Wednesday, October 29, 2008


Today was the last of the Pulmonary 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 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 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!!!!



Monday, October 27, 2008

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 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 we then had to go get her Rx 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 a bite to eat and was home at 7:30 unloaded and reloaded the 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??

Thursday, October 23, 2008

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 I may get to go to Disney..SHHHHHHH don't tell Evan!!


Thursday, October 16, 2008

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.


Saturday, October 11, 2008

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.

Friday, October 10, 2008


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 guessed 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 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 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.

Sunday, October 5, 2008

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!!!

Thursday, October 2, 2008

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!!

View My Stats