Post-Transplant Blog, Pt. 9

ML, I just don't feel up to anything right now. I know I have a full onlaught of testing and consults next month, including extras of thoracic surgeon, Pain Clinic, and Dermatology for itching. What would happen if I slide off the ball? Someone would have to get me back on, so I couldn't do it alone. I know you are just trying to help, but I don't see this as what I need right now.

I'm hoping that if the surgeon can resolve the fluid problem, I can start walking again. Right now, I'm still not breathing properly and remain congested.

UPDATE - 09/24/13: I called my TC today, but haven't heard back yet. Wanted to know if she has biopsy results and also to firm up the itinerary. There are still some tests for next month that are duplicates of what were recently done.

Hugs,
Connie

That is very good news about no cirrhosis. I will keep you in my thoughts as always and hope for more news over the next few weeks. Hopefully you can get that Hep C treatment soon.

Well, not quite, Mae.

I had placed another call to my TC a couple of days ago and received a call back this afternoon. She said that one of the hep docs would see me on the 11th to discuss treatment. I told her about the Expanded Access Program of Sofosbuvir w/Ribavirin and with or w/o Interferon in Aggressive Post-Transplant Hep C, and also the newer open label study of Sofosbuvir/Ledipasvir fixed dose combination w/Ribavirin or w/o Ribavirin.

The TC apparently knew about neither of these and said to bring the information I have with me and present it to Dr. K. on the 11th. After that appt., I will meet with her.

Meanwhile, I told her about my SOB and coughing again. We settled on this Fri. for draining with a local, as I have 3 days of testing and consults next week.

The only other result she had from the biopsy was that I do NOT have portal hypertension.

Hugs,
Connie

I'll be thinking of you tomorrow, Connie! We will be at TGH for Robert's draining - probably all day, also! YAY, lots of fun! Not.

Have a peaceful day. (Ok, try!)

Hey Connie! I know you might not be on today, but wanted to leave you a message just in case. Hope you're doing ok and resting comfortably. Your 'drain buddy', Robert, did well and is now 4 1/2 liters lighter! On the way to TGH, he looked over at me and said, "What should we name her?", as he patted his belly. (Hey, we gotta find the humor in this mess wherever we can, right?!). We decided on 'Arielle'. We told our boys that we had to leave her at the hospital because she was just too squishy and couldn't hold herself together. ( ) We're both a little twisted.....

Nope, no Arielle...that's my grown g'daughter's middle name (with one L and no e at the end.) Glad to hear that Robert did well! I did, also, for a change!

I had the head honcho...the chief of the dept. I am going to request him if any more thoracenteses are required.

He was also a very nice man. It only hurt when he put in the initial stick for the local, and then not much. It was easy-peasy from there on and he got 900 ml. I wasn't expecting that much as it had just been done on the 18th and a liter was drained then. I started breathing better almost instantly.

I had labs this morning and here are the results:

CA - 8.2 (8.9-10.1)

Alk Phos - 204 (55-142) (Increased.)

ALT - 36 (0-45) (First time this has been normal in a long while.)

AST - 98 (8-43) (Decreased.)

TP - 6.4 (6.3-7.9)

Bili - 1.2 - (0.1-1.1) (Increased.)

Creatinine 1.3 (0.6-1.1) (Increased.)

BUN - 17 (6-21)

HGB - 11.4 (12-15.5) (Usual for me.)

HCT - 35.5 (34.9-44.5)

RBC - 4.16 (3.90-5.03)

INR - 1.1 (0.8-1.1)

Platelets - 272 (150-450)

Tacrolimus (Prograf) 6.7 (5.0-15) (Right where they want it.)

I'm still spitting up some phlegm and am tired due to getting up early, without enough sleep last night. So I'm off for a nap. Back later.

Hugs,
Connie

Oops, sorry Connie, I didn't know that - we will change her name. Lol

Glad to see that most of your labs look pretty decent. And very happy to hear that your thoracenteses went well! Actually it's pretty funny because Robert's was done by the head honcho today, also! Instead of doing the U/S first/separately, they did the 'U/S-guided paracentesis' - mostly to save time, because we were late. He did have to have an Albumin infusion this time, it took about 15 mins. How long did your visit take, start to finish? It was about 4 1/2 hrs for us - and that included the shuttle time, back & forth between LifeLink and TGH. By parking at LifeLink and shuttling back & forth, we save the $5 valet fee.

And Ziff, you're right - no more funnies.....won't happen again.

Post Edited (Splashdancer) : 10/4/2013 8:11:47 PM (GMT-6)

Splash, that really is funny that Robt. had the head honcho, too. I think it makes all the difference in technique and experience. This was an older guy with white hair. I was there 5 hours because I had to have labs done 3 hours prior to the thora. But once I got called to the back to get undressed, it was about 1 hr. and 15 min. until I was done...an all-time record. They always use the US simultaneously with draining...get a picture first and then just keep it on.. Because of my position with head down on a table, I can't see the canister with the liquid flowing in, but can hear it. It stopped a couple of times past 500 liters, but the doc would move the needle a little and it would start flowing again. I think this was the error that others made in the past...just stopping when the fluid stopped. He said he got it all, so of course I feel better.

My one-hour nap turned into 3, because I set the clock for AM instead of PM. Guess I was more tired than I realized. LOL Just had shredded wheat with fruit for dinner. Will have more fruit for dessert--watermelon. Guess I feel a little dried out.

Hugs,
Connie

No. But the most fluid they've ever gotten was 1200 ml. I do recall asking about it early on and being told that no, because they don't take that much fluid. I don't even have an IV when I go in there. He just uses a needle and then a catheter to go into the pleural space from the upper rt. back and a vacuum device pulls the fluid out. They can't pull it out too quickly or take too much, or there's a risk of pneumothorax (lung collapse.) I heard a gentleman in the sub-waiting room saying that his wife (who is waiting for a liver and kidney transplant) once had 14 L taken in a paracentesis!!

Hugs,
Connie

It's really best if they use the US during the draining, so they can see exactly what is going on and how much fluid is left. There was no pushing with the thora, but he did move the catheter around or push it in a little more when the outflow would stop...and that would get it flowing again.

Yeah, the man said the doctor came out and told him, "You just had twins." LOL I'm sure the poor woman must have been so relieved.

I am still breathing well. I slept 9 hours last night without waking up once, not even for a bathroom run. And that was after a 3-hour evening nap a few hours before I went to bed for the night. I have a busy day and evening, so am glad I got some good sleep.

Hugs,
Connie

I posted a long response and lost it. Grrrr. Anyway, you made a good comparison with your pregnancy. A great relief, indeed, to be able to breathe easily. I am still coughing a little and spitting up some. Guess it is left over from before. But it's nothing like it was, and my Albuterol inhaler helps a lot in getting it up.

Only once have they been unable to locate a portable US machine at Mayo. In the para/thora procedure rooms, they each have US machines that stay bedside. It's best to use it during the procedure, especially with a para, as there can be pockets of fluid that the US will detect.

I am still breathing easily today. It feels wonderful. I have today and tomorrow relatively free before I start all over again at Mayo on Tues. I have 3 days there this week--mostly consults. Tomorrow and Sat., I had signed up for 2 meetings onsite at my apt. complex regarding legal documents, such as a Living Well, Power of Attorney, etc. However, I have canceled those, as I need time to do laundry, clean, shop, and just rest. I basically need an updated Living Will and can do that at Mayo. I did remove my b.f. who passed away in April, as my Medical Proxy, and inserted my sister in SC.

How is Robert doing now? I hope you both have a peaceful day.

Hugs,
Connie

Today's meeting with the dermatologist at Mayo was disappointing. She doesn't prescribe oral medications...kept talking about various creams, which don't help when I can't reach my back. She did mention light therapy, but it would require 3 treatments a week, for several months. I still have too many appts. at Mayo to be able to pull that off. She did freeze what she diagnosed as a pre-cancer on my hand. It has now blistered up, but I was told to leave it intact.

Back on Fri. for initial consult with thoracic surgeon and f/u with hep doc and TC.

Hugs,
Connie

Deb, I've had that idea of cream on a towel mentioned before, but it seems to me that it would waste a lot of cream...and there's a specific one she wanted me to use. I currently use Dove body wash and she was okay with that, and Gold Bond cream...but she wanted something thicker in a jar (more expensive.) I wasn't even aware that Benadryl made a cream. However, I've tried oral Benadryl and also Zyrtec, neither of which did a darned thing. My bili is up to 1.5, so maybe that will be enough to convince the hep doc on Fri. to prescribe cholestyramine or Atarax.

I will also be taking with me info on the newest treatments and pushing for those. I will also be seeing the thoracic surgeon and hopefully be given a date for the procedure to seal off the bottom of the pleural space. I imagine I will have to be drained again prior to that. I am still breathing pretty well, but am starting to get SOB again.

I've also been fighting a cold since last evening. So I'm doing my sure-fire cure of Alka-Seltzer Plus and vitamin C, which seems to be working. I'm taking it easy today except for doing a load of laundry.

Hugs,
Connie