Day one of the research study is in the books!

John Pollman

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Rochester Hills, MI
Thank you all for the well wishes.

Day one is in the books. Today was a pretty easy day with just interviews with the doctor, pharmacist, geneticist, and dietitian. Tomorrow shouldn't be too bad. I've got an early appointment with the neurologist and then a neuro psychologist. (whatever that is)

I did get some information today though that has me a bit upset. Some things I didn't realize and I'm still trying to process it and NOT let it bother me. Wednesday is going to be the biggie. I've got some procedures coming up that I wasn't looking forward to already, but it turns out that they're going to be putting me under with a general anesthetic. That will make the time go quickly, but I hate going under. Every time I've been put under, I've had a hard time coming out of it. I end up having to spend 10-15 minutes having to actually THINK about breathing! It's a scary thing when my pulse-ox starts beeping and someone has to keep on telling me to take deep breaths and concentrate on breathing. It's happened four times already and it's scary.

There is another issue that I had no idea about but was told today. One of the tests they will be doing while I'm out is to check the pressure in my cranial cavity. The doctor said it isn't likely, but there's a chance that I may have to see a neurosurgeon for surgery up there if the result isn't good. As if I don't have enough on my plate, neurosurgery is the LAST thing I want to think about right now!

Something else they dropped on me today. I was told that I'm probably going to have to make some pretty difficult lifestyle changes. It looks like I'm going to have to go on a Ketogenic diet. (almost NO carbs) This is due to some medications they want to put me on. Carbs in the body react badly and cause bad side effects and the drugs won't work. One of the drugs is going to cost in the neighborhood of $25K a month!!! I don't think BCBS is going to pop for that but they're checking.

So anyway, today wasn't too bad and tomorrow should be OK. But I'm not looking forward to Wednesday.

Thank you again and I'll keep you all updated.
 
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John, will keep you in my prayers. Remember, you are there for answers. Sounds like they are being quite thorough and that is what you wanted correct? I know, invasive and embarrassing and scary procedures are in store, but, they might find the key and it might not be THE scariest answer. Keep your head clear, be thankful for them looking in each nook and cranny and checking things off. Stay strong and I pray good things happen for you.
 
Thumbs up. Keep your head on a swivel, do the right thing. That's a great place to be and I believe they are the right people to help.

Best of luck!
 
make sure they plug the hole when there done looking inside to see what makes you tick, we dont want you to loose time ,,remember we have to set our clocks back this wknd:) best of luck headed your way john.
 
John, what kind of research study is it? I spent a year in a research study after my heart attack, and it didn't involve any invasive procedures except a angiogram at the end. I will pray for you, as requested.
 
Thank you all for the support and best wishes!

I am going into the hospital again tomorrow morning. They are going to do an MRI and a spinal tap. It looks like they are going to give me a general anesthesia. The MRI is no big deal, but the spinal tap kind of freaks me out. Therefore I'm glad they're going to put me under. They are going to draw some fluid for testing. But in addition to the fluid draw, they are going to check my cranial pressure. The doctor says it's not very likely because it is normally seen in infants and not adults, but there's a chance that my cranial pressure is too high and I'll have to have a neurosurgeon perform a procedure to correct it. I know it's a slim chance, but heck I'm one of only a hundred confirmed cases of this disease in the entire country! Neurosurgery is something I was NOT counting on when I got here. Oh well, I've got to grit my teeth and bear it. This is for the babies, kids, their families, and other adults affected by this evil disease.
 
Gritting my teeth is easy, I just put them in a jar!!!!! Had a buddy break his neck and had a halo. He was awake while they drilled and screwed it to his head. He was a sadistic puppy, always said it was neat, didn't feel anything but was awake to answer their questions. I am praying for you man, keep on keeping on!!!!!!!!!!!
 
Day three is in the books. One appointment this morning and we're Detroit bound! (Well Milwaukee for tonight, we'll be home on Friday)

It was a very long day. We spent eleven hours at the hospital. I was admitted at 6:15 yesterday morning and then the pre-op work began. It was a long process with a LOT of questions by multiple nurses, technicians, and doctors. They did an MRI on my brain and abdomen as well as a spinal tap. I was so glad that they decided to give me a general anesthesia. I didn't want even a chance of seeing a needle with a two foot plastic tube sticking out of my spine!

In addition to the MRI and spinal tap, I had an EKG as well as an Echo Cardiogram (ultrasound on my heart). I've got good news to report though. I passed all of my tests with flying colors!

Well I haven't heard anything about the MRI's yet, but it doesn't sound like there's anything to worry about. My spinal tap was the biggest thing I was worried about. They are testing the fluid they drew, but as far as my cranial pressure goes, it's NOT too high. (he said it was actually a little low)

After coming out of recovery, I had an EKG appointment a couple hours later so they let us hang around the recovery area until it was time. I was a little concerned because they appeared to be having some trouble with the EKG machine. They said they were getting weird readings and couldn't get the machine to settle down. They thought it was interference or something so they shut everything off in the room (including the lights) and it wouldn't stop. After messing with it for about a half hour, they decided to try a different machine in a different room after they finished my ECG.

They did the ECG and I went to the other room and the problems continued. But the tech talked to the cardiologist and she said the the EKG was fine. The irregularities they were seeing were being caused by the fasiculations (slight tremors in my muscles). A few minutes later, the cardiologist came in to go over the results of my EKG and ECG.

I got some wonderful news! She said I'm the kind of patient that she loves to have. My EKG looks great and my ECG was OUTSTANDING! Most things they look at were solidly normal, but one area that they look at I scored a 50. She said that they hope to get up to 27 normally!! She said that my heart is in great shape and from this test, it shows no sign of blockage at all. We discussed it and she agrees that I should not lose any sleep over my total cholesterol count of 251.

Right now my throat is pretty sore from being on the ventilator, but some throat lozenges are helping a little. I'm gonna get comfortable and lie down and watch some TV before I go to sleep. (which won't be long away)

I'm being a bit long winded so I'll cut it off here. I want to say THANK YOU again to all of you who have been supporting me through this whole ordeal.
 
I bet you didn't go there just for the hospital food, so the fact they didn't find anything sounds more like bad news than good news. I don't remember why this process started, but do you have a resolution? Have you made progress on whatever it is?
 
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