I just wanted to encourage people to comment. Dad would love to hear from anyone and everyone. This is a way for you to do that! I've set the comments up so that you can comment anonymously. You can also email me directly if you want to send on a personal message without everyone else reading it.
Dad loves sarcasm and paying people out! So let it rip people! :) We'll make sure he gets the message.
Also, we would love prayers of support. I would be lying if I said this is super easy to be going through. Please pray for the doctors for help in figuring out what is happening and why. That they may be through with their diagnosis. And for my parents for strength to continue through all of this craziness. There are so many people praying for us and it gives us lots of hope that this will be resolved in God's time.
-Paige
Monday, April 9, 2007
4.9 Montefiore Monday
I'm finally up to date with the posting. Whew.
One of the things I forgot to mention about yesterday's update is that Dad thinks the sinus infection is returning. He is having more headaches in his sinus'. Also, they were considering that he may be suffering from migraines. Still trying to figure it all out.
Today was another bad day starting at 7am. They gave Dad Imitrex, Zofran and Tylenol at first. Imitrex for the possible migraine diagnosis, Zofran for the nausea. Talking with Mom today I found out that Dad has been having a headache with the pain and nausea. The Tylenol was for that.
Mom called at 7.30am and didn't initially get through. At 7.45am when she was walking into the Cathedral of Learning Dad called her back and told her that he was in pain. She was able to make it over to the hospital by 8.30am.
9.00am they gave Dad one unit of Dilaudid through his IV. That took the pain down to a 1 of 10, but the pain was still nagging and never went away. The nurses attempted 3 oral doses of Dilaudid, which did nothing to help. It seems that nothing orally is working for him once he get to a certain threshold.
Finally at 1.00pm they gave him another unit of Dilaudid, by 1.15pm the pain was gone. It only took over 6 hours to get relief.
More news. A Hematologist came in today. They tested the urine sample that sat in the fridge for a few days and it came back positive for Porphyria, a blood disorder. This is a potential diagnosis. Some highlights from the link:
"The acute porphyrias affect the nervous system. Symptoms of acute porphyria include pain in the chest, abdomen, limbs, or back; muscle numbness, tingling, paralysis, or cramping; vomiting; constipation; and personality changes or mental disorders. These symptoms appear intermittently."
"Porphyria can be triggered by drugs (barbiturates, tranquilizers, birth control pills, sedatives), chemicals, fasting, smoking, drinking alcohol, infections, emotional and physical stress, menstrual hormones, and exposure to the sun."
They started a fourth 24 hour urine collection. Dad did one over the weekend, since the second one was forgotten in the refrigerator. We'll see if this shows for sure. I'm pretty sure they will do other tests and things. It makes some sense with Dad having that sinus infection for close to 4 months. And some of the symptoms agree with what he is suffering from.
On a TOTAL side note. I was watching Law & Order: Special Victims Unit on USA. One of the characters has Porphyria. Way strange that I would watch that show today, the day that the doctors think my Dad my have this diagnosis.
Any questions or comments, comment by clicking on the comment button. I've opened it so that anyone can make comments without signing up for blogger.
-Paige
One of the things I forgot to mention about yesterday's update is that Dad thinks the sinus infection is returning. He is having more headaches in his sinus'. Also, they were considering that he may be suffering from migraines. Still trying to figure it all out.
Today was another bad day starting at 7am. They gave Dad Imitrex, Zofran and Tylenol at first. Imitrex for the possible migraine diagnosis, Zofran for the nausea. Talking with Mom today I found out that Dad has been having a headache with the pain and nausea. The Tylenol was for that.
Mom called at 7.30am and didn't initially get through. At 7.45am when she was walking into the Cathedral of Learning Dad called her back and told her that he was in pain. She was able to make it over to the hospital by 8.30am.
9.00am they gave Dad one unit of Dilaudid through his IV. That took the pain down to a 1 of 10, but the pain was still nagging and never went away. The nurses attempted 3 oral doses of Dilaudid, which did nothing to help. It seems that nothing orally is working for him once he get to a certain threshold.
Finally at 1.00pm they gave him another unit of Dilaudid, by 1.15pm the pain was gone. It only took over 6 hours to get relief.
More news. A Hematologist came in today. They tested the urine sample that sat in the fridge for a few days and it came back positive for Porphyria, a blood disorder. This is a potential diagnosis. Some highlights from the link:
"The acute porphyrias affect the nervous system. Symptoms of acute porphyria include pain in the chest, abdomen, limbs, or back; muscle numbness, tingling, paralysis, or cramping; vomiting; constipation; and personality changes or mental disorders. These symptoms appear intermittently."
"Porphyria can be triggered by drugs (barbiturates, tranquilizers, birth control pills, sedatives), chemicals, fasting, smoking, drinking alcohol, infections, emotional and physical stress, menstrual hormones, and exposure to the sun."
They started a fourth 24 hour urine collection. Dad did one over the weekend, since the second one was forgotten in the refrigerator. We'll see if this shows for sure. I'm pretty sure they will do other tests and things. It makes some sense with Dad having that sinus infection for close to 4 months. And some of the symptoms agree with what he is suffering from.
On a TOTAL side note. I was watching Law & Order: Special Victims Unit on USA. One of the characters has Porphyria. Way strange that I would watch that show today, the day that the doctors think my Dad my have this diagnosis.
Any questions or comments, comment by clicking on the comment button. I've opened it so that anyone can make comments without signing up for blogger.
-Paige
4.8 Montefiore Easter Sunday
Surprisingly illnesses don't know when holidays are. Kinda not fair.
Dad called Mom at 7am and asked her to come in. He woke up at 3am having an attack. He had another one around7am and a third around 10.30am. When I spoke to Mom today she said Dad was pretty drugged up with the Dilaudid.
On the good side, the flushing didn't happen and the pain was around a 4 instead of the usual 8-10. So that is a good thing. Small victories.
Abbie and Eatai were in all weekend and spent a good deal of time with Dad. Also he had some visits from family members. I would recomend that if you want to go in a visit him, to call ahead of time. If he's had an attack and was given Dilaudid, he may be super out of it. But I know he really enjoys the visits and calls and all of that. :)
-Paige
Dad called Mom at 7am and asked her to come in. He woke up at 3am having an attack. He had another one around7am and a third around 10.30am. When I spoke to Mom today she said Dad was pretty drugged up with the Dilaudid.
On the good side, the flushing didn't happen and the pain was around a 4 instead of the usual 8-10. So that is a good thing. Small victories.
Abbie and Eatai were in all weekend and spent a good deal of time with Dad. Also he had some visits from family members. I would recomend that if you want to go in a visit him, to call ahead of time. If he's had an attack and was given Dilaudid, he may be super out of it. But I know he really enjoys the visits and calls and all of that. :)
-Paige
4.7 Montefoire Saturday
No attacks today.
New possible diagnosis: Systemic Mastocytosis.
A ray of hope?
Dr. Rao, an endocrinologist specialist, visited. He thinks this may be a reaction to Zestril the blood pressure medicine that Dad has been on for about 20 years.
He took Dad off the Zestril tonight. We'll just have to wait and see.
-Paige
New possible diagnosis: Systemic Mastocytosis.
A ray of hope?
Dr. Rao, an endocrinologist specialist, visited. He thinks this may be a reaction to Zestril the blood pressure medicine that Dad has been on for about 20 years.
He took Dad off the Zestril tonight. We'll just have to wait and see.
-Paige
4.6 Montefiore Friday
dad had half a bowl of cereal in the morning. Mom called Dad at 8.20. The doctor was in talked to Dad. At that moment Dad was fine. Once he hung up the phone he started getting sick. By 8.30am an attack started and at 9am Dad called Mom to come in.
Today was a bit of trail and error. Dr. Harris, his endocrinologist, had some ideas and asked if they could try them.
They tried: Nitroglycerin orally- Nothing
Zofran and Fentanyl Lollipop orally- Nothing
They took blood at this time.
Antihistamine/Allegra- Nothing
Zantac- Nothing
Then they decided to go back to the Zofran and Dilaudid.
45 minutes passed and no meds.
Dr. Jovin, the attending physician came in:
1 unit of Dilaudid by IV- Nothing
30 min later: Zofran by IV- Nothing
5mg of Dilaudid orally- Nothing
12.30:2 more units of Dilaudid- Finally he had relief!
In the evening a team of endocrinologist paid Dad a visit.
-Paige
Today was a bit of trail and error. Dr. Harris, his endocrinologist, had some ideas and asked if they could try them.
They tried: Nitroglycerin orally- Nothing
Zofran and Fentanyl Lollipop orally- Nothing
They took blood at this time.
Antihistamine/Allegra- Nothing
Zantac- Nothing
Then they decided to go back to the Zofran and Dilaudid.
45 minutes passed and no meds.
Dr. Jovin, the attending physician came in:
1 unit of Dilaudid by IV- Nothing
30 min later: Zofran by IV- Nothing
5mg of Dilaudid orally- Nothing
12.30:2 more units of Dilaudid- Finally he had relief!
In the evening a team of endocrinologist paid Dad a visit.
-Paige
4.5 Montefiore Thurday
No attacks this day!! :)
Dad had a full body scan, something called an Octreotide Scan to determine if he has Carcinoid tumors. They had him take a hormone radio isotope and then have a full body scan.
In the afternoon he was seen by an Endocrinologist, Dr. Harris.
For lunch Dad had a small amount of mushroom soup. He was able to have some candy: a few M&M's, Clark Bar, and some Twizzlers. And for dinner, a small amount of a pot roast sandwich, and some mashed potatoes.
-Paige
Dad had a full body scan, something called an Octreotide Scan to determine if he has Carcinoid tumors. They had him take a hormone radio isotope and then have a full body scan.
In the afternoon he was seen by an Endocrinologist, Dr. Harris.
For lunch Dad had a small amount of mushroom soup. He was able to have some candy: a few M&M's, Clark Bar, and some Twizzlers. And for dinner, a small amount of a pot roast sandwich, and some mashed potatoes.
-Paige
4.4 Montefiore Wednesday
Another bad day. An attack starting at 5am. They had tried the Zofran pill again and the Fentanyl Lollipop, but it didn't help. Dad asked for the two shots, but they were in his chart, so the nurses had to call the doctor and then the pharmacy to get it. Finally he was given the first round of Zofran and Dilaudid shots which took away the nausea. He called Mom at 7.30am while she was on her way to work and asked her to come into the hospital instead. At 8am Dad received another Dilaudid which took away the rest of the pain.
And then another one at 11am before he was to go down for the CT Enterography that didn't happen the day before.
At 11.45 the pain was at a 8 on a 1 to 10 point scale.
At noon the pain was at a 9.
12.10 they gave him the shots in the arm of Zofran and 2 units of Dilaudid.
That took away the pain and they sent him down for the CT.
This day the doctors had him on a liquids only diet: water, coffee, soup broth.
-Paige
And then another one at 11am before he was to go down for the CT Enterography that didn't happen the day before.
At 11.45 the pain was at a 8 on a 1 to 10 point scale.
At noon the pain was at a 9.
12.10 they gave him the shots in the arm of Zofran and 2 units of Dilaudid.
That took away the pain and they sent him down for the CT.
This day the doctors had him on a liquids only diet: water, coffee, soup broth.
-Paige
4.3 Montefiore Tuesday
Last night the Doctor said he doesn't want Dad to be eating anything. Maybe this is food related? Also he didn't want Dad to eat because he had a colonoscopy today. There was the expectation of red rash like blood vessels, which would show the Ischemia (I think). They say some inflammation and took multiple biopsies. Everything from those biopsies has come back normal.
They were also supposed to re-do the CT Enterography, but no one ever showed up to take him down.
Around 7.30pm Dad ate some mushroom flatbread from the hospital cafe.
Mom noticed that Dad's face was flushed at 8pm. At 8.10pm Dad complained of a headache in his right side of sinus.
-Paige
They were also supposed to re-do the CT Enterography, but no one ever showed up to take him down.
Around 7.30pm Dad ate some mushroom flatbread from the hospital cafe.
Mom noticed that Dad's face was flushed at 8pm. At 8.10pm Dad complained of a headache in his right side of sinus.
-Paige
The Symptoms
I realized that I haven't really explained what Dad is feeling when he is having one of these attacks. Usually it is sometime after he eats.
First he'll have a bowel movement, not diarrhea, but substantial I understand. Then a warm flushing starts in his back and progresses quickly up his body to his head. Quickly nausea and pain follow. Dad feels like he needs to throw up to get relief from it all. Often he'll make himself throw up. You know when you are sick and your head gets all woozy and loose. That happens too. The pain is the biggest thing from my understanding. And it's not just a little pain. My Aunt Peggy explained it best, it's like he's writhing in pain. There is nothing that he can do to find relief from it.
It seems that the shots of Dilaudid and Zofran work the best. He's been needing various doses of the Dilaudid to get relief. Sometimes one shot or one unit in his IV works. Sometimes he'll need up to 3 or more to have relief from the pain.
Just thought you all should know what it was that we were talking about with the attacks and pain and all.
-Paige
First he'll have a bowel movement, not diarrhea, but substantial I understand. Then a warm flushing starts in his back and progresses quickly up his body to his head. Quickly nausea and pain follow. Dad feels like he needs to throw up to get relief from it all. Often he'll make himself throw up. You know when you are sick and your head gets all woozy and loose. That happens too. The pain is the biggest thing from my understanding. And it's not just a little pain. My Aunt Peggy explained it best, it's like he's writhing in pain. There is nothing that he can do to find relief from it.
It seems that the shots of Dilaudid and Zofran work the best. He's been needing various doses of the Dilaudid to get relief. Sometimes one shot or one unit in his IV works. Sometimes he'll need up to 3 or more to have relief from the pain.
Just thought you all should know what it was that we were talking about with the attacks and pain and all.
-Paige
4.2 Info from Dr.Roberts visit
This is from an email that I sent to Mom on Tuesday.
Dr. Roberts came in yesterday and said that he believes that Dad has either a Carcinoid Tumor or Ischemia of the Bowel.
The 24 hour urine test should show if there is a carcinoid tumor. The Doctor said that if it is the carcinoid, the reason that Dad gets sick every time he eats (which usually isn't the case with carcinoid) is maybe the tumor is around or surrounded by muscle which squeezes the tumor when the muscle is working on Dad's food, which then causes the carcinoid to secrete hormones, and that causes Dad to get sick. The test results should be back in a few days since they had to send it somewhere to get tested. Now the tumors are slow growing and small. Dr. Roberts said that he has been involved in cases where they have diagnosed carcinoid tumors but hadn't been able to find them for a while, until they grew larger to see. He said that is pretty rare, but to be aware of it. It could be one tumor or a few they aren't sure. And since they are slow growing and small that would account for the carcinoid not being seen in the CT scans that Dad has had done.
Speaking of CT Scan, the one that he had done ion the 26th wasn't done to the specification that Dr. Roberts ordered. He seemed pretty angry about this, but didn't seem as though he wanted Dad to do it over again. They didn't do some of the cross sections that he had ordered.
They have been taking blood from an artery when Dad has these episodes and they've found an increase of lactic acid and white blood cells. Lactic acid is produced when a muscle isn't getting enough oxygen. That would lead them to go with the escarpic bowel, but it's not a very high amount of lactic acid. Escarpic bowel is when the blood vessels to a certain part of the bowel aren't supplying it correctly. An angoigram would give them a better idea if this is the cause of Dad's episodes. Dr. Roberts seemed to want to have done this from the beginning, but the team and radiology have been against it as an initial test because of the invasive nature of the test. Dr. Roberts said to Dad yesterday that he is pushing for them to do the angoigram even before they get the results from the urine test. But then another doctor came up a few hours later and said they aren't going to do it yet. If it is this escarpic bowel, that doesn't account for the flushing and sweating that Dad keeps having. The treatment for the escarpic bowel is to remove that section of bowel.
Dr. Roberts said that they aren't 100% sure that either one of these are what Dad is suffering from. And if he had to pick he would want it to be the escarpic bowel, and not the carcinoid tumor.
-Paige
Dr. Roberts came in yesterday and said that he believes that Dad has either a Carcinoid Tumor or Ischemia of the Bowel.
The 24 hour urine test should show if there is a carcinoid tumor. The Doctor said that if it is the carcinoid, the reason that Dad gets sick every time he eats (which usually isn't the case with carcinoid) is maybe the tumor is around or surrounded by muscle which squeezes the tumor when the muscle is working on Dad's food, which then causes the carcinoid to secrete hormones, and that causes Dad to get sick. The test results should be back in a few days since they had to send it somewhere to get tested. Now the tumors are slow growing and small. Dr. Roberts said that he has been involved in cases where they have diagnosed carcinoid tumors but hadn't been able to find them for a while, until they grew larger to see. He said that is pretty rare, but to be aware of it. It could be one tumor or a few they aren't sure. And since they are slow growing and small that would account for the carcinoid not being seen in the CT scans that Dad has had done.
Speaking of CT Scan, the one that he had done ion the 26th wasn't done to the specification that Dr. Roberts ordered. He seemed pretty angry about this, but didn't seem as though he wanted Dad to do it over again. They didn't do some of the cross sections that he had ordered.
They have been taking blood from an artery when Dad has these episodes and they've found an increase of lactic acid and white blood cells. Lactic acid is produced when a muscle isn't getting enough oxygen. That would lead them to go with the escarpic bowel, but it's not a very high amount of lactic acid. Escarpic bowel is when the blood vessels to a certain part of the bowel aren't supplying it correctly. An angoigram would give them a better idea if this is the cause of Dad's episodes. Dr. Roberts seemed to want to have done this from the beginning, but the team and radiology have been against it as an initial test because of the invasive nature of the test. Dr. Roberts said to Dad yesterday that he is pushing for them to do the angoigram even before they get the results from the urine test. But then another doctor came up a few hours later and said they aren't going to do it yet. If it is this escarpic bowel, that doesn't account for the flushing and sweating that Dad keeps having. The treatment for the escarpic bowel is to remove that section of bowel.
Dr. Roberts said that they aren't 100% sure that either one of these are what Dad is suffering from. And if he had to pick he would want it to be the escarpic bowel, and not the carcinoid tumor.
-Paige
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