Nancy
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Nancy
Well-known member
Hi Bonnie-
Joe is slowly getting stronger. The main battle right now is getting the dialysis working the way it is supposed to. He has to severely limit the amount of liquid he takes in, since removing too much fluid during dialysis will make his bloodpressure drop. So he is very thirsty. I'm sure he misses the days when some Zaroxolyn plus some extra Lasix would get it out. But that won't work now. It's a slow process. The almost two month hospitalization put about 10 pounds of fluid on him from a too high sodium diet plus sodium laden IV fluids.
By the way, he still cannot tolerate a higher amount of sodium in his diet, like they thought he could. I'm still keeping his extremely low, and now he also has to watch potassium intake and phosphorus intake.
He is making gains with Physical Therapy and Occupational Therapy.
He still quite weak, but improving.
Joe is slowly getting stronger. The main battle right now is getting the dialysis working the way it is supposed to. He has to severely limit the amount of liquid he takes in, since removing too much fluid during dialysis will make his bloodpressure drop. So he is very thirsty. I'm sure he misses the days when some Zaroxolyn plus some extra Lasix would get it out. But that won't work now. It's a slow process. The almost two month hospitalization put about 10 pounds of fluid on him from a too high sodium diet plus sodium laden IV fluids.
By the way, he still cannot tolerate a higher amount of sodium in his diet, like they thought he could. I'm still keeping his extremely low, and now he also has to watch potassium intake and phosphorus intake.
He is making gains with Physical Therapy and Occupational Therapy.
He still quite weak, but improving.
K
Karlynn
Still praying for the best for you and Joe. You are such an inspiration Nancy, your success in nursing Joe gives us all hope.
P
Phyllis
Thanks for the update, Nancy. You are our inspiration and Joe is so lucky to have you!
Andrew'sMom
Well-known member
you continue to be in my prayers. glad to hear joe is getting stronger!
fyrfytr
Well-known member
Hey Nancy,
Thanks for the update on Joe. How are you doing?
I will keep you and Joe in my thoughts and prayers.
Thanks for the update on Joe. How are you doing?
I will keep you and Joe in my thoughts and prayers.
hensylee
Well-known member
Thanks for the update, Nancy. As with Chris, we are standing by.
hi nancy,
been thinking about you and joe....sounds like you are taking good care of your man there.....little by little, right?
please send joe our best and know that you are both in our continued thoughts and prayers.
all the best, sylvia
been thinking about you and joe....sounds like you are taking good care of your man there.....little by little, right?
please send joe our best and know that you are both in our continued thoughts and prayers.
all the best, sylvia
Ross
Well-known member
You know you both have my love and support. Guess we've both seen many battlefields within hospitals.
Nancy
Well-known member
You've got that right, Ross. Much of the time with complicated cases, there are necessarily, way too many medical people involved, and they start to work against each other. To make matters worse, they don't communicate. I'm sure you've seen that as well, with yourself, and probably with Chris.
Everyone wants to do a good job (I think
), but what one wants will unravel the other's good work.
I wish there was something called a "complicated case manager" who would direct the whole scenario, but no, it goes on and on and gets a life of its own.
I think that is the exhausting thing about these situations. A lot of stupid stuff happens.
Here's something really stupid that I should have caught, but didn't. Joe has some stitches in his jugular vein area which should have been removed about a month ago in the hospital. The dressings they put on in dialysis covers them, so I didn't notice that they were still there until a couple of days ago. They are too healed in for me or the Visiting Nurses to remove. So he has to have a surgeon remove them, I swear, you always hope for the best, but these things still happen.
Oh, well, he's home and getting better in spite of it all.
Perfection is in heaven, I guess.
Everyone wants to do a good job (I think
), but what one wants will unravel the other's good work.I wish there was something called a "complicated case manager" who would direct the whole scenario, but no, it goes on and on and gets a life of its own.
I think that is the exhausting thing about these situations. A lot of stupid stuff happens.
Here's something really stupid that I should have caught, but didn't. Joe has some stitches in his jugular vein area which should have been removed about a month ago in the hospital. The dressings they put on in dialysis covers them, so I didn't notice that they were still there until a couple of days ago. They are too healed in for me or the Visiting Nurses to remove. So he has to have a surgeon remove them
, I swear, you always hope for the best, but these things still happen.Oh, well, he's home and getting better in spite of it all.
Perfection is in heaven, I guess.
dj/utvolsfan
Well-known member
Dear Nancy and Joe,
I haven't posted nearly as often as I have thought of you. I do apologize for that. You have been in my thoughts and prayers on a daily basis. So happy Joe is home now and you are in charge of him for the most part. He's in the best of hands.
Debbi
I haven't posted nearly as often as I have thought of you. I do apologize for that. You have been in my thoughts and prayers on a daily basis. So happy Joe is home now and you are in charge of him for the most part. He's in the best of hands.
Debbi
Nancy, there really is no excuse for those stitches to have been overlooked. It should not have been left up to you to discover them. That is the kind of think that makes me mad. Something simple made complicated by substandard care.
I'm glad Joe is home again and is in an environment more conducive for healing. Are Joe's kidneys functioning at all? How about output? I was hoping his dietary choices would have improved and have less restriction with sodium but maybe in time. I think of you all so often and all the struggles you have gone through together in the last several years and hope you will soon have some boring months.
I'm glad Joe is home again and is in an environment more conducive for healing. Are Joe's kidneys functioning at all? How about output? I was hoping his dietary choices would have improved and have less restriction with sodium but maybe in time. I think of you all so often and all the struggles you have gone through together in the last several years and hope you will soon have some boring months.
Nancy
Well-known member
I absolutely agree with you Betty. I'm quite sure the surgeon will not be very pleased when he has to dig them out of Joe. I'm hoping that he will take someone to task for not remembering to take them out.
You are right, it should not be up to me, but somehow, lots of things that others SHOULD be doing, end up on my doorstep.
Betty, his kidneys are functioning very little, perhaps a cup or so a day. His kidneys were OK prior to all this happening, not great, but in working shape, with chronic failure. I guess it was just too much stress on his system. He's been teetering on the edge of dialysis for a long time, but always recovered enough to prevent it. Then he had acute failure, and the acute and chronic combined did it.
Today, he did well with getting more fluid out. That was after I got a little perturbed. They increased his goal, and he did well, no drop in pressure.
Right now, he's about 5 pounds from his regular good weight. But in the hospital, he lost body mass, so his dry weight is probably lower than it was.
I would guess that once he loses about 7 pounds or so, he will be feeling better.
His fluid restriction is one liter a day. That's very hard to do, and it also means that anything like ice cream, popsicles, fluidy fruits and veggies are counted too.
I am hoping in time that he will be on a more regular regimen. This is mainly to get him to the bottom line, so to speak.
You are right, it should not be up to me, but somehow, lots of things that others SHOULD be doing, end up on my doorstep.
Betty, his kidneys are functioning very little, perhaps a cup or so a day. His kidneys were OK prior to all this happening, not great, but in working shape, with chronic failure. I guess it was just too much stress on his system. He's been teetering on the edge of dialysis for a long time, but always recovered enough to prevent it. Then he had acute failure, and the acute and chronic combined did it.
Today, he did well with getting more fluid out. That was after I got a little perturbed. They increased his goal, and he did well, no drop in pressure.
Right now, he's about 5 pounds from his regular good weight. But in the hospital, he lost body mass, so his dry weight is probably lower than it was.
I would guess that once he loses about 7 pounds or so, he will be feeling better.
His fluid restriction is one liter a day. That's very hard to do, and it also means that anything like ice cream, popsicles, fluidy fruits and veggies are counted too.
I am hoping in time that he will be on a more regular regimen. This is mainly to get him to the bottom line, so to speak.
It is unbelievable what you both go through. I stand in awe at your devotion and strength. My thoughts are with you.
Amazing is right:
Amazing is right:
Nancy, you and Joe are indeed amazing. I don't know what else to say. Ihave never seen or even heard of such a struggle for health. Amazing effort-amazing results-and most of all, amazing love.
Amazing is right:
Nancy, you and Joe are indeed amazing. I don't know what else to say. Ihave never seen or even heard of such a struggle for health. Amazing effort-amazing results-and most of all, amazing love.
B
Barbara Stewart
Nancy,
Thanks for the update. I haven't been on much lately, but I think about the two of you every day. I understand the frustration of having a complicated case. I had doctors working on me after my first surgery I never met, I was too out of it. My husband called on our PCP who stepped in and "quarterbacked" my treatment and I will forever be grateful. He is doing that with my new A fib problem. It is important to have someone who oversees things. Even with my last OHS, which went much smoother, I still came home from Houston with cellulitis in my groin area. It turned out to be some left over stiches, but my dear PCP treated me and got me through that. I still had to dig the stiches out myself with my trusty tweezers. Doctors have become so highly specialized that they seem only aware of their one little area of expertise. Your idea of a complicated case manager is a good one.
I'm glad to hear Joe is doing better. Nancy, thanks for your concern and good advice.
Barbara
Thanks for the update. I haven't been on much lately, but I think about the two of you every day. I understand the frustration of having a complicated case. I had doctors working on me after my first surgery I never met, I was too out of it. My husband called on our PCP who stepped in and "quarterbacked" my treatment and I will forever be grateful. He is doing that with my new A fib problem. It is important to have someone who oversees things. Even with my last OHS, which went much smoother, I still came home from Houston with cellulitis in my groin area. It turned out to be some left over stiches, but my dear PCP treated me and got me through that. I still had to dig the stiches out myself with my trusty tweezers. Doctors have become so highly specialized that they seem only aware of their one little area of expertise. Your idea of a complicated case manager is a good one.
I'm glad to hear Joe is doing better. Nancy, thanks for your concern and good advice.
Barbara
John & Joann
Well-known member
Nancy and Joe,
Thanks for the update. I know that this has been very difficult for both of you. We will keep you in our prayers and hope that the recovery continues to go forward!
John & Joann
Thanks for the update. I know that this has been very difficult for both of you. We will keep you in our prayers and hope that the recovery continues to go forward!
John & Joann
hi nancy,
i, too, am hoping no news is good news.
still thinking of you and joe and praying that with each day joe gets stronger and feels better (you too).
hoping you are resting a bit too.
all the best,
sylvia
i, too, am hoping no news is good news.
still thinking of you and joe and praying that with each day joe gets stronger and feels better (you too).
hoping you are resting a bit too.
all the best,
sylvia
Nancy
Well-known member
Joe is doing better each day. Finally, dialysis is getting some of the hospital fluid off. It is still a LOT of work for me, and he has so many appts. both in home and at doctor's offices. It is hard to get him out of the house. Right now, he uses a walker and then transfers into a transport chair (small wheelchair that I can handle and get into the car) and then the walker again to get into the car. He cannot go without these aids right now, and cannot use the stairs yet, but the Physical Therapist is working on that.
I just ordered him a red rollator which is a souped up walker with a basket for his oxygen (he's on that 24/7 now) and a little seat that he can sit on when he gets tired. That will get him up and walking more. So I am awaiting that delivery.
All doctors agree that he is VERY deconditioned from too many hospital stays, and needs to get moving lots more. It's a hard hump to get over. He gets so breathless with the moving around. But they all assure him and me that it will get better.
I do see improvement, so that is encouraging. And Joe sees it too.
It's post surgery all over again, without the surgery. Ya'll remember what that was like, sigh.....
I just ordered him a red rollator which is a souped up walker with a basket for his oxygen (he's on that 24/7 now) and a little seat that he can sit on when he gets tired. That will get him up and walking more. So I am awaiting that delivery.
All doctors agree that he is VERY deconditioned from too many hospital stays, and needs to get moving lots more. It's a hard hump to get over. He gets so breathless with the moving around. But they all assure him and me that it will get better.
I do see improvement, so that is encouraging. And Joe sees it too.
It's post surgery all over again, without the surgery. Ya'll remember what that was like
, sigh.....