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***ANOTHER UPDATE*** My husband is in the hospital - SEE LAST COMMENT!

Sandi1's picture
Sandi1
Posts: 278
Joined: Aug 2008

My husband is in the hospital.  I had to rush him to ER last Monday because he was having trouble breathing.  They admitted him right away because he was showing signs of having a heart attack.  After another examination, he was concluded that he had a large build up of fluid in his pleural space on the left side.  They took him into surgery on Wednesday and drained alot of fluid; and then injected talc to make the lining of his pleural space stick to his lungs so fluid doesn't build up again.  He has now been in the hospital for almost 5 days with two drain tubes coming out of his side draining what is left of the fluid. He is unable to get up and walk around, they only allow him to get up and sit in a chair.  The other night, somehow one of the tubes had come loose and my husband woke up in a pool of blood, they got him all fixed up and cleaned up; but i had noticed that the tube was full of alot of clots and he didn't seem to be draining anymore.  They decided to change the tube and see if that helped, it still didn't help. So they called the dr.  he said, he is probably done draining. I'm hoping that is what is going on, he cannot come home until they are out. He is getting stir crazy and missing home, and i'm exhausted travelling back and forth and working full time.  My boss is very understandable and lets me come and go as i please, but i feel guilty and try to stay as long as i can. 

Thats it, just wanted to keep everyone informed. Hopefully, he will get out tomorrow.

Sandi

 

UPDATE:  I got him home yesterday.  He still has pain, but not like he did before.  He is on pain meds and is weak, so we are working on getting him to eat to build his strength up.  He seems to just want to sleep all the time.  I think he is on too many pain meds and i told him that i think he needs to cut back on them. He is on a 12 hr release Oxycodone and he is also taking his immediate release Oxycodone.  I told him, its going to have to be one or the other; if the pain gets unbearable he can take the other one.  I had to leave him alone at home today, cause i needed to go to work. Hopefully nothing happens to him, i text him every 1/2 hr to check on him.  I am going to take him out in the yard when i get home, so he can get some fresh air and walk around a bit, then later i will give him a shower - hopefully that will help him sleep.  Well that's it - i'm terrified to have him home, because i just don't know what to do.  But then, i'm like - why are you scared, i took care of my mom when she had cancer - so i'm not sure why i'm so scared in this situation.  Silly i guess.

Oh well, thanks for listening.

Sandi

 

 

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

I'm glad he's where he has to be to get fixed up and hope this is the end of this problem.

Try and not wear yourself out too badly, one ill is enough?

Thanks for letting us know how he's doing, sending nothing but positive thoughts your and his way!!!!

Winter Marir

Lovekitties's picture
Lovekitties
Posts: 3343
Joined: Jan 2010

So very sorry to hear of these latest issues.

Hoping that he is now on the mend and you can slow down a bit to take care of you.

Hugs,

Marie who loves kitties

lp1964's picture
lp1964
Posts: 1240
Joined: Jun 2013

Sorry to hear about the new complications. You have a lot on Your plate. Don't be shy to ask for help or delegate some of it to someone around you. Try to carve out a half an our for yourself every day, when you just do nothing. Go to a place where there is nothing to do, like a Cafe or bookstore. It will feel weird first but after a few days you will feel recharged. If you stay in your regular environment all the time you will always find something to do and can't relax.

I wish a quick resolution for you guys and getting a brake.

Laz

Annabelle41415's picture
Annabelle41415
Posts: 6482
Joined: Feb 2009

Can't blame you both for being very frustrated but glad that he is there so they can monitor everthing that needs be.  He's got to be so frustrated with the tube and all.  Just hoping they can find the source of the clots - that doesn't sound good. Just hoping that they can get to the bottom of all that is going on and get him on the road to recovery. 

Kim

carrieh's picture
carrieh
Posts: 146
Joined: May 2012

Those ER trips can be really scary when they happen. It sounds like you handled everything really well, but I bet you are totally wiped out. Did they tell you the clotting is normal? At one point I had three drains (but they were in my abdomen) and nothing ever clotted...but it's probably just a total different thing. Not sure. If you have to, ask for a day or two off to get some rest! You're going to run yourself into the ground. I know, you have to do what you have to do, but you need to take care of you a little bit too. I'll keep you guys in my prayers.

Carrie

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

The ER may be my least favorite place in the world, even tho I know it's the best place to be sometimes.  Did he manage to get home today?

angelsbaby's picture
angelsbaby
Posts: 1171
Joined: May 2008

i hope he feels better soon

 

michelle

 

Helen321's picture
Helen321
Posts: 1409
Joined: May 2012

Hey Sandi, Glad he's doing a little better.  I know what you mean about the pain meds, last year I was a bit pain med happy and had to stop myself.  It does stop the pain though, that's for sure.  Keep us up to date on his progress=)  Helen

Trubrit's picture
Trubrit
Posts: 5149
Joined: Jan 2013

Of course it's not silly to feel scared. You have an awful lot on your plate.  

i am glad to hear that he is home, albeit just as stressfull.

Take care of yourself along the way. 

janderson1964
Posts: 2215
Joined: Oct 2011

Nothing silly about that. I can tell that you are a really loving and selfless caregiver for your husband and that's all that matters. He is lucky to have you.

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

Just checking in to see how your hubby and you are doing now.  Is the pain gone?  Are you getting any rest? Etc....

Sandi1's picture
Sandi1
Posts: 278
Joined: Aug 2008

Well, i got him home once for 2 1/2 days and then i had to take him back to the ER.  This time his blood pressure was 79/49; they told me that he was severly dehydrated and he had lost alot of blood, and he kidneys were shutting down.  They gave him IV fluids and 3 units of blood, and he was admitted to the hospital for another 3 days.  After studying all his bloodwork etc they came to the conclusion that he had lost alot of blood during his chest tube surgery.  He is much better now, and i have him home again. He is very weak and needs to get his strength back.  The doctor came to so see him on Sunday and said, i think we may beable to send you home tomorrow (Monday).  I said to the doctor, i don't want him home until he is stronger, i just don't have the capabilities to help him.  Oh... was my husband mad that i had said that to the doctor.  My husband argued with me all Sunday night and most of Monday morning why he should come home.  While i was driving to the hospital on Monday to see him, i decided that if he is fighting me this much, he is alot stronger than the last time.  When i got there i told him, i will let you come home if you can prove to me that you can walk around without getting dizzy and lightheaded.  So, he started walking around the halls of the hospital and proved to me he could do it.  Yes, he is still weak and shaky, but the last time he wasn't even able to walk to the bathroom.  Now, i am trying to feed him to get his strength back and drink lots of fluids to keep him from getting dehydrated again.  I am much more at peace with this homecoming than i was with the last one.  Last time i just felt deep down he wasn't ready to come home, this time i feel better about it.  

My husband made an interesting comment to me, he said you realize how close i came to dying? I said yes, that is why i wanted you to go back to the hospital, but you were being stubborn and refused to go.  I also said to him, do you think that was fair to me that you would be that stubborn and make me worry like that?  He said no, but I didn't want to go back to the hospital. I said i know, but clearly they can help you better than i can. This time, if i feel like there is something not right, your going back to hospital - no arguments.  He said ok. Finally - i think i may have gotten through my stubborn husbands thick skull.

The doctor showed me the mets in his lungs while we were at the hospital; i think he was expecting me to break down looking at it. I told him, this isn't anyting we didn't already know.  We are hoping that the clinical trial will help.

Well, that's it - hopefully he continues to improve.  He cannot go back on the clinical trial for at least another 3 weeks; they said 4 weeks after major surgery.

Thanks for listening....again

Sandi

CammieS
Posts: 43
Joined: May 2014

I'm so glad that you got through your husband's stubbornness and that he's doing better. I hope things continue to improve and that he's ready for the trial as soon as possible.

LindaK.
Posts: 493
Joined: Apr 2013

Oh, Sandi, I know some of what you're going through.  My husband detests going to the hospital, mostly because every time he went they'd put an NG tube in and I can't blame him there.  I took him to the ER a few Saturdays ago because of the same reason, severe dehydration.  His BP was 71/43 or something crazy like that.  4 different people at the triage area tried getting his BP with about 8 different machines that kept getting an error message and I finally yelled "Can't someone here do it by hand?"  They all looked at me like the crazy lady!  Once they realized how low it was, they sure got him back and connected to fluids very quickly.

We switched to a new cancer center this year and ended up at their hospital instead of the one about a mile from our home.  The care and concern at the new place is totally different than the bad hospital.  No one even mentioned NG tube and while he was there 6 days, he didn't need one.  On the first full day of his stay, we had 4 different visits from oncology.  While he was hospitalized 17 days in January, his oncologist only came in 3 days before he went home after I called the office and told them he was in the hospital with more cancer removed.  It took them another 3 days to show up and their offices are connected to the hospital!  What a difference, he dropped a bomb there without even seeing pathology or talking to the surgeon.  I had a bad feeling about him after that. 

While it stinks being inpatient, it takes the worry off us as caregivers.  I never felt bad leaving him at night at the new hospital, I knew he was in good hands.  I have also told my husband at certain times if something like X happens, I'm calling 911.  Our daughter is a nurse and is on him all the time, too, about calling the doctors, going in, etc.  I think it's just them getting mad at not having control over things.

I'm hoping he's feeling better every day and can get started in the clinical trial.  My husband had a 2 week break from his treatment since he acquired c-diff in the hospital so we're going away for 6 days since he's feeling pretty good.

Hang in there Sandi

Linda

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

It's so hard trying to care for someone who is seriously ill.  I can totally get why your husband doesn't want to be in the hospital, but as awful as it is, some times it's just the right place to be.

Try to take care of yourself as best you can.  Do you have someone who can come in on occasion and give you a little break?

fatbob2010's picture
fatbob2010
Posts: 467
Joined: May 2012

Sandi,

Please keep in mind that if you are not healthy then it will be that much harder to be a caregiver.  

Even small breaks can be a life saver.  

Do you have a hobby? If so try to keep up with it.

Being a caregiver is very important and often difficult...from one who has a caregiver...I can atest to the value you provide.

Blessing and comfort,

Art

lp1964's picture
lp1964
Posts: 1240
Joined: Jun 2013

I'm glad you guys are doing a little better. The hardest thing for a man is to realize that he can not take care of things and his family. This literary sucks the life force out of us. They took out half of my stomach muscle so I am not supposed to lift heavy stuff and this drives me crazy especially when we were moving. Being on disability makes me so anxious, I want to work, I want to be important.

At the same time we have to listen to our wife, because you guys are so much more instinctive and if hate to admit that most of the time you are right.

I wish you all the best.

Laz

janderson1964
Posts: 2215
Joined: Oct 2011

Very well said Laz. I am still in great shape however my wife doesn't want me to do any physical work around the house any more. She was going to have her brother who never did any physical work come over and run my rototiller in the garden this spring. I told her he couldn't handle it. I came home early from work one day and tilled the garden while my wife was still at work. She wasn't too upset about it but it sure made me feel better about myself.

In fact I have been on a chemo break to do radiation but I am supposed to start Xeloda only today and I am dreading it even though the side effects are so mild. I have been feeling absolutely perfect for the past week.

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Jandeson.

 

Xeloda didn't keep me from doing my normal routine and working Hope for same results.   Listen to the wife. :) 

 

I told my husband who had a mild stroke a couple months ago "the best thing you could do for me is take care of yourself.  That is one thing less for me to think about and have to do. I don't think I can take care of me and you."   Meaning, eat lunch at work, drink water, cut the sugar, stop smoking, don't work too many hours and exercise.   He wants to take care of me, when he is worst off then I am, well almost. :) 

thxmiker's picture
thxmiker
Posts: 1282
Joined: Oct 2010

We are glad that he is at home!

 

Pain management is an on going battle at our house.  I never took aspirin and now I have to take pain meds.  I do not take many paiin meds now, but it is easy to get reliant on them.  Ice packs, anti inflamatory meds helped me a lot.  Exercise also helped me a lot.  Get out and walk.  He is not on  a stop watch and to the mail box and back is enough to start.  The more I moved the better I felt.  No matter how bad I felt, I always felt better after walking around the block. I srtarted with walking around the block and got to 2 plus miles in a couple of weeks. 

 

We are sending our thoughts and prayers for healing and support!

 

Best Always,  mike

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

is your husband doing a lot better now?

Winter Marie

Sandi1's picture
Sandi1
Posts: 278
Joined: Aug 2008

He is doing a bit better. The doctor had called me at 7am last Friday and told me i needed to take him back to ER - his coumadin level was dangerously high.  They gave him 2 units of Plasma and Fluids and we were home by 11:30 at night.  So other than that, he seems to be doing a bit better.  I finally got the incisions from his chest tube surgery to close and somewhat heal, he is just dealing with pain from that. He sleeps alot and has trouble eating, when he is having a good day i try to feed him as much as he will eat to get his strength back.  He tries to go downstairs during the day and we sit outside when it's nice.  His legs and arms are very shaky and he is worried about that - i tell him, honey you haven't walked much in the last couple of weeks, we need to build your muscles back up, that is why you are shaky.  I got him some Ensure to help him gain weight and build muscle, and luckily he doesn't mind it, so he drinks it.

So, now it's just a waiting game.

Thank you for your concern

Sandi

 

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Sandi, hope you get nothing but good results. Take care. 

UncleBuddy
Posts: 1019
Joined: Aug 2013

My brother got mad at me, too, when I told the doctor that I had thought he wasn't ready to go home because dad wasn't able to handle all his needs. He is a very easy going guy, but was so annoyed because he was sick of hospitals. You do what you think is in his and your best interest. 

As people said above, please take care of yourself. I was getting run down taking care of my brother and dad. I had to take a step back and hire a nurse for him and someone to go in there to clean. He has had so many issues that a nurse became a necessity. He doesn't tell us when he is having difficulties because he is intellectually disable. The nurse goes in and monitors many things, this makes me feel so much better. I am still very involved, but not to the extent that I was beofre. I was losing sleep and getting sick. I feel a lot better now. We are moving dad and my brother to an apartment closer to us so I don't have to travel so far to help and he's closer to his doctors. The move, I have to admit, is giving me anxiety because there is so much to do. My one sister is going to help a little bit, but not to the extent I need. Sometimes families aren't the best support system.

Do you have family or friends who can give you a break? You need to take care of YOU! Make sure you find some time for yourself.

Hugs!

Lin

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

It sounds like you are doing things right for him :).

I think you're exactly right in the shakiness, needs to build muscles back up, keep getting out of bed and walking as much as can (but before exhaustion sets in) is the only way back and I'm thinking the Ensure is helping, I'm actually going to go to the store today and get myself some (after I stop by onc's office and pick up some of those $2.00 off coupons) before my surgery Thursday.

Check with your oncologist office as well for Endure or Boost coupons, most oncologists offices are visited by those companies and coupons dropped off by them.

As for eating, my appetite has been off for several months if it hadn't been for my medical marijuana I probably would be so much weaker and thinner, as it is I've lost a lot of weight.  If you have that available for his appetite (and it helps with pain as well) it would be great.

I hope you don't have Ny more cumodin incidents.

Winter Marie

Sandi1's picture
Sandi1
Posts: 278
Joined: Aug 2008

I hope i don't have any more cumadin incidents.  His eating problems extend from a problem he is having with his stomach.  We need to find a new gastroenterologist.  they have done all sorts of tests and endoscopies and cannot find anything wrong with his stomach and yet he still can't eat much and throws up if he eats to fast.  the only thing they found was he had gastritis; which he had before when he was doing chemo.  I am so exhausted and tired of dealing with doctors and watching my husband suffering. i am at the end of my rope.  We have family that say you call we will come, well i call and they all suddenly have other things to do.  No one ever just calls me up and says, he we are going to come for a visit to give you a break.  I would have his mother come and stay with us, but she is 78 and i don't want to put her through this watching her son suffering. I know she cries everytime she sees him and it breaks my heart; and my husband doesn't want her to have to deal with this either.

Oh well, enough whining for today - its time to get to work.

Sandi

 

UncleBuddy
Posts: 1019
Joined: Aug 2013

My brother was hospitalized several times because his coumadin levels had bounced up and down too much. Have they talked at all about Lovenox shots? My brother did well on that back in 2011, but since dad used to give him the shots and he has dementia now, they wouldn't let him do it anymore. My brother is intellectually disabled and wasn't able to do it to himself. He tried, but he kept messing up the dose. They had to put him on Xarelto and doesn't have to have all the blood tests. it's not the best option because it doesn't have a reveral anecdote. Lovenox is a much better option. Anyway, why don't you ask about lovenox? Maybe he'll do better on that.

Whine away, that's why we're here, to support one another.

Do they have him on anything like famotidine or prevacid?

I'm still learning, but there are many people on here who could advise you better on some suggested medicine options for your husband.

Good luck.

Lin

Helen321's picture
Helen321
Posts: 1409
Joined: May 2012

I was a little surprised when reading that they didn't give him a blood transfusion. That's what my doctor told me was the best course of action after surgery with low potassium and magnesium. Also I was instr

Ucted to drink gatorade because of the high risk of dehydration although I've switched to coconut water. i'm sure they have a reason. Just glad he's leveling out. Men can be so stubborn about going to the doctor.  I'm eit

H you about making him go. Stress is terrible, you need to stay healthy also.

Sandi1's picture
Sandi1
Posts: 278
Joined: Aug 2008

He did have a blood transfusion on his second trip to the ER - received 2 units and hydration fluids.  They said that he had lost 3/4 of his blood volume and he was severly dehydrated and his kidneys were shutting down.  That part has been resolved and we are on the right track with that now. it just all the other crap that is going on.

Sandi

 

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