325
  Neil

  Member

  Hi Bec,
  Believe you dad can keep going for many more years.
  Have mentioned a friend with RA that has been getting tx for about 15 years.
  Another has been getting them on and off for about 10 years.
  There a a few more in the 10 year range that are doing well.
  I am at 8 plus years.
  If he is feeling well enough to lay bricks I’m betting he has a good prognosis.
  There are many patients that respond to Procrit for a fairly long time. Ive been on it for 21 months and feel very good.
  When it is no longer effective we will switch over to Aranesp. There are some other options out there that may help after Aranesp.
  A positive attitude and using common sense with the rest of his health and life style can really help.
  Neil

  August 18, 2005 at 9:40 pm #8326
  lindajo

  Member

  Thanks for posting. It’s alwasys great when someone else is successful.

  I had transfusions infrequently after the first two years. I am working on my 15th year. Your dad sounds like he will last a long time also.

  August 19, 2005 at 12:15 am #8327
  Terri

  Member

  Hi Bec, Glad you dad is doing so well, we are still trying to get Bobs plts up hovering around 70 now a little low for him. But his hgb is better with the procrit now back up to 11.2.
  Next week we start the Vidaza again.
  Prayers continue.
  It was weird tonight I had a call from our local Community blood bank I donate regularly but missed my last time, They were calling to ask me for platelets and telling me how important they were and who needed them. Little did the person on the other end of the phone know Bob’s situation and this disease. But I am scheduled for Monday the 29th.

  August 19, 2005 at 6:03 am #8328
  KATHY1

  Member

  Bec, So glad your dad is feeling well enough to do what he enjoys. May he have many more to come.

  Kathy

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