libbylaz, that's a really good reminder about our loved ones because it's very easy for us to forget how much our loved ones go through. They feel so helpless and I think that manifests itself in different ways, like either appearing non comforting, to over compensating, to arguments to resentments to frustration, etc. Lots of different emotions are involved from all sides. My husband and I went through a rough time the months during my recovery; two contentious, strong personalities going through a trauma together is not a pleasure cruise for anyone, ha! But ultimately, once things died down a bit and we were both back in our right minds, we did a lot of opening up to each other about the the PE event and ultimately it made us very resolved in our commitment to each other.

My advice to you as a loved one of someone who suffered a PE is to remember to take care of yourself in all of this. You don't want to run yourself ragged in the process of trying to help your husband because that ends up not helping anyone. Also be patient in his recovery. It was very hard for my husband to wrap his mind around why after a week out of the hospital I was still so fatigued. I was not myself for a few months. And then slowly things started to return to normal.

I agree; I'd definitely take cues from your husband as far as what he needs. Sometimes, we just wanted someone to listen to us and not necessarily do anything. I don't know if your husband is like this, but when I had my PE I kind of shut down a bit. I do the same thing when I'm ill. I just want to isolate as a coping mechanism. So if he needs to do that for a little bit, it doesn't mean he's really shutting you out or changing. He's just trying to work it all out for himself so he can deal with things.

rmb said:
" remember to take care of yourself in all of this. You don't want to run yourself ragged in the process of trying to help your husband because that ends up not helping anyone."

Good advice!

You have all be the BEST. I cannot thank all of you enough for all of your help. It really has helped so much. He is doing better. All the advice re antibiotics was helpful because his levels have changed and and it was not as scary knowing what to expect so thank you very much for the comments. They were very helpful. His UIT is better. His mood fluctuates a lot but I think it is more good than bad. He is bored wants to go back to work but I have told him to hold his horses! Mostly I am leaving him "alone" to get on with the things he wants to do. I also appreciate the comments about not letting him do too much. I will keep that in mind. I let him go alone today to the INR clinic. I think it is important that he get back a bit of control! About the CPAP. He was using it for 10 years before his cardiac arrest. He is trying to start using it again and he keeps it on a few minutes only. I know how important using it is to his health. I have nagged about it. He has an appointment tomorrow with the sleep clinic. He has an appointment with the respiratory specialist on July 5th and an appointment with the cardiologist on Aug 13th. It is all a little scary. I am praying that he has made it through without heart damage or lung damage. Whatever it is at least he is alive and we will deal with it. Thanks again to everyone that has taken their precious time to support us. It is greatly appreciated. My heart goes out to the new members on here. I will try to reach out to them. It is quite a journey. Take care all.

Hi All, I just wanted to update you and say that he seems to have had about 6 or 7 ok days in a row. This is unbelievable to me. It seems he has come such a long way. Obviously I keep imagining that I have a DVT and today I thought I was heaving a heart attack. I took some antacids and drank a cup of milk and calmed myself down. It is probably guilt that it happened to him and not to me. Honestly I wanted to change places with him. I keep feeling like I will be punished again and this time something will happen to me. I know in time I will sort out my feelings. His UTI is better. The only mjajor complaint is that he is still not sleeping. Some days I can tell he is very cranky and he still does not want to use his CPAP for very long. Obviously I am not complaining because his recovery has been miraculous. But I am still walking on eggshells. Hope everyone reading this is having a good day and hope everyone is feeling well. xxx

I'm so glad that he's having some "good" days! That must be such a nice change for you. Be forewarned that "good" days can switch off with "bad" days pretty quickly in PE recovery. It is easy to push oneself too hard and then have to spend a couple days just laying around the house to recover.

The sleep thing will come with time, but the insomnia might be caused by the underlying emotions of this all. If you two are up for it, it might be time to seek out a therapist to help you work through all these emotions. Don't necessarily have to go together ... his sleeplessness and your mini panic-attack are best dealt with before they get to be "habit."

If therapy doesn't work for you, it might be time to find some other coping mechanisms. Meditation, journaling, etc. Obviously, you've both been hit hard by all this.

Hang in there!

Hello All,

The last post was so true. If you overdo it, a good day can turn hard. It is important to take things easy. I have implemented a rating system I use with my husband 1 being worst 10 being best and I ask him daily how he is feeling. 7 has been the best and 4 the worst. 4 was the day we went to A and E. 7 is starting to be the norm and we are only 6 and a half weeks in. I cannot complain at all. Sleeping is still an issue but I think he is making slow progress. I am feeling less anxious too. I have embarked on organising every thing in my house, it is a bit extreme, and I have never been like this. Everyone thinks they are in the wrong house. lol. I think it is my way of having a little bit of control. His memory is still a bit foggy and he can suddenly get grouchy when he thinks about money, or not working or "reality". I have told him we are not even considering work until Sept. He is a self employed consultant so he can chill out. My thoughts are with everyone out there. I hope you are all feeling good. I LOVE THIS BOARD and everyone on here so thanks again to you all for the contributions and humanity. xxxx

Ha! That's funny! I totally organize too when I feel like I'm losing control of things. You can tell when I've not been doing well when I haul out the label maker and start putting things in marked boxes!

I'm glad you guys are starting to relax a little bit. It is a slow process, but you already sound like you're in a better place than you were when you joined the boards.

Thanks for the update!

Hi Everyone. I wish I was able to be more supportive to others. I just don't have much to give. The well seems empty today. He is doing much better but I am so very worried. I am not going to lie, it is apparent that he has probably sustained some mild brain damage due to the cardiac arrest. I feel he will be able to work again and in the scheme of things its ok because he is alive. He has fallen down two or three times which is hard to see. He is losing a lot of hair. He sleeps too much. He has a UTI that he cannot shake is on third course of antibiotics and is booked in for a scan. He got this in the hospital from the catheter. These things are no big deal but altogether it seems a lot today. I have been crying most of the morning. I think I am tired. He also says things he would never say before and his personality has changed. I think it is due to lack of oxygen to the brain. As I said we have the best possible outcome given the situation so I remain grateful. I am just having a really crap day. Another issue his INR levels are all over the shop due to the antibiotics and that scares me too. Not to mention I always think I am going to have a clot too.... Anyway to anyone out there reading, God bless you all. And you are all in my prayers. xxx

Libby, you've got a lot on your shoulders right now, so don't feel bad that you're having a hard time. And don't worry about not feeling up to supporting others right now, you may be able to do that later, but let us here do our best to support you, and if you have any close friends in your regular life you can talk to or even ask help of, please don't be shy about doing it. It's so much harder to ask for help than it is to give it, but there are times when we need to recognize that we just can't carry it all, all the time.

It's a very confusing time all around. Just in terms of feeling the weight and stress of the situation and realizing that some things have likely changed forever, yet feeling the kind of responsibility to be "happy" because at least this is still the better outcome than the alternative. Try to not feel like you have to feel grateful and happy all the time just because the reality is you could have lost your husband. I did go through times when I felt guilty that I felt sad or angry, because I felt like I should just be happy to still be alive. I hope it's a given that we're going to choose life if we had a choice, or in your case choose to have your husband here still as opposed to having lost him. But that fact doesn't negate the difficulties you're facing right now, so let yourself cry and be upset if you need that. I literally couldn't cry for a couple of years after I got PE, partly because I felt like it'd be ungrateful to feel upset. And it really locked me up emotionally, so please just let it out when you need to, like you're doing. Crying is miserable, but it's also helpful, as long as we don't let ourselves wallow in it. You don't seem like a wallower to me, so I think you'll be fine, but its okay to allow yourself that release from time to time.

As to some of the things your husband is dealing with, I know you know this but like with the UTI, it's going to get better, just a matter of figuring out which antibiotic and how much to get him over it. They *may* have given him initially a less aggressive one, if they thought the infection wasn't too bad and it would have less effect on his INR. I've had similar things happen. Also, I lost most of my hair after my PE. I looked kind of like a little girl's beloved doll she's carried around forever that had just little tufts of hair left. It is a kind of trauma even going through the hair loss, but it also does come back. Later on I got the joy of having little short hairs stick out all ove my head, then for months I had weird little "bangs" in the front that were about an inch long. So yeah, I looked pretty goofy for awhile after.

Regarding the brain damage. Try to be patient with the situation there, but do seek help from the doctors as well. Don't give up hope that things will get better even with that. Though the circumstances were different, my father suffered a traumatic brain injury eight years ago and it affected a lot of things for him including his decision-making abilities and personality. As a family we put up with a lot of strange and difficult behavior for over a year before we really dealt with it with the doctors. I had no idea how much the doctors do have at their disposal to help. There are medications that can help as well as some behavioral therapies and things which helped my dad with the day to day stuff. It is a big process, with the doctors figuring out exactly what damage there is, and what to do, and in my dad's case it took awhile to get the medications correct, but things got much, much better with treatment. So, have confidence that even this will eventually improve. Also, don't overlook the fact that he probably is still really not feeling well, which might be making him more short tempered. As he continues getting better physically, some of that might improve on its own too.

I know things will settle down for you eventually. Be sure to do as much as you can to take care of yourself during this too. You sound like you need a break, and I think that was probably true of a lot of our families after our PE's. Again, take time for yourself when you need it, and let your friends know what you need too, both emotionally and practically.

I'm so sorry to hear you are having a tough time.

I know how you feel when you say " He also says things he would never say before and his personality has changed." I experienced this with my father when his liver was going bad. It was the scariest thing I've ever experienced. Luckily this went away after his liver transplant and the toxins in his body went away.

Does he seem changed all of the time or come and go? When it was happening to my father, it would come and go, but I never talked to him about it. I was too scared to acknowledge it. It still bothers me to think about it, and that was 10 years ago. It was such a weird mix of emotion. I wanted to spend more time with him, but the more time I spent with him, the more I witnessed the changes in him. I was scared to death for his life. I was embarrassed for him because he was so well respected in town and if someone didn't know what was going on, they might judge him for his actions. I was also hurt by some things he said. Most of I, I just didn't know how to react and what to say to him when he was like this.

We got very lucky, and the random behavior changes went away with the new liver. His life was saved, but we started a journey of medical issue after medical issue (due to the immune suppressing drugs and other illnesses). It's like we've found a new normal. He can still do some of the things he loves, but our phone conversations are often about what doctor appointments he has that week. I know he gets a little depressed at times too, but somehow he finds a way to keep fighting and overcoming each challenge.

Remember that you are entitled to the mix of emotions and feelings you are going through. What you are describing is very very difficult to deal with. There may be caregiver support groups in your area. Please also keep writing here.

Take Care!

So glad to hear from you Libby, since I've wondered how you were doing.

You guys have been through the wringer and then some. I can imagine he is frustrated because he's not back to where he wants to be and (on some level) is wondering if he ever will me. You're probably in a similar place.

Dealing with antibiotics and an INR can be SO challenging. I had sinus surgery last year and was on a tone of antibiotics before and after it. Plus, they switched every few weeks while we were trying to find the right combo. Took months to get the INR to level out again and it can feel really freaky in the meantime. Hopefully they're hauling out the big guns in terms of antibiotics at this point No point in pussy-footing around when his INR is already wonky. Get the UTI dealt with and gone and that'll be one less thing to worry about.

Definitely keep in close contact with his doc. It's hard to say where he'll be when this all really sorts out ... once the UTI is gone, once his INR is stable, once he's getting a lot of his recovery done with, once he starts to feel a little better and less exhausted all the time ... but the others are right in that there are options out there to help with these things and I hope they'll be able to make good changes for you guys in the future.

Hang in there and don't be afraid to lean on your friends and family and to post here whenever you want. None of us can be supportive all the time and it sounds like you desperately need some warm-fuzzies. You don't have an ounce of energy to give away, so don't be worried if you haven't be able to be on here as a "supporter" ... we don't mind carrying the load while you get this sorted out.

Please keep us posted on how you are all doing and do something nice for yourself today ... you DO deserve it.

Libby---- I don't know what I could say that hasn't been said by the last 3 posters----- except that I add my best wishes for you and your dad.

Venting and crying helped me a lot----- and thankfully at the time I was on a very good forum that helped me. (Not for PE)

It was strange, but crying seemed to give me more strength to go on.

It sounds like you guys ave been through a lot and I am sorry that he had to go through all of it. It is very scary to have a PE and I know that asking questions and learning all you can about them is one of the best things to do. I had a DVTand PE. I had pain in my leg which I thought had to do with my developmental hip dysplasia-my right hip is 30% out of socket. I was also having heaviness in chest but thought it was my asthma. They ran tests and said was clot in leg-I didn' know I had a PE until a couple hours later. I went on warfarin and lovenox. It is hard to be at ease after this happens but you have to learn ways to cope. I recently had another leg clot because I thought I would take myself off warfarin because I didn't like the side effects-I do not recommend this!! I don't know a lot about the PEs affecting the heart but I would say they dissolve like the other ones. Definitely ask your doctor though-asking questions is a must-especially if something is worrying you-there are no stupid questions when it comes to this stuff!!

Hi All, thinking about everyone in this group often, Thankfully, we were able to get out of London during the Olympics. We are in Greece. We found a place to test INR right beside the hotel. He was in range at 2.5 last Monday and we will test again tomorrow. On the 13th he has his first visit with the cardiologist to discuss his incident. Hopefully they will not find damage. He still has the UTI but will have scans on the 14th. I am posting today because he is very grouchy today. I felt like crying. He has always been a serious type but today I felt like he is focusing on all the things he does not have instead of the second chance he was miraculously given. It is so hard after all we have done to save him and keep him safe. Never leaving his side, supporting him and bonding tightly around him as a family unit. I know we are all human and have bad days. He has always been a worrier. We have raised 4 children ( not easy) sent them to private schools all these years and given them so much. the last two ( twins) just graduated from high school and are off to college. The pressures of an expensive lifestyle will get easier for us as they fly the nest. I guess he is feeling like he ought to be working and his insecurities are surfacing. I keep telling him we are fine. Ok we cannot retire yet but we are sustainable for a long while yet. Why does he have to worry so much? I just think to myself, he won the "lottery" on this incident so why in the world is he focusing on the negatives...... Sorry for venting yet again. I vow to be a support on this board when we are in a better place. To all those good people out there that sacrifice their precious time, it is not a waste. It is genuine community service and is so beneficial. This board saved my sanity and I am so grateful for it. I am always thinking of everyone that has suffered from PE and other issues. Sending hugs to you all. Thanks for reading. xxx

Sorry to hear that you're having such a rough time right now Libby! At least you guys got a chance to get out of London and go relax somewhere so you don't have the stress of having five bazillion people invade your town.

But yeah, everyone reacts really differently to having gone through a life-threatening situation. I don't know that I was ever so miserable as he sounds, but I definitely went through a ton of different emotions. Sometimes different from day to day and sometimes different from minute to minute. I know other folks on here have posted about feeling like they *should* be grateful to have survived the PEs, but also feeling just overwhelmed and anxious and miserable ... and then guilty for NOT feeling more thankful. It can be a lot of really conflicting and EXTREME emotions.

It is amazing that you have been able to be as supportive as you have been. It must be an incredibly challenging situation for all of you. Keep your positive attitude about it being so great that he has survived, but also make sure that you are taking some time to yourself and getting a few chances to go out and do things for yourself.

Out of everything you two have done together, this may wind up being one of the hardest. Hang in there!