Tuesday, March 17, 2009

A nice day for a trip to the ER!!!

Have not been feeling that great the last couple of days...today I had and have a lot of chest discomfort that goes up to my shoulders and neck. Of course after running the standard test it was proven that I did not have a heart attack which I already knew.

The finally diagnosis was that with the single ventricle that my blood is mixing again so my body is requiring more O2 however the Docs at the transplant center do not want me on 24 hour O2. They also do not want me to back off of Rehab...what is happening is a normal progression of what is now going on with my heart!!

Keep a positive though for me!!!

Wednesday, March 11, 2009

The pre-transplant meeting of what to look forward to as we wait and after!!

Had a meeting today....it was ok....stage 2 where I am currently listed is the lowest level of the three...1-a are urgent...1-b are next then level 2.....if I go on a heart assist device then I may at the doctors descreation be moved to a levle 1-a for 30 days...you can actually live a fairly normal life with the Heart assist Device...

We talked about stress reduction...weight control...meds....and then 3 guys who have had transplants came in and talked...there were a total of 7 of us at the meeting.

got home and took a nap!!!!

If you reas this and live in Pittsburgh area there will be a pancake breakfast at St Gerard Mejella Church in Penn Hills on 4/26/09.....look for more details here in a few weeks!!

Sunday, March 8, 2009

Sunday to Sunday the week in review!

Last Sunday Sharon, Alison and I took Evan to his religious school. We then went for breakfast..I was not moving well that day and having a hard time getting up and down and in and out of the car...Sharon decided that today was the day to buy a cane...we had talked about it because with congestive heart failure you get week some times and wobbly sometimes....Any way it helps so I am glad. We picked up Evan and went to see Movin Out...I love Billy Joel but fell asleep and missed the whole first act!!!! After the play qwe came home chilled for a few hours and then had Adult Education at our temple....It was a lively debate.

Monday I was not feeling well and thought that I had a bladder infection. We took Evan to the Doctor for an appointment that was made awhile ago...after that I took the family to dinner.

Tuesday morning called doctor made an appointment for after rehab to see them>Rehab did not go well as my heart rate kept jumping over 100 which it is not allowed to do< was given anti biotics to fight infection but was told I would be called by Thursday if the culture was differrent. I took Evan to see his therapist Melissa and then we came home.

Wed....took Evan to school and then stayed in bed the whole day....really not feeling well!!!

Thursday went to office and then rehab...better session this time....got a call from the Doctor's office to say the strain of infection I have does not respond to the anti biotic so we start a new one. I pick Evan up from School and we come home and get him packed for his religious retreat in Cleveland....Sharon and I drop him off and get a pizza on the way home.....

Friday I go to two of my schools and then I have my first appointment with Ellen....she will be my therapist and she deals in cognative behavioral change.....We got along fine and to be honest I probably should have done therapy along time ago...that and the combinations of meds really seem to be helping take awy some of the anxiety. Sharon and I have a quiet dinner then we go to services and spend some time with our friends.

Saturday we go for our Hebrew lesson...it is bad when the boy speaks better then I do and is quick to point it out!!!! Later we go out to dinner with our friends Liz and Lar...We four then head off to see Slumdog Millionare.....at first on Liz wanted to see it but at the end we were all glad we went.

Sunday we went to see Sarah and Sam at their Purim Carnival, we went to the Museum, had coffee with Becca at Starbucks We picked up Evan stopped and got him something to eat....got home I put on my stereo and my head phones and listened to Oldies for 3 hours....great way to end the week right...wrong...

I received an E-mail from a very old and dear friend that I have been trying to connect with for
awhile....now that is the way to end a week end on a positive note:)

Friday, March 6, 2009

April 6th

That my friends is the date for my second heart cath in six months.....I am so excited that I could judt poop!!!

Hopefully the recovery will be quick and the results will not be a suprise!!

Thursday, March 5, 2009


It is not a bladder infection but rather a UTI!!! Of course as my luck would have it the first course of anti biotics is not going to work as the strain I have is resistant to it. So after taking it for three days I get to start something new!!!!

Just a few more days of pain.....but at least if the call should come this weekend I can still get the transplant as I do not have a fever accompanying the UTI!!!!

Always look on the bright side of life!!!

Tuesday, March 3, 2009

what do you give a man who needs a heart transplant???

A heart of course!!! But as my luck would have it I got another medical suprise that started Saturday and I finally could not take the pain anymore.......let us just say making number 1 hurt like hell and my bladder is all a twitter......anyone want to guess??


Today was not a good day at rehab. After 45 seconds on the eliptical my heart rate was over 120 so the rest of the session was spent doing things at turtle speed to keep heart rate down!!!! I was a bit pissed. But life goes on!!!

Good news is I start Therapy this Friday and think it is going to a positve choice and will help me gain insight in to dealing with all of this.

Later off to drink some water!!

Sunday, March 1, 2009

First Meeting of Fundraising team

Saturday was the first meeting of the fundraising team, or as Michael(AKA>>TOT) like to call it the meeting of the Tin Man fund!!!

We kicked a round a few ideas for fundraisers. Don't be suprised if you get a letter in the mail shortly as we decided to start with a letter writing campaign..we are also going to try and have a Pancake Breakfast at the church where I grew up on April 26th. The were other ideas as well but we will keep those close to the vest till we can work out the details.

So thank you Micheal(TOT)Pugliese
Stephanie Pugliese
Ann Williamson who all met at my Mom's house and to Jeff Pugliese who joined us by phone from Tronto.

I am greatful to not have this to worry about!!

The Never ending trip to Pittsburgh!!

On Friday the 27th I had a 1 PM appointment in Pitsburgh. I left New Stanton at 10 min to one for the 23 mile drive to the hospital...I was making good time until I hit Forbes and Fifth Ave. Fifth Ave. is a one way road heading west..there is a bus lane that heads East. This area is around the University of Pittsburgh so of course there is a lot of J walking by folks. The problem is if you are crossing left to right you need to check the bus lane....well that did not happen Friday and someone was hit by a bus...I was stuck in traffic for over 45 minutes to go 9 blocks....I was late for my appointment which was fine I still got seen...I got out of Oakland at 2:40 but need to pick up dinner I ordered at a local shop in Squirrel Hill by 3pm....I made it with 2 minutes to spare but talk about stress.

The appointment went well..this was with a medical Doctor who deals with pain and anxiety around transplants and cancer...but she made it clear that she is not a therapist....we talked for a while and she left to make a call to a Psychiatrist to see about adding another medication to my daily meds to help me relax and sleep better....My mind tends to race at night and agin waiting for the phone to ring is crazy....so she came back with a script for soomething...she also gave me the number for a Cognative therapist who I called Friday but she stated she needed to get back to me Monday as she was not at her office....All in all it was productive day.

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