The big "T"

[Gnusgal]

Well, I ended up having an overnight stay at the hospital last night. My cardiologist decided she wanted to get some more tests run and to have an ACHD specialist (who is new to the Dallas area!) come in to see me. She wanted to try and figure out if the problems I have been experiencing (the rhythm problems and the decrease in RV function) can be attributed to medication changes or if they are the natural progression of my heart defects. We are not 100% sure just yet, but the new doc feels that at least some of it is due to the natural progression of my defects.

She then mentioned the dreaded "T" word (transplant). I've always known it's somewhere in my future, but I want it to be FAR into the future if at all possible. Apparently there are no more surgical options for me. We can mess around with medication combinations, but there will be no more surgeries (except pacemaker replacements) until I end up with a transplant. And here's the scariest part... The number she dropped as a possible time frame was as soon as five years! I had kinda been hoping to have another 15-20 years left on my ticker, not 5 . That's only as long as one of my pacemakers lasts. And the other thing that freaks me out is that it means that I'm going to go down hill pretty quickly. I have to at least be able to hold down my teaching job for another two years (or at least finish this year and then move into a library position) so that my DH can finish nursing school. I just hope I don't make myself worse by worrying.

At any rate, right now I'm on a 48-hour holtor monitor to try and catch my heart acting up (since it wouldn't do it in the hospital). Next week I will go in for a stress test with the ACHD doc. My DH and I are trying to absorb all of this new information. The thing is, we KNEW it was coming, but hearing it predicted to be this soon just makes it a bit more real I guess. We're a bit numb.

Thanks all,

 

[Bryan B]

Hi Niki,

Sorry to hear your bad news...that would make anyone numb. I can say however, that I've met several people with heart transplants who were doing quite well in life. My ex-wife worked for COPA (Carolina Organ Procurement Agency), and I was on a bowling league where most of the participants had some type of transplant (myself excluded). I became good friends with one man in particular who had a heart transplant. He was a great bowler and a terrible golfer. I was a great golfer and a terrible bowler. He taught me how to bowl and I taught him how to play golf. I guess my point is that he was very active, and he participated in the transplant games every year in the above mentioned sports. You would never have known that he had a heart transplant unless he told you. I know that hearing those words has to be scary (it scares me just thinking about it), but I hope by sharing my experience with transplant recepients it might take the "edge" off...they were some wonderful people to share my time with!

 

[ericaj]

Niki

Niki

Hi Niki,

I hope that things don't progress as fast as you cardio(s) think and that you atleast get a few more years to try and feel better.. I will say this you are an inspiration for me and I really look up to you -- even though i don't know you
- I am facing v.replacement in the next 10 years which isnt as scary as a transplant but still hard to think about.. Would you ever want to talk sometime?
--Sorry i'm not much help for you, I do hope you find something to cheer you up! -- Erica

 

[Harrybaby666]

OH My God!!!!

OH My God!!!!

Hi Gnusgal,

I am so sorry to hear that kind of news...It seems more and more like you and me are in the same boat, because I just got out of the hospital and I am on an event monitor until Oct 2...It seems as if I have Pulmonary Hypertension, and my valves are starting to get worse, amongst other things...all I know is, you must feel alot like I do by running really short of breath on exhertion, chest pains on exhertion and it's getting almost impossible for me to get up and down the stairs of my apartment..I wish we could all be healed and not have to deal with this stuff...Please, Please keep me informed on how your doing OK? Take Care, Harrybaby666 P.S. As you can see by the attatchment, I will be routing for ya!!!!

 

[Gnusgal]

Thanks, Harrybaby, Erica, and Bryan. It's good just knowing there are others out there rooting for me. The hardest part is knowing how hard this is hitting my DH. It was so difficult telling him today what the doctor had said. After I got off the phone with him (he'd been at class and called me as soon as he got out) I started to cry. I hadn't cried at all until after I told him. I hate putting him through all of this worry. My mom seems to be dealing with it okay, and my dad, too, amazingly enough. I haven't had a chance to talk to the rest of my family, though. It's hard seeing the emotions on their faces. They are trying so hard to be brave for me, but I know they are scared too. None of us really wants to talk about how we're feeling. Probably because we feel like we'd just fall apart if we did. I'm glad I have you guys to "talk" to at least. I hope that they will talk to someone. I don't think they feel like they can talk to me (though I wish they would).

Anyway, I'm rambling now. I should go convince DH it's time to think about dinner. I've been sitting at this computer long enough...

Again, thanks...

 

[KimC]

"I hope that they will talk to someone. I don't think they feel like they can talk to me (though I wish they would)."

Niki,

You're very brave to write the things you did, and I admire your courage and attitude. Keep talking to anyone who'll listen with empathy, and most of all, don't give up on your family. Denial, a feeling of helplessness and unspoken fear are natural when a life of a loved one is at stake. You probably feel like you have to be strong for them, too but remember, you're the one who needs their support the most. Sometimes just a long hug can bring out the true emotions of a family member after hearing tough news.

Much love,

 

[Glenda]

It's so hard on family to admit that they might loose you. Right before my surgery I often noticed my husband watching me very closely. Just today my youngest daughter told me that she had never seen her dad so scared. He was so afraid that because of all the other health problems that I had that I wouldn't make it through the AVR surgery. It's okay to cry, you don't want to bottle that up. It will make you sicker. Always remember that we are here and you can talk to us. I'm sending hugs and prayers your way.

 

[Karlynn]

Niki,
We are all pulling for you here. I imagine that so many things are running through your head right now. My prayers are with you, your husband and family. Take it a day at a time for a while.

 

[Ross]

What am I to do with you? I'm beginning to think either you or I are trying to run neck and neck into more of the stuff that we do not want. I hate having these toughts dangling around my neck all the time, so I'm sure your going nuts. Perhaps we should pray for each other and things will get better?

 

[Gnusgal]

Ross, you know you're ALWAYS in my prayers! What would I do without you?

Kim, Karlynn, Glenda- Thanks so much for your words of encouragement. I know that right now it's sitting heavy in my mind, but I'll be doing better soon, I'm sure. I bounce back pretty easily, thank goodness. As for my DH, he and I talked quite a bit at dinner. It did us some good to get our thoughts out in the open.

The biggest thing that's hitting us right now is that we're always talking about our plans for the future. He's got two years left of nursing school, and when that was over we were hoping to save up to buy our first home, travel some (we were even thinking it might be fun to spend 3-6 months in Australia doing the "traveling nurse" thing), and maybe even have a kid. Now we don't know how much of that will be happening. And now DH is worried that he's wasting the years he has with me being too busy to enjoy it. I'm not convinced I'm going anywhere, but at the same time, I have a hard time grasping the idea of life after transplant.

I think tomorrow I may spend some time looking for some transplant support online. You guys have been so helpful, I'm sure that talking to some people who have had transplants would help me feel more secure about what it all means.

Thanks again for being out there for me!

 

[Ross]

I guess I should have continued the early morning PM's to keep you healthy. I'm sorry, blame it on me.

 

[Gnusgal]

I guess I should have continued the early morning PM's to keep you healthy. I'm sorry, blame it on me.

Yup, it's all your fault... I just needed attention from my Ross-man!