Tuesday, April 28, 2009

You Can't Have Just One (They Melt in your Stomach, Not in your Mouth)

This is my new regimen. I am now taking the ten small pills in the pill box each day along with the other four horse pills that I can't fit in the box. Plus I get to swig down the stuff in the brown bottle 2 to 3 times once a day. Thankfully I only have to take the shot once a week and I only have 6 more shots left after tonight.
Today I had another endoscopy and they found some minimal bleeding. I talked to the doctor about my ascites and he upped my dosage of the water pills. Before we even start thinking about a paracentesis procedure or the TIPS we are going to stay on the diuretics. He also upped my beta blocker because I have portal hypertension symptoms that can cause more bleeding. The beta blocker worries me just a little because any sudden movements or getting up too fast can actually lay you down real fast. I will just have to keep that in mind when I am rushing to put out any fires. Which I occasionally do. Because sometimes during my day job I have to put on my cloak and pretend I am superman. I'm just saying...
Yesterday I had a contrast CT scan and my Bubble Echo Cardio thingamajig and I am waiting to hear how that went. Plus they ended up taking more labs to check my MELD score. It seems that when they update your transplant status they don't want to use your labs from two weeks ago. They want them fresh from two days ago.
I am really feeling good with this transplant center. Everyone is very nice and helpful and willing to talk about any of the issues I bring up. Or it could be that I am loopy and under the influence of anesthesia and I am just making this up. Either way I win.

Sunday, April 26, 2009

It Dropped Like a Rock

This has been a horrible week. The new meds I am taking are leaving me incredibly tired and I keep waking up with the residue of a terrible hangover and headaches in the morning. On Friday afternoon while at work I wasn't feeling so good so I decided to take a break. I sat down at my computer to do some other work I had and I started feeling extremely tired. My head must have been bouncing up and down like a bobblehead doll as I jerked to stay awake. Finally I decided to move around the plant and go see what everyone else was up to. That was a mistake. As I started moving around I realized what I really needed was to sit down. I suddenly had the chills and I was freezing to death. When I got back to my department I turned on my heater and huddled in front of it for ten minutes. My arms were tingling and they felt like they were going numb. At some point I figured out that none of it was normal and I kept waiting for it to subside. I kept checking for a pulse but I couldn't find one. And then I suddenly got really hungry and started eating my lunch as fast as I could. I was barely catching my breath before I started shoveling something else down.
I have never had something like this happen before so I wasn't sure what was going on. Plus I think I was a little confused during the whole episode. I have a key to the first responder medicine cabinet which is located in my department. Instead of grabbing the electronic Mabis blood pressure cuff and checking my vitals, I only thought about checking my vitals. Instead of calling Kris from upstairs (our first responder), I only thought about calling Kris. I knew better, but I wasn't reacting with my better judgment. Eventually it ended as quickly as it had started. It lasted about 40 minutes. It took me most of the afternoon to bounce back before I felt okay. I called my transplant coordinator later and explained to her what happened and she sounded a little dumbfounded. None of the new drugs I am on should have triggered my circulation to drop like it did. The response was to just keep an eye on it. Another thought was to knock back my beta blocker in dosage. But this is something I am not at all comfortable with since portal hypertension was one of the main reasons I started taking the beta blocker. It was also what landed me in the hospital in the first place.

Saturday, April 18, 2009

Where do we go from here ? ¿ ?

It turns out that because I am an American Indian I may be entitled to help paying for drugs that I will need post-op. Drugs that I will need for the rest of my life. These anti-rejection drugs can be very expensive and cost many thousands of dollars a year. Our insurance won't pay for them.
When Lois and I got married we compared our work insurance benefits and discovered hers were definitely a lot better than mine. I have been on her plan ever since. When we discovered that I was going to need to have a transplant we were happy to find that her plan would actually cover the operation. We also learned that some of the drugs I would need for aftercare would also be covered, but not all of them. Some of them are going to end up costing us a lot.
The other day I got a phone call from the transplant center informing us about our insurance benefits and what they would cover. A drug called Prograf is the biggy. Prograf is designed to lower the body's immune system. While your immune system is there to fight infection, it will also fight against a new transplanted organ such as a kidney or liver because it thinks the body is being invaded. Prograf, along with other drugs, are used to help fight against organ transplant rejection. Apparently I need to find a way to pay for this immunosuppression drug before I can get a transplant. Or else ¿ ? ¿

The transplant center is doing its best and willing to do what it takes to help us out in exploring all our options. But now we have reached an impass. The idea to look into Indian benefits was actually the social worker's thought. A good one. Buuttt... I was adopted and I have no ties with my Indian tribe. I know that I am a Yaqui Indian because my parents said so. They adopted three of us -- two Yaquis and a Pima while they lived in Phoenix. But my case is no different than any other adoptee's. When the adoption is finalized, they reissue a birth certificate that shows the adoptive parents as the natural parents. There's nothing on it that says, adopted.
So I must first somehow prove that I was adopted and then find a way to have my adoption records opened so that I can prove it to the tribal council. And then I might be eligible for Indian funds.Years ago I did a little research on trying to find my natural parents. I wrote a letter to ALMA Society (Adoptee's Liberty Movement Association) and they responded by telling me there might be a loophole in finding my parents because I was Native American.

Adoptees who are of American Indian heritage can learn their original names and names of their birth parents by taking advantage of the Indian Child Welfare Act of 1977.

This law was made for a number of reasons, but the one that is of most importance to me is that my records can supposedly be opened due to genetic and medical reasons. It is a federal law. In my case I am not so much interested in finding my natural parents but rather looking for medical history and acknowledgement from the tribe so that I can apply for grant money so I can show that we can get the Prograf. Without that, there will be no transplant.
Anybody know any adoption law? We're stumped.

Thursday, April 16, 2009

Sniff, sniff

I went to see my regular doctor today and he had my new lab results in. I wanted so much to ask him to call up the UNOS website so that we could plug in my new numbers to find out what my new MELD score was but, because I had already dropped in without making an appointment I thought that might be rude of me. He had asked me the other day to come back in a couple of days, but I had no idea that I was supposed to re-schedule. I don't think he seemed to mind, but the nurses station didn't seem to be too happy.
We discussed the breathing problems I have been having and the new medication he prescribed. The good news was that I have no fluid in my lungs. We pretty much determined this on Monday when I went in to see him. But the one thing that my chest x-rays showed was that there was some back pressure creating some blockage. This is probably what has been causing me all my problems. The new meds are diuretics that should help me out. I know they are working.
We left and dropped off yet another prescription at the drug store for some potassium and then went home. I ran to my computer and booted it up while I waited patiently impatiently for it to come online. I called up the UNOS site and plugged in my new numbers and my MELD had dropped a number. I was kind of disappointed to say the least. I had actually thought if it had changed it would of at least gone the other way. I guess this is a good thing and I should look at it with the opportunity to get more things in our lives situated before things do start moving in the other direction. I still have more test at the end of the month and my transplant coordinator threw in another one. It's a bubble echo heart thingamajig.
That is all.

Tuesday, April 7, 2009

When it Rains it Pours

Well it looks like April is going to be a very busy month for our household. Today I went to see an eye specialist because my eyes are always watering. It turns out my tear ducts are both messed up. One of them had to be routered out because it had grown closed for whatever reason and the other one was evidently severed a long time ago. It was still draining so they decided to leave it alone. I had a needle jabbed in my eyelid so that they could numb it, and then to make it worse I had to sit there and watch the doctor poke around my eye because I obviously couldn't shut them while the doctor did his job. Well, I guess I could have shut one eye but that wouldn't have helped me. I go back in two weeks. Later this month I am having another CT scan and then I am having another endoscopy. The last endoscopy really hurt. As soon as they started the IV line it burned like crazy. Oh what fun. I am going to try and see if I can talk my transplant coordinator into letting me get my blood work done too. I also have another blood lab I need get done this coming week and I have to get in to see the dentist.
Lately I have noticed new things are beginning to happen. I am having a difficult time with shortness of breath. I think I have fluid in my lungs. I will have to see my primary doctor about this. Whenever I over exert myself my chest feels oddly different and sometimes when I'm talking I can't finish my sentences because I run out of breath. My cramps still come and go but I found that if I slip one of those elastic knee braces over my calves at night I don't get any cramps. This seems to work. Life is good.
Oh yeah, and next week my wife is having sinus reconstruction surgery with follow ups for the next six weeks. Thank heaven for insurance.