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Post-Transplant Blog, Pt. 6

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Posted 3/25/2013 4:08 AM (GMT 0)
Starting a new thread here.

Hugs,
Connie
Posted 3/27/2013 3:32 AM (GMT 0)
I had my rt. thumb surgery today, and injection in the left thumb. I have a large bulky dressing on the right hand...most of thumb and all of fingers are uncovered. Hard to type, though. I will have this dressing for 3 days. April 5th I get the stitches out. I have some minor pain rt. now.

When I told them about the open spot in my midriff with some drainage, they had my TP surgeon come take a look and give approval for thumb surgery. She said she would order a CT of the area next week. She didn't seem sure if it is infected, but I feel sure that it is. I told her I will not agree to being opened up again, given what happened last time.

Hugs,
Connie
Posted 3/27/2013 7:51 PM (GMT 0)
Pain is a little worse today, but certainly nothing like I've had with other surgeries. All fingers are somewhat swollen. I'm elevating as much as possible, so can't post much.

Thanks to all for keeping the forum going!

Hugs,
Connie
Posted 3/27/2013 8:00 PM (GMT 0)
Glad to hear your surgery went well. Watch typing so you your thumb does not get sore.

Hope you continue to feel better over the next few days.
Posted 3/30/2013 3:14 AM (GMT 0)
Thanks, Syxx. Since the thumb only hits the space bar, I can type...but not for long. I'll be glad to get rid of the bulky dressing in the AM. Then it will be replaced with Neosporin and a Band-Aid.

I noticed that Mayo also has me scheduled for hand PT after the stitches are removed.

I spoke to my TC and she said that a chest CT is already scheduled for April and that it should include the midriff, so no separate CTs necessary.

Hugs,
Connie
Posted 3/30/2013 6:48 PM (GMT 0)
Hope your thumb is feeling better. I wish I lived near and could make you dinner. You are one strong cookie!!  Hugs, themiz
Posted 3/30/2013 11:24 PM (GMT 0)
Awww, thanks themiz. You are very sweet. How is themister doing?

The bulky dressing came off today, so I only have Neosporin and a Band-Aid. It looks like I have 3-4 stitches. I am not allowed to lift anything heavy, open jars, etc. It's a little sore, but not bad. I'm having a cheese omelet for dinner. Quick to make and I'll get my protein.

The spot in my midriff is healing over, but there could still be infection underneath.

Hugs,
Connie
Posted 3/31/2013 4:08 AM (GMT 0)
Connie,
Keep an eye on the possible infection. That's the last thing you need. Glad you had your hand fixed. One foot in front of the other.
Posted 4/8/2013 4:58 AM (GMT 0)
Stitch removal went fine, and so did PT/OT. I have finger and hands exercises to do, which I'm doing as much as possible, plus massage to break down scar tissue. I have a chest CT on Thurs., along with a bunch of other appts. I'll literally be at Mayo all day. I have blood work, f/u with a transplant doc, f/u with a pulmonologist, and at least one more that I can't remember.

The spot in my midriff seems to be healing. I'm using the MediHoney on it and covering with gauze.

Hugs,
Connie
Posted 4/8/2013 5:02 AM (GMT 0)
Connie,
Here's hoping Monday goes good for you. You are so brave to just keep at this until it will all be healed. You are an inspiration.
Angie1953
Posted 4/8/2013 5:39 PM (GMT 0)
Angie, sometimes I'm just on "autopilot," doing whatever is necessary without much thought.

The thumb has improved greatly with the exercises and massage. Not 100% yet, but definitely a whole lot better.

The midriff "hole" continues to shrink and I now believe it was just healing skin underneath and not infection. I guess the CT on Thurs. will tell the true story. I will also be interested to know if the e-coli in my lungs is gone. I have no more coughing, so I think that was just a virus I had. Took a long time to go away, but my lungs feel clear now.

P.S. My transplant coordinator (TC) called and asked why I didn't have the chest CT on Fri. I told her I wasn't aware I was supposed to, as it isn't on my schedule. She said that she had mentioned it over the phone to me last week. Well, I told her my memory is shot and if it isn't written down then I don't know what's going on. I do not recall that conversation at all. Anyway, she said she would try to put it back to this Thurs., which was the original date. Scheduling called me right away and they were able to put it back to Thurs. at nearly the same time. Whew! Otherwise, I would have to go to Mayo again on Fri.

Hugs,
Connie
Posted 4/8/2013 10:30 PM (GMT 0)
Connie,
I am happy to hear things seem to be healing.

I just had a similar experience to yours. I go to MGH on Wednesday for a 6 month checkup. Last Friday, at 5 pm., MGH called to confirm an MRI for tomorrow (Tuesday). I was never told about it and am occupied tomorrow and told them to cancel it. Called the Transplant Clinic today to find out what was going on. They said they have no record of me being scheduled for an MRI. I guess they will figure it out by Wednesday. This is the first time MGH has ever messed up with me. Not a big deal, but over the weekend I wondered if it was me, or them. Good to know my failing memory isn't totally shot.
Posted 4/8/2013 11:53 PM (GMT 0)
Yeah, sounds like them and not you. How often do you have MRIs? I get one every 6 mos. I'm scheduled for one next month, which will be my 18-month anniversary.

Hugs,
Connie
Posted 4/9/2013 1:05 AM (GMT 0)
Mike has MRI 3 times a year.  Last week. No tumors according to report. but there is some "stuff" by ducts. Will be anxious for review by someone who knows what all the big words mean....I'm not up on my duct language.  He has cardiology and hepatology this week.  Nervous. 
Posted 4/9/2013 2:01 AM (GMT 0)
ML, e-mail me with the "big words."

Hugs,
Connie
Posted 4/9/2013 4:18 AM (GMT 0)
I had am MRI, CT scan and an ultrasound every year, for the first 2 years after transplant. Now it's an MRI once a year. Of course, after my last MRI last fall, they had me undergo a endoscopy to check out something they saw. It turned out to be a calcium deposit on my pancreas. The docs said it's no big deal, but they'll keep an eye on it.
Posted 4/11/2013 11:38 PM (GMT 0)
David, I would say you have been lucky. With me, it never seems to end.

I went in to Mayo this AM to have labs, f/u with the transplant surgeon's PA, get a CT of my chest, and a followup with my pulmonologist. I only had 4 hours sleep last night and was up at 5 AM. I was at Mayo by 7:30. I was in all three buildings today. The P.A. called in my transplant surgeon to have a look at the nickel-size hole in my midriff...and opening of the suture line. This has been a problem since the beginning, all because a staple wasn't placed where it should have been. I actually asked the surgeon today if she closed me or someone else. She said she "helped" whoever else was closing. So maybe she closed the bottom and this other person closed the midriff.

Anyway, she had a look, felt around, declared there was no infection, but wanted to try stitching it up...though she had a hard time bringing the skin together. Okay, so she's doing the stitches as outpatient surgery next Tues. Meanwhile, she wants me to have an ultrasound tomorrow. Apparently, the chest CT isn't good enough for her.

I saw the pulmonologist at the end of the day. He said there seems to be a little fluid in my right lung. He made a call to my TC and the upshot was that my Lasix has been increased from 20 mg every other day to 20 mg daily.

I finished up and was downstairs waiting for the van service at 4:50 PM. They were supposed to be there between 5 and 5:30. At 5:40, I borrowed someone's phone and called to check on my ride. I was told that he was there and I wasn't, so they had me as a "no show." I had actually called them at 1 PM to make sure they knew where to pick me up and they said Davis Bldg. But this operator insisted I was put down for the Cannaday Bldg....he went there and I wasn't there. Of course I wasn't--I was at Davis. I ended up calling a neighbor to come pick me up. Which he did, but I didn't get home until 6:20 PM--exhausted and hungry.

I will be calling the van system tomorrow and lodging a complaint.

But I will not be on here until tomorrow evening.

Hugs,
Connie
Posted 4/12/2013 2:53 AM (GMT 0)
Connie,
I've been incredibly lucky. I was so sick and close to death when I got the call. It was all I could do to walk to the bathroom, or kitchen. I went to work, but could only function for a few hours a day. Going through a breakup and wasn't going to let my ex watch me die, or give up without a fight. That gave me a reason to try to keep going. I always thought I was going to be OK, no matter how sick I was. Not realistic, but it worked. I was too pissed off to let her win.

I'm guessing "helped" means that a resident stitched you up. But, she should have checked after the fact. After my transplant, at least half a dozen docs and nurses checked the incision every day for a week. I think they were looking for infection mostly. Still, my incision was stitched below and the skin was taped in about 80 places. The incision is 13-14 inches long, so it was well covered. Even then I had a small hernia a year later.

I'm hoping that in the near future all of your problems are cleared up. Then you can concentrate on living normally, or at least as normally as any transplant patient can.
Posted 4/12/2013 10:45 PM (GMT 0)
I went in for the ultrasound today and will check Mayo's site to see if they have results yet. I briefly looked at my labs from yesterday and the liver enzymes have shot up to more than twice what they were previously And my AFP was 10.6!! They hadn't done one in a long while, but it was previously very low. I feel certain that I have HCC again. I will try to get more results. Mayo was only giving lab results, appts., and ER reports when I logged in. Now they are giving patients access to all their doctor visits and scans.

I'll follow up with more info tomorrow. I am just too tired to go into detail.

Hugs,
Connie
Posted 4/12/2013 11:11 PM (GMT 0)
Connie,

I don't think you should feel "certain" about an HCC recurrence with a 10.6 AFP test. 

Mike's MRI was perfect, HCC wise and his AFP is 40.9 last labs, up from 34.5 in February.  It is a worry, but he is okay we think.  Oncology later this month, but we have not gotten too frightened though the reference range is <6.1.  

Talk more when you are rested up. We rested today after the several days in Miami.

Carol

Posted 4/13/2013 2:13 AM (GMT 0)
Don't jump to conclusions. Be positive, no matter what. It makes a difference.
Posted 4/13/2013 3:22 AM (GMT 0)
It's just that this is what happened before I got a cancer diagnosis previously.

Carol, 40+?? I'd be REALLY concerned.

Hugs,
Connie
Posted 4/13/2013 3:30 AM (GMT 0)
Let's REFUSE to let this be HCC!

Maybe just a tweak in the meds....you have enough on your plate so let's go with that, ok? Ok.

Hugs,
Mae
Posted 4/16/2013 2:14 AM (GMT 0)
Early tomorrow AM, I have to go to Mayo for OP surgery...or procedure is more accurate. My TP doc will try to stitch up the hole in my midriff. Here's hoping she is able to do it. I will be sedated with Propolol.

I got a call today from Mayo saying that my original hep doc wanted me to get a chest x-ray on May 9th. I just had a CT scan last week, so don't understand why she would want this. I will try to call about it on Wed.

Hugs,
Connie
Posted 4/17/2013 12:25 AM (GMT 0)
I went to Mayo this morning to have the whole in my midriff stitched up. Well, she couldn't do it and went ahead and gave me a wound vac. This is a device that suctions fluids from the site to help it heal better. Right now, all I'm seeing is blood. My hemoglobin and hematocrit are already low, so I think this may make me even more anemic. This device has lots of tubing...LONG tubing...and wiring and a power source to connect it to an outlet. This is worn 24/7 for a month. No showers or tub baths. I'm on Keflex 4 x a day and Percocet for pain.

I am really ticked that this was done without my knowledge or consent. I'll have home health nurses coming 3 x a week to change out tubing and the fluid collection box. Bah! Feels like a setback to me. They had put me in a room on the transplant floor, as they didn't think the portable wound vac would arrive today, but the rep came about 4, so after the nurse hooked it up, I called my neighbor to pick me up. Then had to go to Walgreen's to get my Rxs filled.

Hugs,
Connie
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