Second Weddings

NWR: FI is sick (really long)

So as many of you know, FI has a congenital heart condition, and has had 4 open heart surgeries in his lifetime to repair the defects. When we first got together, he was at the peak of his health, he was exercising, living well, happy, healthy, etc. He told me that he was perfectly fine now. His last surgery was when he was 10 years old, and 18 years later he was still doing great.

But as the time has rolled on the past couple of years, he has slowly gone from the healthy happy man that I loved, to barely able to do anything. I knew there was something wrong, he wasn't as active as he used to be when we first got together. He blamed the severe winter for it, and then the severe summer. Okay, fine. But then when it cooled off in the Fall, he didn't get better. In fact, he got worse. He was coming home barely able to move most days. He blamed it on not getting enough sleep. He'd never want to go anywhere because he was always tired. He wasn't very happy much anymore. He started calling out from work for FMLA more and more often. In December, he barely pulled in 20-30 hours the entire month, because he was so sick he could barely move.

6 months ago, we went to see his cardiologist in St. Louis for his checkup. He had an MRI done, as well as two echocardiograms. We were told he was doing alright, his pulmonary valve was leaking a little bit but nothing to be overly concerned about right now. He told us that any pulmonary valve replacement surgery would be years off down the road. Now, we saw his cardiologist last week, and he suggested a cardiac catheterization (minor surgery to run a camera on a catheter in through his vein into his heart, to see what's going on in there) because FI said he was always feeling so poorly. FI told him no, we can't do a cath right now, because he doesn't have the FMLA time accrued from work to cover it. So his cardiologist said okay, let's just have you do another echocardiogram, and you can call back in a week to get the results.

This afternoon, FI got a phone call from his cardiologist's nurse. Apparently, he has major abnormalities going on, and they are insisting that he get a cardiac cath done ASAP so they can determine whether he is a candidate for an experimental heart valve replacement that can be implemented in a cath lab, or if he'll need open heart surgery to completely replace the valve now.

These are my worst fears coming true. FI is trying to convince me that it's okay, he's had so many surgeries and caths and tests that it's not a big deal, and the chances of complications from surgery are really low nowadays. But that doesn't make me feel better. We live 4 hours away from the hospital he would need these procedures done in. A cardiac cath will take him a week or two to recover from. An open heart valve replacement surgery would take him months to recover from. I know we couldn't afford for me to miss that many months of work, and I won't have worked at Walgreens long enough to qualify for FMLA. His short term disability coverage at work would make it so he'd at least be paid during the time he was out, but I would basically have to drop him off across state, and just leave him there until he's well enough to travel home. I don't know if I can handle that, I'm so scared.

I was scared the other night, thinking that I didn't know if I could handle this, but now I'm being forced to. I knew this was a risk we'd have to deal with when I agreed to marry him, but I didn't expect it to be so soon. I want my wonderful fiance back, the one that I fell in love with when we first started dating, but until he has these procedures done, it won't happen. And there's still a slight chance it won't anyway, depending on how well his heart accepts the valve transplant. I'm just not sure what to do, and I feel so alone... thanks for listening to me. Excuse me, I'm going to go cry for a little while now before FI comes home from work.

Re: NWR: FI is sick (really long)

  • Marrin713Marrin713 member
    5 Love Its Combo Breaker First Comment First Anniversary
    edited December 2011
    Aw......I'm sorry to hear this.  It's scary I know.  I wish you both the best.
  • mybooboosmybooboos member
    First Anniversary First Comment
    edited December 2011
    Oh my...well, first off, long comforting (((HUGS))) for you.  I'm so sorry you and your FI are going through this.  It's always scary dealing with the unknown, and when the unknown is revolving around major surgery, distance and separation, and failing health, the scare factor jumps exponentially.

    I've not been in a similar situation, so I have no experience to pass on to you.  Just know that we're here for you, when you want to vent, cry and just think thoughts through.

    You both are in my prayers...
    Presentation is everything!! Wedding Countdown Ticker
  • fireytigerfireytiger member
    First Anniversary First Comment
    edited December 2011
    I'm sorry to keep dumping on you all with my problems. I've been upset the last week about this, and I've finally lost it this time. We're 3 months away from our wedding and now he may have to have two surgeries this year, and who knows how long he may live after this... The message actually said that he is having cardiac insufficiencies, which as far as I can tell means he has congestive heart failure. His doctor has told him in the past that he would easily live until his 60s at least, but now who knows. If it's just that his valve needs replacing, then he might be fine. If it's congestive heart failure (which as far as I can tell, is what they're talking about)... well, it's a high chance that he'll die in the next 8-12 years. I just don't know what to do anymore. I love him so much and I want to spend our lives together, but I don't want to be a widow in 10 years, y'know? I'm honestly very scared.
  • Sue-n-KevinSue-n-Kevin member
    First Anniversary 5 Love Its First Answer First Comment
    edited December 2011
    I'm sorry you are going through this. You can come here and vent/be scared, we won't tell anyone.

    I'm a lot older than you, as are most of the ladies here. While we probably have not experienced the identical thing you are, we appreciate all the intricacies of life's journey.

    Heart related illnesses, cancer, etc, are all very scary and potentially life threatening. I think this is the deal we make with the devil when we fall in love or have children: you don't know what you are going to get, but go along for the ride anyway because of your love. I don't mean this to sound trite, or to pile onto your problems.

    I think you knew what the possibilities were when you fell in love with this man. The timing couldn't be worse, so close to your wedding, but IMO you need to try to find the strength within your self to be there for him, to whatever extent you can be given the geographical situation, and say prayers or do whatever your religion/faith/belief system says you should be doing.

    In the end none of us knows how long we have with loved ones. Many of us have suffered unspeakable losses, some of which were preceeded by scary situations such as this. But, I'm sure there are also situations where scary health matters did NOT result in shortened life spans, or ongoing medical issues.

    I have a feeling you have it in you to survive this and be the strength he needs. It's times like this that create a bond unlike any you have known. You may need to change your wedding plans, but that is the least of your worries at this moment. Just think how sweet it will feel to marry this man when you both come out on the other side of this trying time, together.

    (((HUGS))), thoughts and prayers your way.
  • edited December 2011
    Firey - I have worked with cardiac patients the majority of my career.  My best advice to you is to go with him to the appointment, and ask the physician and the nurse to explain it to you until you fully understand it.  Write down some questions you have in advance, so that if they are not answered in the explanation, you remember to ask them. 
    Typically - in valvular insufficiency- Congestive Heart Failure (CHF) is caused by the backflow of blood across the valve.  When not all the blood is pumped OUT, it backs up into the body, where is creates swelling.  This swelling makes it harder for the heart muscle to pump blood through the body, creating strain on the heart muscle.  The longer that goes on, the more likely to cause damage.  If he gets the valve repaired (by whatever means the cardiologist thinks will work best) his symptoms should gradually go away as well. 

    I know that the heart is such a scary thing to have problems with.  The good news is that your Fi is young, and otherwise healthy.  The likelihood is that he will do very well with his procedures.  Keep your faith.  If you have questions I can help with, let me know.  ~Donna
  • fireytigerfireytiger member
    First Anniversary First Comment
    edited December 2011
    Thanks everyone for your kind words, thoughts and prayers. I'm feeling a little better today. Well, better in that i'm not beside myself with fear and grief today.

    Right1thistime: That sounds exactly like what's been happening with him. Do you know if he would be able to make it at least 3-4 months without severe damage, if he waits for this? FI is insisting he needs to take care of some things first before he goes, and to be honest we don't even have the money for gas to get over there and back.

    Overall, it just makes me so angry, because I KNEW something was wrong this whole time, but everyone kept shining me on, saying "Worry is interest paid on trouble before it's due." FI kept ignoring me, swearing that it was sleep related, or diet related, or weather related, or stress related, etc. I'm sure those things didn't HELP, but they weren't the culprit. I'm actually more than a little peeved at FI's cardiologist, supposedly he's literally one of the best ones out there (and he specializes in Adults with congenital heart disease, supposedly the best in that field as well). But FI had his MRI and Echos done last summer, and he told us that the leak was minor. It turned out that he didn't tell us the whole story, the *MRI* said that the leak was minor. The Echos, however, showed it was more severe. And now the truth comes out THIS time, 7 months later, when we went back. If we'd known that in the summer, I might have been able to convince FI to make the changes in his lifestyle that NOW he's decided to make (dropping out of the high-stress position at work he's in, cutting out every scrap of extra sodium he eats, etc) when it's already too late and the damage is done. But of course nobody's paying attention to THAT little fact, that I was the one insisting there was more wrong here than they thought... *sigh*
  • edited December 2011
    Firey- I would have no way of telling that.  Sorry. 

    I think your best resource would be a physician who is local and whom you trust.  Does your FI have a PCP?  Can you make an appt to see him/her together to ask a lot of questions, even the ones you just wrote here?  (Did it make a difference that Fi didn't make lifestyle changes for 8 mos because the cardiologist told him the leak was minor?)   I think you need nearby local help from a professional. 

    If you cannot afford to get to the specialist, is there a case management dept with your Fi's health insurance?  Call them to see if there is any funding available for hardship situations like this, so that you do not need to wait to get him the  medical attention he needs. ~Donna
  • fireytigerfireytiger member
    First Anniversary First Comment
    edited December 2011
    Well part of the problem is that he has dual insurance and we've been having trouble with it anyway. He has insurance with our workplace, and then he also has medicare because he's disabled. Unfortunately right now we're having a great deal of trouble with the medicare, he thought he'd paid them in full and called in January to confirm, and they told him that he was fine. Now, we just got a bill saying he owes them over 1,000 dollars NOW or else they'll cancel his coverage. I called and managed to talk them down to like 300 dollars for now, and then they're investigating what's going on with the bills. I'm really worried that at any point they might go "oop, nope, no coverage!" FI is also kinda refusing to do it for at least 3 months (or more, he's hoping for more like 6 months), because he doesn't want to put off the wedding, and because of financial stuff... I just don't know.
  • fireytigerfireytiger member
    First Anniversary First Comment
    edited December 2011
    FI called his cardiologist today, and they gave him more details. Basically they want him to do the cath, and they want to give him this melody valve, which is still semi-experimental, but they can insert it in a cath lab instead of requiring him to go through open heart surgery. He's had lots of experimental work done, he was one of the first children to survive the conditions he had (Tetralogy of Fallot, Double outlet right ventricle, pulmonary valve atresia) in the area. Things they tried out with him that worked, ended up going on to help many more children (and adults) with his conditions. It is just a problem with the valve, nothing else.

    FI is really wanting us to wait until after the wedding to get it taken care of, and I'm thinking we should postpone the wedding for another year. We wouldn't lose out on much, like 300 dollars for one deposit, invitations, and STDs. FI is adamant that he wants us to have the wedding we've been planning (I guess you could say my "pretty princess day"), but he said he would agree to postpone it ONLY if we still got married by a JOP this year. My family would be devastated if I went off and got married in a JOP service but didn't have a "wedding" that they could attend. We toyed with the idea of eloping earlier last year, and my grandma said that was fine, but insisted we still have the wedding later on for everyone to attend, because she said she's not missing this marriage. I'm torn. I would like to push the wedding back, I can see a lot of good reasons to do so, but I want the WEDDING. I don't want another JOP ceremony, and I honestly can't help but feel that getting married now that way, and having a "wedding" later would just be FAKE. It bothers me a lot and I don't know where to go from here.
  • RebeccaB88RebeccaB88 member
    First Anniversary First Comment First Answer 5 Love Its
    edited December 2011
    I think you need to talk to the doctor about the risks of waiting until after the wedding, versus the need to do something now.  If he can have an outpatient procedure and be fine for the wedding, then all the better.  But then, you don't know that the small percentage of problems will or won't be with him. 
  • MikesAngieMikesAngie member
    Name Dropper 5 Love Its Combo Breaker First Comment
    edited December 2011
    Firey - my maternal grandmother was diagnosed with CHF at 43 y/o, she lived until she was 88 y/o.  So a long life can be had as long as one follows the suggestions of their medical team.

    You are in our thoughts please keep us posted.
  • fireytigerfireytiger member
    First Anniversary First Comment
    edited December 2011
    Thanks again everyone. FI just talked to his cardiologist, and apparently he told him that he can wait until October to get these procedures done. At least that means it won't affect the wedding any, but I'm still wondering about it. I mean, yes maybe he CAN wait until October, but SHOULD he wait? But my opinion on it is out the window, because FI has gotten what he wanted (the answer that he can wait) so that's what he's going to do. I guess maybe I should be thankful, it gives me time to get used to the idea and feel better about it.
  • MikesAngieMikesAngie member
    Name Dropper 5 Love Its Combo Breaker First Comment
    edited December 2011
    Firey - I know this is a diffiicult time for you, and as long as his doctors are telling him he can wait you know he will... No one likes being poked and prodded more than they absolutely have to and that includes surgeries... *sigh* I am thinking of you and understand your position... love your man as he is though... because he is afterall the man you fell for.
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