Sunday, September 18, 2011

July 2011

The weekend after we got back from the coast, was 4th of July weekend.  On Friday, I had gotten a call from the home health care nurse and my doctor's office.  The doc office said that if I got any weaker over the weekend to go to the emergency room and have them call my doc so that I could get a blood transfusion.

Due to getting off TPN, I had dropped down to 101 pounds and was so weak.  I was a hot mess.

I got weaker and weaker.  I went to the ER as my internal med doc had instructed - they  hooked me up to fluids.  And then we sat (for hours).  Nothing happened.  They decided not to give me a blood transfusion as I so badly needed.  So I walked out - I am not a patient person especially when I know they are not concerned with me or doing anything for me.  Monday was 4th of July.  My friends took my kids to a big pool party and I stayed home.  I found out later the ER doc never called my doc.

On Wednesday, I saw my radiation oncologist (who is the best doc - she gives you her cell phone and actually answers calls and texts).  After seeing her on Wednesday, I got two units of blood on Thursday.   She is a doc that doesn't mess around and gets things done.

Blood transfusions are wonderful things - thanks to all who can and do make blood donations.  I slowly got my strength back over the next couple of days.  But still could not retain any food.  Thank goodness for TPN bags - they provide all the nutrition and vitamins I need along with electrolytes.

I also saw my internal med doc and went right back on TPN.  Somewhere during this time I saw my gastro doc who said he could do no more for me.  My intestines are so damage that if I eat anything even from items from the low residue diet (which is completely opposite from eating healthy).  I asked my internal med doc if I would be on TPN forever, he would not commit one way or another. 

So glad I had a mediport put in as the PICC lines that they had been using in my arm would act up frequently and get blocked.  The port is much easier.  The home health care nurse comes once a week to get blood and change my port line which is how I hook up to TPN.  Much easier and cleaner.  Only bad part is that I can't get it wet.  This means I have to take baths and wash my hair in the kitchen sink - shouldn't complain but I really do miss taking showers. 

Throughout July I continued to gain strength by drinking Coke.  I had always been a die hard Diet Coke drinker so the switch was hard but I gained 13 pounds between being back on TPN and drinking Coke.  But I really have no social life which is usually centered around food and drink.  Both are off the list for me.  No matter what medicine they give me to stave off diarrhea - it doesn't work.  It sometimes is really depressing.

One thing to be grateful for is the love and help from my family and friends.  Couldn't do it without them.  Love them all.  More later -

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