It is official I can't hang with my 66 year old father in law!!

I went to visit my father in law...usually we go to one of the clubs he owns and spend about an hour...not this time we were at 4 clubs and spent 6 hours out...that means I got home at 3 AM Sunday Morning after I had been up since 6 AM Saturday Morning to go and see him!!!!

YesterdaY was a blur...I managed to get 4 hours of sleep then we got up and went to breakfast with Dad and we were on the road home by 11:30 AM. I took a brief nap at the end of the Steeler game and then was in bed with TV off at 10 PM. I slept till 10 Am this morning and then Evan and I cleaned the basement and ran some errands...we went to Super Panda for lunch as we could not get near Chick-a-filet!!!!

Got home at around 3 and took nap till 5:30 and then got up and got on the Wii fit which showed my Wii age as ..........60....well at least I can now set some goals of trying to get my Wii age to 45 by my Birthday!!!

Have a good day!!

I still hate rehab!!

I have completed three sessions of rehab and I just have to say I hate it!!!! I have no strength in my upper body and my legs and knees are horrible..so it is not fun I usually get short of breath but on a scale of 0-10 I usually am around 3-4. I still have 17 sessions to go....but if I don't start feeling better doing it I may have to ask the Doctors if they feel it is worth continuing at this point since we felt that I should at least try it...Three sessions is not long and I have 3 more before the trip to Disney...Needless to say I will evaluate all of this at the end of January!!!


Inhale-exhale...repeat!!

Random Thoughts of the last week from 12/15-12/23

I started the week off by attending the funeral of my aunt and I attended a funeral on Saturday for a18 month old little girl. I don't like funerals all that much...I go and pay my respects but I feel like they are a waste of money...they really are not for the dead but for the living. I have said for many years even before all this talk of a heart transplant came to the front burner that I had certain things that I wanted to have done after I die(but to quote Monty Python's Spamalot song...I'm not dead yet, no I am not dead yet) I know having a wife and son who are Jewish cause a lot of questions as to what will happen when I die(but again I am not dead yet, no I'm not dead yet)

Let me state for the record, I am Catholic, I still when I get the chance go to church!! However since getting sick the last 6 months or so I had to make some choices...you see for the longest time I would attend services with my wife and son one day and then go to mass another day. When I started getting tired I prayed to see what I should do..And I felt in my heart(soul not he 3 chamber thing I am living with) that I would like to go to services. I am not turning my back on my faith but I feel that I would like to spend time with my family. When my son decided(and he decided on his own to be Jewish) I felt it was my duty as his father to assure that he became as grounded in his faith as I am in mine.

Ok I am rambling off topic a bit...back to the discussion at hand. I wanted to donate my body to science and then have a big party as a memorial...I wanted people to eat and drink...I have a lot of friends who are not Catholic or Jewish.....The fact is I have friends of many faiths. Again I think funerals are way to expensive and I would prefer that the little insurance money that I do have would go to Sharon and Evan to help them.

My mother stated that she wanted me to have a mass of Christian Burial....I did not think about it that much because I am donating my body and there will be no body to bury....thus the memorial service/party would be a great idea.

My mother mentioned that I should write down what I want so everyone know....this was never a thought or concern for me...why you ask Because Sharon and I will have been together for 26 years come this Feb. We will be married for 23 years in June...she is my best friend and she has a great stake in my health.....she understood from the time she met me that our time together could be long or short.....she understands what I have dealt with as far as my heart goes...No she was not there for the first 2 surgeries when I was 10 months old and 14 years old.....but she has been by my side since my last one at age 20 in 1984. I trust her to make the decisions that I have made regarding my care and my final wishes!!! I do not mean by saying this that I am putting my family off to the side...in fact I am thinking of every one's feelings when I am gone(but I'm not dead yet, no I'm not dead yet) If you think about it Sharon and I have been together over half of my life. We have stood arm in arm against many of odds....just a few that happened when we were first dating....the death of her mother...which anyone who has ever lost a parent at a young age knows is very hard to overcome...we also had my last major heart surgery...again a tough place to be for the person having the surgery..let alone for a couple of teenager's at the beginning of their relationship.....we over came that hurt and anxiety we felt when we were told that we could not have children after many years of trying....we hugged each other tight the day that Evan was born...we stood beside each other as we took Evan back and forth to various therapies when he was younger...we struggled together as to whether or not to ever have Evan tested to find out what his issue and diagnosis really was.....we did not want the schools or anyone to put limits on him and tell him that he could not do things.....we cried the day we found out that he had Autism.....we stood strong beside each other as we fought weekly with the school to make sure that his educational needs got met. You see we are a team of 2 we are each others strongest supporters and cheer leaders.....Sharon always ask me my opinion or what I think before she does anything including her decision to become Jewish...Just like she supported me and helped me when I went to Grad school....Some people asked me why I would let her do something like that to our family......Well my answer is simple.....I have no right to tell her what to do let alone what to believe...I felt that she was searching and her journey took her to different place then being Catholic....but it is not like I could just cast her aside(a wife is like and old pair of shoes...the stiff and hard when new but become very comfortable as you wear them) She did not say to me "I am Jewish and I love you less" No She said she loved me more because I understood what made her happy and that it was filling a void in her life....You see being married and together for so long makes one in tune with those things...she has never forced me to go to services or to convert...( she may joke about it) but since we have been together for so long and we are a team she knows that my faith is my faith...and that I do not love her or Evan less because of their faith!!! In plain words and I will capitalize them as if to shout so everyone understands:


WE TOOK VOWS...FOR BETTER OR WORSE...FOR RICHER OR POOER...IN SICKNESS AND IN HEALTH AND GIVING OURSELVES TO EACH OTHER UNTIL DEATH DO US PART!!!

So after all that my wife know what I want:

A mass of Christian burial if that is possible since my body is being donated...If not a memorial mass.....My body will be returned to her at a later date...it is cremated by the lab...she will have control over my ashes.....and when she dies I will be buried with her!!!

I thank God everyday for sending her into my life.....we have stood together in many of trying times and we have survived.....this trip we are currently on will be no different we will survive.


Also, today is the day I lost my second best friend...Dad I miss you and really wish you were here...but I know that you are watching over all of us!!!!

A sad Saturday!!!

Last Wed. at work I heard the news that an 18 month old of one of our students who graduated in June died.....We were all sad as all kind of rumors have been flying about the cause of death....however if what people were saying was true it did not make the papers or news, this leads me to believe that the rumors are false. So Saturday morning I met one of my co-workers and we went off to the funeral home to pay respects and to attend the service...However after seeing the little girl in the coffin and her mother standing there for twenty minutes holding her litle hand it was more then I could take and I knew that my co-worker was uneasy as well...Why..she has a 3 month old at home.....so we hugged the mom and we left...as soon as we got to the car she turned on her cell phone and a picture of her daughter came up.( I refer to myself as her grandpa Anthony as I am 20 years older then her mom) we both paused for a minute and when I got out of the car I told her to give my granddaughter a big hug for me.

I think the hardest thing that I parent should ever have to go through is to bury their child or grandchild!!!


Hug your babies and grandbabies tonight!!

TB or NO TB that is the question!!

You would think that with all the chest x-rays that I have had taken in the last 6 months that the last thing I need would be to have a skin test for TB...However it is part of the test that the transplant team needs for me to complete to help with their evaluation to see if I would make a good canidate.....Like ok. So on Friday I got the shot...of course with the blood thinners it turned black and blue it was still that way on Monday morning when it got it read but the skin was not raised....so that means I have no TB!!!!!

To pee or not to pee that is the question!!

Today has been wonderful since 6:30 am this morning when I began collecting my pee for the next 24 hours for test!!! Yep I drove around all day with the jug from the lab in my car...it was doubled bagged and then put in a tote bag so that I could carry it in to places to how do I dare say this......empy the big old bladder!!!!....

The good news is it is 9 pm and I only have to keep this up for 9.5 hours...then drop Evan at school.....run said pee to the lab and get some bloodwork done....then to doctor to get dates of immunizations that transplant team wants....then to rehab (BOY WHAT FUN) then to visit some students so I can be done working at noon on friday.

I will pick Evan up from school and we will go shopping for mommy!!!

HI HO HI HO It"s Off to Rehab I GO!!!

Today was the first day of Rehab....Did I like it.....Not....am I Sore and tired...You betcha....Will I go back....Do I have a choice....


8 minutes warm up
8 minutes on a arm leg amchine
8 minutes on a arm machine
8 minutes on a reclining bike

3 minute cool down


What a day!!!

After I went to the lab to get the container will I will make a deposit of YELLOW GOLD for a 24 hour period!!!


20 days and counting till the next round of testing!!

You all have a good day!!

We have some dates!!!

I called the transplant coordinator today it has been three weeks since we met with the adult cardiologist....she was suprised that I did not get my package yet as my appointments are the 5 and 6 of Jan. I don't know what is going to happen butit looks like some testing and then sit and talk as the appointment for Tuesday is almost 8 hours long......

So know the count down is on!!!!!

Hopefully everything will be done before we leave for Disney!!!!


And PS we finally told Evan I was going!!!

Rehab here I come!!!

I met with the folks at pulmonary rehab today.....the girl remembered me as I attempted rehab 9 years ago...she wanted to know why I quit......that would be because I got ill at a session and then spent over a week in the hospital....we got the orders from the doc not to let my heart rate get above 100....nice it is around 60-70 at rest so it won't be to hard to get it upto 100.


I start Tuesday for 20 sessions......we will see how it goes

No Santa for me!!

The girls at work took pity on me as I was having back spasms on Tuesday so they found someone to play santa.....which means I got to sit with several of my students and their families and talk...however I won't be that lucky next week!!!!

Dr. A

Met with Dr A on frida...feels fall may have been drop in bp...tick or a trip....things are going well with the way things are going so we did not make any adjustments to medications...Wants me to let him know if I have any changes ASAP.....told him I would but felt things would be ok.... We will meet after I meet with the surgeons.....



Also today I called to check out pulmonary rehab....director is to call me tomorrow....until then breath in...breath out.

and a belly that shook like a bowl full of jelly>>>>

Yes it is that time of year for our annual christmas party for the families we work with so once again I will be playing the jolly old elf......

The only paart I hate is when the pictures bite me on the a$$ during the senior dinner...because no matter how hard we try I just don't make a good santa......plus this year santa has a sore knee....should be loads of fun!!!!


So have a HO HO HO DAY!!

Can you feel the pain today!!

Quick hello and wanted to let you all know that I am a little stiff and sore from the fall yesterday. I have been taking pain relief meds every four hours which helps with some of the pain and stiffness.

Tonight we are going to go see the play Frost/Nixon....nothing like 3 hours in a tiny seat at the theater to make you feel like a new man.

Tomorrow I see Dr. A and will mention the fall to him!!!


Have a good day.

BTW.......I would love to read comments if you have any or questions!!!

Ashes, ashes I fell down!!!!

Ok so I am walking into one of the schools to see students that I see usually on Tuesday and Fridays when I am just doing fine and go to step up onto the sidewalk and land flat on my left side.....banged up the side of my left hand, left knee and fell hard on my side.....to make this even more annoying....you guessed it I could not get up!!!! My right side is week and I could not get up....had to shimmy(that's a sight when you weigh over 200 lbs.) of the side walk so I could use the edge of it as leverage to pull myself up...went and saw the nurse who cleaned the wounds with soap and water and then bandages........Evan and Marie at sharon's office say I should start walking with a cane....JUST CALL ME HOUSE!!!!

The Meeting

Sorry it has taken so long to update but when I was getting ready to post yesterday there was a problem with the computer that I use. So Thursday was the meeting with the adult cardiologist to talk about possibility of a heart transplant. I had a test scheduled at 8:30 am, an appointment with the the lung doctor at 9:30 am, and then finally with the cardiologist at 1:20 pm. Evan was going away for the weekend and had to be at the drop off location at 3:15 pm. There was no way for us to make all the appointments and pick him up on time. So poor kid had to tag along.

First test went well....half of my diaphram does not work as well as the other but there is nothing they can do about it.

The lung guy sees no major issues with the lungs other then they are working at 50% this is not a concern with the heart I currently have and he suggested some rehab to build up conditioning but told us to check with cardiologist.


We had lunch and then headed to see cardiologist....got there a half hour early as directed and met with his nurse. She came back 15 minutes later and stated that he was in the cath lab and would be there shortly. I think that this was a stress test...in small room with only a clock on the wall ticking ever so loudly. I went to check on Evan and saw the doctor reviewing my records. He finally came in agreed that I would be a good canidate for a transplant and stated that he was in agreement with the lung doctor that the lungs and plumbing to the lungs from the heart may not sustain the new heart and we would still be in the same situation. So we maybe looking at a possible heart and lungs transplant....


Next step is to meet with the surgeon and get anyother test that they would like to have done done....so it is no longer if I need a transplant but rather how soon do I need to go on the list.

Who says Vampires are only out at night!!

Today was a day to go see the vampires at the local lab. I had to get my Thyroid checked as well as my 3 month sugar average....I also had my INR level checked. I did it first thing this morning came home and cleaned out the car. I am now keeping my fingers crossed that nothing happens to it as Sharon and her friends Four and Q have taken it for the day.

Tonight Evan has an outing with his youth group...they are going paint balling......


Thursday is the day of my last Pulmonary test. I will see the doc right after and then the meeting with the transplant team is in the afternoon.

I will post after that...It is a busy couple of days at work this week as we are being audited by the state.....we usually pass with great review but this year it is a new person so who knows...

Have a good weekend!

My diaphragm maybe broken...hope I don't get knocked up!!

I received a call today that the Pulmonolgist wants to do some testing of my diaphragm....He thinks there could be something wrong since it did not respond to the stimulus testing a couple of weeks ago...the girl said it would be a set of x-rays......(soon I should be glowing) Any way in my line of work you never want to hear someone say mydiaphragm maybe broken........That would not be good!!


Anyway, have a nice week.....until we meet again may your diaphragm never let you down!!!

Dumb things I have heard from the Medical field!!!!!

1. How do you know you have a mass in your left leg? Well the Doctor that I saw for it told me that it was a mass and it was an encapsulated nerve!!!!!!

2. SO how do you know you have fluid in your belly? I always look like I am nine months along in my pregnancy!!!!!

3. Fluid is a sign of possible liver damage...have they checked your liver??? No I thought I do all of these test first!!!!!!


And the best.....so how long have you had heart problems?


SINCE BIRTH THUS THE WORD CONGENITAL IN FRONT OF HEART DEFECT!!!!


One question I have....you need a license to be a doctor.....would a brain be nice to go along with it?????

Take a Chill Pill!!

As I posted last time, I had an appointment with the family Doctor to discuss possibly taking some sort of medication to take the edge off. We met and came up with Lexapro..everyone says that it makes you just not care and you know after being on it for almost 2 weeks I can agree.

House is a mess........I don't care!!!!
Someone cuts me off in traffic....I don't care!!!!
The state is coming to audit work....I don't care!!!
Evan has a bad day..........I care but I don't let it get to me!!!!
I'm having a bad day..feeling bad......but I don't care!!!!!!

So basically...it is working...I feel more relaxed and I guess that is what we were looking for when we picked out the medication!!!!


So CHILL OUT ALREADY!!!!

Shocking!!

Today was the last of the Pulmonary test...it involved electric muscle stimulation to check for damage. It started out with the girl asking me which one of my lungs was paralyzed. WHAT???? I told her Dr. wanted me to have test to see if there was any muscle damage that could be causing the shortness of breath. The first part was not bad they hooked up and stimulated the muscles in my left arm. The they wanted to test my diaphragm....this would be shocking the nerves and muscles to the extent that my diaphragm would contract and cause me to take a deep breath....they started the volts out low and increased them up by 10...it was annoying at first but then it hurt.....they did the left side then the right and then the left again...another tech came in and tried...2 docs came in and observed...lets just say that my diaphragm did not contract....now I don't know what that means but they ended the day with a deep muscle test.....that involved sticking a needle in my arm at 2 different times and seeing how the muscle reacted...good news there is no muscle damage.....What does all this mean...well I guess we will find it all out on the 20th of November when we meet with the Pulmonolgist and then the transplant team.... stay tuned.

Tomorrow I go see the family doctor to see if we can find an anti-anxiety med that I can take that will interact nicley with the heart meds....I need something to take the edge off!!!!


GOOD NEWS ONLY 5 DAYS TILL ELECTION DAY!!!!!
I WON'T TELL YOU WHO TO VOTE FOR>>>BUT GO VOTE!!

IF YOU DON'T VOTE YOU CAN'T BITCH ABOUT THE OUTCOME!!!

It has been a long day!!

Today after taking Evan to school I had to take a student to two appoinments....I picked her up at school at 9:30 and then went to pick up her boyfriend at their house. Drove to the clinic for the meeting with the nurse...This student recently moved and was waiting to get benefits to continue with pre natal visits....she missed almost 3 months.....so the meeting with the nurse was to get all past medical information...while they were doing that I drove to my house to get my wallet.....drove back got them and then we went to lunch......the girls one eye was very red and when we went back at 1:30 for the doctor appointment they suggested that she get it loked at to rule out Pink Eye....they also had her go to the hospital for blood work....we walked over to the hospital got the blood work and then went to the ER......waited 20 minutes...not to bad...called my mom asked her to pick up Evan at school as there was no way I was going to make it....yes the girl had pink eye....so we then had to go get her Rx filled...at that point we had to wait 25 minutes for it to be filled.....finally got them home at 5:00pm and was at my mom's 6:00PM....got a bite to eat and was home at 7:30 unloaded and reloaded the dishwasher......so I am tired and getting ready to relax.....

So here is the breakdown for the day: 9.5 hours of work,over 200 miles in the car!!

What did you do today??

Keep going!!

Yesterday was the 2 pulmonary test that I spoke about last week.

Traffic was not to bad and I was over an hour and a half early for the appointment. I had the CT scan first it was over quick,

I then had the pulmonary stress test.....the girls were nice and made me laugh but they were not lying when they said they would push me till I could not go any further. They managed to get my BP up to around 220 on my arm which we all know is not the acurate numbers so you know they had me working.

I was at Evan's school by 1:30 and made some calls.


I now have an appointment next week for the motor nerve test and then I get a three week break.

Then on the 20th of November I meet with Pulmonologist to review results...and then that afternoon we will meet with the transplant team and see what they think at this time.

On a good note I have been given the clear to travel if I feel up to it......so I may get to go to Disney..SHHHHHHH don't tell Evan!!

Later

What a week!!

Monday- Blood work

Monday left for Harrisburg. As I mentioned before I was trying to get either portable concentrator or have one delivered to my room at hotel. In order to do this I will need to change providers because mine does not do national deliver as they are a local company. Other companies can not provide service because insurance will not cover it. Why? because I am already dealing with local company...So on my agenda for next week is to change everything to one company. That way if I travel for work or pleasure I can have O2 delivered to wherever the road leads me!!!

Monday night, Tuesday, and Wed. I was in Harrisburg for work...I actually enjoyed all the workshops I attended and the good thing was we were about 3 miles from the race track and casino. Bad news lost 40 bucks, but I had fun. I was in bed by 10 PM both nights but did not sleep well my sinuses were bothering me.

Got home yesterday and went and got Evan at my Mom's house. Stopped and got dinner and was in bed by 9 and slept till 3 was only up a few minutes and then until 6.

Took Ev to school this morning then I had an appointment with Pulmonary Doc at the Comprehensive Lung Center at UPMC. First they did a finger stick to do CBC test. Next we had a Pulmonary Function test( I was going to say something like I sucked it up and did my best to blow it) which was so fun NOT!!!

I then met with the doc. went over the Heart History and the basic other medical questions. Lungs are functioning at 50%. What is causing the shortness of breath.

1. The heart history
2. Pulmonary fibrosis (due to meds)
3. Heart may be squishing the lungs
4. Water retention
5. Nerve and muscular problems
6. Low conditioning
#5 cam up when he asked me if I had trouble getting out of chairs from a sitting position?

I do and also if I ride or drive in a normal size passenger car. I have a encapsulated nerve in my left leg and I just was chalking it up to that..but apparently it could be a cause.

Plan of action:

A. CT SCAN on 10/22
B. Pulmonary stress test (different then the heart one I had in June) They make you ride a bike!
also on 10/22
C. Motor Nerve Conduct test on 10/29.
D. Blood work (5 vials full)

OK and of course he says, "If you lose 10-15lbs you may feel better."

" Don't you think I been trying to do that for the last 10 years?" I wanted to scream!!! But I refrained and smiled. "Yeah that would help." I said.

If it comes down to low conditioning we may try Pulmonary rehab!!! I did this before so we may have to fight with the insurance company.

Have I mentioned how much I hate insurance companies!!

I then went to Evan's IEP which went well. Home to play some wii!!

and to wrap up the day we all met at the Family Doctors and got our flu shots.


SEE YA!!

The lake walk!!

Today we went for the walk at the lake that I talked about yesterday. Once around the bottem lake is like 2 miles if you add the upper lake you get like 3.5 or 4. I made it a 1/4 of the way around the lake and felt ok. Turned around to go back to the starting point and 1/2 way there the usual symptoms appeared. A little disappointed but just keep telling myself do what you can and don't worry about the rest.

Update!!!

I finally had a chance to talk with Doctor today!!!

Fill you in on that conversation in a bit....Have I mentioned that I hate insurance companies??? Well I do. I take a medication that does a lot of damage so every once in a while the doc orders a blood test to check the levels....you guessed it...insurance company denies.....I call they say the need a diagnosis code...Long term use of medicine....10 years does equal long term....deny!!! The lab sends it to collection agency.....I heard nothing from them or insurance company so I assumed it was OK!! NOT...Called today they need doc to send a letter being more specific as to why he wanted the test. That will be done on Monday.


I am now using O2 at night....so I call the med supply company and ask if they have portable concentrators...easier to deal with then the tanks.....since I only use at night if I am away overnight I would need to take at least 2 tanks and then wake up in the middle of the night to change them out since they only last 4 hours.....we have concentrators...we will get back to you soon. Today they call....we can get you a smaller version of the one you have it only weighs 30 lbs....WTF!!!! I don't want to drag something that heavy with me when I travel....I want a small shoulder one like they show on tv.....we only give those to patients who travel and they are on loan only.....I explained again what I was looking for and they said...can you guess...we'll get back to you sometime next week.....So I am going to Harrisburg for 2 nights with no O2...I will survive but then will be ready to fight next week if they tell me the same BS!

OK....Spoke to Dr. A. today....we are going to increase the one pill from 40mg in the morning and 20mg at night to 40 and 40. Let him know if I get dizzy!!! Still am going to go get all test that would be necessary for transplant as we know that we are heading in that direction....who knows how long but I will meet with transplant team in near future after they review everything.... So I go to see a Pulmonary Doc next week. Doc A wants me to try and loose a few pounds...I am working on that...and must be doing OK cause when retaining fluid I only go up to about 224 lbs and instead of 228-230. I am doing some activity with our wii game system...things like bowling and golfing that I know I could not do in the real world...it gets me moving and if I tire I can turn it off and not feel bad like I would if I was paying $$$$ for a real games of bowling or around of golf. Steps and walking still are a little hard...but we are going to try a walk around twin lakes tomorrow.....I'll let you know how that goes. Next get sugar under control....been doing that and have been fairly level......liver function test....blood work so will get that done....also they saw some gall stones during heart cath so would like me to follow up with family doc on that...I have known for years that I have them and as long as they are not bothering me we will do nothing about them.

The biggest issues are to make sure the lungs are in good shape and over all health is good...which for a sick person I am relatively healthy.

So there you go... I will post after our outing tomorrow and let you know how I did....until then Enjoy your weekend.

Another Weekend Over!!

I don't think we have the medication adjusted to the right level yet...In fact I don't know how long it would be before we can make another increase....All I know is that I still get tired after walking short distances and doing steps. The good news is the dark purple bruises on my right froin area are fading....the ones on my stomach from the injections are still noticable but i don't go around shirtless so that is not a problem either.

Today everyone here seems to be suffering from allergies so we are going to take it easy. I will watch Football...Sharon and Ev will watch moves.....Because of a small incident we will not be playing wii today.

Hope you all had a good weekend and a great week!!!

A week later.

Well tonight is a week since the famous heart cath and tee. So how has it been.

Monday I got the call from the clinic to increase one of my meds(Quinapril) from 2omgs in the morning to 40mgs. I was also allowed to stop the injections of Lovenox.

Wed. I return to work for about 5 hours. I did my paperwork for Sept. and then went to the hospital to see a couple of students new born daughter.

We recently got a wii when we switched to comcast. So yesterday we set it up. We bowled and golfed. I was tired. After a long night of not sleeping I was in the field all day today. I got winded walking into the schools and did not really have an desire to finish my lunch. Came home and again played some wii. Now am getting ready to head upstairs and put on the O2 that the doctor wants me to use at night and watch tv.

The plan is since we can not get accurate measurements of my blood pressure...we will Know if it is working if symptoms go away...we have changed it to dramatically if I get dizzy.....and we may need to increase and tweak them more if the symptoms don't go away.

I have a call in to Dr A to call me towards the end of next week as I have a 2 day trip to Harrisburg on the 14th and 15th.

See you on the flip side!!

Monday Monday can't trust that day!!

Morning all- Took my Lovenox last night and this morning...still not feeling well in the old tummy. Got a call from Cardio Nurse asking again if I wanted anything called in for it. No I am going for bloodwork and hopefully it went up the 0.4% that we need to get to the magical number of 2 so I can stop taking it.

Thanks to Ellen who suggested Peppermint Patties as away to deal with it!!! And yes that Tin taste in the mouth is so cool...NOT!!!

I took Evan to school went to the lab and had the bloodwork done....hospital should have results by 1-2 this afternoon......but you wanna know what is so sad....They make a meter (like a glucose meter) that you can do this test at home....Now why don't I have it.....Don't know......Know the nurse that works for Dr. A was to look into it way back when....never heard anything...will check with him again about it when he calls this afternoon.....would this make things easier...yes..would save the weekly until it is stable trips to the lab....I could have tested yesterday and called in the results and perhaps have gotten off the Lovenox sooner. Plus if I prick to check my sugar 5 -7 times a day whats one more stick weekly to keep things simple?

I will let you all know how that goes!!!

call the doctor!!

I called the doctor and was told to kkep taking the Lovenox. If I don't I would have to be admitted to the hospital for Heprin treatment till my levels are back to 2. As of yesterday they were 1.6. I told her how it was making me queezy and she stated she could call something in for that..Its after 5 so I told her I would suck it up till tomorrow and talk to Dr. Allada. So after I hung up with her I gave myself the shot....I not only makes me sick but it also hurts and burns like H E Double Hockey Sticks.

Later Taters

Sunday

I had my cath and tee done 3 days ago...I feel ok...well with the exception of the bruise on my right groin that is a lovely shade of purple and the one that is on my upper lip. My stomach hurts from where I am giving my self shot of Lovenox, which I am calling the doctor about since I have been quizzy in the tummy since my last dose last night.

I did leave the house for a couple of hours today...that helped to get things going....and I actually did not feel bad. I had some chicken soup for lunch and we walked around a few stores at the Waterfront while Evan was at a Youth group event. I ccame home and slept for about a half hour and spent rest of the time watching football games.

Tomorrow I will need to get more blood work and touch base with Dr. Allada about the changes to my meds.

Hope you all have a good week I will check back on Wed after I have had a few days more to recover and start the meds...plus head back to work.

Back Home

I was released from the hospital at 9:35 PM last night. The Tee and Cath went well. My functions are actually better then the cath I had 3 years ago. It appears that the problem is with my blod pressure. Due to past surgeries they can not get acurate readings on my arms or legs.

The plan is to start playing with medications to bring it down. They feel that this will take care of things. They still are going to submit stuff to transplant team but it looks like I will not qualify we will just keep an eye on things.


I will continue to post so keep coming back.

12 hours and counting!!

Ok we leave at 8 AM I need to be at the hospital by 10 AM.
Check back tomorrow for update.


Later Guys!!!

Monday Monday

Ok Let's talk about a few things:

1. WICKED was total Awesome>>>>I laughed, I cried and then I laughed some more!!!

2. Baby Jacinta Marie is so Beautiful and her parents were all smiles when we saw her on Saturday Morning!!!!

3. A big THANK YOU to Rebecca for inviting Ev to the last Pirate home game of the season. He had a BLAST!!!

OK so Monday is here and we are 4 days away from lift off. Tonight I stop taking my blood thinners and begin taking One 325mg Aspirin in its place. I also called to preregister at the hospital but they still have not returned my call. I have picked up my 2 Prednisone pills so I am pre-medicated against any reactions to the contrast dye that they use.

Tomorrow I need to do some paperwork at the office...come home finish a few things that I told Sharon I would do before I go into the hospital...I need to wash clothes for Ev to take to my Mom's house and pack his stuff. I also need to wash stuff for me to take to the hospital. Oh yeah the DOG Tucker goes to the groomer as well.

Wed. I will take Ev to school with his stuff for his stay at Nani's house. Go see a few students...if I get a hold of them tonight or tomorrow....Call the hospital to see how God awful early they want me there. Pick Ev up from school wait for his 2 cousins to get home and then we may go to the mall and get pizza. Then after that home to pack my bag. First dose of Prednisone at 11pm.

Sound like I got it all planned out........Lets hope.

Will try to post something on Wed night before I try to get some sleep until then.

PAGING PAPA SMURF!!!!

Some times when I am tired or get short of breath or over exert myself I turn BLUE!!! Yes BLUE like those little dudes on the Saturday Morning Cartoons. A nice shade of blue not to dark not to light just right.

Well let's just say tonight I have a little BLUE in my coloring. At least that is what Sharon and Evan tell me. I am tired and I am again fighting to get the Fluids out of my stomach.......I have taken my second water pill of the day so tonight I'll be Pissing the night away(for those of you who remember the song from the 50's Dancing the night away.)

I know that I will feel better tomorrow... I am looking forward to it!!! My friend Robyn and her Husband Mike celebrated one year of marriage yesterday (thursday) and this morning at 5:09 she text me to say she was on her way to the hospital and was in labor.....2 things came to my mind rather quickly ( make it 3) !. Thank goodness I tossed my cell on the diningroom table last night so I did not get the text till 7:15. 2. Shoot that means I will probably loose the baby pool since I had next Wed. as one of my picks....but the big one was SH*T, she has my pay check. You see she was in the office and said she would bring my check this morning to the school...at first I was like yeah but then I said NO....Last time you changed purses and left it at home. She assured me that she would not do that again....NO I said with my luck you will go into labor. " SHUT UP!!!! I WILL NOT!!" to be honest I was not to worried about it...but she called me and said that Mike was going to the house to let the dog out and they baby was already there and so he will drop it off to me on his way.

Little Jacinta Marie was born today and tomorrow I get to go visit her!!!! Ibet after holding her I won't be blue....I will pe tickled PINK!!!


Have a great weekend!!!

TGIF

Good morning, I am up early attempting to get folks moving as we got home late after enjoying the play WICKED.

I have to work tosay and need to take Ev to school early. Yesterday was a long day. First I got like 3 hours sleep because I was afraid I would sleep in and not hear the alarm. I was out of the house by 7 with Ev and we made our way to the South Side for his 2 appointments. As I predicted I made it there early...an hour early. The clinic did not open till 8:30 but Deb let us in at 8. We talked with Deb and a lot of the staff as they arrived. We saw Dr. B. at 9 and then walked over to the local CoGo's(like a 711 to folks in different areas of the country) and grabbed some soda and crackers. We then saw Kate(who is filling in for Melissa) at 10. At 11 I drove Ev the 19 blocks to meet up with his class at there community volunteer site. Got to my mom's about 12:45 she just got home from an appointment. We talked for a few minutes and then I went to take a nap...I would have an hour and a half but I missed set the alarm on my phone and it went off at 2:03 not 2:30 as I thought. I picked up Ev and headed home. Checked E-mail, loaded the dishwasher and took a quick shower. We went to dinner at Max and Erma's and headed to WICKED. Home at 11:15 unloaded the dishwasher, set up the coffee pot, put out the dogs and let them play and eat while I checked e-mails. I got to bed at 12 shut the TV off at 12:30 and was up at 5.

Today I have 3 schools to go to and then home for a quiet evening.


I just wanted to share that we are 6 days away from the test. I know many of you who are my friends from ACHA (Adult Congenital Heart Association, www.achaheart.org) have had these same test. I think of all of you daily. In fact when I could not sleep the other night I thought a lot about how we met and the fact that we have remained friends for so long. You all helped me with a difficult time 10 years ago and your still helping me. For that I say Thank you!!

Have a great day!!!!

Hump Day

Well I made it to Wed. A little tired but no worse for the wear. We just got back from dinner with a former student and his family. He leaves for the militarty on Friday morning. We know he will be in the states until January. After that we don't know.

I am home now and am going to kick back and chill. Ev and I have an early day tomorrow as his first appointment on the South Side is 9:00 AM. Have to leave by 6:30 to beat all the trafffic. My luck there will be none and we will get there very early. After I will drop him at the center where his class is volunteering and go and nap at my mom's. Tomorrow night is WICKED so I am glad that I am off of work.

8 days and counting.

Back to the schools.

Part of my job is to see students at school. I figured that I was going to need to tweak this a little with all that is going on right now. So today I had only one school to visit and was out of the house at 8:45 AM and back home by 10AM, how did I do this easy. Ev caught the same stomack bug that hit Sharon late last week. So did my thing at the school and came home if he needed me.

I got to relax and watch TV.


Now tomorrow I have 2 schools to visit. And if I have to take Ev to school my day will start at 8 Am and End by 12:45. Back home for an hour and a half nap before picking him up.

Wed. I have no students to see but have to be out most of the day since I will be covering for the other case manager who is having a baby anytime between now and the 25th when she will be induced.

Thursday I need to take Ev to see his Doctor at 9 and his therapist at 10AM. Will drop him off with his class as they will be about 19 blocks away from the center doing community work. I will go to my mom's and rest until I pick him up at 3PM. We will go to dinner and go see WICKED that evening. Friday I have to be at schools from 9 AM -1:48PM. I will go pick Ev up at school and the week will be over.

I will then begin to see students everyother week which will lighten my work week.


So we are 10 days and counting to the Cath, tee and all the other test. I will keep you posted.

TGIF

Today I received a call from the nurse at the heart center that works with the Cardiologist who is going to do my Cath. Basically she stated that her and the Cardiologist like to meet with folks prior to the Cath so they can discuss the risks, what is going to happen and what might happen if they should find any heart blockage.

I was polite and told her I knew the risk and what to expect. I have had several Caths in my life time the last one being 3 years ago. We then talked pre-meds as I occasionally have a reaction to the dye. We then talked about blood thinners and I said I knew that since the cath was on a Thursday that I should stop taking it on Sunday.

She seemed to think that I had a good understanding.

I thanked her for the call because that would save me an extra trip to the Clinic in Oakland where parking sucks!! She laughed and said that she understood. She said she would call me next week to finalize calling in the pre-procedure meds.

So the count down is on 13 days to go.

Keeping Things Normal

Today Sharon came home from work with some kind of stomach thing. I stopped after picking Evan up from school and got her Coke (the Cola not the powder) Chicken soup, and crackers. I picked up some pizza for Ev and Me.

Evan had a youth group meeting that was in the city and was from 8-9PM. The original plan was for me to stay home if I wanted to and Sharon was going to take him. When I found out Sharon was sick I asked him if he still wanted to go and he said yes. So I took him and he had a blast.

He thanked me for taking him.

I told him again that we would find away for him to do the things he wants to do.


Today I did laundry and just watched TV and Listened to the radio. I am a little tired now so I am going to bed.

If I get MOODY....I'm Sorry!!

While I have stated that this whole idea of a new heart does not bother me and the truth is it does not!!! What does get to me is being tired and feeling it. Yesterday was one of those days. Yesterday afternoon I took a water pill. Now that makes you, well we know what it makes you do. So I was then having to go and PEE every 15 minutes, which entailed walking up a flight of steps every 15 minutes. Plus I was washing clothes which was another flight to and from the basement.

So, if I was moody or snapped at you....I did snap at one of my students who needed me to take him to get steel toed shoes for Tech.

I am Sorry!!!

I will try to give you some warning!!

You gotta laugh!!

While Driving with the boy on our way home from the store, I commented that my stomach hurt.

Today is one of those days when I am retaining more fluid.

He turns to me and says, "DAAAAAAG dad you better take a water pill when we get home because if that thing explodes we will all be killed!"


So I came home and took a pill.....anyone want to guess what I will be doing this evening?

What we know so far!!!

Hello all, I have started this blog as a way to keep everyone informed about what is going on with my current medical issues:

I had begun to tire more and started retaining fluids back at the end of May. In June I had a stress test that revealed that my Heart Function have decreased. I met with Dr. Allada on August 8th after being unable to secure a time that was convient for both of us to meet. At first the plan was to admit me for a few days and relieve the fluid before doing the Cath and TEE while there we would do all necessary test that would be need for evaluation by the Transplant team. However on Sunday of this past weekend I saw Dr. Allada and a new plan was put into place after he consulted with other Congenital Heart Docs and Adult Heart Docs and the Transplant folk. The new plan:

I am scheduled to have a Heart Cath and TEE That is twhere they put a tube down your throat and look at your heart on September 25, 2008 after which the plan is for post-cath to be admitted to Presby-hospital (adult facility) with plan for CT angiogram + pulmonology consultation. Possibly for 1-3 days (they may put me on some IV medications to see if my cath #’s or function change.

Stop by for any updates.

Anthony