Post-Transplant Blog, Pt. 9

Continued from Pt. 8. Go back there to Pg. 4 to read about recent events, including this week, and through today.

Thanks!

Hugs,
Connie

Happy to hear you were drained, sorry it is so painful. I expect some pain when seeing a doctor for a "procedure." Docs have to hurt you, to fix you much of the time, but I can't understand why they won't give you a tranquilizer or knock you out for this. At least you'll feel better tomorrow.

Carol, it was the hepatic artery that had to be rebuilt...not a valve. It was "shot," probably from the TheraSphere treatment and the surgery to remove the right lobe with the first HCC.

Mae, yes, I'm breathing better tonight. I also have more energy, thank goodness. Now for a good night's sleep w/o coughing. I have really just forced myself to do what had to be done, as no one else will do it for me.

EVERYONE: When I complained to the Attending today about not understanding why they couldn't give me conscious sedation for the thoracentesis, she explained that one of the reasons is that they have to have me sitting up. I guess this would be impossible if one were "floppy." Today, they had me sitting on the edge of a gurney and holding onto the back of a rolling desk chair with a pillow secured to the top of the back. I had to put my feet on the ring between the wheels and the bottom of the chair and hold tight with my arms around the chair back and my forehead resting on the pillow. I was afraid the chair would roll away from me, but I held it tightly enough that it didn't do that. This worked out better than leaning on a table, as I had previously.

Hugs,
Connie

Hopefully you got some relief though.

I received a call from my TC today. The surgeon has been put on "hold" for awhile. I will have more labs on the 16th and a meeting with the hepatologist on the same day. They have decided it is my liver causing the fluid buildup (I surmised that 6 mos. ago), so they want to do the transjugular biopsy on the 18th, but the hep doc wants to meet with me first. I was told that I will be put in "la-la land" for the biopsy and that they would try to schedule the draining for the same time. (YES!!) Apparently, they can see more this way. As long as they partially sedate me, they can do anything they like! So it's out of Pulmonologist's hands and back to Hepatology. I'm betting cirrhosis.

Just more appts. when I thought I was mostly done for the month.

Seeing my primary care tomorrow at Shands. Will be gone all day.

Hugs,
Connie

Me, too, ML. I'm going to have to find a primary care doc closer to me, after the nightmare of today. Shands is a long distance from me, but I've been seeing my PCP there for over 20 years...probably 24. I got a flu shot and a new written Rx for Lortab. I was at the van waiting area by 2:30, but due to a large number of people there and the need for a van going my way, I didn't get home until 7:15 PM. I feel like I've been beat up. We went all over town before finally getting to the Beach. I had to get the driver to stop at one location, so I could use the bathroom. All I want to do now is go to bed, but have things to do. I had a message from Mayo about next Mon. and Wed., but didn't really understand it...something about the times of procedures. I will call them tomorrow, though they are sending a new itinerary.

Tomorrow, I have to go to 4 stores and Thurs. I have an eye exam and hopefully can get my Rx for glasses filled, though I may need to go back. I think my daughter may be coming on Fri. for her b.d.

Forgive me if I don't post many replies tonight or for the remainder of the week. You are in good hands with Carol and Dany and our long-time members.

Hugs,
Connie

Oh Connie! Can you drive or do you prefer not to? I am just curious.

I feel bad that you have to do so much on your own.

Get some rest!

Thanks for that, I was just curious.

Right. I lived right in Manhattan. I didn't even know anyone who owned a car. So I just never learned. Even Miami, where I moved to prior to Jacksonville, FL, had a great public transportation system.

Today was a waste of time. My friend, Larry, took me to Lens Crafters, but they would not allow me to pay the difference between what Lions Club pays and what I wanted (thin lenses, antireflective coating, etc.) They would not even let me have the eye exam done and take it it with me to another place to have it filled. So I walked out. I will have to go to Walmart once I get my appts. behind me, and get what I want and put it on a credit card. Drat.

So I'm headed for a nap. Then I need to do a little cleaning. My daughter will be coming late tomorrow afternoon and will stay the night. More cleaning before she comes, if my breathing isn't too bad.

I have 3 appts. on Mon. at Mayo and then the thoracentesis and transjugular biopsy done under conscious sedation next Wed.

Hugs,
Connie

Daughter showed up during my nap, thinking this was Fri. Oh, well. However, I will be here less frequently the next 2 days.

I don't know which specific treatment they are planning for me. Was told whether they go ahead with it will depend upon what the biopsy shows.

Hugs,
Connie

I was up before 6 AM to meet with my Transplant Coordinator and Hepatologist at Mayo this AM. The hep doc was explaining why it wasn't feasible to do treatment previously, with all that I've had going on, and said it may not be possible now. There will be a 6-month wait if I AM eligible for the latest treatment w/o interferon.. But he wasn't sounding very optimistic about my chances. I said, "So after all I've been through in the past 2 yrs., I'm still going to die of liver disease," to which he responded, "Probably." If that proves to be the case after the biopsy and 2-yr. post TP checkups, then I will stop having so much testing and treatment and just get comfort care.

I don't mean for this to be discouraging to anyone else. I really should've gone ahead with hep C treatment at some point prior to transplant. It just seemed there was always too much else going on, mostly with orthopedic surgeries and hernia repairs. People who either clear the virus prior to TP or who don't have the virus at all, do far, far better medically than those of us who still have active hep C.

Just when I thought I could sleep a little later on Wed., the hep doc ordered an abdominal US early Wed. AM. That will be followed by the thoracentesis and transjugular biopsy. So I will take the van there and then have my friend meet me there for the procedures and to bring me home afterwards.

I'm hoping to do a little grocery shopping tomorrow.

Hugs,
Connie

Connie,

This is just you getting used to the news that you can't have a treatment program at the moment...while you are sorting out yet again another bump in the road.

Mike is almost a year ahead of you and they are still telling him that if doesn't treat now, he can do it in another 6 months or a years.

I will continue to hold strong that this is the case for Mike and for you.

You have come back from worse news than this!

Hugs,

Carol

Oh Connie! I agree with MamaLama.

I am sorry if I don't understand, but why is your doctor being so discouraging?

You are such a strong person...don't give up. Your amazing!!!