Diary Entries for mikealpha1

Proud papa

mikealpha1

COOL NEWS: Nathan will be receiving a $1500 scholarship from the Alpha-1 Association (the formal announcement will be Friday.)

To be eligible to apply a student must have or be a dependent of someone who has (had) alpha-1.

Nate will be attending Oakland University in Rochester, MI.

26 month checkup

mikealpha1

The MRI of the bile ducts done last November looked good. Doc wants to have a biopsy done, so that will be June 6. Only have to take the acid reflux pill (I take omeprazole) as needed now. See the doc again in August. hopefully I can fit the endocrinologist in the same day.

The weeks before transplant

mikealpha1

I believe that 2 1/2 weeks before transplant was when my MELD broke the 20 barrier. I was not really aware enough to keep track myself at that time, I was sooooo tired. My mom and one sistervisited 3 weeks prior and I know my MELD was only about 18.

I know that a couple of weekends before I went in the hospital they were rushing around trying to get MELDs entered into UNOS, but the faxes kept getting "lost" or entered too late. Perri was beside herself. [...]

When I grow up --

mikealpha1

For my next life, which started in Feb., 2011, I want to be a Diagnostic Medical Sonographer, and specialize in general. These are the ultrasound people for primarily the abdomen. I ran acrossthis the other day and got excited. You can start with and Associates Degree, or get a BS. Since my transplant, my career assessment profile has changed from "you need to be a chemical engineer" to "you need to be in a technical field where you can help people, such as [...]

Cool Result

mikealpha1

This would appear to be another good development post transplant. Prior to my transplant I had been taking 300 mg allopurinol twice daily for my gout. (I'm tempted to think that thisgot upped after my first bout of HE, I may have given the wrong info, but I'm not sure.) Since transplant They reduced that to 300 mg once a day. Then my PC asked if I was seeing the endocrinologist for my gout. Because of that I figured I should address it at my endocrinologi [...]

18 months!

mikealpha1

Follow up visit today, it's been 6 months. Everything looks good. He does want to make sure the cardiologist is on top of things though.

We are now on a schedule to get off of prednisone in November, WOOHOO! Also the endocrinologist modified my synthroid dose very slightly. Instead of daily, I am to skip the first of the month. He is also checking my uric acid to see if gout medicine can be changed with the new liver.

I'm doing great now [...]

June 6, 2012

mikealpha1

Just got home from an varices follow up EGD. The last was two years ago prior to my transplant. I was looking forward to itt since I would finally get to see my gastro again, he hasn't seen me since August 2010. It turned out his associate that worked on getting me transferred to OKC back in Feb. 2011 was also there so I got to meet him.

EGD showed no varices, so there will be no follow ups. Will only need to see them again if something new crops up, or [...]

Proud Pappa

mikealpha1

I came in the door just after noon, and my son, Nate, calmly said "I just got a phone call." Northwestern Oklahoma State University football program called and is looking at recruitinghim!!!!!!!!

Med reduction!

mikealpha1

Just got off the phone with the transplant center. I get to reduce my prograf from 3 a day to 2 a day. Yea me!

Donor Family Letter

mikealpha1

I just got back from taking my youngest two on a 1365 mile round trip visit to "Aunt" Kara, their foster mom before we adopted them. Considering that just over a year ago driving 3 miles to the grocery store was out of the question, it was pretty neat.

And on arriving home --- THE LETTER! A nice letter from the spouse and daughter of my donor. They are gratified to hear that their loved one's liver is able to bring me a fuller life. The donor was a [...]

Letter forthcoming

mikealpha1

I just got a call from the transplant center. They received a letter from my donor's family in response to my letter, and wanted to make sure I wanted it before sending it to me. I'll be getting it next week.

Excited!

First Birthday

mikealpha1

Just back from my one year check up. The liver labs look good. The doctor reduced my prednisone from 7.5 mg to 5 mg per day, and said to stop the ursodiol. So, two med reductions is nice. Actually, for the transplant, I only take three (prograf, cellcept and prednisone) everything else if for other problems.

It was good to see some of my nurses and therapists: respiratory, physical, and speech (for swallowing.)

Stopped in and visite [...]

Another piece to the puzzle.

mikealpha1

I've always been confused as to whether I was ICU or a regular room the day they found my liver (Feb. 15, 2011). Well, today I was browsing photos on my phone and discovered that they wereboth time and day stamped. Two were dated Feb. 15. The one at 8 something in the morning I took as a view from my bed. It looked out at the ICU nurses station. Another one at 12:52 was me eating the only solid food I had had since Feb. 4th. This photo was definitely in [...]

The day of "the call" Feb 15, 2011.

mikealpha1

I was in the hospital that day (as well as the previous ten) back in ICU. When I woke up that morning things were looking pretty good. Perri said she would like to go back to Tulsa, a twohour drive, and go into work, another 45 minutes beyond, that day. I said in effect, go for it. That day I posted to the "junction" the first time since the 3rd. I had a pretty hard time trying to figure out how to use my computer and wanted to post on facebook, but man [...]

Profile Picture

mikealpha1

Put on a new profile picture, taken Jan. 11, 2012.

My first Thnaksgiving.

mikealpha1

We went to some friend's house for Thanksgiving Day for dinner. We had been invited last year, but Perri had to call and cancel due to me. Last Thanksgiving was not a good week at all. I think hospice was out a couple of extra times, had some blood work done, several meds brought in, and was real achy if I recall.

This year, AWESOME. I could interact with people and eat real food. Today, two days later, I got down the Christmas Ttree and put [...]

Lab Results

mikealpha1

Nov 2 lab results (looking good):

BUN 29

Creatine 1.2

Albumin 4.1

Bilirubin 1.1

AST 34

ALT 23

Cholesterol 191 (never been over 150 before)

LDL 113

HDL 53 (always had been 25-30)

What else does a transplant mean.

mikealpha1

Besides the fact that I'm alive and enjoying it?

My oldest son's grades are up one letter grade across the board. I asked if it was easier without worrying about dad, he nodded. (He's 16 so I don't expect lot's of words.)

Do you have to be so happy?

mikealpha1

I was at my old place of work today. My old boss, now my client, asked at one point, " How could you be so happy all the time." I responded "How could I not!"

Cirrhosis a Disease?

mikealpha1

I debated heavily about where to put this as these are just some thoughts of mine. I decided to put it here so as not to offend.

When I think about it, cirrhosis is not the disease. Cirrhosis is a caused by something: hemachromatosis, fatty liver, alcohol, and many others. These are the diseases that cause cirrhosis. Not to say that cirrhosis can't itself cause complications, but without know for certain what the underlying disease is the treatment is [...]