Oh, Pam...vent away...what a mess!!!!!
I followed your posts for a long long time, as Ron got his transplant not long before Mike. If it wasn't for your blog with the photos I would have been so frightened to see Mike that first day after...tubes up every place that a tube might fit! You have been my shining star....if Ron and Pam could go through this, we could make it too.
And now is now.
They never say that a transplant makes you young again. I means you have a chance at more time than you might have. Mike would be gone almost two years without that transplant and though things are not GREAT, he is alive and has had some extra time with the children, grandchildren and friends.
Like Ron, Mike has had other problems. He had a gigantic incisional hernia repair...opened more than half the original incision and put mesh over a football sized hernia...pushed it back in and it was recuperation all over again.
He had a bum shoulder and had that repaired after waiting 3 years to be well enough for that surgery....and it was recuperation all over again.
Everything seems a big deal. He was in hospital 3 days for a colonoscopy! And his BP flew over the roof...again with that one.
I can so relate to the feelings that this has been going on forever.
I haven't posted this yet, but Mike has been sleeping 15-20 hours a day again. His BP this morning was 96/57 and his pulse was 53. This has gone on for a while. We have call into transplant and cardiology. His next appointments are the second week in April, but I don't know if it can wait.
Like Ron, Mike has cardiac problems also. He needs an aortic valve and they are holding out until it is an emergency, hoping with each passing day he will be stronger and it will be closer to the time they can do one of those new procedures where they go through your leg and up with a catheter to the valve....no open heart surgery. Those surgeries are not without risk, but if you need it, you need it.
In the past month I have begun to feel like "IT" is starting all over again. Mike isn't unreasonable (yet), but I agree, it is always about him. Totally.
On Saturday my daughter, son in law and 2 of the 6 grandchildren are due in FL from NY. For Easter. I see them 2 or 3 times a year and I really really miss them. I used to fly up at the drop of a hat....for birthdays, etc. But since Mike has been ill, I don't go often. And since the prices of the flights are so high now....
But I just don't know if he can manage the visit. We had planned some nice side trips with the children and I don't think he can manage the long days, confusion, loud boy sounds. Maybe we 5 will go on a little trip and leave him home with my sister willing to check in on him.
I hear how frustrated you are with how long Ron has been ill. You have your hands full. However, I am certain IF he could do the laundry, he would. Maybe you could train the dogs....lol.
How I felt was that I COULD do everything that needed to be done...but doing it with Mr. Grumpy Pants-Sour puss on the couch critizing me every second made me resentful and frustrated. I don't have much of that now. But I do have Mr. I'm Going to Die any minute, poor me. Lots of sighing and such.
I bet it totally sucks to have gone through the transplant thing and not to be CURED totally. Mike is 25% of the man he was. Fortunately, he has no HE though his Viral Load is high and, like Connie, has been passed over for treatment with the 3 drug program....until a non Interferon based protocol is available for post transplant patients (that is covered by his insurance)...maybe next year they say.
It must be hard to know that post transplant your life expectancy, especially if you still have Hep C, is compromised....I doubt Mike will see 70. Sounds like Ron may have a shortened life as well.
Mike started on a new antidepressant and we are hoping that helps. Please God that it helps...he sits, reads, naps and eats..once a day he goes to the post office and sometimes does some grocery shopping...that is IT.
No wonder they make folks go through a psych evaluation before trasplant....this sure tests the body and mind!
I'm glad you posted and hope stick around when you have a few minutes in your busy schedule. I tried counseling last time...but found THIS was more theraputic.
Hugs your way,Pam,
Carol
PS: I give you permissiosn to stop at WalMart on the way home and buy more socks!!!!