OK, one more update!
Just confirmed that the UAB Liver Center (finally) has all of the blood test results they need (Praise the Lord) and Tom's MELD score has dropped to 13. While this is a great thing it just means we have a long wait if he is going to get a liver. Who knows, maybe he'll continue to get better and won't need one after all !?!?!?
The biggest change was in the blood clotting factors which the liver makes and his must be doing a good job because the results are a full point lower than they were a month ago - which is great. The docs are a bit concerned about his anemia so he's going to start taking folic acid today and may need a blood transfusion in the next week or so - hopefully not this week but if it's necessary, that's what we'll do. It would just require Tom to go to the hospital for a couple of hours. Tom's kidney doctor made the transfusion recommendation, his gastroenterologist is being informed and the coordinator at the UAB Liver Center is also going to ask the transplant doctors what they think.
Tom will not need to have the next blood results reported for the wait list until February 23!
Wednesday, November 23, 2011
THIRD BLOOD TEST!
Yes, third!!
Tom has now made three trips to his doctors office to get the required blood work submitted TODAY or he falls to a MELD score of 6 on the transplant list (which is bad). Apparently on the second trip they only ran the tests they didn't get the first time. All of the tests have to be run on the same day so that required the third trip. He also had a dentist appointment yesterday afternoon to get the permanent crowns. He called me and asked if I could come and get him. He thought he would have enough strength to get to one appointment, but not both. So I left work and shuttled him back and forth yesterday afternoon. I will be following up this morning with his doctors office to verify they fax the test results and then follow up with the Liver Center to make sure they have everything they need. If they don't, I have no idea what we're going to do. I'm praying like crazy they have everything they need. The benefit of getting them run a third time is that I had requested they check Tom's ammonia level and they were going to do that this time. They checked his potassium level and it is normal.
For those of you who think you're the only one who has days like this, you can thank us because you are not alone - ever. And, for those of you who never have days like this, you can thank us too - the reason it never happens to you is because it's always happening to us! :-)
Anyway, I asked Tom's nurse if one of the doctors could review his blood test results just to make sure everything looked OK - this being a holiday weekend and all. His PCP is off this week. Dr. Miller, his gastroenterologist, called yesterday and told me everything looked good, which of course is great news. Dr. Miller was shocked at how good the kidney numbers were. He said that Tom's bilirubin was a little high and his albumin is low and he's also anemic (which is hard to believe because he is taking 3 iron pills daily). The bilirubin and albumin are 2 of the 5 tests make up the MELD score. I kind of hope it at least stays where it is or even goes up a little but I'm thinking it will go down and we'll be waiting longer.
We finally have the clearance letter from the dentist so I'll fax that this morning. Tom has an appointment at the UAB Liver Center on Dec. 21. He is supposed to see his PCP on the 15th so I'm going to get that changed to the week of the 5th, if possible, to make sure someone is seeing Tom every 2 weeks. That makes me feel a lot better.
We pray you will all have a Happy Thanksgiving. We are thankful for you!
Tom has now made three trips to his doctors office to get the required blood work submitted TODAY or he falls to a MELD score of 6 on the transplant list (which is bad). Apparently on the second trip they only ran the tests they didn't get the first time. All of the tests have to be run on the same day so that required the third trip. He also had a dentist appointment yesterday afternoon to get the permanent crowns. He called me and asked if I could come and get him. He thought he would have enough strength to get to one appointment, but not both. So I left work and shuttled him back and forth yesterday afternoon. I will be following up this morning with his doctors office to verify they fax the test results and then follow up with the Liver Center to make sure they have everything they need. If they don't, I have no idea what we're going to do. I'm praying like crazy they have everything they need. The benefit of getting them run a third time is that I had requested they check Tom's ammonia level and they were going to do that this time. They checked his potassium level and it is normal.
For those of you who think you're the only one who has days like this, you can thank us because you are not alone - ever. And, for those of you who never have days like this, you can thank us too - the reason it never happens to you is because it's always happening to us! :-)
Anyway, I asked Tom's nurse if one of the doctors could review his blood test results just to make sure everything looked OK - this being a holiday weekend and all. His PCP is off this week. Dr. Miller, his gastroenterologist, called yesterday and told me everything looked good, which of course is great news. Dr. Miller was shocked at how good the kidney numbers were. He said that Tom's bilirubin was a little high and his albumin is low and he's also anemic (which is hard to believe because he is taking 3 iron pills daily). The bilirubin and albumin are 2 of the 5 tests make up the MELD score. I kind of hope it at least stays where it is or even goes up a little but I'm thinking it will go down and we'll be waiting longer.
We finally have the clearance letter from the dentist so I'll fax that this morning. Tom has an appointment at the UAB Liver Center on Dec. 21. He is supposed to see his PCP on the 15th so I'm going to get that changed to the week of the 5th, if possible, to make sure someone is seeing Tom every 2 weeks. That makes me feel a lot better.
We pray you will all have a Happy Thanksgiving. We are thankful for you!
Monday, November 21, 2011
THANKFUL
Yes, we are thankful - for so many people: family, friends and strangers whose prayers have carried us through this most difficult year!
The sermon in church yesterday was about thankfulness. We are to be thankful for the good things and the trials. So, on my list, I thank God for Tom's illness and for our suffering. It has brought us closer together and allowed us the privilege of being cared for by so many wonderful people.
Tom is really doing well. He had two doctors appointments last week. We are waiting for the blood tests results from both which will be sent to the UAB Liver Center to be submitted to the National Registry. His results are required to be submitted on the 24th. Based on the results from two weeks ago, if these are anything like those, Tom's MELD score will be lower which means he will move down the list. This means he is feeling better but the wait for a liver will be longer. It has been reallly nice to have him feeling so much better for the past 4 weeks. He is getting stronger each day, and doesn't use the walker nearly as much. He goes out on his own from time to time and even cleaned the family room carpet over two days last week (not that it was that much work, it was just that filthy)!
We are looking forward to Thanksgiving in Nashville. We will go out to dinner on Thursday but Tom is still planning to fry a turkey at some point this week. As long as he is strong enough to handle the set-up and clean-up, that's OK with me! I think the steroids Tom is on make him really hungry because he is eating like crazy - lots of grapes but also lots of Ben & Jerry's frozen yogurt!
I have moved our suitcases out of the kitchen now so if the Transplant Center calls, it will be an ordeal to get everything back together. We would very much like to have all of this behind us but each day we wait is an opportunity for Tom to get even stronger so he has been working hard to do just that.
We wish you all a wonderful Thanksgiving!
To God be the Glory!
The sermon in church yesterday was about thankfulness. We are to be thankful for the good things and the trials. So, on my list, I thank God for Tom's illness and for our suffering. It has brought us closer together and allowed us the privilege of being cared for by so many wonderful people.
Tom is really doing well. He had two doctors appointments last week. We are waiting for the blood tests results from both which will be sent to the UAB Liver Center to be submitted to the National Registry. His results are required to be submitted on the 24th. Based on the results from two weeks ago, if these are anything like those, Tom's MELD score will be lower which means he will move down the list. This means he is feeling better but the wait for a liver will be longer. It has been reallly nice to have him feeling so much better for the past 4 weeks. He is getting stronger each day, and doesn't use the walker nearly as much. He goes out on his own from time to time and even cleaned the family room carpet over two days last week (not that it was that much work, it was just that filthy)!
We are looking forward to Thanksgiving in Nashville. We will go out to dinner on Thursday but Tom is still planning to fry a turkey at some point this week. As long as he is strong enough to handle the set-up and clean-up, that's OK with me! I think the steroids Tom is on make him really hungry because he is eating like crazy - lots of grapes but also lots of Ben & Jerry's frozen yogurt!
I have moved our suitcases out of the kitchen now so if the Transplant Center calls, it will be an ordeal to get everything back together. We would very much like to have all of this behind us but each day we wait is an opportunity for Tom to get even stronger so he has been working hard to do just that.
We wish you all a wonderful Thanksgiving!
To God be the Glory!
Wednesday, November 9, 2011
CROWNS
Tom went to Dr. Rutland for a follow-up appointment on Monday morning. Apparently things are good because we haven't heard from them! That would mean that the potassium level is back in line. The scales indicated that Tom lost 20 lbs over the weekend so that is a bit of a concern. Dr. Rutland requested Tom make an appointment with Dr. Dunn (kidneys) just to make sure the weight loss is not upsetting the kidneys - even though the kidney numbers looked good.
Tom already had an appointment scheduled with Dr. Dunn for next week. We tried to move that to this week but there were no openings.
I am currently waiting on calls from Dr. Rutland to verify that Monday's blood tests were OK and from the UAB Liver Center to verify that they received the new labs and to find out if, by chance, they moved Tom further up the waiting list. I also want them to know about the weight loss. It does not seem that Tom is dehydrated and he's eating like a horse so hopefully it is just the excess fluid. He is getting around so much better now.
One of the other items that the Transplant process "recommends" but does not require is clearance from Tom's dentist. Well, Tom didn't really have a dentist . . . until yesterday. I made him an appointment at my dentist and 4 hours later, Tom emerged with two temporary crowns, two replaced fillings and an appointment for next week. Kudos to Dr. Rick King and staff in Hillsboro Village for rearranging their schedule to go ahead and do all of that work yesterday, for finding a lab that can make the permanent crowns in one week instead of two, and rearranging their schedule for next week so that Tom and I can go a the same time to have our teeth cleaned and Tom can have the permanent crowns "installed". Once that is done, Tom will have the clearance letter from his new dentist!
Needless to say, he had a long day yesterday but was quite the trooper. I know all of that work had to hurt!
Tom continues to do well with Physical Therapy. He has it three times again this week. I have been helping him with some of his exercises and he's doing better than I expected. I hope he can keep improving his strength - I would love to see him stop using the walker really soon!
There's not much more to say at this point. We continue to wait and pray.
Tom already had an appointment scheduled with Dr. Dunn for next week. We tried to move that to this week but there were no openings.
I am currently waiting on calls from Dr. Rutland to verify that Monday's blood tests were OK and from the UAB Liver Center to verify that they received the new labs and to find out if, by chance, they moved Tom further up the waiting list. I also want them to know about the weight loss. It does not seem that Tom is dehydrated and he's eating like a horse so hopefully it is just the excess fluid. He is getting around so much better now.
One of the other items that the Transplant process "recommends" but does not require is clearance from Tom's dentist. Well, Tom didn't really have a dentist . . . until yesterday. I made him an appointment at my dentist and 4 hours later, Tom emerged with two temporary crowns, two replaced fillings and an appointment for next week. Kudos to Dr. Rick King and staff in Hillsboro Village for rearranging their schedule to go ahead and do all of that work yesterday, for finding a lab that can make the permanent crowns in one week instead of two, and rearranging their schedule for next week so that Tom and I can go a the same time to have our teeth cleaned and Tom can have the permanent crowns "installed". Once that is done, Tom will have the clearance letter from his new dentist!
Needless to say, he had a long day yesterday but was quite the trooper. I know all of that work had to hurt!
Tom continues to do well with Physical Therapy. He has it three times again this week. I have been helping him with some of his exercises and he's doing better than I expected. I hope he can keep improving his strength - I would love to see him stop using the walker really soon!
There's not much more to say at this point. We continue to wait and pray.
Sunday, November 6, 2011
A TRIP TO THE DOCTOR
Thursday night I noticed Tom's ammonia level might be going up again. He also seemed a little more lethargic. So, I pretty much decided we were going to get up Friday morning and head to Birmingham. Even though Tom had a doctors appointment scheduled with his PCP here in Nashville on Monday, I know what a difference 2 days can make - especially on the weekend. Tom, of course, didn't want any part of it for fear he would end up in the hospital again.
On Friday morning, he got up announcing how good he felt. I told him that was a lame attempt to call me off but I didn't bite. I called the UAB Liver Center at 8 a.m. only to be told that ALL of the medical doctors were in California at a conference. Did I tell you ALL of his doctors were there?!?!? Basically, the person at the Liver Center told me if we came down we should go to the ER but she didn't really have anyone who could see him. I asked what happened if a liver became available - she said the surgeons were there but they wouldn't "see" Tom on just a regular office visit. This is the kind of luck Tom and I tend to have.
So, my next call was to his PCP here in Nashville to see if there was any way I could get Tom in that day. There was a 4 pm appointment available. I told the nurse I wanted Tom to have his blood checked because if something was not right, I wanted to be able to take him to UAB if he needed to be admitted to the hospital. After a few minutes on hold, she told me to be there at 11:30. We were seen by Dr. Rutland right on time. They drew blood right there in the office (we didn't even have to go to the lab which was just one floor down). Dr. Rutland also had them draw enough to send all of the required labs to the UAB Liver Center. If these results are worse, they will submit them and Tom will move up the list. So, I'm kind of hoping the results are just a little worse to help his cause. Dr. Rutland told us he also wanted us to keep the Monday appointment (which is now at 9:15 am). He was very "on the ball" about assessing Tom's condition. He also told us three times before leaving the office that if anything came up over the weekend to be sure to call or go to the Emergeny Room. I told Tom I really liked this kind of attention!
Dr. Rutland called a couple of hours later and told us Tom's potassium level was high. He called in an RX and also told him to stop taking one of the diuretics. Tom has lost about 30 lbs since he got home from UAB! We will be back at the doctor in the morning - probably for more blood work.
In the meantime, things seem a little better. Tom, the puppies and I walked up the street and back yesterday. Today when I got home from church, he suggested we go out to lunch!
I've mentioned before that from the beginning of Tom's illness, I have told myself (and others) "one day at a time". My devotion for Friday morning was "one step at a time". Every time I tried to plan out the day, whether to get to Birmingham early or late, what to do with the dogs, etc. God changed things and it required me to focus on "one step at a time". Things did work out and hopefully they will improve Tom's chances overall. I was not liking my life at all on Friday. Although I didn't have time for the "why me?" pity party, I did have a conversation with God that went something like "God, I don't know what you are trying to teach me in all of this but it's not working and I'm not getting it so I think You should give up and try teaching me something different and maybe a little easier". We'll see what happens.
This morning, our Sunday School lesson was on Suffering. Does God cause suffering?, why does God allow suffering? Of course some suffering is caused by human sin, other suffering is caused by nature. The Bible does not promise us a "perfect life". Christ suffered also. We may never know these answers this side of Heaven. The great news is that God is with us during our suffering, just as He was with Christ when He suffered on the Cross. I can't imagine going through this without God and the knowledge that He will always be with me. It's also obvious that God speaks to us through devotions, Sunday School teachers and lessons and of course, the Bible.
So we will "press on" not just on one day at a time, but one step at a time.
I'll be following up with the UAB Transplant Coordinator on Tuesday to verify that the blood test results have been received. Hopefully she will be able to tell me at that time if they raised Tom's MELD score. The docs are supposed to return on Wednesday.
On Friday morning, he got up announcing how good he felt. I told him that was a lame attempt to call me off but I didn't bite. I called the UAB Liver Center at 8 a.m. only to be told that ALL of the medical doctors were in California at a conference. Did I tell you ALL of his doctors were there?!?!? Basically, the person at the Liver Center told me if we came down we should go to the ER but she didn't really have anyone who could see him. I asked what happened if a liver became available - she said the surgeons were there but they wouldn't "see" Tom on just a regular office visit. This is the kind of luck Tom and I tend to have.
So, my next call was to his PCP here in Nashville to see if there was any way I could get Tom in that day. There was a 4 pm appointment available. I told the nurse I wanted Tom to have his blood checked because if something was not right, I wanted to be able to take him to UAB if he needed to be admitted to the hospital. After a few minutes on hold, she told me to be there at 11:30. We were seen by Dr. Rutland right on time. They drew blood right there in the office (we didn't even have to go to the lab which was just one floor down). Dr. Rutland also had them draw enough to send all of the required labs to the UAB Liver Center. If these results are worse, they will submit them and Tom will move up the list. So, I'm kind of hoping the results are just a little worse to help his cause. Dr. Rutland told us he also wanted us to keep the Monday appointment (which is now at 9:15 am). He was very "on the ball" about assessing Tom's condition. He also told us three times before leaving the office that if anything came up over the weekend to be sure to call or go to the Emergeny Room. I told Tom I really liked this kind of attention!
Dr. Rutland called a couple of hours later and told us Tom's potassium level was high. He called in an RX and also told him to stop taking one of the diuretics. Tom has lost about 30 lbs since he got home from UAB! We will be back at the doctor in the morning - probably for more blood work.
In the meantime, things seem a little better. Tom, the puppies and I walked up the street and back yesterday. Today when I got home from church, he suggested we go out to lunch!
I've mentioned before that from the beginning of Tom's illness, I have told myself (and others) "one day at a time". My devotion for Friday morning was "one step at a time". Every time I tried to plan out the day, whether to get to Birmingham early or late, what to do with the dogs, etc. God changed things and it required me to focus on "one step at a time". Things did work out and hopefully they will improve Tom's chances overall. I was not liking my life at all on Friday. Although I didn't have time for the "why me?" pity party, I did have a conversation with God that went something like "God, I don't know what you are trying to teach me in all of this but it's not working and I'm not getting it so I think You should give up and try teaching me something different and maybe a little easier". We'll see what happens.
This morning, our Sunday School lesson was on Suffering. Does God cause suffering?, why does God allow suffering? Of course some suffering is caused by human sin, other suffering is caused by nature. The Bible does not promise us a "perfect life". Christ suffered also. We may never know these answers this side of Heaven. The great news is that God is with us during our suffering, just as He was with Christ when He suffered on the Cross. I can't imagine going through this without God and the knowledge that He will always be with me. It's also obvious that God speaks to us through devotions, Sunday School teachers and lessons and of course, the Bible.
So we will "press on" not just on one day at a time, but one step at a time.
I'll be following up with the UAB Transplant Coordinator on Tuesday to verify that the blood test results have been received. Hopefully she will be able to tell me at that time if they raised Tom's MELD score. The docs are supposed to return on Wednesday.
Wednesday, November 2, 2011
MID-WEEK UPDATE
As previously mentioned, being at home doesn't provide much to chat about so I'm not posting as often as I do when Tom is in the hospital. Hopefully these occasional posts will continue - at least until we get "the call".
So, we're still waiting on "the call" for a liver. Tom is doing great at home - mostly on his own. PT is coming 3 times this week. Bob, a friend and fellow Sunday School class member, came over and spent some time with Tom yesterday. I may work from home a few hours tomorrow (Thursday). While he is doing this well, I am logging as many hours at the office as possible. Besides, the puppies drive me crazy!
Tom's friends from work, Dave and David, came over Sunday and built a new ramp at the back door. Many years ago, Tom built a ramp for Maxie when it became difficult for her to get up the steps. After Maxie died, we kept the ramp but it was beginning to rot. The new one is much longer so we're all trying to get used to it.
Tom's doctors appointment with his PCP here in Nashville is Monday afternoon. We're anxious to get blood tests done to see if they will bump Tom up on the list.
Please join us in praying that "the call" will come soon!
So, we're still waiting on "the call" for a liver. Tom is doing great at home - mostly on his own. PT is coming 3 times this week. Bob, a friend and fellow Sunday School class member, came over and spent some time with Tom yesterday. I may work from home a few hours tomorrow (Thursday). While he is doing this well, I am logging as many hours at the office as possible. Besides, the puppies drive me crazy!
Tom's friends from work, Dave and David, came over Sunday and built a new ramp at the back door. Many years ago, Tom built a ramp for Maxie when it became difficult for her to get up the steps. After Maxie died, we kept the ramp but it was beginning to rot. The new one is much longer so we're all trying to get used to it.
Tom's doctors appointment with his PCP here in Nashville is Monday afternoon. We're anxious to get blood tests done to see if they will bump Tom up on the list.
Please join us in praying that "the call" will come soon!
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