Say a prayer for us please

[RowdysMom]

Hi Lora - I'm so sorry to hear about all of this - BUT I am so relieved to hear that you are a nurse and can monitor the situation. Stay on top of them - be a b*tch if you have to - the hospital is a dangerous place these days and when you know EXACTLY what is happening, what is NOT happening, and what SHOULD happen, it is even scarier.

Is his pacemaker a bi-vent pacer with an ICD? If not, they might consider putting one in, if/when he can tolerate the procedure. The back side of my hubby's heart is dead too, but the bi-ventricular pacemaker made all the difference in the world in his ejection fraction - it went from 18% to 35% and has stayed at 35% since.

Be strong - TRY to get some sleep - if you go down, you won't be of any help to him.

[Lora9584]

Guys you are all awesome and make me feel so much better. Not for sure what type of pacemaker he has, I will have to dig out the card and see. Believe me I have been a B---- today several times. I am sure they were glad when I left. He got teary eyed today and I was gonna spend the night there, but again he gets so upset when I say that that it is better for him if I come home. Of course I will be there bright and early in the morning. I am really worried about Monday though, I am supposed to go back to work and we really need all the hours I can get, but not for sure if I will be able to do that if he is still in the hospital. I REALLY miss doing home health, I always just scheduled my visits around my time at the hospital. I am making out a list of questions to ask the doctor in the morning. They are always in and out so quick when they are covering for someone else that you have a hard time asking any questions at all. I did get him to eat a little today but as of tonight there was no difference in his edema or his shortness of breath. He misses the dogs bad, If they were only smaller I could sneak one in, but that is not going to happen. Graff lays on Doug's blanket all the time except to go out to potty and to eat. So I know that he misses him too. Will update more tomorrow when I know more, thanks again guys.

[RowdysMom]

Have they given him Natrecor IV? It is a newer, more natural diuretic used in heart failure. It sometimes work better than Lasix to draw off the fluid in heart failure. Here is a web site to read more about it. http://www.natrecor.com/ My husband cannot take Lasix, it makes him sicker than the edema from heart failure so they gave him Natrecor the last time he needed to get some fluid off and it worked really well.

The biventricular pacemaker is to pace the left and right side of the heart so that they are syncronized - and that can greatly increase cardiac output in heart failure. It can also pace the heart if the SA node isn't working correctly. The ICD is an internal defibrillator - since persons with heart failure are so prone to problematic ventricular arrythmias. He is probably too sick to get one now, if this is not what he already has. But he is likely to need one in the near future.

Here is a web site that has everything you could ever want to know about heart failure - I learned so much from the information on this site. http://www.chfpatients.com/ The message board is down right now, but when it is up, it is awesome for talking to people living with heart failure.

YES, write down all those questions and ask them all - don't let the docs out of the room till you get all the answers you need!!!

I know, it is really hard when you need to go to work and you need to be in the hospital at the same time. Do you have a friend or relative who could be with him while you work?

Good luck with everything, let us know how things are going.

[Lora9584]

Well he actually got to come home last night. But after I got him home he got so upset and crying saying please don't make me go back to the hospital again. He is so afraid he is going to die in a hospital. The doctor told us last summer that he was terminal so I do understand his fears. They did get alot of fluid off of him and he is breathing better which was my objective. We had a bad night last night. His blood pressure shot up to 172-80 which is extremely high for him. But went back down quickly. I got him back to back around 2am and then my alarm went off at 430 so that I can get ready for work. He does have the dual pacemaker and they have told that basically there is nothing else they can do except to treat symptoms and keep him comfortable. I am waking him up before I go to work to see how he is, and my oldest son will be here until almost 1 pm today, so he won't be by himself but just a couple of hours. My son knows to call me at work if anything changes so I will go. He just keeps apologizing to me, and when I ask him for what he says for him being so sick and for my life being so terrible. I keep trying to tell him that I am here for the duration and love him more than life. But it doesn't help much. I wish there was something that I could do to make him understand how loved he is and how thankful I am for every single minute that we have together. Thanks again guys for all of your support and understanding.

[red98vett]

Oh .....your post is breaking my heart....I'm going thru something similar ...My husband gets in very dark moods and apologizes to me while breaking down and it just breaks my heart....NO ONE wants to be ill...but it's so hard to keep the mood uplifting and make each day their best day when they get so depressed.........I wish I had something that could help you....you really do sound like you're doing the best you can and he's very lucky to have you.....

I'm so sorry this is happening to you & your husband - it's so hard to wake up everyday wondering what the day will bring...which is why I'm so thankful for my girls - they really do help alot

My prayers are with you and your husband and I hope he can continue to be comfortable ....if you EVER NEED TO TALK ...feel free to write !

[red98vett]

I have a question - Is your husband able to be on the computer ? When I found out my husband is Terminal and I needed answers and help - I found sites that deal with terminal illness and spent lots of time reading before getting my husband to join one of the sites...

My husband isn't the kind to sit and post on a site like I do... but even to just to get on and read about others dealing with the same illness can offer some new ideas or help him understand what he's going thru - and YOU too....

I know this isn't any real help but it could give him contact with others going thru the same thing.....and I actually learned about new medications and little things he could do to help himself on these sites....

It's just an option for you but it's not for everyone...My husband stopped going on the site I found because he said it made him more depressed....

[chattiesmom]

Lora, you and your dear husband are in my thoughts and prayers.

[topknot]

Lora,
My husband was in the hosptial all of Aug. and Sept. with a (first visit)triple by-pass, (2nd visit) 3 stents put in, and the third time his heart rate was up to 177 (defibulation - where the top chambers were beating twice as fast as the bottom chambers) and was due to his heart medicines not right combination or amounts. He is doing much better now and has returned to work, but takes about 15 different perscriptions a day. His stress test turned out good - he had a 40 and it is suppose to be anywhere from a 35 - 50. It has been hard, since he was out of work and not a regular pay coming in, but I still have him here. It is soooo hard when your husband gets sick because he is suppose to take care of you - we always think - because they have been so strong before. He was abole to use a heart program form home for the first 3 months - where he tok his blood pressure and weight every morning and then the machines phoned in the ressults to the hospital. They would call if the numbers were not right and to come in for a check or not. The insurance covered that as preventative. His ankles swelled the 3rd visit when his heart rate was up to 177 - sign of heart failure the doctor said. With the heart it takes so much to get everything right. And all the doctors must communicate together - since one is like an electrician and then there is a type pf plumber, etc.. for the heart. I ended up wrting all the stuff down and kept it in my purse - so I could regive the information to the different doctors. It was a lot faster for them than having to find it - especially the medicines and doses he was taking.
I hope all works out for you. My hubby didn't want to return to the hospital after the first time, but we had to go back two more times for major stuff. He also had to have the protable difublator the second time when we had to call 911 and this was after his open-heart surgery and the machine was killing him - by pulling on his stiches and cut tissues. I hated it - to see him in such pain, but like I told him - you will keep going back if needed and I am glad I told him that because he did eventually get better.
My best to you. I hope things get better and will say prayers for your family. The prayers my family and friends gave us - really made a difference. The doctors were surprised how fast he healed. It was amazing. I forgot to mention that my husband did die for 3 minutes the first time to the hospital in the emergency room and he did see the white light. But luckily they were able to bring him back. It is amazing what they can do now.
Best Wishes to you and your family,
T.

[KimMee's Mom]

I am praying for you and your family. God Bless you and I hope you reach out to people near you that can give you hugs and support.

[Sherry Lynn]

{{{{{{{{{{ Big Hugs }}}}}}}}}}}

[teri88]

You are in my prayers, I hope that everything works out for him. It is so hard to be sick, especially when you are used to being a hard worker. I know from experience how frustrating it is! I've actually said to my husband that I don't know how he can stand me, I can't stand myself! It's hard to be dependant on others. Hang in there!

[RowdysMom]

Originally Posted by Lora9584

The doctor told us last summer that he was terminal so I do understand his fears.

Terminal in heart failure is very different from terminal cancer - you can live for some time with heart failure with the correct drugs and therapeutic regimen (all heart failure is basically terminal - it just depends when the heart decides to give up its fight).

I would highly recommend to you the information at www.chfpatients.com You will find lots of people who were told they had only a short time to live - when in fact it is now years later. Be sure to read Jon's story (he's the site owner and has heart failure for many years). He is a wealth of practical information.

It is so hard to not give up hope and that is the worst thing you can do (I know YOU won't give up hope - I mean your husband giving up). I hope he can find meaning and hope. I saw my hubby giving up and then we got Rowdy. Now, he has something to take care of, something that makes him smile everyday, and something to enjoy. He is a million times better than before we got Rowdy. I also play up our granddaughter, telling my husband how much she needs him and when she is here, it makes him smile and feel better too.

Take care and please know that we are here for you.

[Kelz]

Your Family is in our prayers!

[Lora9584]

I wanted to let everyone know that yesterday was a good day for my hubby. He said that he felt pretty good all day. We are keeping a very close eye on his intake and output and yesterday he put out a lot more than he took in, so that was good. Don't know about today but thank good yesterday was good. One day at a time is all I can worry about. I told him we need to thank god for the good days and the bad days well we just have to realize that they will pass.

[RowdysMom]

I always look for your updates. Thanks for posting them. I am thankful that you all had a good day. With careful monitoring of input and output and sodium intake, you can have some more good days - I'm sure of it! Hang in there.

Keep us posted when you can.