Alan remains in the south. I think he's a great deal warmer there than we are in the north!
He had good labs and a good appointment at clinic last Thursday. One medication was reduced and two removed.
A couple of good days, which will hopefully lead to more. Even his daughter thought he looked a little more chipper.
I'll be rejoining him next week, with thoughts of bringing him home in January.
The address is actually Estate Hill Street not Drive.
Monday, December 8, 2008
Friday, November 28, 2008
New York
Well, Alan remains in sunny NC -- 60 degrees there today, as I watch the snow fall out my office window here in NY.
He's still adjusting to medications and hopefully will be able to travel north in mid-January.
Address correction: 7811 Estate Hill Drive, Apt. 1217, Raleigh, NC 27617
We hope you all enjoyed a relaxing Thanksgiving!
He's still adjusting to medications and hopefully will be able to travel north in mid-January.
Address correction: 7811 Estate Hill Drive, Apt. 1217, Raleigh, NC 27617
We hope you all enjoyed a relaxing Thanksgiving!
Sunday, November 23, 2008
Tune Up
We had a scheduled day at the transplant clinic on Thursday, 11/20. Alan was in for a "tune up" as they called it. All of the liver counts are great. The other ones that are impacted by the medications are a little off. Potassium - high, magnesium - low, creatinin - high, but lower than it was, anemic - so he needed a shot for red blood cell production. There were some other things askew, but those are the ones that seem to be getting the most attention.
The follow up care is amazing. We have no questions that go unanswered. They are continually reading his labs. He may be scheduled for another tune up next week as well. This is a four - five hour IV drip with some shots thrown in for good measure.
It's a relaxing room. The staff is great, and the care is phenomenal.
We'll be heading out for labs in the morning and then moving into the next apartment. For the next month and a half or so he can receive mail either at A's, or 7811 Grand Estates Street, Apt. 1217, Raleigh, NC 27617
Alan's brother has opened his schedule for the next few weeks, so I'll be heading home on Wednesday 11/26 and back to NC on 12/17. Tom will stay with Alan for most of that time.
He's not cleared to drive yet, and is walking distance to Super WalMart, Panera Bread, his daughters, Starbucks, etc. so hopefully everything will go smoothly.
The follow up care is amazing. We have no questions that go unanswered. They are continually reading his labs. He may be scheduled for another tune up next week as well. This is a four - five hour IV drip with some shots thrown in for good measure.
It's a relaxing room. The staff is great, and the care is phenomenal.
We'll be heading out for labs in the morning and then moving into the next apartment. For the next month and a half or so he can receive mail either at A's, or 7811 Grand Estates Street, Apt. 1217, Raleigh, NC 27617
Alan's brother has opened his schedule for the next few weeks, so I'll be heading home on Wednesday 11/26 and back to NC on 12/17. Tom will stay with Alan for most of that time.
He's not cleared to drive yet, and is walking distance to Super WalMart, Panera Bread, his daughters, Starbucks, etc. so hopefully everything will go smoothly.
Tuesday, November 18, 2008
Still Hangin' in there
We've moved to an apartment closer to the daughter so it's much easier to get Alan out for a bit and to visit with the grandchild.
We spent last Thursday doing routine blood work and clinic visits. It took most of the day since we had to head into the hospital twice. We hit rush hour traffic for two parts of the trip so that wasn't much fun.
All of the staples were removed on Thursday and replaced with steri strips. Some of them have already fallen off. Labs on Thursday were good for the liver numbers, but not so good for the potassium and creatinin. Alan had the pleasure of an at home treatment to lower the potassium on Thursday night, which didn't have the wished for results.
Friday was spent at the lab and clinic again. He recieved IV treatment for the potassium all day and we waited for the magic hour of 3:30 for blood to be drawn and then 4:30 for the results. Hoping for less than 5.5. If it hadn't gone down, he might have been admitted to the hospital for the weekend. Thankfully, the level went down to 4.7 so he was released at about 4:40.
Alan's brother was here for the week. He'll be back again just after Thanksgiving and I'll head home for a few weeks. Tom will stay with Alan until I come back.
We celebrated a full Thanksgiving dinner on Sunday with everyone but Andrew. I'll have Thanskgiving with him when I am home.
On Monday we'll move into another apartment. This one will be 1st floor and easy walking distance for Alan to the grocery, and to visit A/S and J.
I'll post again when Alan's in the next apartment. He'll be able to get mail at that one or it can continue to go to the address I already gave.
Thanks for the cards.
We spent last Thursday doing routine blood work and clinic visits. It took most of the day since we had to head into the hospital twice. We hit rush hour traffic for two parts of the trip so that wasn't much fun.
All of the staples were removed on Thursday and replaced with steri strips. Some of them have already fallen off. Labs on Thursday were good for the liver numbers, but not so good for the potassium and creatinin. Alan had the pleasure of an at home treatment to lower the potassium on Thursday night, which didn't have the wished for results.
Friday was spent at the lab and clinic again. He recieved IV treatment for the potassium all day and we waited for the magic hour of 3:30 for blood to be drawn and then 4:30 for the results. Hoping for less than 5.5. If it hadn't gone down, he might have been admitted to the hospital for the weekend. Thankfully, the level went down to 4.7 so he was released at about 4:40.
Alan's brother was here for the week. He'll be back again just after Thanksgiving and I'll head home for a few weeks. Tom will stay with Alan until I come back.
We celebrated a full Thanksgiving dinner on Sunday with everyone but Andrew. I'll have Thanskgiving with him when I am home.
On Monday we'll move into another apartment. This one will be 1st floor and easy walking distance for Alan to the grocery, and to visit A/S and J.
I'll post again when Alan's in the next apartment. He'll be able to get mail at that one or it can continue to go to the address I already gave.
Thanks for the cards.
Sunday, November 9, 2008
Still in the South
Not much has changed on the health front. Alan continues to be very careful with the diet and exercise. It's a long journey and we were told not to anticipate him feeling noticeably better until after the first of the new year -- 3 months out of surgery.
For an active guy that's pretty difficult to take. I guess the one good thing about football season is he has something to watch on television almost EVERY single day, regardless of the hour.
Short walks, drives, and visits to the grocery store are his routine outings. He can definitely find his way around grocery stores very quickly.
Alan will not be heading north until sometime in January at the earliest. Hopefully all will go well and we'll get the clearance from the doctor at that time. I'm tentatively planning to head home in a week or so to catch up on some work. There will be someone here near him until a week before Christmas and that should allow me to leave with some assurance that he'll eat, drink and exercise.
We're moving to another apartment just minutes away from A, A, and S which will allow him to walk to the grocery store, Panera Bread and have dinner with the daughter. She should be home until about mid December -- at which time I'll need to make other arrangements or head back down.
He's not allowed to drive and still has twice weekly lab appointments as well as the clinic appointments.
Some workups tomorrow and clinic again on Thursday. Hopefully staples will be removed and we'll have further word at that time.
For an active guy that's pretty difficult to take. I guess the one good thing about football season is he has something to watch on television almost EVERY single day, regardless of the hour.
Short walks, drives, and visits to the grocery store are his routine outings. He can definitely find his way around grocery stores very quickly.
Alan will not be heading north until sometime in January at the earliest. Hopefully all will go well and we'll get the clearance from the doctor at that time. I'm tentatively planning to head home in a week or so to catch up on some work. There will be someone here near him until a week before Christmas and that should allow me to leave with some assurance that he'll eat, drink and exercise.
We're moving to another apartment just minutes away from A, A, and S which will allow him to walk to the grocery store, Panera Bread and have dinner with the daughter. She should be home until about mid December -- at which time I'll need to make other arrangements or head back down.
He's not allowed to drive and still has twice weekly lab appointments as well as the clinic appointments.
Some workups tomorrow and clinic again on Thursday. Hopefully staples will be removed and we'll have further word at that time.
Friday, October 31, 2008
Still Okay
Clinic on Monday and hopefully more news on schedules then, and when we can travel home. Right now, we do know that the labs from this week look good and everything is nice and stable.
Happy Halloween!
Happy Halloween!
Sunday, October 26, 2008
Still Here
I cannot begin to tell you how DYSFUNCTIONAL the internet is where we are located!! Let me also say that if you do not hear any news it remains good . . . generally speaking. If there is any not so good news I will make sure to get that out somehow if this system continues to irritate me. Right now it seems to be doing okay.
Back to Alan . . . he's doing well. He's been out of the hospital a week. Walking more every day -- hills and everything. That means he's only up to about 3/4 to a mile, but we think that's pretty great!
The medial drain was removed on Monday of last week at his appointment. He's on a regular diet (well he was on a regular diet for a few hours and then they told him to go light on potassium).
He will have blood work every Monday and Thursday. We will receive a call from the out patient coordinator when they have the results to let us know if everything is okay or if he needs to change anything with regard to medication or diet. We did not receive a call on Thursday so we're maintaining the low potassium diet with everything else pretty much the same. Of course, none of the foods that are restricted.
Still working with high glucose and insulin. At this time, all focused on the medicines and how they interact.
Blood work again tomorrow and then J, A, and the baby over for dinner at night. What an absolute doll . . grandpa tells her lots of stories when we're not around to hear every word, so we're not quite sure what she's hearing.
Fireworks are going off again right now. The last night of the state fair. They have fire works nightly. Weather was great today but expecting a hard frost tonight.
Take care, will update with results when we have them. Hopefully at his next clinic appointment on 11/3 we will have a timeline for heading north. We'll keep you posted.
Back to Alan . . . he's doing well. He's been out of the hospital a week. Walking more every day -- hills and everything. That means he's only up to about 3/4 to a mile, but we think that's pretty great!
The medial drain was removed on Monday of last week at his appointment. He's on a regular diet (well he was on a regular diet for a few hours and then they told him to go light on potassium).
He will have blood work every Monday and Thursday. We will receive a call from the out patient coordinator when they have the results to let us know if everything is okay or if he needs to change anything with regard to medication or diet. We did not receive a call on Thursday so we're maintaining the low potassium diet with everything else pretty much the same. Of course, none of the foods that are restricted.
Still working with high glucose and insulin. At this time, all focused on the medicines and how they interact.
Blood work again tomorrow and then J, A, and the baby over for dinner at night. What an absolute doll . . grandpa tells her lots of stories when we're not around to hear every word, so we're not quite sure what she's hearing.
Fireworks are going off again right now. The last night of the state fair. They have fire works nightly. Weather was great today but expecting a hard frost tonight.
Take care, will update with results when we have them. Hopefully at his next clinic appointment on 11/3 we will have a timeline for heading north. We'll keep you posted.
Friday, October 17, 2008
Out of the Hospital
Alan was discharged today about 12:30 so we're back at the condo! He was greeted with Welcome Home balloons and metallic type arrangements since he cannot have fresh flowers -- and of course, his beautiful granddaughter.
After napping in a real bed he's up and about and just had a healthy dinner of "eggbeaters" scrambled eggs and wheat toast. He's also enjoyed tomato juice and fat free cream cheese on wheat crackers -- note the theme here??
NO TPN -- (milkshake in a bag)!! We're slowly putting the low fat diet into place and hopefully the drainage will continue to slow. He still has one tube but no IVs. Glucose level is considerably lower, and hopefully it will continue to go down through tomorrow. They feel with the reduction in some medicine and getting off the TPN it should sort itself out.
Medicine is sorted into the boxes, vitals are recorded AND he's had a lemon to eat! That made him very happy.
Back to Clinic on Monday for bloodwork and a check of the drainage. If it still looks pretty good, he will be able to continue the low-fat diet and they will take the tube out. Keep your fingers crossed.
His pre-transplant coordinator is on call this weekend, and as much as we would like to see her, we hope there will not be a need.
Internet is a little sketchy and will most likely not post until Monday after Clinic.
After napping in a real bed he's up and about and just had a healthy dinner of "eggbeaters" scrambled eggs and wheat toast. He's also enjoyed tomato juice and fat free cream cheese on wheat crackers -- note the theme here??
NO TPN -- (milkshake in a bag)!! We're slowly putting the low fat diet into place and hopefully the drainage will continue to slow. He still has one tube but no IVs. Glucose level is considerably lower, and hopefully it will continue to go down through tomorrow. They feel with the reduction in some medicine and getting off the TPN it should sort itself out.
Medicine is sorted into the boxes, vitals are recorded AND he's had a lemon to eat! That made him very happy.
Back to Clinic on Monday for bloodwork and a check of the drainage. If it still looks pretty good, he will be able to continue the low-fat diet and they will take the tube out. Keep your fingers crossed.
His pre-transplant coordinator is on call this weekend, and as much as we would like to see her, we hope there will not be a need.
Internet is a little sketchy and will most likely not post until Monday after Clinic.
Thursday, October 16, 2008
Home Tomorrow
No news is good news, right! I'm accessing internet at the hospital since the condo for some reason in not functioning properly.
Thank you for the calls, emails and posts.
Alan has had quite a few ups and downs over the last several weeks, but in the last couple of days things have leveled out. All numbers seem to be good and we are planning for a discharge tomorrow, Friday, 10/17.
He will be discharged with TPN which is nutrition through a PICC line. As well as the one drain remaining. Things are looking good though and rumor has it that he may have some solid food today.
Thank you for the calls, emails and posts.
Alan has had quite a few ups and downs over the last several weeks, but in the last couple of days things have leveled out. All numbers seem to be good and we are planning for a discharge tomorrow, Friday, 10/17.
He will be discharged with TPN which is nutrition through a PICC line. As well as the one drain remaining. Things are looking good though and rumor has it that he may have some solid food today.
Sunday, October 12, 2008
Still in the Hospital
Alan is still in the hospital and the roller coaster ride continues. He sounded good this morning and had a good night. The boys are here so we're all going in shortly -- hopefully to visit in the garden.
He spent most of Thursday waiting for scans or ultrasound. One scan called the "hida scan" took several hours to complete as picture images are taken in very tightly timed intervals throughout an hour and then periodically afterwards. That was done to see what the liver looked like and if they could determine whether there were any leaks or complications with it. This scan is done in Nuclear Medicine.
The ultrasound was done during the gap in picture taking. The technician was very thorough. Four times during this 20 - 30 minute period you had another technician, transport, or transplant surgeon stop in to see how things were going.
The results from these two tests were good indicating nothing unusual was taking place.
Alan had a liver biopsy on Friday and the results came back yesterday. They were checking again to see if they could pinpoint any areas of concern which would explain his fluctuation in numbers.
The purpose for continual labs is to detect the positive and/or negative before there is a major issue. Labs on Wednesday and Thursday were not where they would like them to be which was the reason for the testing on Thursday and Friday.
Most recent labs were trending in the right direction. He may or may not have another liver biopsy this coming week. We're hoping not.
He'll be on a low fat diet initially -- until one of his drains is totally cleared up. That appeared better this morning.
He spent most of Thursday waiting for scans or ultrasound. One scan called the "hida scan" took several hours to complete as picture images are taken in very tightly timed intervals throughout an hour and then periodically afterwards. That was done to see what the liver looked like and if they could determine whether there were any leaks or complications with it. This scan is done in Nuclear Medicine.
The ultrasound was done during the gap in picture taking. The technician was very thorough. Four times during this 20 - 30 minute period you had another technician, transport, or transplant surgeon stop in to see how things were going.
The results from these two tests were good indicating nothing unusual was taking place.
Alan had a liver biopsy on Friday and the results came back yesterday. They were checking again to see if they could pinpoint any areas of concern which would explain his fluctuation in numbers.
The purpose for continual labs is to detect the positive and/or negative before there is a major issue. Labs on Wednesday and Thursday were not where they would like them to be which was the reason for the testing on Thursday and Friday.
Most recent labs were trending in the right direction. He may or may not have another liver biopsy this coming week. We're hoping not.
He'll be on a low fat diet initially -- until one of his drains is totally cleared up. That appeared better this morning.
Thursday, October 9, 2008
One Week Anniversary
Mentally, physically, and emotionally Alan is doing very well. That said . . .
For those of you who know us well, you know that I absolutely despise roller coasters, and Alan . . not much better. He was always better at humoring the kids and getting on them.
Adjusting anti-rejection medicine is one of the largest and scariest roller coasters I have ever seen. This should probably level out in a few weeks.
He's given medicines for anti-rejection then others for the side effects; be it low magnesium, high glucose, and other extremes.
Down to one drainage tube but the others still empty. The drainage has been sent to the lab as well for testing and everything looks good with that. The goal (very flexible) is Friday for discharge.
The food -- well, I just packed him some so he can eat between meals. You know how much he likes to graze. We were thoroughly educated on what he can and cannot do, and can and cannot eat.
NEVER, NEVER is he allowed to have anything with grapefruit juice for the rest of his life. We will have to all keep that in mind as we offer fruit drinks, cook, etc.
Did you know that black pepper is a fruit??
He can only eat in Grade A restaurants. That sign should always be posted, so hopefully we will never have to ask.
The list goes on. but a new lease on life is worth everything he is going through. I'm sure he'll feel the same way as soon as someone allows him to sleep through the night.
I can never say enough, or be amazed enough that I can truly see the "whites of his eyes". Oh, and he looks like Jack Lemmon, since he hasn't shaved het. He sometimes acts like him as well.
For those of you who know us well, you know that I absolutely despise roller coasters, and Alan . . not much better. He was always better at humoring the kids and getting on them.
Adjusting anti-rejection medicine is one of the largest and scariest roller coasters I have ever seen. This should probably level out in a few weeks.
He's given medicines for anti-rejection then others for the side effects; be it low magnesium, high glucose, and other extremes.
Down to one drainage tube but the others still empty. The drainage has been sent to the lab as well for testing and everything looks good with that. The goal (very flexible) is Friday for discharge.
The food -- well, I just packed him some so he can eat between meals. You know how much he likes to graze. We were thoroughly educated on what he can and cannot do, and can and cannot eat.
NEVER, NEVER is he allowed to have anything with grapefruit juice for the rest of his life. We will have to all keep that in mind as we offer fruit drinks, cook, etc.
Did you know that black pepper is a fruit??
He can only eat in Grade A restaurants. That sign should always be posted, so hopefully we will never have to ask.
The list goes on. but a new lease on life is worth everything he is going through. I'm sure he'll feel the same way as soon as someone allows him to sleep through the night.
I can never say enough, or be amazed enough that I can truly see the "whites of his eyes". Oh, and he looks like Jack Lemmon, since he hasn't shaved het. He sometimes acts like him as well.
Tuesday, October 7, 2008
Day 5
He's doing great! Only two drainage tubes left in and two IV's that are not being used. Most likely he will be discharged on Friday.
He's been walking around the nurses block and hopefully we'll get to the butterfly garden tomorrow. Today was a lot of waiting for things to be removed, and that tired him out. Tomorrow should also be the day he shaves!!!
He made the nurse laugh hysterically with one of his comments. Of course, he didn't see the humor in it -- most men wouldn't have, but we both did. . .
It's amazing how a little thing like sitting up in a chair can make someone feel so good. He was so thrilled when he actually was able to cross his leg and not feel pain.
The most discomfort he has right now -- which at times is pretty intense -- is the arthritic back. Most likely from being in bed so much.
Thanks for the notes and the best wishes. We're receiving mail at Alissa's since we don't know where this mail key is.
That's it for now.
He's been walking around the nurses block and hopefully we'll get to the butterfly garden tomorrow. Today was a lot of waiting for things to be removed, and that tired him out. Tomorrow should also be the day he shaves!!!
He made the nurse laugh hysterically with one of his comments. Of course, he didn't see the humor in it -- most men wouldn't have, but we both did. . .
It's amazing how a little thing like sitting up in a chair can make someone feel so good. He was so thrilled when he actually was able to cross his leg and not feel pain.
The most discomfort he has right now -- which at times is pretty intense -- is the arthritic back. Most likely from being in bed so much.
Thanks for the notes and the best wishes. We're receiving mail at Alissa's since we don't know where this mail key is.
That's it for now.
Monday, October 6, 2008
Day 4 of Recovery
Well, I guess this is the end of Day 4 of recovery, although it seems much longer than that.
Alan's on the transplant floor. They put him in what they fondly refer to as the "storage closet". It has one of the better views. That means you get to see some sky and campus through the buildings, as opposed to looking out directly at a wall. It is very quiet since it's on the end of the hall. I wouldn't be surprised if they move him into a larger room tonight. It's a little difficult to maneuver in there.
His nurse, N. is fantastic. As Alan puts it she remembers the "care" part of what she's doing. Everyone has been great -- busy but great.
Progress: He smiled before I left. Of course, that could have been because I was leaving and he was going to watch the football game.
One of his three drains was removed. It's extremely interesting how much hose your body can hold inside of it. Two more to go. He may go home (back to the condo) with one of them in. I'll learn how to take care of it if that's the case.
He had solid food. Well, catfish, black beans, brown rice???? That would be where the line "Toto we're not in Kansas anymore" comes in. (Okay he had scrambled eggs this morning, but that's not quite as interesting as catfish.
He's been up and moving around. The most exciting part is that he actually walked around the hall block -- TWICE!
No major setbacks yet .. he's gotten two more units of blood and they are watching a little blood in the abdomen. Optimistim sets in here -- they do not think it's a weakening anywhere but a pooling and settling common after surgery. The ultrasounds will continue.
We had our first meeting with In-patient coordination and then Pharmacy. More will take place tomorrow. They basically tell you what they're going to tell you . . .tell you. . . ask you to tell them what they told you . . and then come back tomorrow for another round to see what we've retained and then to go a little bit further into it. Does that sound familiar to anyone??
Also, the nurse gives you your medicine one pill at a time, tells you what it is and why . . has you tell her what it is and why . . and that will continue.
Currently he's only going to be on 6-9 different medicines when he leaves. Three of the six will be permanent, and three others may be as needed. Three will be tapered 3 months and 6 months out. Of course, that will be subject to change based on the bloodwork. That's a lot better than I had anticipated. Of course the side effects of all of them combined could end up being quite a bit of a nightmare, but I'm sure not much worse than what he's gone through to this point.
Of course, I know that medicine is science, however, this is at a level that is unbelievable with the knowledge of these surgeons. As well, the pharmacist had an additional two years of training to be a pharmacist for transplant patients.
I'm still trying to perfect the southern walk. I'm still pegged as being from the north. The lesson today was you have to go really slow, AND make eye contact. People even stop talking on their cell phones to say hi to strangers in the hall.
I'm hoping my boss won't mind me wearing my Tar Heels t-shirt my first day back at work. It's really quite nice. I got Alan one today too. I still haven't figured out what a Tar Heel is. In the hospital yesterday Alan had a choice of wearing "Carolina Blue" or "Duke Blue". We opted for the Carolina Blue because we felt that might be safest.
That's it for now ...
Alan's on the transplant floor. They put him in what they fondly refer to as the "storage closet". It has one of the better views. That means you get to see some sky and campus through the buildings, as opposed to looking out directly at a wall. It is very quiet since it's on the end of the hall. I wouldn't be surprised if they move him into a larger room tonight. It's a little difficult to maneuver in there.
His nurse, N. is fantastic. As Alan puts it she remembers the "care" part of what she's doing. Everyone has been great -- busy but great.
Progress: He smiled before I left. Of course, that could have been because I was leaving and he was going to watch the football game.
One of his three drains was removed. It's extremely interesting how much hose your body can hold inside of it. Two more to go. He may go home (back to the condo) with one of them in. I'll learn how to take care of it if that's the case.
He had solid food. Well, catfish, black beans, brown rice???? That would be where the line "Toto we're not in Kansas anymore" comes in. (Okay he had scrambled eggs this morning, but that's not quite as interesting as catfish.
He's been up and moving around. The most exciting part is that he actually walked around the hall block -- TWICE!
No major setbacks yet .. he's gotten two more units of blood and they are watching a little blood in the abdomen. Optimistim sets in here -- they do not think it's a weakening anywhere but a pooling and settling common after surgery. The ultrasounds will continue.
We had our first meeting with In-patient coordination and then Pharmacy. More will take place tomorrow. They basically tell you what they're going to tell you . . .tell you. . . ask you to tell them what they told you . . and then come back tomorrow for another round to see what we've retained and then to go a little bit further into it. Does that sound familiar to anyone??
Also, the nurse gives you your medicine one pill at a time, tells you what it is and why . . has you tell her what it is and why . . and that will continue.
Currently he's only going to be on 6-9 different medicines when he leaves. Three of the six will be permanent, and three others may be as needed. Three will be tapered 3 months and 6 months out. Of course, that will be subject to change based on the bloodwork. That's a lot better than I had anticipated. Of course the side effects of all of them combined could end up being quite a bit of a nightmare, but I'm sure not much worse than what he's gone through to this point.
Of course, I know that medicine is science, however, this is at a level that is unbelievable with the knowledge of these surgeons. As well, the pharmacist had an additional two years of training to be a pharmacist for transplant patients.
I'm still trying to perfect the southern walk. I'm still pegged as being from the north. The lesson today was you have to go really slow, AND make eye contact. People even stop talking on their cell phones to say hi to strangers in the hall.
I'm hoping my boss won't mind me wearing my Tar Heels t-shirt my first day back at work. It's really quite nice. I got Alan one today too. I still haven't figured out what a Tar Heel is. In the hospital yesterday Alan had a choice of wearing "Carolina Blue" or "Duke Blue". We opted for the Carolina Blue because we felt that might be safest.
That's it for now ...
Sunday, October 5, 2008
Day 3 of Recovery
Great day! Well, with the exception of having to watch the football game at the hospital.
Alan spent his first and only day in the Step Down unit today. He's being moved out of this unit to 5 East which is the general floor for transplant patients. He'll be settled there in about an hour.
He was out of bed today for a few hours watching the game or snoozing in the recliner. He actually prefers the bed because he can brace his feet and push against it and stretch that way.
All of his vitals remain strong. He's being moved to 5 East without the bedside monitor. He only has one IV in his Central line (neck) and he has his pain pump.
He'll keep the leg "thingys" that squeeze and help circulation, and also continue using the lung "thingy" that you blow into.
I'm not completely comfortable with the move because it's so fast, but I have had no reason to question any of his medical care. It has been excellent!
I'll be at the hospital first thing in the morning and anticipate tomorrow and Tuesday to be a big learning curve for both of us with regard to his medications, and physical care.
More at the end of Day 4.
Alan spent his first and only day in the Step Down unit today. He's being moved out of this unit to 5 East which is the general floor for transplant patients. He'll be settled there in about an hour.
He was out of bed today for a few hours watching the game or snoozing in the recliner. He actually prefers the bed because he can brace his feet and push against it and stretch that way.
All of his vitals remain strong. He's being moved to 5 East without the bedside monitor. He only has one IV in his Central line (neck) and he has his pain pump.
He'll keep the leg "thingys" that squeeze and help circulation, and also continue using the lung "thingy" that you blow into.
I'm not completely comfortable with the move because it's so fast, but I have had no reason to question any of his medical care. It has been excellent!
I'll be at the hospital first thing in the morning and anticipate tomorrow and Tuesday to be a big learning curve for both of us with regard to his medications, and physical care.
More at the end of Day 4.
Saturday, October 4, 2008
Day 2 Recovery
End of day 2 and Alan has had the neck line removed and a smaller one put in place. He hasn't gotten out of bed yet, but that is due more at this time to delays on the floor rather than his recovery.
We had to wait for the line to be decreased and then x-ray to ensure that it's placed appropriately. That had not come back yet when I left the hospital. J., his nurse today, said that if there was anything wrong with the line they would have gotten the x ray results right away.
Once the x ray results are back he'll have a support wrap placed around his abdomen and move to a chair. If it's too late they will not move him to another floor.
Sugar levels are high, which can resolve on their own -- hopefully. Generally this is a result of stress from surgery. Currently they are treating it with insulin, so I hope that is not an issue we will have to deal with. They identify individuals with much lower sugar rates than in the past, with the intent of reducing complications.
More at the end of tomorrow.
We had to wait for the line to be decreased and then x-ray to ensure that it's placed appropriately. That had not come back yet when I left the hospital. J., his nurse today, said that if there was anything wrong with the line they would have gotten the x ray results right away.
Once the x ray results are back he'll have a support wrap placed around his abdomen and move to a chair. If it's too late they will not move him to another floor.
Sugar levels are high, which can resolve on their own -- hopefully. Generally this is a result of stress from surgery. Currently they are treating it with insulin, so I hope that is not an issue we will have to deal with. They identify individuals with much lower sugar rates than in the past, with the intent of reducing complications.
More at the end of tomorrow.
Friday, October 3, 2008
Day 1 Went Well
Things are going well. Alan had his breathing tube removed this morning, and the nose (threaded down to the abdomen) tube removed this afternoon. All is going well still. Vital signs are strong, ultrasound results were good. Alan is loving his ice chips. When they removed the tube from his throat he sounded like he was a two pack a day smoker for 20 years. It got better as the day progressed.
The surgery was technically challenging due to the portal vein blockage. Dr. K. was by this afternoon as well as Dr. H, the hepatologist. They are both very pleased with the progress he has made thus far. We still go hour by hour praying that it continues to go well.
I anticipate that he may be moved from ICU to the Step Down unit over the weekend.
I was going to stay at the hospital tonight but I am able to call directly in to the unit for updates, which is great. Alan in his "gentle" way suggested I would be of more use to him if I slept in a bed after spending some quality time with the grandbaby. That was after he told the nurse he felt he had been in long enough and was ready to go home . . . which was after he told her something else as she was checking tubes. That I'll not post!!
I'll get an update during the night and before I head out in the morning. If there's any change I'll post, if not it will be the end of the day. I cannot carry anything into ICU so I'll be leaving the computer at home until I can use it again in the hospital.
Weather update: sunny, warm, flowers blooming, bees buzzing. . . And almost everyone walks around getting things done without appearing to be in such a rush like the home state. Maybe it's an attitude I'll adopt while I'm here.
The surgery was technically challenging due to the portal vein blockage. Dr. K. was by this afternoon as well as Dr. H, the hepatologist. They are both very pleased with the progress he has made thus far. We still go hour by hour praying that it continues to go well.
I anticipate that he may be moved from ICU to the Step Down unit over the weekend.
I was going to stay at the hospital tonight but I am able to call directly in to the unit for updates, which is great. Alan in his "gentle" way suggested I would be of more use to him if I slept in a bed after spending some quality time with the grandbaby. That was after he told the nurse he felt he had been in long enough and was ready to go home . . . which was after he told her something else as she was checking tubes. That I'll not post!!
I'll get an update during the night and before I head out in the morning. If there's any change I'll post, if not it will be the end of the day. I cannot carry anything into ICU so I'll be leaving the computer at home until I can use it again in the hospital.
Weather update: sunny, warm, flowers blooming, bees buzzing. . . And almost everyone walks around getting things done without appearing to be in such a rush like the home state. Maybe it's an attitude I'll adopt while I'm here.
Day 1 of Recovery
Vital signs were stable throughout the night. Awake and writing with hand to let me know he was too warm. That's a real switch. He has not run any fever. This may be the first time in a long time that he has had a liver functioning well enough to keep him warm.
Ultrasound result from 7:00 a.m. is not in yet. Based on the ultrasound they will remove the breathing tube or put him back into OR for adjustments. The ultrasound is routine on the first morning, and there are no indications that the liver is not functioning properly.
I will update again late afternoon or early evening.
Ultrasound result from 7:00 a.m. is not in yet. Based on the ultrasound they will remove the breathing tube or put him back into OR for adjustments. The ultrasound is routine on the first morning, and there are no indications that the liver is not functioning properly.
I will update again late afternoon or early evening.
Thursday, October 2, 2008
Recovery
8:45 p.m.
Alan is out of surgery. According to Dr. K. the surgery presented technical challenges which he had anticipated. We knew that there was a chance that a graft would have to be performed to bypass the portal vein going into the liver. My medical terminology is not quite there so I'll not fill in all the details. What we know is this -- The doctors did have to tie off the portal vein because it was not functioning properly. One of Alan's took over and is performing beautifully.
Alan received a 22 year old liver in excellent condition. He did not have to receive any blood and his vital signs stayed strong throughout the surgery. He is in ICU recovery now being bandaged, and having more tests. I should be able to go in and see him hopefully in about 30-40 minutes.
There are no words that will ever be able to express the highs and lows over the past few days -- prayers and everylasting thanks to the donor family, the strength and support of friends, family, and colleagues have helped us get through this first step.
The journey continues one hour at a time. We hope some time in the next 24 hours we will be able to see some tubes removed and positive steps taken.
Memorial Hospital is amazing! The staff, at every level, and every turn have been there unwaveringly. Even those staff not involved in Alan's care have helped me find my way through the halls; literally.
We've long days ahead of us. I don't anticipate Alan being released for several days. The postings will continue, as will our thanks.
Alan is out of surgery. According to Dr. K. the surgery presented technical challenges which he had anticipated. We knew that there was a chance that a graft would have to be performed to bypass the portal vein going into the liver. My medical terminology is not quite there so I'll not fill in all the details. What we know is this -- The doctors did have to tie off the portal vein because it was not functioning properly. One of Alan's took over and is performing beautifully.
Alan received a 22 year old liver in excellent condition. He did not have to receive any blood and his vital signs stayed strong throughout the surgery. He is in ICU recovery now being bandaged, and having more tests. I should be able to go in and see him hopefully in about 30-40 minutes.
There are no words that will ever be able to express the highs and lows over the past few days -- prayers and everylasting thanks to the donor family, the strength and support of friends, family, and colleagues have helped us get through this first step.
The journey continues one hour at a time. We hope some time in the next 24 hours we will be able to see some tubes removed and positive steps taken.
Memorial Hospital is amazing! The staff, at every level, and every turn have been there unwaveringly. Even those staff not involved in Alan's care have helped me find my way through the halls; literally.
We've long days ahead of us. I don't anticipate Alan being released for several days. The postings will continue, as will our thanks.
Still in Surgery
The time went fairly fast earlier today, but is now crawling by as I continue to watch the clock.
Although Alan went into surgery at 12:00 the actual procedure started about 1:00 p.m. At 3:15 we had word from the O.R. that things were going well. At 6:30 I do know he was still in surgery. I have not had any word since.
I do not anticipate having any word until at least 8:00 p.m. I will not even project what might be happening now, as any surgery is difficult and every person is different.
When I know more I will post.
Thanks for the calls, prayers, and blessings.
Although Alan went into surgery at 12:00 the actual procedure started about 1:00 p.m. At 3:15 we had word from the O.R. that things were going well. At 6:30 I do know he was still in surgery. I have not had any word since.
I do not anticipate having any word until at least 8:00 p.m. I will not even project what might be happening now, as any surgery is difficult and every person is different.
When I know more I will post.
Thanks for the calls, prayers, and blessings.
Surgery
Alan is in surgery.
A long morning wait, but it progressed smoothly. We did make it to 6 West for a couple of hours so he was able to sleep in a "real" bed for a while.
He did great this morning. He's very calm. As he said, he has no option. Would he prefer not to have surgery? Yes. However, he plans on being around a long time so this is what he needs to do.
We spoke with Dr. K this morning. He is the surgeon we met during the evaluation in August and he is performing the surgery today. He did not have surgery yesterday so he's rested. I checked with anesthesiology as well and they are rested too. (Or, as much as they ever are).
The liver is excellent we are told. As you send your prayers out for Alan, please add the family of the donor.
I expect surgery has started by now (2:00 p.m.) It hadn't yet started at 1:15. They were prepping still.
I will not be in touch by phone, since the reception is terrible and it's too frustrating for everyone. I cannot access email either so I will try to keep you posted by blog as I get updates from the surgery team.
We anticipate 6 - 9 hours of surgery. This means that 8:00 p.m. at the very earliest he would be in recovery. I do not think that is likely.
Alan will be in the hospital for a minimum of 5 days. 7 - 10 days would not be unheard of. He may also end up back in surgery a couple of times before release, and back in the hospital a few times in the first 6 months to a year. All that is possible. I'm hoping not . . .
On the up side, the nurse this morning was from Long Island (so was mom). I figured that might be another sign.
As I left the hospital when they took Alan into surgery, I got "bumped" by a falling leaf, I stepped back for some reason and it dropped on me again. As it landed on the sidewalk I realized it wasn't a leaf, but rather a butterfly. I just figured it was mom. Bruz then told me some cultures do believe that butterflies are people from the past.
It's a long road ahead. Thanks for all of your support and I'll pass on your messages to Alan.
A long morning wait, but it progressed smoothly. We did make it to 6 West for a couple of hours so he was able to sleep in a "real" bed for a while.
He did great this morning. He's very calm. As he said, he has no option. Would he prefer not to have surgery? Yes. However, he plans on being around a long time so this is what he needs to do.
We spoke with Dr. K this morning. He is the surgeon we met during the evaluation in August and he is performing the surgery today. He did not have surgery yesterday so he's rested. I checked with anesthesiology as well and they are rested too. (Or, as much as they ever are).
The liver is excellent we are told. As you send your prayers out for Alan, please add the family of the donor.
I expect surgery has started by now (2:00 p.m.) It hadn't yet started at 1:15. They were prepping still.
I will not be in touch by phone, since the reception is terrible and it's too frustrating for everyone. I cannot access email either so I will try to keep you posted by blog as I get updates from the surgery team.
We anticipate 6 - 9 hours of surgery. This means that 8:00 p.m. at the very earliest he would be in recovery. I do not think that is likely.
Alan will be in the hospital for a minimum of 5 days. 7 - 10 days would not be unheard of. He may also end up back in surgery a couple of times before release, and back in the hospital a few times in the first 6 months to a year. All that is possible. I'm hoping not . . .
On the up side, the nurse this morning was from Long Island (so was mom). I figured that might be another sign.
As I left the hospital when they took Alan into surgery, I got "bumped" by a falling leaf, I stepped back for some reason and it dropped on me again. As it landed on the sidewalk I realized it wasn't a leaf, but rather a butterfly. I just figured it was mom. Bruz then told me some cultures do believe that butterflies are people from the past.
It's a long road ahead. Thanks for all of your support and I'll pass on your messages to Alan.
On The Road Again!
3:24 a.m.
"On The Road Again" by Willy Nelson started running through my mind at about 11:00 p.m. last night. That would have been 15 minutes after we got the 10:45 p.m. (10/01/08) call from the Transplant Coordinator at Chapel Hill with an organ offer.
This is the initial organ offer we received on Tuesday morning at 8:30 a.m. I do not know what took place, and I'm sure we never will have the details, but the organ was offered to Alan initially and he accepted so when it's back out as an offer he has the first option.
At this time we are in the Acute Treatment Room at the ER in Chapel Hill. We are only in here because the place is packed. We've been at the hospital since about 11:30 and arrived in this room about 45 minutes to an hour ago.
Alan has had the initial work up again. We've taken it a step farther this time and he's had some medicine they wanted him to have as well. Maybe, one step closer.
When Alan received the call they said he would be scheduled for early morning surgery. Yesterday we learned that you take the time they give you +4 hours. That might be the time you head into surgery. So, at this time, we are again in the holding pattern.
He's doing well, resting and ready to have this over with so the next stage can begin.
"On The Road Again" by Willy Nelson started running through my mind at about 11:00 p.m. last night. That would have been 15 minutes after we got the 10:45 p.m. (10/01/08) call from the Transplant Coordinator at Chapel Hill with an organ offer.
This is the initial organ offer we received on Tuesday morning at 8:30 a.m. I do not know what took place, and I'm sure we never will have the details, but the organ was offered to Alan initially and he accepted so when it's back out as an offer he has the first option.
At this time we are in the Acute Treatment Room at the ER in Chapel Hill. We are only in here because the place is packed. We've been at the hospital since about 11:30 and arrived in this room about 45 minutes to an hour ago.
Alan has had the initial work up again. We've taken it a step farther this time and he's had some medicine they wanted him to have as well. Maybe, one step closer.
When Alan received the call they said he would be scheduled for early morning surgery. Yesterday we learned that you take the time they give you +4 hours. That might be the time you head into surgery. So, at this time, we are again in the holding pattern.
He's doing well, resting and ready to have this over with so the next stage can begin.
Wednesday, October 1, 2008
No home run!
12:20 p.m.
Okay, to somewhat quote a good friend. You have to be in the game to win!
We're definitely in the game in North Carolina but don't have a hit yet. We have just been informed by one of the doctors (that gets to do the dirty work, as he put it) that the liver didn't look good in the biopsy. So they will not accept it.
He figures since we've only been called three times, we might have a few more times called in before they get the liver they want. With a MELD of 30 in NC the offers should keep coming in. We're just waiting for the nurse to remove the IV and then we'll head over to see A, J, and S.
We have no way of knowing when the next call will be, but will keep you posted.
Maybe another day!
Okay, to somewhat quote a good friend. You have to be in the game to win!
We're definitely in the game in North Carolina but don't have a hit yet. We have just been informed by one of the doctors (that gets to do the dirty work, as he put it) that the liver didn't look good in the biopsy. So they will not accept it.
He figures since we've only been called three times, we might have a few more times called in before they get the liver they want. With a MELD of 30 in NC the offers should keep coming in. We're just waiting for the nurse to remove the IV and then we'll head over to see A, J, and S.
We have no way of knowing when the next call will be, but will keep you posted.
Maybe another day!
Admissions and Discharge Unit
10/1/08:
Alan has been moved to the Admissions and Discharge Unit of the hospital from the ER. Much quiter, more comfortable for him. This unit is used for patients who do not need to be in the ER and are awaiting a procedure, transferred in from another medical clinic and waiting for a bed, or awaiting discharge. As the nurses put it "It's very "Zen" here." Quiet, soft colors, rounded chairs and desks with a sitting area if the people waiting do not need or want to be in the beds. Okay, I have a comfortable chair and a pillow and blanket too.
Alan is napping, awaiting more orders from the doctors. They expect the doctors to make the rounds about 7:00 a.m. so we'll know more at that time. He will be having an EKG this morning.
His nurse this morning is Faith, it's mom's birthday, and the first organ offer didn't come through. Hopefully all of the stars are aligned correctly today for this to be a successful procedure without many blips in the road.
Alan has been moved to the Admissions and Discharge Unit of the hospital from the ER. Much quiter, more comfortable for him. This unit is used for patients who do not need to be in the ER and are awaiting a procedure, transferred in from another medical clinic and waiting for a bed, or awaiting discharge. As the nurses put it "It's very "Zen" here." Quiet, soft colors, rounded chairs and desks with a sitting area if the people waiting do not need or want to be in the beds. Okay, I have a comfortable chair and a pillow and blanket too.
Alan is napping, awaiting more orders from the doctors. They expect the doctors to make the rounds about 7:00 a.m. so we'll know more at that time. He will be having an EKG this morning.
His nurse this morning is Faith, it's mom's birthday, and the first organ offer didn't come through. Hopefully all of the stars are aligned correctly today for this to be a successful procedure without many blips in the road.
Transplant Time?
9/29/08:
On Monday, 9/29 we received a call that Alan's MELD had been raised to a 30 in the Chapel Hill, North Carolina region. We were on our way into the hospital for a consultation with regard to followup for the Hepatocellular Carcinoma (HCC) tumor. We met with one of the transplant doctors for a consultation.
9/30/08:
Yesterday morning (9/30) at 8:30 we received a call from the transplant coordinator at Chapel Hill with an "offer". That's what they call it when there is an organ available. At first we thought she was just following up on Alan's visit to Transplant the previous day when we had conversations about "laproscopic radio frequency ablation" or RFA. This was scheduled for 10/14 to keep the tumor in check.
We arrived at the hospital ER at 10:40 a.m. (9/30). The ER is always the first stop. Initial blood work - a mere 11 vials, EKG, chest x-ray, and vitals are routine. Visits from anesthesiology, pharmacy, coordinator, research coordinator, phlebotomist, and nurses made the day pass very quickly.
We knew that the potential donor was going to surgery at around 3:00 p.m. and we would not have Alan heading into surgery until between 7:00 and 9:00 p.m.
Around 5:30 the hepatologist came in to explain there was an unusual situation that had developed and the the offer may no longer be on the table. This situation revolved around the potential donor. At that time we had conversations around changing Alan's status to accept an expanded criteria organ. His status was changed which potentially allows for more offers.
7:30 p.m. we headed to see the new parents and granddaughter. Adorable doesn't do her justice. Mom and dad are doing well too. Alan was allowed a light dinner in case he got a call back for the organ.
10:30 bed for some rest with the phone next to us.
10:01/08:
1:52 a.m. 10/1 (Happy Birthday Mom!) Phone call from the coordinator with an organ offer. Not the initial organ. That offer had not come back on the table, so hopefully the situation has been resolved for that family.
This is an expanded criteria organ. In this case it means that at some time the person was exposed to Hepatitis B, but had no other problems. There have been many successful transplants with this type of organ with no recurrence of the Hep B. Alan has started the immunizations for this because this is one we said we would accept. We accepted the offer and if this goes through he will be on a medication to block Hep B. This has proved successful in every case. The organ donor is in the 50s so I told Alan our livers will be about the same age so that means they can grow old together.
It's 4:16 a.m. as I sit in the ER at Chapel Hill writing this. We arrived just before 3:00 a.m. Alan is resting easily and is very comfortable with the decision to accept this organ. We anticipate the donor going into surgery around 7:00 a.m. with Alan heading into surgery around 12:00 noon today. We have seen the Anesthesiology Intern, had some additional blood drawn and waiting for word on whether or not they would like another EKG and chest x-ray.
Alan doesn't have a private room with a tv today but it is still fairly quite here. Pouring rain outside on our way here.
Everyone at UNCH has been great. I've been taking photos so Alan can have a photo journal with his care providers.
For some reason still no email access but the internet is up and running. More word will be forthcoming through the blog as opposed to the individual emails.
On Monday, 9/29 we received a call that Alan's MELD had been raised to a 30 in the Chapel Hill, North Carolina region. We were on our way into the hospital for a consultation with regard to followup for the Hepatocellular Carcinoma (HCC) tumor. We met with one of the transplant doctors for a consultation.
9/30/08:
Yesterday morning (9/30) at 8:30 we received a call from the transplant coordinator at Chapel Hill with an "offer". That's what they call it when there is an organ available. At first we thought she was just following up on Alan's visit to Transplant the previous day when we had conversations about "laproscopic radio frequency ablation" or RFA. This was scheduled for 10/14 to keep the tumor in check.
We arrived at the hospital ER at 10:40 a.m. (9/30). The ER is always the first stop. Initial blood work - a mere 11 vials, EKG, chest x-ray, and vitals are routine. Visits from anesthesiology, pharmacy, coordinator, research coordinator, phlebotomist, and nurses made the day pass very quickly.
We knew that the potential donor was going to surgery at around 3:00 p.m. and we would not have Alan heading into surgery until between 7:00 and 9:00 p.m.
Around 5:30 the hepatologist came in to explain there was an unusual situation that had developed and the the offer may no longer be on the table. This situation revolved around the potential donor. At that time we had conversations around changing Alan's status to accept an expanded criteria organ. His status was changed which potentially allows for more offers.
7:30 p.m. we headed to see the new parents and granddaughter. Adorable doesn't do her justice. Mom and dad are doing well too. Alan was allowed a light dinner in case he got a call back for the organ.
10:30 bed for some rest with the phone next to us.
10:01/08:
1:52 a.m. 10/1 (Happy Birthday Mom!) Phone call from the coordinator with an organ offer. Not the initial organ. That offer had not come back on the table, so hopefully the situation has been resolved for that family.
This is an expanded criteria organ. In this case it means that at some time the person was exposed to Hepatitis B, but had no other problems. There have been many successful transplants with this type of organ with no recurrence of the Hep B. Alan has started the immunizations for this because this is one we said we would accept. We accepted the offer and if this goes through he will be on a medication to block Hep B. This has proved successful in every case. The organ donor is in the 50s so I told Alan our livers will be about the same age so that means they can grow old together.
It's 4:16 a.m. as I sit in the ER at Chapel Hill writing this. We arrived just before 3:00 a.m. Alan is resting easily and is very comfortable with the decision to accept this organ. We anticipate the donor going into surgery around 7:00 a.m. with Alan heading into surgery around 12:00 noon today. We have seen the Anesthesiology Intern, had some additional blood drawn and waiting for word on whether or not they would like another EKG and chest x-ray.
Alan doesn't have a private room with a tv today but it is still fairly quite here. Pouring rain outside on our way here.
Everyone at UNCH has been great. I've been taking photos so Alan can have a photo journal with his care providers.
For some reason still no email access but the internet is up and running. More word will be forthcoming through the blog as opposed to the individual emails.
Friday, September 12, 2008
It's All About Waiting!
Well, I thought I would give "blogging" a try. It might be a good way to keep friends and family updated on the status of waiting for the liver transplant.
So, the story begins . . .
My husband is waiting for a liver transplant. He had Hepatitis C before we had tests to diagnose the problems. We don't know when, where, or how he got it. Finding the answer to that question is not important. Receiving a liver is . . . The wait has gone on for five years. It is amazing how complacent we all become, when you don't think you will really reach the point of needing a liver. That always happens to someone else. Well, not anymore. The wait intensified in January when it was discovered that he had liver cancer as well. Now he's higher on the list and the wait continues. Listed in two regions now, we hope the wait will not be too much longer. Since the "wait" began we, as well as our family and friends, have learned a new language. The words in this new language; MELD, Milan Criteria, Status 1, Hepatocellular Carcinoma, Alpha Feta Protein, Triple Phase CT, MRI, Platelets, Plasma, Chemoembolization, Radio Frequency Ablation. . . It wasn't a choice to learn the language, but rather a necessity for survival.
The journey into the medical world is eased (if that's possible) by the immense number of hospital personnel who have kept the "care" in health care. From the cook in the kitchen who was determined to find a lemon for my husband -- to the Transplant Coordinators who patiently answer ever single question asked of them -- even if they have answered it before, everyone we have encountered has played a critical role in this waiting game.
Without family and friends we would have faltered many times, but knowing they are there, and being strong for them has helped us get to the stage we are at now. Will the call come tonight? Will I make it south through five states to be with my husband in time? What about the family who just lost someone and have given my husband a chance at living? Our thoughts are forever changed on organ donation. That, too, would be someone else who had to make that decision, not us. Now, we truly understand the importance, and the unselfish act by families when they make that decision. It's hard to think about, and harder to discuss. Knowing that someone dies to let someone live. The doctor refers to it as survivor's guilt. They feel it too. To have a doctor take the time to explain that to you, makes it easier somehow. Somehow the wait will still continue tomorrow . . .
So, the story begins . . .
My husband is waiting for a liver transplant. He had Hepatitis C before we had tests to diagnose the problems. We don't know when, where, or how he got it. Finding the answer to that question is not important. Receiving a liver is . . . The wait has gone on for five years. It is amazing how complacent we all become, when you don't think you will really reach the point of needing a liver. That always happens to someone else. Well, not anymore. The wait intensified in January when it was discovered that he had liver cancer as well. Now he's higher on the list and the wait continues. Listed in two regions now, we hope the wait will not be too much longer. Since the "wait" began we, as well as our family and friends, have learned a new language. The words in this new language; MELD, Milan Criteria, Status 1, Hepatocellular Carcinoma, Alpha Feta Protein, Triple Phase CT, MRI, Platelets, Plasma, Chemoembolization, Radio Frequency Ablation. . . It wasn't a choice to learn the language, but rather a necessity for survival.
The journey into the medical world is eased (if that's possible) by the immense number of hospital personnel who have kept the "care" in health care. From the cook in the kitchen who was determined to find a lemon for my husband -- to the Transplant Coordinators who patiently answer ever single question asked of them -- even if they have answered it before, everyone we have encountered has played a critical role in this waiting game.
Without family and friends we would have faltered many times, but knowing they are there, and being strong for them has helped us get to the stage we are at now. Will the call come tonight? Will I make it south through five states to be with my husband in time? What about the family who just lost someone and have given my husband a chance at living? Our thoughts are forever changed on organ donation. That, too, would be someone else who had to make that decision, not us. Now, we truly understand the importance, and the unselfish act by families when they make that decision. It's hard to think about, and harder to discuss. Knowing that someone dies to let someone live. The doctor refers to it as survivor's guilt. They feel it too. To have a doctor take the time to explain that to you, makes it easier somehow. Somehow the wait will still continue tomorrow . . .
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