(Note: I wrote most of this before I left the hospital on Friday. I am just now getting around to sending it, but better late than never I suppose!)
Hi All,
Well, it looks like I'll be headed home today! Yahoo! I'm so stinkin happy to be getting out of here. For a hospital, this place is lovely, but I WANT TO GO HOME! I've got christmas decorating to finish!
I haven't updated you all much since I've been here...I've just been so tired from everything that's been going on the last few days.
When I got here on Tuesday, the doctors came in to see me and they were pretty concerned to see me for the 3rd time in 5 weeks. They agreed that it seems this virus was what knocked me over the edge, just because my heart is so wimpy right now. But that didn't make anyone feel any better, because even with heart failure, I should be more resiliant than that. So they brought the infectious disease team back in for more evaluation and tests. I gave them my full life history (again) and they asked me a million questions about my background, family, where I've traveled, etc. When I told him I was from Texas, his eyes lit up and asked if I was from Beaumont. When I said no, he was all disapointed. I guess there is some bizzare disease that people from Beaumont get. I tried to get details on it and he wouldn't tell me. Weird huh?
We're still waiting on a few test results, but it looks like I don't have any weird infection or disease, just a bum heart. I did find out that I STILL don't have swine flu! They did that rotten test again where they stick a 5 inch stick up your nose to swab. Nick said they only really put in about 2 inches, but I told Nick we'd try it on him and see if he still had that opinion. He then agreed that it was 5 inches. ; )
The other thing they did on Tuesday was decide to start all the transplant workup testing. She said that she wasn't ready to get me on the transplant list yet, but she wanted to get all the tests out of the way, because there are a ton. Yeah, she wasn't kidding! I had dozens of blood tests, an ultrasound, a lung test, skin tests, 5 vaccines and lots of others. They also brought in a social worker to discuss my mental state, because that is also part of their decision to transplant or not. I was on my best behavior. : )
I also talked to the transplant coordinator for a while. She gave me a thick binder of transplant information to read, which was pretty helpful, but I'd already read most of the information already online. Yeah, I did the homework before it was due...it's nerdy college behavior all over again. It was good to talk to her though.
Here are some of the questions we talked about:
Q. Considering I'd like to be around for at least 40-50 more years, how long do transplanted hearts last?
A. Many people are at 20+ years with their hearts. They do expect life expectancy to increase dramatically in the future, because the treatments are getting better and better. I couldn't corner them on much more than that. Nick also asked if the average lifespan is for all patients, or if they have an average lifespan for people getting transplants at my age. They didn't. Hmm, I think I'll have to ask Uncle Google more about that one.
Q. If the meds end up working, and I don't have to get a transplant now, is there a possibility I may have to have one in the future?
A. It's pretty likely. Even if the meds work, my heart is still messed up and is not as strong as normal. I will probably never be out of the woods. But a transplant is the last resort and you want to do absolutely everything you can to avoid it (through medicines). If I can get to where I can live a pretty normal life with medicines, that is absolutely the best way to do this (for as long as I can).
Q. How long do you have to wait on the transplant list?
A. It can absolutely vary depending on the donor heart that becomes available. The donor hearts are placed based on how well they match the person needing the heart. Matching factors include blood type, body size, and even location (the closer you are to hospital, the better). The last factor is how long you've been on the list, but it's the very last thing they look at. So you could get a heart in weeks (if they find a great match right away) or it could take a year or two.
Q. Could I have a baby after a transplant?
A. Yes, it's been done, but it is very high risk (for me and the baby). The good news is my doctor's wife is the head of the OB department at UW and she would be my doctor, so I'd have superb care. We'd have to have that family over for dinner sometime, for sure. And we would have to wait at least a few years after transplant to even try. The better scenario is (again) just getting better through meds. A baby would still be tricky, but a lot less risky it looks like.
After talk to all these people, and having all these tests, I was pretty scared I was going on the list with a few days. But the doctor assured me that this was all being done just because I happened to be inpatient for a few days. They are still going to wait 3-6 months to see if the meds work before we move to the transplant decision. I was happy to hear that.
So all in all, it was a busy hospital stay and I'm glad to be out of there.
I'm really ready to start the Christmas season. I felt like I've missed most of fall (my favorite season) so I want to make Christmas awesome and enjoy every minute of it. So Merry Christmas to all and I hope to share some hot chocolate with you soon!
Love you!
Jana
Updated about 3 weeks ago
Kitty Muller savor every minute jana. Life is meant to be lived that way. =)
Luis Cheng-Guajardo I love you Jana; you're the bravest! Thanks for keeping us informed and I'm sorry I argued with your husband about the BCS. Tell him that if you want a playoff, then I want a playoff.
Jana Farrill Morrelli Luis-Ha! To keep my home as peaceful and happy as possible, can you please want a playoff too?
Tammy Chriss {{hugs}} thank you for your updates...and for making me feel better *smiles* you should be a "poster child" for great attitude. Enjoy every minute of Xmas cheer, decos and the season
Athena Sears All the more reason for your family and friends to become organ donors if they are not already!!! Love you and I'm happy you are home. I hope you don't have to go back to the hospital for so long that you forget where to park.
Kelly Morrelli Glad u are home with ur very own St. Nick! ;) love and light!
Mandy Morrelli Young ((hugs)) We love you and glad you are home again. Thank you for the updates!
Rosa Roberge I'm rootin' for those meds! Glad you are back home. I'm also curious about the mysterious Beaumont disease
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