My Grandparents are Cool!

I'm so excited - my grandparents now have email and I just got their address. Hopefully they will stop on by and read my blog! :)

My Dad - Surgery Update #3

Just a quick note - dad is doing well. The name for the mass is: Cystic Pheochromocytoma.

I just had another crohn's flare and was in the hospital Tues 7/15 - Sat 7/19. My WBC count was high in my blood and stool but they didn't find any bacteria - which is good. I got IV Cipro, Flagyl, and steroids. They sent me home on Prednisone but luckily I'm already on a weaning schedule - I hate steroids! I also REALLY hate oral Flagyl and must remember to try and avoid it in the future at all costs!

Grammy's doctors are working on confirming that her pulmonary hypertension isn't a heart issue. It looks like she may have to have a lung transplant in the near future if this is the case - NOT GOOD! :(

My head is exploding but I did get the bills paid today - whew!

Adam and Lauren arrive on the 28th; I got Ben's office fixed up for them yesterday. Adam will be staying with us for a couple of months while he finds a house here - yes, he's moving back to Houston! As far as I know Lauren, his fiance, will be moving out here when things are more settled.

Happy belated 3rd b-day to Michael and 6th b-day to Alex! Where has the time gone???

My Dad - Surgery Update #2

The Mass:
The mass was the size of a football and weighed 4-5 pounds. There was actually an indentation on the kidney where it was located. I got the example that it was like when you step on spongy carpet and your foot makes an indention. Hopefully that means that the indention corrected itself when the mass was removed, like the carpet rising back into place.

The doctor said the mass was pussy looking, like an abscess, but wasn't an abscess. Sharon got to see a picture of the mass on the anesthesiologist's phone. Apparently the anesthesiologist used his camera phone to photograph the mass; when he came to the room he showed it to Sharon on his phone. She said it was red with lots of veins running through it and looked like an organ.

The mass was 95% benign. The other 5% consists of the contents of the mass; we are still waiting on those results. The doctors had to crack at least 2 ribs to remove the mass (Dad says it was more than 2 though). His incision is on his side and is approx 10-12 inches long with 40 staples. Dad also said they had to cut the diaphram on one lung to move it out of the way so they could remove the mass.

The doctor's theory about the adrenal gland hemorrhage was wrong. The mass is what killed the adrenal gland. The doctor said the adrenal gland had been dead "a long time." (So the mass had probably been growing a long time.) I don't know what "a long time" means - months, years, decades?

Pain:
Friday, Saturday, and Sunday were really bad days for dad. I spoke to him briefly on Friday - long enough for him to say he was in pain and had to go. Then he wasn't up for talking again until Monday night. On Sunday night/Monday he finally figured out not to wait until he was in pain to hit the button on the pain pump, but to hit it as often as it will give him Morphine. Poor dad, I guess I should have told him that but it seemed obvious to me. Then again, most people aren't thinking terribly clearly after major surgery. Dad said he was able to sleep Sunday night. He woke up every 45 minutes to press the pump button but then went right back to sleep.

It sounds like most of his pain is due to his ribs, so breathing hurts. At least yesterday he was able to do his "breathing machine" (where you suck on the plastic tube to keep the ball suspended in a certain range - to keep you from getting pneumonia). He said it was a joke, i.e. he couldn't get the ball where it was supposed to be, but the doctor said that's to be expected due to the cutting of the diaphram. I'm just glad he's trying now; he refused to even try over the weekend due to the pain.

Movement:
Dad is able to sit for an hour and is able to take walks. He said walking actually hurts less than doing the breathing machine. Walking also helps prevent pneumonia so that's a good thing.

Gastrointestinal:
He is tolerating liquids and said they were going to start him on soft solids soon. He is passing gas so his guts are starting to move. This is important since you can't go home until they are working again!

Current Concerns/Issues:
Dad's pancreas is throwing off fluid like it is leaking. They have been analyzing the fluid every day. (Dad doesn't know if it is pancreatic fluid or what it is.) This is not a good thing. Currently they are waiting for it to stop. I'm not sure how long they are going to wait or what they will do if it doesn't stop, but I'm pretty sure they won't send him home as long as it's still doing this. They haven't discussed a plan for sending him home yet; Dad thought they might talk about the plan today.

Other:
Goldfarb (dad's urologist/kidney specialist/surgeon is presenting dad's case to about 60 doctors on Tuesday. I'm not sure if this is during grand rounds or what but it goes to show you that Goldfarb meant it when he said he'd never seen anything like the mass before. Boy how I wish I could be there for the presentation!

I think that's everything for now.

My Dad - Surgery Update

My dad came through surgery well. The mass they removed was larger than a cantaloupe!! The good news is they were able to spare my dad's kidney - instead of removing the kidney, they shaved the mass off of it. They also had to shave the mass off the spleen and pancreas. The bad news is that they had to remove the adrenal gland because it was dead! That was shocking but might explain why my dad felt so run down all the time. I don't know if he will require any type of medication, etc. in the future since he now has only one adrenal gland. (Arguably he only had one before the operation since the second one was dead.)

The doctor said that the mass was horrible looking and he had never seen anything like it. The pathology on it should be back late today or on Friday. It's a 50/50 chance of it being cancer. So what in the world is this giant mass if it's not cancer? I'm told the doctor's theory is that the adrenal gland hemorrhaged and then formed this "thing." This thing then fed on everything causing it to grow. We'll know more when we get the pathology results.

Dad stayed in the ICU last night. He's got a pain pump (I don't know what pain medicine they are using) and an epidural. The epidural they are going to leave in for a couple days. Pain-wise it's bad that they had to cut on dad's pancreas. Apparently it influences a lot of other organs and tends to get pissed off when you cut on it, so to speak. Talk about cruel - as though dad wasn't going to be in enough pain anyway from such a major operation! Dad also said his bad shoulder was bothering him since he was on his side with his arm up over his head for the operation.

I was not able to be there for the surgery and haven't been to the hospital. Two reasons for that: 1) The truck isn't running well enough to drive out of The Woodlands - Ben drives the Honda to work.
2) My stupid health! The prednisone really got me this time. I look like the Pillsbury doughgirl from all the edema. It's terrible and painful. My doctors haven't officially declared it but basically I have Cushing's Syndrome due to the steroids. The "fix" - weaning off steroids, which is what I am doing. I can only go down 5 mg per week though - agonizing! I started at 40 mg; Saturday I go down to 15 mg. The only thing I can do is wait it out and I hate it! Anyway, the edema is so bad that if I walk much my lower back starts killing me!! I was also worried about sitting around the waiting room of a hospital with my (hopefully) depressed immune system.

I may see if Ben can take me up this weekend. That way he can grab a wheel chair at the front desk to avoid the walking issue.

Other things of note:
Grammy made it home from the hospital Monday night - yea! Of course, the only thing they solved was her pneumonia, but that's better than nothing!

My Humira is being delivered today so I will probably start it today or tomorrow. (This is in place of the Remicade which we discovered wasn't working when I ended up in the hospital in February).

That's enough info for now!

My Dad

My dad is having his kidney removed today at 12:30 pm. Doctors found a mass bigger than a fist on it and think it is probably cancerous. A "pancreatic" surgeon will be present in case the mass has spread to the pancreas. Despite numerous tests, they could only see that the mass was close to the pancreas, but not whether it had spread.

He will be in the hospital for 5 days and recovering at home for 3 weeks (unfortunately, doing the surgery laparoscopically was not an option).

Please say a prayer for him!

Grammy's Pneumonia

Grammy has been in the hospital with pneumonia since Friday. She's got terrible edema (although I told her she wasn't allowed to have sympathy edema!) which they are guessing might be a rheumatoid issue. Although, as usual, they aren't sure. I heard she might get released today but I don't know.

Health Update

Today's slogan: "Taryn lifestyle."

This update is a combination of an email I sent on August 14th and some newer info.

There's no way to predict how I'm going to feel from day to day. I can feel pretty good & get some things accomplished one day and then end up spending the entire next day in bed. I hurt so much that I can't sleep on regular beds anymore. I have a queen size temperpedic type pad that I fold in half and put on top of whatever mattress I'm sleeping on. Chairs are not my friends; I have trouble sitting anywhere for any length of time (other than my bed) because of my neck. The now "non-existent"osteoarthritis makes my neck hurt and then I get a bad headache.

My nausea was finally under control with 2 medications but has gotten bad again. Although surprisingly I am able to tolerate the Methotrexate without a problem. For about 2 months I have been having weird stomach pain. By weird I mean that the methods (medication, positioning, etc.) I spent 3 years figuring out and successfully using for about 7 years doesn't work for it. I haven't found a medication that seems to help and instead of lying on my right side with a blanket to put pressure on my stomach, I have to sit up. Sitting up is a real pain though since when it happens, it's usually around 4 am. So I fold up a comforter and pile 2 pillows on top of that. Then I can sit next to it, so I'm sitting up, but still rest my head on my pillow. If I'm not having a severe episode then I can usually end up falling back to sleep.

For about the past 2 months I have also had no interest in food, which is really a pain when you are hungry and NOTHING sounds good. I pretty much live on Instant Breakfast and Ensure. In the evening I try to eat something solid, like a sandwich, so I don't wake up starving at 5 am. I have lost some weight because of this but not as much as you'd expect. The last time I saw the rheumatologist, he said that if I wasn't absorbing protein well then that could be a contributing factor to my fatigue/tiredness. I need to ask him if I should add some kind of protein supplement or if the Instant Breakfast & Ensure are enough.

As far as being tired, they just had me do another sleep study (my first was in 2000). They diagnosed me with RLS (Restless Leg Syndrome) and PLMS (Periodic Leg Movements of Sleep). I have not been able to tolerate Mirapex, Requip, or Stalevo. (For some reason these days I've been having a terrible time with new medications; I end up with horrible side effects! They did put me on iron - I'm not anemic but my levels were too low for someone with RLS. I talked to my rheumatologist about adrenal fatigue and he agreed that I needed to see an endocrinologist. I also need to have all my hormone levels checked again (by the endocrinologist) since we know I used to be low on DHEA and testosterone. I scheduled an appointment but of course they can't see me until February.

If I could ever get the other stuff under control, then I might be able to deal with my mental health stuff - depression, anxiety, social anxiety disorder, etc.

As you can tell I'm just tons of fun these days. Can't stay up late, can't afford to eat out or wear clothes, can't eat beef, pork, etc, can't really drink, can't sleep unless the stars are aligned just right, etc., etc.

All I can say is 12/21/2012.