Happy Birthday Big Bird!!!!!
Big Bird's Birthday is on Sat., June 30. He will be celebrating 31 years of annoying me!
(I really should have been an only child!)
We are having a quite family celebration at home with a couple of his close friends for a BBQ and lots of visiting and catching up. The Fur Babies will get in on the act as well and celebrate along with him with some delectable treat that I will have to figure out today. I think we are expecting 12 adults and 6 fur babies....hehe
As for an update with where things stand, we are waiting to hear from UTHSA for scheduling an ERCP. They want to do this for exploratory purposes to see what is going on in is bile ducts and liver. This will be done some time in July-but who knows when-since we thought we would have heard something by now. He has been somewhat good the last few days-so that is very good.
I do want to send out prayers and well wishes to the Henshaw family from the PSC Support Group on Yahoo. Ken had his transplant and they have been through the ringer with complications, good news, worry, etc. If you can send some extra prayers to them, that would be grand!
Have a great weekend everyone...(and also Happy Birthday to Aunt Karen-her birthday is today)....
Friday, June 29, 2007
Thursday, June 21, 2007
Tattle tail
Tattle Tailing...
Yes, that is what I feel like we did. We tattled tailed. We met with his regular doctor, and told him how we just didn't feel like the hep docs were on our side. That they just didn't give us the warm fuzzies. How every time we leave San Antonio, we feel hopeless, and lost. At least his doctor gives us some hope that he will get through this. He said he would talk to them, and see if he can't arrange for us to meet with one doc every time we gone from now on. We shall see....
Big Bird isn't feeling so hot. The itching got REALLY bad yesterday. They called in a script for an antihistamine and at about 5:30 this morning it knocked him out, it has helped a wee bit, but he has scratched himself raw and drawn blood in a few spots. Took him in this morning for lab work-we shall see if it reveals anything. I am not convinced that blood work tells the whole story-but again I am not a medical expert, just the one that lives with Big Bird. The fatigue is really bad, probably worse than normal-too bad he can't sleep-I get tired just looking at him.
But, my last few posts have been a bit of a downer, we haven't lost our sense of humor I assure you-it is in tack and in full use in our house. In the sick and twisted way we are, he complains he doesn't feel good, I tell him he is just fine, after all his MELD is only 19.....(again sick and twisted).
We had to take a Transplant Education Class last week, one of the things it says, you can't have Grapefruit, or Pepper after transplant. But the most disturbing, you can't allow your pets to sleep with you after transplant. Good luck explaining that one to my dogs-whom all believe he is a giant pillow to maul and snuggle in the afternoon. I will let him explain it to their pouty little faces, he can have 4 puppy heads staring at him in wonder as to why, WHY they can't maul and snuggle. Yeah, that is gonna work out well...
Yes, that is what I feel like we did. We tattled tailed. We met with his regular doctor, and told him how we just didn't feel like the hep docs were on our side. That they just didn't give us the warm fuzzies. How every time we leave San Antonio, we feel hopeless, and lost. At least his doctor gives us some hope that he will get through this. He said he would talk to them, and see if he can't arrange for us to meet with one doc every time we gone from now on. We shall see....
Big Bird isn't feeling so hot. The itching got REALLY bad yesterday. They called in a script for an antihistamine and at about 5:30 this morning it knocked him out, it has helped a wee bit, but he has scratched himself raw and drawn blood in a few spots. Took him in this morning for lab work-we shall see if it reveals anything. I am not convinced that blood work tells the whole story-but again I am not a medical expert, just the one that lives with Big Bird. The fatigue is really bad, probably worse than normal-too bad he can't sleep-I get tired just looking at him.
But, my last few posts have been a bit of a downer, we haven't lost our sense of humor I assure you-it is in tack and in full use in our house. In the sick and twisted way we are, he complains he doesn't feel good, I tell him he is just fine, after all his MELD is only 19.....(again sick and twisted).
We had to take a Transplant Education Class last week, one of the things it says, you can't have Grapefruit, or Pepper after transplant. But the most disturbing, you can't allow your pets to sleep with you after transplant. Good luck explaining that one to my dogs-whom all believe he is a giant pillow to maul and snuggle in the afternoon. I will let him explain it to their pouty little faces, he can have 4 puppy heads staring at him in wonder as to why, WHY they can't maul and snuggle. Yeah, that is gonna work out well...
Thursday, June 14, 2007
Scream
Do you ever want to SCREAM??????
I know we do. For those that have never had the opportunity to encounter a transplant situation, count your blessings. It has to be one of the scariest, most frustrating, infuriating, agonizing, helpless waiting you will ever encounter.
We had a follow up appointment yesterday with the hepatologist. Hoping for some insight into new symptoms, waiting time, MELD reconfiguration blah blah blah. No real explanation for the feet swelling, no real explanation for the "burning sensation" his skin gets when he sweats, no explanation for the increased liver pains and back pains. Instead we get sent home with a pat on the back, your MELD is still 19, everything looks good we will see you in 3 months. Oh my the way your MRCP last month was inconclusive, but we think we want to go ahead and do an ERCP (obviously there is no way his current doctor could be correct in the fact that and ERCP is not an option for him).
I don't know about you, but it is really frustrating when all you feel like is a statistic, a number. Which essentially you are when waiting for a transplant. We worked, prayed so hard that he would make it to be listed, we finally made it then, it seems that every time we visit the hep doctors we get sucker punched, and any hopes that he will actually be transplanted are dashed. We were told yesterday that they will prolong transplantation as long as possible, especially since his liver was still functioning. They do offer exception points, but again, he isn't a candidate because his MELD is only 19, and his protein production is within an acceptable range. His bili is down 14.2, but they do show him as having a vitamin A & E deficiency, so they prescribed some vitamins for him.
The thing with being listed, you HAVE to do what ever the Transplant Hospital/team wants you to do. They wanted to schedule the ERCP yesterday, but I told them I would rather wait until they spoke with his doctor since he knew Big Bird's case and has been caring for him for the last decade. This hospital was suppose to be highly recommended, but I will tell you their hep doctors haven't been the greatest doctors I have ever encountered. They are suppose to be the "liver specialist" and yet, whenever we meet with them, we always feel hopeless, and that he will truly be lucky to get a transplant. We really leave there feeling like there is no hope, that transplant is a possibility but to not get our hopes up. We leave there feeling like a statistic, a number. A means of money making, because those doctors certainly lack some sort of human connection, a means of reassuring a patient and their loved ones that all is not lost. This particular doctor yesterday went as far as to tell us that transplant was not a "cure" for PSC, but rather a short reprieve, that more than likely in about 10 years he would likely experience recurrence and again be a transplant candidate. How about that loveliness, we haven't even got through this round, and we feel like we are being told to prepare for it again in 10 years.
After visits like this, you wonder (aside from the fact that he physically just can't handle it) why isn't he just going out and enjoying life to the fullest? Never mind his doctor has basically banned him from open water, no lakes, no rivers, no oceans-too many uncontrolled germs. But as far as the transplant hospital is concerned he is "fine". I beg to differ, I see him almost fall from dizzy spells. I see him want to crawl up in a fetal position almost in tears cause he is scared to death of dying, I see the fear in his eyes when his temp crawls up to a fever, then relief, cause it doesn't quite hit 100. I see the fear in his eyes every time he grasps his side, because the liver pains and back pains have increased. This is what I live with everyday, and then have to be sucker punched by a doctor who doesn't have the compassion to listen to a patient when he tells him, I don't care what my MELD is, I know my body and something isn't right, then be told OK, we will see you in 3 months.
This is our world, our frustrations, for whatever reason, the path we were set on. I don't understand it, but I have to believe Heavenly Father has put us on this path for a reason.....
I know we do. For those that have never had the opportunity to encounter a transplant situation, count your blessings. It has to be one of the scariest, most frustrating, infuriating, agonizing, helpless waiting you will ever encounter.
We had a follow up appointment yesterday with the hepatologist. Hoping for some insight into new symptoms, waiting time, MELD reconfiguration blah blah blah. No real explanation for the feet swelling, no real explanation for the "burning sensation" his skin gets when he sweats, no explanation for the increased liver pains and back pains. Instead we get sent home with a pat on the back, your MELD is still 19, everything looks good we will see you in 3 months. Oh my the way your MRCP last month was inconclusive, but we think we want to go ahead and do an ERCP (obviously there is no way his current doctor could be correct in the fact that and ERCP is not an option for him).
I don't know about you, but it is really frustrating when all you feel like is a statistic, a number. Which essentially you are when waiting for a transplant. We worked, prayed so hard that he would make it to be listed, we finally made it then, it seems that every time we visit the hep doctors we get sucker punched, and any hopes that he will actually be transplanted are dashed. We were told yesterday that they will prolong transplantation as long as possible, especially since his liver was still functioning. They do offer exception points, but again, he isn't a candidate because his MELD is only 19, and his protein production is within an acceptable range. His bili is down 14.2, but they do show him as having a vitamin A & E deficiency, so they prescribed some vitamins for him.
The thing with being listed, you HAVE to do what ever the Transplant Hospital/team wants you to do. They wanted to schedule the ERCP yesterday, but I told them I would rather wait until they spoke with his doctor since he knew Big Bird's case and has been caring for him for the last decade. This hospital was suppose to be highly recommended, but I will tell you their hep doctors haven't been the greatest doctors I have ever encountered. They are suppose to be the "liver specialist" and yet, whenever we meet with them, we always feel hopeless, and that he will truly be lucky to get a transplant. We really leave there feeling like there is no hope, that transplant is a possibility but to not get our hopes up. We leave there feeling like a statistic, a number. A means of money making, because those doctors certainly lack some sort of human connection, a means of reassuring a patient and their loved ones that all is not lost. This particular doctor yesterday went as far as to tell us that transplant was not a "cure" for PSC, but rather a short reprieve, that more than likely in about 10 years he would likely experience recurrence and again be a transplant candidate. How about that loveliness, we haven't even got through this round, and we feel like we are being told to prepare for it again in 10 years.
After visits like this, you wonder (aside from the fact that he physically just can't handle it) why isn't he just going out and enjoying life to the fullest? Never mind his doctor has basically banned him from open water, no lakes, no rivers, no oceans-too many uncontrolled germs. But as far as the transplant hospital is concerned he is "fine". I beg to differ, I see him almost fall from dizzy spells. I see him want to crawl up in a fetal position almost in tears cause he is scared to death of dying, I see the fear in his eyes when his temp crawls up to a fever, then relief, cause it doesn't quite hit 100. I see the fear in his eyes every time he grasps his side, because the liver pains and back pains have increased. This is what I live with everyday, and then have to be sucker punched by a doctor who doesn't have the compassion to listen to a patient when he tells him, I don't care what my MELD is, I know my body and something isn't right, then be told OK, we will see you in 3 months.
This is our world, our frustrations, for whatever reason, the path we were set on. I don't understand it, but I have to believe Heavenly Father has put us on this path for a reason.....
Wednesday, May 23, 2007
elephant man
Elephant Man has made an appearance.
Well not really, but boy do I like to tease Big Bird! New Symptom-swollen ankles and legs, with the added finesse of pain and tightness. Good times! LOL. Suddenly Tuesday afternoon, Big Birds ankles and legs swelled up. Now this wouldn't be so noticeable if he were not such a bean pole. But none the less it is. Put a call into the doctor, they said to keep the feet elevated, and he did all night long.
This afternoon took Big Bird in for an ultrasound on his legs-they wanted to rule out blood clots-and they did. NO blood clots found (thank goodness). But the mystery remains why all of the sudden? He does not have high blood pressure, his heart is in tip top shape-so we chalk it up to the stinky liver disease-PSC. It is after all a side affect.
He also had his routine blood work done last Friday (May 25, 2007) they got the blood work back and his MELD score jumped to 28 since his last blood draw April 30, 2007. So they want another draw, we are waiting to hear from the transplant hospital for orders. After they do this, and his MELD is the same, he will be bumped up the list to #3 in his blood class. WOW now that is a scary thought!
Well not really, but boy do I like to tease Big Bird! New Symptom-swollen ankles and legs, with the added finesse of pain and tightness. Good times! LOL. Suddenly Tuesday afternoon, Big Birds ankles and legs swelled up. Now this wouldn't be so noticeable if he were not such a bean pole. But none the less it is. Put a call into the doctor, they said to keep the feet elevated, and he did all night long.
This afternoon took Big Bird in for an ultrasound on his legs-they wanted to rule out blood clots-and they did. NO blood clots found (thank goodness). But the mystery remains why all of the sudden? He does not have high blood pressure, his heart is in tip top shape-so we chalk it up to the stinky liver disease-PSC. It is after all a side affect.
He also had his routine blood work done last Friday (May 25, 2007) they got the blood work back and his MELD score jumped to 28 since his last blood draw April 30, 2007. So they want another draw, we are waiting to hear from the transplant hospital for orders. After they do this, and his MELD is the same, he will be bumped up the list to #3 in his blood class. WOW now that is a scary thought!
Tuesday, May 01, 2007
LISTED
Listed!!!
After years of waiting and wishing. It is finally here! Big Bird is LISTED!!!!! He has a current MELD score of 20. He is 6th on the waiting list for his blood type (A+).
It is bitter sweet. You wait and wait for this, then it comes, you take a deep breathe, and then WAIT. So many people die waiting for an organ transplant, but so many people live because they get the gift of life. Bitter Sweet!
So, for my non humorous post today, I encourage everyone to consider being an organ donor. You never know who or how many lives you could save, by simply donating your organs. Talk to your family about-pray about it. For more information on organ donating you can visit http://www.organdonor.gov/.
After years of waiting and wishing. It is finally here! Big Bird is LISTED!!!!! He has a current MELD score of 20. He is 6th on the waiting list for his blood type (A+).
It is bitter sweet. You wait and wait for this, then it comes, you take a deep breathe, and then WAIT. So many people die waiting for an organ transplant, but so many people live because they get the gift of life. Bitter Sweet!
So, for my non humorous post today, I encourage everyone to consider being an organ donor. You never know who or how many lives you could save, by simply donating your organs. Talk to your family about-pray about it. For more information on organ donating you can visit http://www.organdonor.gov/.
Wednesday, April 25, 2007
One more test
The Last of the evaluation process!!!!!
OK, so on Monday April 30, Big Bird gets to go in for an MRCP & blood work. This is the last of his evaluation tests before listing. Woo Hoo! We are getting closer. He has been feeling a little wonky this week. Side pains, chills & hot flashes (if I didn't know better I would scream menopause-hehehe). Just something else to watch. Found out that his RX plan doesn't want to pay for URSO-to expensive go figure. Talked to his doc about that, so he is gonna try and go without for a couple weeks and see how he reacts, if not guess we will begin the pleading process again from Axacan for assistance.
The lactulose doesn't seem to be doing anything for the loopiness (or if you want the medical terminology-encephalopathy). The Tourette's (no he doesn't really have Tourerret's just something we can say that explains the bizarre things that spew from his mouth), and the "picking" is still there. So he is upping that to 4x a day.
But on a fun note, for us gamers in the house....Yes all three of us, Big Bird, cousin & me all play the addictive game of World of Warcraft. Silly we know, but it is our "family time". For those who play will know, Darkmoon Faire is coming to town this weekend, http://entertainment.upperdeck.com/wow/en/ , so we will be exploring the Card game version of WOW. They also have RL quests, so we will be able to take some goofy pics around town. And since we are guild leaders we think we need to participate in this silliness. You can learn about our guild at www.kktwow.net, Knights of Kirin Tor, we play on the Farstriders server.
Other than that all seems to be well-considering in our household. I will be needing to get in touch with our Bishop from Church so that we have some contacts in San Antonio-I have been putting that off until we were closer to having him listed. We will have to have someone that can come and give Blessings when he is in the hospital in San Antonio.
OK, so on Monday April 30, Big Bird gets to go in for an MRCP & blood work. This is the last of his evaluation tests before listing. Woo Hoo! We are getting closer. He has been feeling a little wonky this week. Side pains, chills & hot flashes (if I didn't know better I would scream menopause-hehehe). Just something else to watch. Found out that his RX plan doesn't want to pay for URSO-to expensive go figure. Talked to his doc about that, so he is gonna try and go without for a couple weeks and see how he reacts, if not guess we will begin the pleading process again from Axacan for assistance.
The lactulose doesn't seem to be doing anything for the loopiness (or if you want the medical terminology-encephalopathy). The Tourette's (no he doesn't really have Tourerret's just something we can say that explains the bizarre things that spew from his mouth), and the "picking" is still there. So he is upping that to 4x a day.
But on a fun note, for us gamers in the house....Yes all three of us, Big Bird, cousin & me all play the addictive game of World of Warcraft. Silly we know, but it is our "family time". For those who play will know, Darkmoon Faire is coming to town this weekend, http://entertainment.upperdeck.com/wow/en/ , so we will be exploring the Card game version of WOW. They also have RL quests, so we will be able to take some goofy pics around town. And since we are guild leaders we think we need to participate in this silliness. You can learn about our guild at www.kktwow.net, Knights of Kirin Tor, we play on the Farstriders server.
Other than that all seems to be well-considering in our household. I will be needing to get in touch with our Bishop from Church so that we have some contacts in San Antonio-I have been putting that off until we were closer to having him listed. We will have to have someone that can come and give Blessings when he is in the hospital in San Antonio.
Friday, April 06, 2007
Laugh
Laugh!!!!!
Laugh out loud!
So, we had a comment today (Thanks Buck!) I just had to laugh. I totally forgot to mention the pee test.
This was SOOOOOO gross! First you have to pee in a wonderful orange jug for a full 24 hours. They tell you to store your pee in the fridge or on ice. Could someone please tell me who would be sick enough to store your pee in the fridge in which you keep your food & drinks. That is gross.
We made the Big Bird keep his on ice in an ice chest, kept in the bathtub with the curtain drawn. It just grosses you out to think about it being there.
But let me remind you that you have to do the TWICE. One week apart. They want to make sure your kidneys are functioning. Nothing like coke colored pee to warm the gag reflux!
This is why you must always remember to LAUGH!!!!! We have a twisted sense of humor in our house, but you have to when you are going through something like this. You have to remember to laugh, cause sometimes it just gets to be too much. Faith, love & laughter are the things you have to hold onto.
Laugh out loud!
So, we had a comment today (Thanks Buck!) I just had to laugh. I totally forgot to mention the pee test.
This was SOOOOOO gross! First you have to pee in a wonderful orange jug for a full 24 hours. They tell you to store your pee in the fridge or on ice. Could someone please tell me who would be sick enough to store your pee in the fridge in which you keep your food & drinks. That is gross.
We made the Big Bird keep his on ice in an ice chest, kept in the bathtub with the curtain drawn. It just grosses you out to think about it being there.
But let me remind you that you have to do the TWICE. One week apart. They want to make sure your kidneys are functioning. Nothing like coke colored pee to warm the gag reflux!
This is why you must always remember to LAUGH!!!!! We have a twisted sense of humor in our house, but you have to when you are going through something like this. You have to remember to laugh, cause sometimes it just gets to be too much. Faith, love & laughter are the things you have to hold onto.
Thursday, April 05, 2007
One week of evals...
A week of evaluations entails.....
If you have every been sick enough to garner a week worth of intensive testing to see if you qualify to be put on the UNOS list for an ogran-then you know what that is like. If you are not, here is what a week worths of testing is schedule is like
Tuesday, March 27, 2007
8:00AM Dental Consult-Please report to the hospital 3o minutes early. Also, you are given a perscription for 4 horse pills to prevent infection for the 2 hours of x-rays and poking and prodding they will do to clear your mouth for any possible infections that may be looming.
1:00PM, CT Scan-please starve yourself! Nothing to eat or drink for 4 hours prior to the CT Scan.
2:30PM Clinic Appointment-Here we met with a less than personable Hep doc. He just didn't give me the warm fuzzies. One would think if you are there under going testing, you would think the doc would acknowledge you are sick-but instead leaves you feeling he would rather treat the disease (as if we haven't been doing that for the last 6 years).
4:40PM-FINALLY We get to go home (well hotel anyways) Exhausting and we are only on Day 1!
Wednesday, March 28, 2007.
7:00AM, EKG & ECHO-Have to be there 30 mins early (yeah cause 7 am isn't early enough-heck the sun isnt' even shinning yet!)
8:15AM Stress Test-yeah so they pumped him full of chemicals to stress his heart. Left a most lovely taste of metallic in his mouth. This test lasted until noon.
Mom & I sneak away and let him sleep for a couple hours. His lack of naps is not a happy scenario.
Thursday, March 29, 2007
9:15AM-Admissions-I still don't get what the purpose of this was, we got there showed them the letter, and they told us to just wait.
10:00AM-PFT's-His lungs are healthy-unfortunately he appears to not be using the full function of his lungs due to the enlargement of his liver. This is common in Liver Disease. Which does help explain the shortness of breath and dizziness.
11:00AM-Chest X-Ray-well they actually went ahead and did that when they did the CT Scan.
Woo Hoo we are done a wee bit early. Too bad it is raining cats & dogs so that really just doesn't leave us many options. We went and had lunch-then headed back to the hotel. Where we all napped. I really can't believe how exhausting all this is on everyone!
Friday, March 30, 2007
9:45AM-Cardiologist-Clear bill of health! His heart is healthy & normal. He has free cardio clearance for surgery-wooohooo
1:00PM-Nurse Clinic Appointment-well since they failed to administer the TB test, we cancelled this appt.
2:30PM-Social Work-We met with a social worker at the hospital. She talked to us about transplant patients. What to expect. About after care and medications that patients are on etc. She was impressed by his support-and was happy to see us there and him through this week.
His nurse coordinator-which is a super sweet lady-hopes to have the rest of his files & tests together to present his case to the transplant board this month.
If all goes well, by end of April he should be listed. They are putting him with a MELD score of 19.
If you have every been sick enough to garner a week worth of intensive testing to see if you qualify to be put on the UNOS list for an ogran-then you know what that is like. If you are not, here is what a week worths of testing is schedule is like
Tuesday, March 27, 2007
8:00AM Dental Consult-Please report to the hospital 3o minutes early. Also, you are given a perscription for 4 horse pills to prevent infection for the 2 hours of x-rays and poking and prodding they will do to clear your mouth for any possible infections that may be looming.
1:00PM, CT Scan-please starve yourself! Nothing to eat or drink for 4 hours prior to the CT Scan.
2:30PM Clinic Appointment-Here we met with a less than personable Hep doc. He just didn't give me the warm fuzzies. One would think if you are there under going testing, you would think the doc would acknowledge you are sick-but instead leaves you feeling he would rather treat the disease (as if we haven't been doing that for the last 6 years).
4:40PM-FINALLY We get to go home (well hotel anyways) Exhausting and we are only on Day 1!
Wednesday, March 28, 2007.
7:00AM, EKG & ECHO-Have to be there 30 mins early (yeah cause 7 am isn't early enough-heck the sun isnt' even shinning yet!)
8:15AM Stress Test-yeah so they pumped him full of chemicals to stress his heart. Left a most lovely taste of metallic in his mouth. This test lasted until noon.
Mom & I sneak away and let him sleep for a couple hours. His lack of naps is not a happy scenario.
Thursday, March 29, 2007
9:15AM-Admissions-I still don't get what the purpose of this was, we got there showed them the letter, and they told us to just wait.
10:00AM-PFT's-His lungs are healthy-unfortunately he appears to not be using the full function of his lungs due to the enlargement of his liver. This is common in Liver Disease. Which does help explain the shortness of breath and dizziness.
11:00AM-Chest X-Ray-well they actually went ahead and did that when they did the CT Scan.
Woo Hoo we are done a wee bit early. Too bad it is raining cats & dogs so that really just doesn't leave us many options. We went and had lunch-then headed back to the hotel. Where we all napped. I really can't believe how exhausting all this is on everyone!
Friday, March 30, 2007
9:45AM-Cardiologist-Clear bill of health! His heart is healthy & normal. He has free cardio clearance for surgery-wooohooo
1:00PM-Nurse Clinic Appointment-well since they failed to administer the TB test, we cancelled this appt.
2:30PM-Social Work-We met with a social worker at the hospital. She talked to us about transplant patients. What to expect. About after care and medications that patients are on etc. She was impressed by his support-and was happy to see us there and him through this week.
His nurse coordinator-which is a super sweet lady-hopes to have the rest of his files & tests together to present his case to the transplant board this month.
If all goes well, by end of April he should be listed. They are putting him with a MELD score of 19.
Saturday, February 10, 2007
We made it San Antonio
We made it to San Antonio........
We met with the Transplant Surgeon yesterday. They are going to evaluate Big Bird for Transplant. His nurse coordinater will be calling us within the next couple weeks to schedule the evaluation. This will take 3-4 days. Out-patient basis. He has a perliminary MELD score of 21 (based on blood work from December), but after being in the hospital and pumped full of IV antibiotics, his MELD dropped to an 18 based on the blood work done Friday morning-but they do acknowledge that the score lowered because of the antibiotics-fun stuff.....After all the evals and all is done, we are looking at possible listing for transplant in April or May....
The surgeon was very optimistic-which was assuring for both Big Bird and my mother. But there is a chance he could get really sick while waiting. Ah fun....But we will keep our fingers crossed, and keep the prayers going.
Just wanted to post an update that the appointment went well and we are on our way to what we have waited years for!!!!!!!
We met with the Transplant Surgeon yesterday. They are going to evaluate Big Bird for Transplant. His nurse coordinater will be calling us within the next couple weeks to schedule the evaluation. This will take 3-4 days. Out-patient basis. He has a perliminary MELD score of 21 (based on blood work from December), but after being in the hospital and pumped full of IV antibiotics, his MELD dropped to an 18 based on the blood work done Friday morning-but they do acknowledge that the score lowered because of the antibiotics-fun stuff.....After all the evals and all is done, we are looking at possible listing for transplant in April or May....
The surgeon was very optimistic-which was assuring for both Big Bird and my mother. But there is a chance he could get really sick while waiting. Ah fun....But we will keep our fingers crossed, and keep the prayers going.
Just wanted to post an update that the appointment went well and we are on our way to what we have waited years for!!!!!!!
Thursday, February 08, 2007
Home
HOME!!!!!!
Big Bird was released from the hospital around 7pm tonight. He is home, resting and preparing. We meet with the Transplant Surgeon tomorrow morning for a consult. I will post when we get home......
Big Bird was released from the hospital around 7pm tonight. He is home, resting and preparing. We meet with the Transplant Surgeon tomorrow morning for a consult. I will post when we get home......
Wednesday, February 07, 2007
Hospital visit again....
Hospital visit again..........
Big Bird is in the hospital. He started with low grade fevers last night. So after dealing with that off and on for several hours last night we headed to the ER at 11:30pm, I left the ER at 6:45am. They admitted him. There is an infection, just not sure what and where, as his blood tests are "normal" for him. Just the fluctuating temps. Frustrating for him, but for us as well......
The doctor will be back again to check on him. He was experiencing some tenderness in the right quadrant area-something new, but not necessarily anything...we hope!!!! No signs of ascites-good!!!
Will post more when we know more. They are pumping him with IV antibiotics and fluids. And of course his normal doc is out of town. And again-he gets sick on Tuesday-what is with Tuesday?????????
Big Bird is in the hospital. He started with low grade fevers last night. So after dealing with that off and on for several hours last night we headed to the ER at 11:30pm, I left the ER at 6:45am. They admitted him. There is an infection, just not sure what and where, as his blood tests are "normal" for him. Just the fluctuating temps. Frustrating for him, but for us as well......
The doctor will be back again to check on him. He was experiencing some tenderness in the right quadrant area-something new, but not necessarily anything...we hope!!!! No signs of ascites-good!!!
Will post more when we know more. They are pumping him with IV antibiotics and fluids. And of course his normal doc is out of town. And again-he gets sick on Tuesday-what is with Tuesday?????????
Monday, February 05, 2007
Medicare Effective!
Well we are officially into Medicare. However, the joys of working with State Aid programs SUCKS. We filled out ALL the appropriate paperwork. We sent in ALL the appropriate paper work on time. And yet the benefits are not there (mind you we got a letter telling him what he was approved of, and when the benefits will be available). Texas Health & Human Servics "doesn't know why benefits have not been released". Maybe because they don't know how to never mind, that wouldn't be nice to say......I am trying very hard this year to not say mean things....it is very hard......
We are anticipating the consult with the Transplant Hospital. Nerves are very frayed and on high alert. So much about Big Birds future will depend on this visit.....fun stuff!
Will post when we have details regarding the appointment.....
We are anticipating the consult with the Transplant Hospital. Nerves are very frayed and on high alert. So much about Big Birds future will depend on this visit.....fun stuff!
Will post when we have details regarding the appointment.....
Wednesday, January 31, 2007
Good news
Well, yesterday morning Big Bird's doctor called, the antibiotics are working Yippeeeeee!!! His bili was down from 25.2 on Tuesday (1/23) to 16! Good news. His doctor also said that he could post pone the ERCP that was scheduled for tomorrow until after Transplant Evaluation-so of course he did! Hopefully the Transplant hospital will call soon. Medicare if effective tomorrow. HOORAY!!!! This is so exciting. Some anxiety of him getting sick will be removed-because at least now he can get the medical attention he needs without the added stress of money being the issue.
There is an organization that is focused on bring research and attention to PSC-the liver disease which affects Big Bird, PSCPartners Seeking a Cure, they are sponsoring a virtual walk, you can register at www.pscpartners.org. It is $25.00 to register, they send you a T-shirt, a pen, envelope you collect signatures and monies-then send it back to them, they will display it at the conference in April. We won't be there, but I think it is still a worth while cause and one that actually goes directly to a disease that gets little funding as it is! So if you can-help out and register!
I will post as soon as we have transplant eval dates!
There is an organization that is focused on bring research and attention to PSC-the liver disease which affects Big Bird, PSCPartners Seeking a Cure, they are sponsoring a virtual walk, you can register at www.pscpartners.org. It is $25.00 to register, they send you a T-shirt, a pen, envelope you collect signatures and monies-then send it back to them, they will display it at the conference in April. We won't be there, but I think it is still a worth while cause and one that actually goes directly to a disease that gets little funding as it is! So if you can-help out and register!
I will post as soon as we have transplant eval dates!
Monday, January 29, 2007
Medicare we await thee
On Thursday, February 1, 2007-Medicare will be EFFECTIVE!!!!!!!! You have no idea what a relief this is!
On Thursday, February 1, 2007, Big Bird will be going in for a procedure called an ERCP. They are hoping to dilate his bile ducts to drain some of the excess bile from his system. Please offer prayers and good vibes to us as we deal with this. This isn't the first ERCP by any means, but complications can arise as with any medical procedure and general anesthesia.
On Thursday, February 1, 2007 the Transplant hospital will be able to begin verifying coverage. We should have an appointment within 2 weeks for evaluation.
As of today we are 6 days fever free. Yippee......As of today we are 3 days from health coverage!
On Thursday, February 1, 2007, Big Bird will be going in for a procedure called an ERCP. They are hoping to dilate his bile ducts to drain some of the excess bile from his system. Please offer prayers and good vibes to us as we deal with this. This isn't the first ERCP by any means, but complications can arise as with any medical procedure and general anesthesia.
On Thursday, February 1, 2007 the Transplant hospital will be able to begin verifying coverage. We should have an appointment within 2 weeks for evaluation.
As of today we are 6 days fever free. Yippee......As of today we are 3 days from health coverage!
Wednesday, January 24, 2007
Fevers
So, Big Bird woke up at 3AM with a fever at 6am it was 100.01, at 6:30am is was 100.04, at 6:35am we take alieve, got the fever down (wooohooo). Called his doctors office, they had him in for STAT blood work......
We got the blood work results back (of course they came back when I wasn't home so I didn't get them all) but my brother total bili came back at 25. He has been feeling "fine". A little anti-social but fine, considering-he has been stressed with all this waiting and anticipation that Medicare takes effect next week.
Well his doctor is not real thrilled with the bili count-it is the highest it has ever been. He is wanting to do an ERCP (knowing that the last ERCP done in Feb. 2005 he told us that stenting was no longer an option do to scarring). I just don't know what to think of the latest bili lvl. I really wish I had the other blood results-when I talked to the nurse this morning, she didn't have his chart just orders to get an ERCP schedule that his doc has his chart....
Do I worry, I don't know I ARGGGGGGGGGG
We got the blood work results back (of course they came back when I wasn't home so I didn't get them all) but my brother total bili came back at 25. He has been feeling "fine". A little anti-social but fine, considering-he has been stressed with all this waiting and anticipation that Medicare takes effect next week.
Well his doctor is not real thrilled with the bili count-it is the highest it has ever been. He is wanting to do an ERCP (knowing that the last ERCP done in Feb. 2005 he told us that stenting was no longer an option do to scarring). I just don't know what to think of the latest bili lvl. I really wish I had the other blood results-when I talked to the nurse this morning, she didn't have his chart just orders to get an ERCP schedule that his doc has his chart....
Do I worry, I don't know I ARGGGGGGGGGG
Friday, January 12, 2007
Happy New Year
Happy New Year! Everyone. I hope this year finds all of our friends and family, peace, hope, charity, love and prosperous.
We are in the home stretch of Big Bird receiving Medicare Benefits. December was a CRAZY month. Lots of forms to fill out. I am truly amazed at how difficult they make signing up for Medicare. Because, you don't just sign up for Medicare, there is Medicare Part A, then Medicare Part B, then Medicare Part D, then you go into supplemental insurance, blah blah blah. It is completely overwhelming, then I challenge you to try and find someone that works in one of the government offices with apathy and sympathy for what you are trying to figure out. They do exist, I managed to find one or two. Cherish them if you find them, because those one or two out there, can enlighten you to programs you kick yourself for not learning about earlier.
We learned about programs such as SLMB, QI-1. Big Bird qualifies for both of them, but was only approved for SLMB. We will take this, as it will help cover the Medicare Part B fees. Know we anxiously await response to his application for assistance for Medicare Part D. It is under review. Regardless of the fact that, that was the VERY FIRST application we ever submitted. His Medicare Coverage is affective February 1, 2007. YIPPIEE!!!!!!!
He is STABLE. This we are very thankful for! We do hope this trend continues. We have a follow up appointment for the last blood draw next week.
Now that Medicare is kicking into affect-we patiently await to here about referral to the Transplant Hospital for evaluation. Stomachs have been turning, sleep has been disturbed. Fear, Hope, Restlessness, Eagerness, Anticipation. Those can about sum up some of the feelings that go through our minds.
Well, I just thought that I would post the lasted on Big Bird. He is still alive and kicking. He (along with our cousin and myself-I am sadly to report-anxiously awaiting the release of World of Warcraft Burning Crusades- this is to happen next week-so we will be tide to our puters in our little fantasy land).
We are in the home stretch of Big Bird receiving Medicare Benefits. December was a CRAZY month. Lots of forms to fill out. I am truly amazed at how difficult they make signing up for Medicare. Because, you don't just sign up for Medicare, there is Medicare Part A, then Medicare Part B, then Medicare Part D, then you go into supplemental insurance, blah blah blah. It is completely overwhelming, then I challenge you to try and find someone that works in one of the government offices with apathy and sympathy for what you are trying to figure out. They do exist, I managed to find one or two. Cherish them if you find them, because those one or two out there, can enlighten you to programs you kick yourself for not learning about earlier.
We learned about programs such as SLMB, QI-1. Big Bird qualifies for both of them, but was only approved for SLMB. We will take this, as it will help cover the Medicare Part B fees. Know we anxiously await response to his application for assistance for Medicare Part D. It is under review. Regardless of the fact that, that was the VERY FIRST application we ever submitted. His Medicare Coverage is affective February 1, 2007. YIPPIEE!!!!!!!
He is STABLE. This we are very thankful for! We do hope this trend continues. We have a follow up appointment for the last blood draw next week.
Now that Medicare is kicking into affect-we patiently await to here about referral to the Transplant Hospital for evaluation. Stomachs have been turning, sleep has been disturbed. Fear, Hope, Restlessness, Eagerness, Anticipation. Those can about sum up some of the feelings that go through our minds.
Well, I just thought that I would post the lasted on Big Bird. He is still alive and kicking. He (along with our cousin and myself-I am sadly to report-anxiously awaiting the release of World of Warcraft Burning Crusades- this is to happen next week-so we will be tide to our puters in our little fantasy land).
Thursday, December 21, 2006
Oh the joys!
Oh the joys!
So December has been a roller coaster of sickness. First Big Bird decided that he thought he might go and start all the symptoms for a cholangitis attack (wasn't that nice of him). So he called his doctor, and on antibiotics we go, 10 days of Cipro & Faygl. Nice stuff huh! Now he has decided that he wants to get a cold-ya know he is messing with Christmas here and I REFUSE to spend Christmas in the hospital.
Big Bird is really starting to stress out. We got the Medicare enrollment stuff last month. We have the pretty little Red, White & Blue card in our paws (yes it is a pretty little card when you know that card is gonna be worth about 250k). We also signed up for the Medicare Supplement, so that will cover everything that Medicare won't. And believe me they do not make this an easy process. Then to top it off, he got kicked out of Health Services, so now we have to reapply. This is a total headache, cause now we have to reapply for the assistance to pay for the Medicare PartB & PartD I really don't know how the elderly deal with all this. It is overwhelming.
We did give the magic little card to his doctor today,l he is now going to fax over Big Bird's novel to the transplant hospital and get a case file started. So hopefully here in a week or so we will have some dates for transplant evaluation. This is will be stressful and relief all at the same time.
I just wish Big Bird would quit stressing cause trust me, I stress over all this enough for the entire family.....
So December has been a roller coaster of sickness. First Big Bird decided that he thought he might go and start all the symptoms for a cholangitis attack (wasn't that nice of him). So he called his doctor, and on antibiotics we go, 10 days of Cipro & Faygl. Nice stuff huh! Now he has decided that he wants to get a cold-ya know he is messing with Christmas here and I REFUSE to spend Christmas in the hospital.
Big Bird is really starting to stress out. We got the Medicare enrollment stuff last month. We have the pretty little Red, White & Blue card in our paws (yes it is a pretty little card when you know that card is gonna be worth about 250k). We also signed up for the Medicare Supplement, so that will cover everything that Medicare won't. And believe me they do not make this an easy process. Then to top it off, he got kicked out of Health Services, so now we have to reapply. This is a total headache, cause now we have to reapply for the assistance to pay for the Medicare PartB & PartD I really don't know how the elderly deal with all this. It is overwhelming.
We did give the magic little card to his doctor today,l he is now going to fax over Big Bird's novel to the transplant hospital and get a case file started. So hopefully here in a week or so we will have some dates for transplant evaluation. This is will be stressful and relief all at the same time.
I just wish Big Bird would quit stressing cause trust me, I stress over all this enough for the entire family.....
Thursday, November 09, 2006
Waiting
So, it is November, and let me tell you, the waiting is unbearable. On or about the 15th of November is the magic date that is set for my brother to receive the enrollment forms for Medicare. I can hardly believe that it is just around the corner. At the October visit we were told to plan on being referred to transplant center for eval the first week of February 2007-he will be covered beginning February 1, 2007. Scary scary scary!!!!!
He had his monthly follow up today-but I actually missed this one. He is avoiding me, he blew curfew last night (yes he is 30 years old with a curfew!) and he knows I am MAD!!!!! He finds it amusing to wake the house at 1AM knowing I have to get up and go to work!!! The butt! ;-)
When I have blood work details or any news I will post!
He had his monthly follow up today-but I actually missed this one. He is avoiding me, he blew curfew last night (yes he is 30 years old with a curfew!) and he knows I am MAD!!!!! He finds it amusing to wake the house at 1AM knowing I have to get up and go to work!!! The butt! ;-)
When I have blood work details or any news I will post!
Monday, October 09, 2006
Bloodwork
Bloodwork!
So last week was the monthly doctor visit. He is doing ok, levels are slightly rising again after being down for the last couple months. But, his whiteblood cell count was way out of range-a simmering infection somewhere. Oh the joys. So they did more blood work and we are now awaiting the results. In the mean time- Dusty has to get some teeth pulled. The dentist was wanting to save his teeth-the doc overrules, pull 'em! Apparently his immune system can't handle the healing it would take to do root canals and all. This doesn't sit well for big bird. But, we finally convinced him that he could get a bridge made and fill in the gaps and no one would be any the wiser. Well except now that I have broadcasted it to all to read.
And then get this, he says his fatigue (and yes he does get extreme fatigue-I'm just annoyed) gets to where it exhausts him-so he got medical approval for applying for handicap parking permits. And he didn't even get one for me. Oh no he gets them for his car and our cousins car (just because we take her car for running around and it makes more sense still doesn't mean I have to like it!). He is such a spoiled brat!!!!!
I keep having dreams that things are gonna turn for the worse, boy I hope they are just fears and not something to come! Big bird's medicare enrollment forms should be coming next month. We are in our last 5 month stretch. Keep the good vibes up.
So last week was the monthly doctor visit. He is doing ok, levels are slightly rising again after being down for the last couple months. But, his whiteblood cell count was way out of range-a simmering infection somewhere. Oh the joys. So they did more blood work and we are now awaiting the results. In the mean time- Dusty has to get some teeth pulled. The dentist was wanting to save his teeth-the doc overrules, pull 'em! Apparently his immune system can't handle the healing it would take to do root canals and all. This doesn't sit well for big bird. But, we finally convinced him that he could get a bridge made and fill in the gaps and no one would be any the wiser. Well except now that I have broadcasted it to all to read.
And then get this, he says his fatigue (and yes he does get extreme fatigue-I'm just annoyed) gets to where it exhausts him-so he got medical approval for applying for handicap parking permits. And he didn't even get one for me. Oh no he gets them for his car and our cousins car (just because we take her car for running around and it makes more sense still doesn't mean I have to like it!). He is such a spoiled brat!!!!!
I keep having dreams that things are gonna turn for the worse, boy I hope they are just fears and not something to come! Big bird's medicare enrollment forms should be coming next month. We are in our last 5 month stretch. Keep the good vibes up.
Monday, September 25, 2006
Hope
Hope-
Today, I got hope. I got a much anticipated email from the Transplant Socical Worker. Fundraising may not need to be as drastic as we once thought. Medicare will pick up on a lot, she has asked us to call when we get the enrollment forms and she will guide us through so we get the best policies. Woo hoo. This is such good news. So, it sounds as though most of our fundraising will need to be for his 1 week hospital visit in April and anything that may come up between now and February. What a HUGE relief. This is such fantastic news.
Dusty goes in to have his blood drawn again. His bili as been down the last two months, last month he was at 12.4 (normal range is .1-2.0), so hopefully he will keep that trend up. He has also looked a little less yellow the last week or so. He has also gotten a little more social and been hanging out with some of his friends-a good thing.
So all in all we are on a high note-but cautious about it. We all know it only takes a mild fever to take him down fast.
But I just had to share the good news.
Cheers-
Today, I got hope. I got a much anticipated email from the Transplant Socical Worker. Fundraising may not need to be as drastic as we once thought. Medicare will pick up on a lot, she has asked us to call when we get the enrollment forms and she will guide us through so we get the best policies. Woo hoo. This is such good news. So, it sounds as though most of our fundraising will need to be for his 1 week hospital visit in April and anything that may come up between now and February. What a HUGE relief. This is such fantastic news.
Dusty goes in to have his blood drawn again. His bili as been down the last two months, last month he was at 12.4 (normal range is .1-2.0), so hopefully he will keep that trend up. He has also looked a little less yellow the last week or so. He has also gotten a little more social and been hanging out with some of his friends-a good thing.
So all in all we are on a high note-but cautious about it. We all know it only takes a mild fever to take him down fast.
But I just had to share the good news.
Cheers-
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