Another Spanner in the Works!!

[Jane]

I just wanted to sound off for a bit. If I bore you, just go onto the next thread!!!

As you know I am due to have surgery within the next 2 months. It is difficult waiting - I don't need to tell you that, I sometimes I am just so exhausted and have such horrible tightness in my chest, shoulders and neck. However, all in all, I remain fairly upbeat thinking I will be so much better this time next year.

The problem is my husband, Nick. He is a lovely man, but I have always been the one to sort out things in our family. I take care of the household budget and all the usual household chores. He will not cook, period. My son, Joe is an excellent cook and no doubt will help loads and we could always have takeaways occasionally. Plus I intend to do some cooking for the freezer over the next couple of weeks. So no real worry there.

The problem is his health - physical and mental. He had a couple of severe allergic reactions in August and September and has not been in work since 16th August. He has seen a consultant for the allergy and has had treatment, but he is still far from well.
He has no energy or muscle strength, and seems really low in himself - he has no "drive" whatsoever and is very irritable. He has also put on loads of weight. I have voiced my concerns to the GP and I am sure we will eventually get to the bottom of it. He is considering glandular fever, maybe even Cushing's syndrome (the latter at my request).

It is just SO hard, at a time when I need comfort and support, not only not getting any, but moreover having to support him totally. Yes I know that is what marriage is about, but it is such hard work motivating him to have a shave, make a cup of coffee, phone his mother - do ANYTHING that is not slumping on the sofa all day when I am feeling so awful myself. He says he is not overly worried about my operation and says to the GP that he is not depressed.

My feelings over the past 2 weeks have ranged from wanting a divorce(seriously) to being so worried about him. At times I get out of the house even though I know I should be resting, just for the sake of my sanity, then I get exhausted and this makes the whole thing worse. Sometimes it feels like I am forever pushing a rock uphill!!

I know I am doing all I can to sort it out with him, I guess I feel a bit (?a lot) resentful, having to do all the supporting when I feel I should be the one being supported and reassured right now. Then I think how selfish I am. I know he is unwell, and I shouldn't feel resentful. But I do.

Thanks for "listening." Any advice or words of wisdom welcome - if you haven't already clicked on the next thread!!

 

[Gnusgal]

I want you to know, I did not click to the next thread and read every word and worry. I understand completely! I wish I had words of advice. Unfortunately, I feel that anything I say would be unhelpful. I know that a lot of times, with me, I've vented to people just to get it out and any suggestions that come my way I reject right away no matter how good they are. I hope that venting to us has helped you at least a little. Have you tried talking to your husband about your feelings? Maybe he's unaware of how he is treating you??? I hope he gets to feeling better and can start giving you the support you need.

 

[fdegranville]

COULD IT BE?

COULD IT BE?

clincal depression? Or, sometimes people just shut down, to avoid dealing with the fear they have. How has he dealt with your medical condition in the past? I'm sure there are many people here who have dealt with this type of situation

I wish you all the best with surgery and recovery!
fdeg

 

[hensylee]

Dear Jane - I am a bad candidate for advice on this one - I divorced after 30 yrs of marriage and find the single life much to my liking. First, tho, I do not advocate divorce, especially if you have been married for a very long time. It becomes such a mess, so don't think you want to do that one. You are sick, your husband is sick - that sort of leaves each of you to take care of your OWN self, doesn't it? I am sorry, but if there is someone around who just refuses to take charge of him/herself, then that's just too bad. Have to leave them alone and to their own devices because I no longer can care for somebody else, when I am not well myself. I can suggest but if they don't do or don't listen, then 'ain't my problem' after that. Even with my brother, who is in assisted living and has parkinson's disease, I spend lots of time with him, but if he wants to do or not do what he needs to, I am not going to hurt myself by trying to make him. His problem, not mine - and, Jane, he, too is sick (like me) and like the two of you. I haven't the strength, like you, to do it anymore - and won't. Don't know if this helps any, but it's my say. Love to you and thinking of you a lot. Prayers and God bless

 

[mamsram]

jane--- I don't like to give advice because I don't feel qualified or knowledgable enough. however I would like to share my thoughts after reading your letter twice.
your first paragraph contained a positve statement that I have said to myself many times over the years. That is a good outlook.
my next thought was that your spouse is definately depresssed. whether he has physical or mental problems or both is a burden that should not be carried by you. even though you are a strong person, even you can reach your limit.--I would try to get others to carry that burden. you are not selfish (I see quite the contrary)
if you break under the load, then you will not be able to help, even a little bit. accept the fact that it is impossible for you to do all, and give it up, because it is,in fact, impossible.
I wish you could find a nearby place to be alone with your thoughts and escape the world for brief period of time. that would recharge your system some. If I were near you I would take you to a quiet place for coffee (in your case probably tea) and silent company.
I may not offer you much help, but I will listen and care.
God be with you

 

[Ron K]

Jane,

I'd like to offer a guy's opinion. We sometimes see things a little differently and occassionally we are even right.

Just because your husband told the GP that he was not depressed does not mean that he's not depressed. In fact, I think it would be a little unusual if he wasn't depressed. He has some kind of physical problem that has him feeling very weak and unable to work for the past 5 months, the doctors haven't been able to diagnose the problem or do anything to help it, and he has a wife who is going to have major surgery in a couple of months. God only knows what else he has on his mind.

It's not clear how much is physical and how much is mental/emotional, but I think a visit to a specialist might be in order. I'm not familiar with the mental health delivery system in your country, but there must be some access to mental health clinics.

Also, I would think that you personally would benefit greatly by talking with a trained social worker regarding all that you are going through. This is a particularly difficult time for you and all these other problems are just tearing you apart. This really should be a time for yourself, a time to concentrate on the up-coming surgery, and a time to worry about just you.

Lastly, I think that you should not think about doing anything too drastic in the near future. I'm sure you will make it through this, one way or another, and there will be time to work on your marriage down the raod. For the time being, just explain to your husband that you know he needs a lot, but you just aren't able to provide it now. Tell him that you would gladly do whatever you could, if you could, but right now you are needy too and perhaps he could be doing more to help you.

If you are religous, I'm sure you could get some help from your local pastor or priest or members of the congregation. You need to reach out a little. You'll be amazed how willing some people will be to assist you.

Please keep us posted on how things are going.

Ron K

 

[Nancy]

Oh Jane-

You are going through such a difficult time. I hope you don't mind my asking a little bit about your husband's allergic reaction, and the nature of it. The reason I'm asking is that my husband suffered a MEGA reaction to an antibiotic used during one of his surgeries. It took everyone by surprise because he had had that antibiotic before several times with absolutely no problems, and had no known drug allergies. It was serum sickness which is a Type III sensitivity reaction and he had a very severe case, putting him in the Intensive Care Unit for about 10 days. I felt that he came close to losing it the first night he was in the hospital. It hit every joint in his body with extreme pain and made all his extremities stiff and useless. It also caused havoc with his internal organs. He couldn't move his fingers or wrists and couldn't walk. This developed swiftly over a 24 hour period. It took him months and months to get over and he had to have physical therapy. Cortisone helped him tremendously and he wasn't on it too long. So I know just how devastating allergic reactions can be. My husband is back to his old self now, so there is hope for your husband's full recovery.

I am so sorry that your husband still seems to be suffering from the aftereffects of his allergic reaction. I can tell you that it is possible. He must be feeling very badly that both of you have health problems at the same time. If he had some depression I wouldn't be surprised. We all know how men hate to admit that they're felling badly.

I agree with what all have said before me, you have been given some loving and excellent advice. This is not the time in your life that you should attempt any difficult transitions. Your main concentration is getting through this time in life in better health. I think you will have to sort of triage your life. Your own resources will be limited, so you cannot do everything you would want to do. Enlist the help of your wonderful son. Lean on him hard if you have to. He's young and he'll be able to take it. My guess is that he'll be a wonderful help. Our children grow and mature when faced with some pretty tough problems, and it helps prepare them for their own life experiences. For you to allow yourself to be vulnerable at this point in your life is a good thing. Please do give yourself permission to do that.

I think you have to sit down with your husband and tell him lovingly how poorly you are feeling and that you wish that things were different, but they aren't. And that you are going to do everything in your power to get through your surgery, so that you can get your health back and will be more like your old self again. Maybe you could make a pact with him that he tries also to get his health back.

You both have a little bumpy road ahead. But you will get through and you will get better. I think your husband will also.

Take care, dear Jane and let us know how everything is going.

 

[Rain]

I don't have any words of wisdom.

I don't have any words of wisdom.

Jane,

I just want to let you know that I did read your post all the way through and I understand. I felt pretty alone when I was facing the whole heart surgery thing too. The only way I got through it was by putting one foot in front of the other until I was ?on the other side?. Not that anyone was sick or depressed... different reasons. Anyway... that?s when I found vr.com. I needed someone to talk to about my fears and concerns. I hope we can be here for you.

I think the best thing to do would be to tell him what you?ve just told us, but I also know that that is almost impossible with some men. So what ever happens, know that we are here for you.

Rain

 

[Ross]

I think the best thing to do would be to tell him what you?ve just told us, but I also know that that is almost impossible with some men.

Yeah, you can't tell me anything. I'm male and ........ J/K

I fully understand your situation and it's not the first. If you've done all you can do, maybe the best course is to get a Social Worker or Marriage Counselor involved. Of course, your husband is going to have to participate, which I gather will be difficult if not impossible.

I really wish I could give you sound advice, but I'm a male and......

 

[Jane]

You are all so kind.

You are all so kind.

I was so moved by all your replies. I have received such thoughtful advice from slightly different angles that I need to print it out and take away to read over several times. I will let you know of any progress.

Nancy, Nick woke at 2.30 am on 30 August with his hands itching. Before long his bottom lip swelled up, his hands - palms and backs, and he had a red rash all over. I gave him a zirteck - the only antihistamine we had in the house and after speaking with the on-call doctor, an ambulance was called. He was given adrenaline in the ambulance, and the hydrocortisone and piriton in A and E. We got back home at 7.45am on the Friday morning.

On the following Monday he had another reaction - this time top lip, big weals on his arms and trunk - I can't remember if his hands swelled up that time. I took him to A and E again. This time he was just given piriton and discharged with a supply of the same. He was also shown how to use and given an epipen in case the inside of his mouth ever swelled up (it hasn't so far, and he has had no trouble with his breathing).

He has had a couple of further smaller reactions, and on one occasion a larger one when his hands swelled up again. The family doctor just kept him in the surgery for observation for an hour and a half. Since then he has been told by the allergy consultant to take a zirteck(certirazine - not sure of the spelling) twice a day. This seems to be keeping the allergy at bay. The consultant thought it was induced by voltarol - a nsaid that he took for back pain - but wasn't 100% sure. Like your husband, Nancy, he had taken this drug many times before with gastric irritation as the only symptom.

Today he seems very low. We did not get to bed on Saturday night as we were in A and E, this time with his father who had fallen and cracked his head open. I went to bed for most of Sunday and got an early night. I am not too bad. Nick sat and dozed in the chair all day Sunday and is now complaining of aches and pains again. He took a pain killer when I advised him to, and later said he felt a bit better.

I have "escaped" to the public library to see if I had any messages.... Thank you so much, everyone. At least now I don't feel a total shrew for not always feeling patient with him!!

 

[Jean]

Jane,

Please do not feel bad using us to listen to you when there is no one else. We will be there to at least listen. I wish I could come over and bring you some tea and scones and just sit and listen for a while.

Maybe you can tell your husband how you wish you could be there for him but that right now you are vulnerable and can't offer much. Just hug and be there for each other in what ever way you can.

Good luck

 

[Nancy]

Hi Jane-

I appreciate your telling me about your husband's reaction. Joe's started out with hives too. Fortunately the infectious disease doctor was able to backtrack and discover just what the cause of the reaction was. It doesn't sound like they have been able to find the exact cause for your husband, otherwise he would be able to prevent it. So I'm hoping that your husband will be his own best friend and pursue it with the docs. You make sure to tell him that you know someone else who had a severe allergy come up and bite him on the neck when he wasn't expecting it. And tell him for me to be tough and make the doctors find the cause.

Here's hoping that things work out for a brighter future.

Take care of yourself, Jane.

 

[EVELYN]

Hi Jane....I, too, read your post completely, and the first thing that came into my little brain was DEPRESSION.

I have a feeling that there are two things at work here. First is his own health, he's scared. Secondly is your health, he's probably TERRIFIED, especially since you are the caregiver and the one who keeps the homefires burning, so to speak. I do truly believe some men just withdraw and try to think nothing is happening---they're not nurturers by nature, they think they're supposed to be strong and protectors. When something happens either to them or you or in your case both of you, they have much difficulty dealing with it.

If you have a social worker or psychologist you or he or both can talk to , please go ahead and do so. Sometimes it's just worth listening to what an impartial third party has to say. If he's the macho type and won't go, YOU go and let them know where you're at and what you're feeling. I definitely feel he needs to know where you're coming from and that you need the support and reassurance now....he is not in a life threatening situation, especially if he has the epipen and knows how to use it. Get his rear end out to work, too!! Sitting home and feeling sorry for yourself only esacerbates the problem. He's going to have to take time off for you anyway, so he can have time off later if he has it.

Good luck.....and please keep us all posted.

Evelyn

 

[Nancy]

Jane-

If his mood doesn't lift shortly, there's always Prozac, Paxil or Zoloft. They really do help with depression. They're some of the most opoular drugs in the world, so we know that lots of people are taking them. Have him speak to his doc about that.

 

[John Cochran]

Jane,
First, I am sending you a giant hug that includes all my best wishes for you and your family during this difficult time. The one thing you mentioned about your husband that caused me the most concern is that he has gained lots of weight very recently. Rapid weight gain is often associated with glandular problems, but the additional weight alone poses an additional health concern. Has your husband been seen by an endocrinologist? If not, that would be something to consider, as his multiple problems sound like more than a GP can accurately diagnose.

One of the hardest things in medicine is when a patient presents with multiple inter-related symptoms, but with possible non-related multiple causes. It sounds like your husband is depressed, but with all sorts of other possible interactions in behavior caused by physical problems. Please do not judge him too harshly at this time.

In addition to getting the best specialists to see your husband as possible, I agree with others that have suggested some professional counseling at this time. Your entire family is affected by the health issues of both of you, and some family counseling would be good. It will not fix the problems, but may help you all cope better on a day-to-day basis.

My heart goes out to you, Jane, in this difficult time. I do know that once you are past your surgery with a few weeks of recovery, things will get better.

All my best,
John

 

[Jane]

Any words of comfort for Joe??

Any words of comfort for Joe??

Firstly, just to let you know how much you are all helping me. Last night was particulary grim and I read the print out of all your replies and felt much better.

Nick appears to have some sort of virus at the moment as well as all the other stuff, so I had to take him to the Doc's this morning. He (doc) couldn't do much apart from giving him stronger painkillers for the aches and pains. He feels it is probably NOT glandular fever, however, I did ask his usual GP last week whether he should see an endocrinologist. He said he would certainly consider it once he has ruled out glandular fever with the blood test which he will have tomorrow.

I have a little favour to ask and I don't know if you will be able to help me on this. Joe (our son of 17 years) got extremely upset last night, partly because Nick had been so down (on things in general and him in particular), but mainly because he is worried sick about my operation. I am going to down load some basic information for him, but he also asked if I could get accounts from other family members (especially teenagers) of how they coped with a parent's vr, also what to expect.

If any family members could post some short words of encouragement for him, I am sure it would help him as much as you are all helping me.

If this is not possible, I will understand: I just thought it was worth an ask!!!

 

[hensylee]

Jane, my children were grown (two of them were in Europe during my surgery but they were notified that all was well and went on with their trip). My older son, who is sooo close to his mom, was with me and it was very hard for him, emotionally, but he stood by my side and cried right through it.

You will find so many of us who will come in and talk with your young Joe so that he knows he is not alone. We even have some young valve replacement patients who will probably add their thoughts. Your little one will have much support and maybe a thread can be started JUST FOR HIM alone. You could print out and take home for him.

OK now somebody start it..............................

 

[John Cochran]

Jane,
I have been on both sides of this equation. My son had valve surgery last December. I'd certainly be happy to talk to Joe about what it's like when a family member goes through this. If he has any questions or special concerns, he can e-mail me direct if he is uncomfortable with posting. We also have a number of active members here who are spouses of patients who can help with their perspectives.

Thinking of you,
--John
[email protected]

 

[Rain]

I think I should have explained it to my kids a little more...

I think I should have explained it to my kids a little more...

Jane,

My kids were 7, 17, & 19 when I had the surgery. I didn?t talk to them a lot about the surgery. They knew I was going to have it, but I acted like it was no big deal. I thought everyone was fine with it.

I was a 7 hour drive from home. Every time I called home my daughter (the 7 year old) would cry. I think she was mostly lonesome for me, but also afraid of the unknown. (When I got home she would not get off my lap for weeks .... OUCHIE!!) My 17 year old son was home with Grandma watching her. He acted like everything was cool, but asked a zillion questions about what they were doing to me and why. Although I thought he took it the best... once I was home HE is the one who would take the mop out of my hand or put the clothes in the dryer for me, etc. Or ask if I was okay when I felt like crying about my INR. To this day he has more concern (or shows it) for my well being than ever before. My oldest son, a freshman at CSU was only about an hours drive from Denver. He came over to see me everyday. He was there when I came out of surgery and I will never forget that moment. We shared emotions during my stay in the hospital that helped make us as close as any Mom and son can be. Our communication had been a little stressed at the time... he?d been driving over Wolf Creek Pass all winter to see a girl in Durango. Long story... anyway.. during those days in the hospital we had a complete turn around.

Soooo... I didn?t just skate through the surgery without it affecting my kids like I thought I could. I now know that is totally impossible.

I think I should have explained it to my kids a little more, but there?s a fine line about how much you should tell them. Don?t scare them with details, but be honest. Tell him you will be fine. The odds are in your favor.

I think you?ll be very impressed with how well he deals with it the situation.

Take care,
Rain
Rain

 

[Nancy]

Hi Joe-

I like that name, it's my husband's also.

First of all, I want to say Hello to you from valvereplacement.com. If you're computer savvy, maybe you could log on here and post a few things. We'd love to meet you. We're just all a bunch of people who have had heart valve surgery or have someone close to us who've had it.

The first thing to remember is that this is lifesaving surgery. It will give your mom back her life and she'll have a much better quality of life after she heals a little. The success rate is extremely high in your mom's favor. She'll do just fine.

The second thing to know is that the surgeons who do this are among the most highly trained. They are serious about what they do, and anything wrong with your mom's heart, they can take care of. They're in and out of people's hearts many times a week. It sounds like a scary operation, but to the heart surgeons, it's just another day in the OR.

My husband has had 3 heart valve surgeries. So I can tell you what I've learned from being there during the operation and afterwards.

Probably, the surgery will take about 6 hours, give or take. She'll spend some time in the recovery room, and then will be taken to the Intensive Care Unit (what we call it here). She'll be there for a day or two, depending on how she responds. Don't be alarmed at how your mom will look after surgery. She'll be looking pretty badly, maybe even very pale. She'll be "out of it" because she'll be on pain medicine. She may be asleep for quite a long time after surgery. She might thrash around a little, and sometimes they tie the patient's hands down so they don't pull out the tubes and drains. It's all normal and much of it is because of the meds and the remnants of the anesthesia.

She'll have all kinds of tubes and drains coming out of her body, hooked up to all kinds of monitors and computers. There will be lots of noises and alarms going off. You won't have to worry about them, the nurses know what they all mean. They are all there to help different body functions. She'll probably be on the ventilator which will do her breathing for her. She'll be carefully monitored for all the time she is in the Intensive Care Unit. Usually there is a one to one ratio with the nurse. You might not be able to be there all the time with your mom at first. Some hospitals restrict the family to a few minutes every hour.

After this initial period, your mom will be transferred to a more normal room with extra nursing care. She might be up in a chair within a day or two, and will be walking soon after this. You won't believe how soon a patient can get up and walk after the surgery. She'll be home in about a week, some come home sooner. Each person is different.

She'll need intensive help during the first two weeks home. She'll be sore, very tired will need lots of help doing simple things. There will be some medication adjustments during this period of time, and they will all have an effect on your mom. After the two weeks, she'll start to feel more like doing little things for herself, and will start to feel better. Her appetite will not be too good during this time.

After about 4-6 weeks, your mom will be doing lots of things. Some people can return to work, and some can drive at about
6 weeks.

Your mom will be restricted in what she'll be able to lift for many weeks after surgery to give her sternum a chance to heal back together.

After 6 months, mom will be feeling very well indeed.

Joe, I know you'll be a big help to your mom. She really needs some strong shoulders to lean on right now and I think you're the kind of guy who can help a lot. When you think about life and how long it is, this brief period of time will pass quickly. You'll have you mom back, and she'll be feeling so much better.

I wish you all the best.

I hope you can learn how to access this site. We'll be relying on you to log on and tell us how things went after surgery.
We're here for you, too.