thank you.
DW
Friday, February 26, 2010
Time
Would I make it stand still if I could? Would I turn back the clock if I could? Would it do any good if I could? All questions I've been thinking about. The cardiologist said that he would be where he is, but not this soon, had he chosen a healthier path of living at a much earlier age. But then, he would have given up the one thing he loves the most - eating. Eating what he wants, when he wants. So I don't know. Do you give up something you enjoy to have a longer healthier life, or do you just charge through what you have of life knowing that you are loving every moment of every day?
I don't think my husband would have been a very happy man living his life with restrictions and I understand that now. I understand the choice he made to not be compliant. But how sad. That at such a relatively young age, he is facing death.
OK, how pessimistic was that? Of course we both hope and pray that the outcome of the bypasses will be only positive. But this has made us stop and look at what will happen should he have a stroke, become paralyzed, become incompacitated, or die. Something the every diabetic family probably needs to think about - ahead of the event.
Yesterday, he got a handicap parking sticker. Something he has needed for over a year. We laughed and joked that this made it official. But I think laughter is a way to avoid the fear. Or perhaps it allows us to remain in our "fog". We know we are still in shock. We figure the stages of grief can wait for now. Yet I see both of us floating in and out of them. We have our moments of denial, anger, reconciliation and progress. We have moments where we sit and talk about what to do, what we can do. We focus on healthy foods (he has already dropped 10 pounds). We talk about what types of exercise he can do as soon as surgery is over. We talk about pain management.
Then we have our moments of sheer denial. This isn't happening. Let's plan a cruise for June. Until reality slaps us both back to the present. We both agree that we are living in the unknown. It's like wandering around in a tunnel and there's no light at either end. Until we meet with the surgeon and they actually schedule a date for surgery, everything is just in limbo.
Until reality slaps us back to the present and we realize the dogs are out of food, the refrigerator repair guy will be here in a couple of hours, we need to work on next weeks menu and grocery list......
I think today I want time to stand still. I don't want him to have to have this surgery. I want there to be an alternative. I want to turn the clock back 30 years and make him eat right and exercise. I don't want to go forward down this particular path. We sit and talk and he doesn't want to go down this path either. He is anxious about the pain. I try to reassure him that they will manage his pain, all he has to do is tell them what the level is. He is anxious about having to get up and walk immediately after surgery. He can't walk now because of his back. I remind him that the back surgeon's team is already coordinating with the cardiac team to insure that he doesn't experience pain.
So I find myself now in the role of comfortor, cheerleader, motivator, encourager. And this blog has become a place for me to grieve, to share my own fears, because I can't let him know any of it. I have to remain strong for him. I have to keep his spirits up. I have to find humor every day in something so he can see the humor in something.
I couldn't share with him my anger. I can't share with him my fear. Thank goodness for blogs!
We have researched his surgeon and the facility and are extremely pleased - they are in the top 15% of the nation for this type of surgery. It has helped his confidence to know this. We have made a list of quesitons to ask and have been modifying it daily. We are just waiting. Waiting til Tuesdays consultation. Waiting to have the surgery scheduled. Trying to stay "normal" - yet all the time a sense of wandering around, no direction, worried that he could have a heart attack at any moment, gently reminding him that he can only do stairs one time a day.
I am working to keep my own physical strength up. I'm obviously running up and down stairs for him multiple times a day. Alone in carrying in all the groceries now. Having to carry the carpet shampoo machine upstairs by myself (you know, puppies do make messes). So I have started a strengh building program working with repetitions and weights on a bowflex machine. Hoping I can keep up with the demands of what I need to do to keep him from lifting anything over 3 pounds or exerting himself in any way until we get past this.
In limbo. That's where we are today. I'm off to find something fun to share with him. I think it's time for a smile today. :o)
DW
I don't think my husband would have been a very happy man living his life with restrictions and I understand that now. I understand the choice he made to not be compliant. But how sad. That at such a relatively young age, he is facing death.
OK, how pessimistic was that? Of course we both hope and pray that the outcome of the bypasses will be only positive. But this has made us stop and look at what will happen should he have a stroke, become paralyzed, become incompacitated, or die. Something the every diabetic family probably needs to think about - ahead of the event.
Yesterday, he got a handicap parking sticker. Something he has needed for over a year. We laughed and joked that this made it official. But I think laughter is a way to avoid the fear. Or perhaps it allows us to remain in our "fog". We know we are still in shock. We figure the stages of grief can wait for now. Yet I see both of us floating in and out of them. We have our moments of denial, anger, reconciliation and progress. We have moments where we sit and talk about what to do, what we can do. We focus on healthy foods (he has already dropped 10 pounds). We talk about what types of exercise he can do as soon as surgery is over. We talk about pain management.
Then we have our moments of sheer denial. This isn't happening. Let's plan a cruise for June. Until reality slaps us both back to the present. We both agree that we are living in the unknown. It's like wandering around in a tunnel and there's no light at either end. Until we meet with the surgeon and they actually schedule a date for surgery, everything is just in limbo.
Until reality slaps us back to the present and we realize the dogs are out of food, the refrigerator repair guy will be here in a couple of hours, we need to work on next weeks menu and grocery list......
I think today I want time to stand still. I don't want him to have to have this surgery. I want there to be an alternative. I want to turn the clock back 30 years and make him eat right and exercise. I don't want to go forward down this particular path. We sit and talk and he doesn't want to go down this path either. He is anxious about the pain. I try to reassure him that they will manage his pain, all he has to do is tell them what the level is. He is anxious about having to get up and walk immediately after surgery. He can't walk now because of his back. I remind him that the back surgeon's team is already coordinating with the cardiac team to insure that he doesn't experience pain.
So I find myself now in the role of comfortor, cheerleader, motivator, encourager. And this blog has become a place for me to grieve, to share my own fears, because I can't let him know any of it. I have to remain strong for him. I have to keep his spirits up. I have to find humor every day in something so he can see the humor in something.
I couldn't share with him my anger. I can't share with him my fear. Thank goodness for blogs!
We have researched his surgeon and the facility and are extremely pleased - they are in the top 15% of the nation for this type of surgery. It has helped his confidence to know this. We have made a list of quesitons to ask and have been modifying it daily. We are just waiting. Waiting til Tuesdays consultation. Waiting to have the surgery scheduled. Trying to stay "normal" - yet all the time a sense of wandering around, no direction, worried that he could have a heart attack at any moment, gently reminding him that he can only do stairs one time a day.
I am working to keep my own physical strength up. I'm obviously running up and down stairs for him multiple times a day. Alone in carrying in all the groceries now. Having to carry the carpet shampoo machine upstairs by myself (you know, puppies do make messes). So I have started a strengh building program working with repetitions and weights on a bowflex machine. Hoping I can keep up with the demands of what I need to do to keep him from lifting anything over 3 pounds or exerting himself in any way until we get past this.
In limbo. That's where we are today. I'm off to find something fun to share with him. I think it's time for a smile today. :o)
DW
Wednesday, February 24, 2010
survival mode
I woke up this morning thinking that both of us have gone into "survival" mode. It doesn't matter what he did or did not do that got him to this point. He is here. We need to do whatever it takes to prevent a heart attack between now and surgery. That includes cancelling all non-essential appointments, cutting back on work so stress is reduced, limiting stairs to once down and once back up a day for him. Doing whatever it takes to survive.
We are starting to talk about the "what-ifs", trying to prepare for the future. If one can do that. We talked about his return home, getting a hospital bed on the main floor since our bedroom is upstairs.....long term care arrangements if those are needed. Rearranging furniture, who can come help moving furniture, etc. Today I hope we work on the financial aspect of this. They are all good conversations. Trying to think logically, yet long term. I think that while we are both still in a bit of shock and trying to absorb the information as it comes in.....and perhpas in a bit of denial on some level, we are making a bit of progress in preparing ourselves for this. We have requested support from the chronic care counseling unit and hopefully we can schedule that in the near future.
While I truly do not like counseling, I think he needs it in order to avert depression, so I'm requesting it for both of us. He has made a remarkable turnaround in that he is allowing me to participate in all of this with him. I guess it had to get so bad that he didn't want to make the decisions alone.
We have no appointments today. But hopefully we can take care of a few errands we need to make. Need to spread them out over the next few days so that we limit his activity and exertion levels. I feel a peace about me this morning that I know is coming from the prayers of all our family and loved ones. It is good.
DW
We are starting to talk about the "what-ifs", trying to prepare for the future. If one can do that. We talked about his return home, getting a hospital bed on the main floor since our bedroom is upstairs.....long term care arrangements if those are needed. Rearranging furniture, who can come help moving furniture, etc. Today I hope we work on the financial aspect of this. They are all good conversations. Trying to think logically, yet long term. I think that while we are both still in a bit of shock and trying to absorb the information as it comes in.....and perhpas in a bit of denial on some level, we are making a bit of progress in preparing ourselves for this. We have requested support from the chronic care counseling unit and hopefully we can schedule that in the near future.
While I truly do not like counseling, I think he needs it in order to avert depression, so I'm requesting it for both of us. He has made a remarkable turnaround in that he is allowing me to participate in all of this with him. I guess it had to get so bad that he didn't want to make the decisions alone.
We have no appointments today. But hopefully we can take care of a few errands we need to make. Need to spread them out over the next few days so that we limit his activity and exertion levels. I feel a peace about me this morning that I know is coming from the prayers of all our family and loved ones. It is good.
DW
Tuesday, February 23, 2010
cardiologists call
the doctor had more time to go over the cath and called and said she does not want him to exert himself at all. No activity until he has the surgery. That tells me they are fearful that he might have a heart attack before surgery which indicates it's worse than we thought.
He told his parents. They want to be here. They have not visited him at his home since 1982. Missed their grandkids graduations, but for this, they want to be here. I told him that I cannot take care of them, he is going to be my primary concern. He has a consult with the surgeon next week, so we will wait til then to make a decisions. Hopefully they will schedule the surgery then, but we have to wait for the dye to clear his system.
He is eating healty. He is testing. Glucose at 57 at 11 am today.
DW
He told his parents. They want to be here. They have not visited him at his home since 1982. Missed their grandkids graduations, but for this, they want to be here. I told him that I cannot take care of them, he is going to be my primary concern. He has a consult with the surgeon next week, so we will wait til then to make a decisions. Hopefully they will schedule the surgery then, but we have to wait for the dye to clear his system.
He is eating healty. He is testing. Glucose at 57 at 11 am today.
DW
Monday, February 22, 2010
BLAME it on Diabetes!!!
The cardiac surgeon said, and I quote word for word:
His diabetes has literally chewed up all of his arteries.
I sure hope diabetics will start to listen to me now! He had the cardiac catheterization this morning. They went in just enough to look at the damage and came right back out. So the good news is that very little dye was used in today's procedure, so very little risk of additional damage. He will get tests to verify this in a week.
BUT.....he is going to have to have FIVE bypasses done! Every artery has been destroyed by diabetes.
Not by high cholesterol.
Not by coronary disease.
BY DIABETES!!!
Now, tell me this has no impact on the spouse, family, everyone involved in his life? He will be out of work for up to 6 weeks. A minimum of a month. He could have "the big one" any time between now and surgery...or even during surgery.
the"news" has been coming in all afternoon with each visit from a doctor or a nurse as he is still in recovery. He has to modify the low glycemic menu to a heart healthy menu. Immediately after surgery, he will start with cardiac rehabilatation. He HAS to lose weight. He HAS to follow the diet. He is not going to be allowed any options. So all that is wonderful news as far as I'm concerned.
Bottom line, I still am the one to play police and monitor what he heats, what his activity level is.
But backing up. Lots of issues today with just this procedure. He was fasting and woke up to glucose at 57. Yikes! Took orange juice with the stuff to protect his kidneys Got to hospital and glucose was at 87. They started a dextrose IV. Wanted it higher.
Then, had to use an ultrasound to find pulse in his feet. Did a special test called AVI to determine difference between BP in feet and arms. Had to be at least 1.0 and that was where he was. IV drip with more stuff to protect his kidneys. His pain shot up because he couldn't move (back and hip pain) so they called an anethesiologist in for standby in case they had to put him under during the cath (ended up not having to go this route). Couldn't administer any pain meds until he had signed all of the releases. So lots of tiny little details to consider. Excellent hospital. Wonderful staff. Thank goodness!
After the cath, they put hard pressure on the incision point in his groin for 20 minutes. We are now 3 hours post op and they still have the IV with the kidney stuff going. He cannot get up until 30 minutes after that is turned off.
I think the biggest problem for him has been the pain from his hips and back - he has to lay perfectly flat and cannot move his leg or hip. Pretty miserable, but he is handling it well.
So, let's have that famous argument now. If you take all your meds and follow your diet...you can STILL get right to where he is needing to have al 5 arteries bypassed. Why? because even if you have a NORMAL A1C.....you can be going equally high and low and have it average out to a normal. And there is no way to know this unless you test your glucose 8 times a day and also throughout the night. And for each time your glucose goes high, there is probably going to be damage to your arteries. And yet....your doctors will not pick up on any of this because your A1C is normal.
He has had a normal A1C for the last 30 years. It only went to 9.2 in December. His heart did not get to this point in the last 2 months! It has been coming on for years and that is according to his cardiologist. Yet no one ever did a thing about it until his A1c shot up....and he reported angina pains a full year after they started happening.
So just because you have a normal A1C - that does not guarantee you anything!
If you are the spouse of a diabetic who has a normal A1c.....I would recommend that you insist they test 8 times a day and ate least 2 - 3 times at night. If it truly stays normal - great. But if it goes low or high, even once, understand that it has to go equally the same distance in the other direction in order for it to average out to be normal. For instance.....if it goes up to 300 and the average is 120, then it has to drop to ZERO at least once, or go down to 50 or lower twice, at some time, to have it average out to 120.
I would have to say that a good A1C is really not a good test. Testing every 2 - 3 hours around the clock is the only thing that will tell you what's really going on. We did that back in 2006. He has not done it since I feel certain that he's been doing the high/low thing for at least the last 4 years!!! No wonder he needs 5 bypasses.
Please remember, I'm merely writing about the life of one guy, and my life as his primary care giver, and my battle to accept this "lot in life" that has been cast upon us. It is the ugly truth about what hapens to a diabetic who has passed stage 3 of kidney failure and entering into stage 4.
DW
His diabetes has literally chewed up all of his arteries.
I sure hope diabetics will start to listen to me now! He had the cardiac catheterization this morning. They went in just enough to look at the damage and came right back out. So the good news is that very little dye was used in today's procedure, so very little risk of additional damage. He will get tests to verify this in a week.
BUT.....he is going to have to have FIVE bypasses done! Every artery has been destroyed by diabetes.
Not by high cholesterol.
Not by coronary disease.
BY DIABETES!!!
Now, tell me this has no impact on the spouse, family, everyone involved in his life? He will be out of work for up to 6 weeks. A minimum of a month. He could have "the big one" any time between now and surgery...or even during surgery.
the"news" has been coming in all afternoon with each visit from a doctor or a nurse as he is still in recovery. He has to modify the low glycemic menu to a heart healthy menu. Immediately after surgery, he will start with cardiac rehabilatation. He HAS to lose weight. He HAS to follow the diet. He is not going to be allowed any options. So all that is wonderful news as far as I'm concerned.
Bottom line, I still am the one to play police and monitor what he heats, what his activity level is.
But backing up. Lots of issues today with just this procedure. He was fasting and woke up to glucose at 57. Yikes! Took orange juice with the stuff to protect his kidneys Got to hospital and glucose was at 87. They started a dextrose IV. Wanted it higher.
Then, had to use an ultrasound to find pulse in his feet. Did a special test called AVI to determine difference between BP in feet and arms. Had to be at least 1.0 and that was where he was. IV drip with more stuff to protect his kidneys. His pain shot up because he couldn't move (back and hip pain) so they called an anethesiologist in for standby in case they had to put him under during the cath (ended up not having to go this route). Couldn't administer any pain meds until he had signed all of the releases. So lots of tiny little details to consider. Excellent hospital. Wonderful staff. Thank goodness!
After the cath, they put hard pressure on the incision point in his groin for 20 minutes. We are now 3 hours post op and they still have the IV with the kidney stuff going. He cannot get up until 30 minutes after that is turned off.
I think the biggest problem for him has been the pain from his hips and back - he has to lay perfectly flat and cannot move his leg or hip. Pretty miserable, but he is handling it well.
So, let's have that famous argument now. If you take all your meds and follow your diet...you can STILL get right to where he is needing to have al 5 arteries bypassed. Why? because even if you have a NORMAL A1C.....you can be going equally high and low and have it average out to a normal. And there is no way to know this unless you test your glucose 8 times a day and also throughout the night. And for each time your glucose goes high, there is probably going to be damage to your arteries. And yet....your doctors will not pick up on any of this because your A1C is normal.
He has had a normal A1C for the last 30 years. It only went to 9.2 in December. His heart did not get to this point in the last 2 months! It has been coming on for years and that is according to his cardiologist. Yet no one ever did a thing about it until his A1c shot up....and he reported angina pains a full year after they started happening.
So just because you have a normal A1C - that does not guarantee you anything!
If you are the spouse of a diabetic who has a normal A1c.....I would recommend that you insist they test 8 times a day and ate least 2 - 3 times at night. If it truly stays normal - great. But if it goes low or high, even once, understand that it has to go equally the same distance in the other direction in order for it to average out to be normal. For instance.....if it goes up to 300 and the average is 120, then it has to drop to ZERO at least once, or go down to 50 or lower twice, at some time, to have it average out to 120.
I would have to say that a good A1C is really not a good test. Testing every 2 - 3 hours around the clock is the only thing that will tell you what's really going on. We did that back in 2006. He has not done it since I feel certain that he's been doing the high/low thing for at least the last 4 years!!! No wonder he needs 5 bypasses.
Please remember, I'm merely writing about the life of one guy, and my life as his primary care giver, and my battle to accept this "lot in life" that has been cast upon us. It is the ugly truth about what hapens to a diabetic who has passed stage 3 of kidney failure and entering into stage 4.
DW
Sunday, February 21, 2010
Nervous- but not nervous
As the wife of a diabetic, I thought I would sit here today and write my thoughts about tomorrow. I tell myself over and over that it is wasted energy to worry. Yet I think you need to have some kind of plan in the event something goes wrong.
What if he has a heart attack during the procedure? Check. Have my list of people to call first.
What if he has a stroke? Check Have the medical/financial power of attny and the DNR ready to take with me.
What if his kidneys fail? Well, that's on the insurance will have to take care of, but we have space for a home dialysis system here.
What if he needs surgery in a week or so? Check. Calendar is clear the rest of the month.
What if everything goes ok and they find absolutely nothing wrong with his heart? Check. Praise Jehovah!
I think I understand all of the risks involved since he is so far progressed with his diabetes. I don't see an option, I think it's a test he has to undergo. I think my greatest worry and his biggest risk is that of kidney failure. I realize that it can come back. It can be permanent.
He does not seem to have any of these thoughts at all. It's almost as though he thinks he's going in for a simple xray and that's all it will be.
I don't think I'm really worried - I'm just trying to cover all the bases and be prepared for any outcome....if one can be prepared. I do have great confidence (too much so?) in his providers that they will make the best decisions moment by moment.
However....as the spouse of a diabetic....these are not worries that I would have ever considered before I met this man. His risk in this procedure is MUCH greater than someone who does not have diabetes. At this age, he most likely would not even be considered for this process. It wouldn't happen for another 20 years....as an average...of what statistics show us. But neuropathy and high glucose increase the damage that occurs in arteries, thus bringing this on at a much earlier age.
He does not want to make a big deal out of this. I have informed a few close friends and my family that I might need to call on them should he end up with an extended stay in the hospital. As advised, he is packing an overnight bag. He took the first does of a liquid med this morning that is supposed to help protect his kidneys. He said it was absolutely horrid. The smell is still in the house and quite rank. Interesting that something that smelly could protect anything.
I think mostly, it's hard to put my feelings into words today. Worried, but trying not to worry. Nervous, but really not nervous (because I know that no matter what happens, it will be ok). Optimistic - because I have to be that way for him to help keep his spirits high. Jovial - because he endures stress best with jokes. So a complete roller coaster of emotions today - that I probably wouldn't have if he didn't have diabetes.
Bottom line. I have learned that no matter what happens in life, we somehow manage to survive it. So no matter what happens tomorrow, it will be ok.
DW
What if he has a heart attack during the procedure? Check. Have my list of people to call first.
What if he has a stroke? Check Have the medical/financial power of attny and the DNR ready to take with me.
What if his kidneys fail? Well, that's on the insurance will have to take care of, but we have space for a home dialysis system here.
What if he needs surgery in a week or so? Check. Calendar is clear the rest of the month.
What if everything goes ok and they find absolutely nothing wrong with his heart? Check. Praise Jehovah!
I think I understand all of the risks involved since he is so far progressed with his diabetes. I don't see an option, I think it's a test he has to undergo. I think my greatest worry and his biggest risk is that of kidney failure. I realize that it can come back. It can be permanent.
He does not seem to have any of these thoughts at all. It's almost as though he thinks he's going in for a simple xray and that's all it will be.
I don't think I'm really worried - I'm just trying to cover all the bases and be prepared for any outcome....if one can be prepared. I do have great confidence (too much so?) in his providers that they will make the best decisions moment by moment.
However....as the spouse of a diabetic....these are not worries that I would have ever considered before I met this man. His risk in this procedure is MUCH greater than someone who does not have diabetes. At this age, he most likely would not even be considered for this process. It wouldn't happen for another 20 years....as an average...of what statistics show us. But neuropathy and high glucose increase the damage that occurs in arteries, thus bringing this on at a much earlier age.
He does not want to make a big deal out of this. I have informed a few close friends and my family that I might need to call on them should he end up with an extended stay in the hospital. As advised, he is packing an overnight bag. He took the first does of a liquid med this morning that is supposed to help protect his kidneys. He said it was absolutely horrid. The smell is still in the house and quite rank. Interesting that something that smelly could protect anything.
I think mostly, it's hard to put my feelings into words today. Worried, but trying not to worry. Nervous, but really not nervous (because I know that no matter what happens, it will be ok). Optimistic - because I have to be that way for him to help keep his spirits high. Jovial - because he endures stress best with jokes. So a complete roller coaster of emotions today - that I probably wouldn't have if he didn't have diabetes.
Bottom line. I have learned that no matter what happens in life, we somehow manage to survive it. So no matter what happens tomorrow, it will be ok.
DW
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