Post-Transplant Blog, Pt. 10.

Pt. 10 in 2 yrs. I had my Liver Transplant on Oct. 27th, 2011. Unfortunately, I've had nothing but complications ever since. Many of you know that the latest one is pleural effusion, which is fluid in the pleural space (the area between the chest wall and the lining around the lining of the lung. This is drained about every 2 wks. now, and is ordinarily done with a local and is VERY painful. Yesterday, they did a draining and the insertion of a semi-permanent drainage tube, which was coiled up partially inside and partially outside so that I could drain myself every couple of days. That was stitched to my side. I was given 2 bottles to drain it into. I've had drains before, but have a DVD I watched before the procedure and was sent home with it.

The procedure left me feeling like I'd been beaten with a bat, even though I had my beloved Dr. Paz do it. It was scheduled for 10:30 AM yesterday, but didn't get done until 3:30 PM and I wasn't home until 6 PM. The Atarax make me nod out, so I fell asleep until 10:30 PM, back to sleep at 7:30 AM, got up and fed the cat and went back to sleep until 1:20 PM. Good thing I have a docile cat when he knows I'm not feeling well.

Dr. Paz believes the fluid is coming from liver disease and that there is ascites that is being pushed from my abdominal cavity to my pleural space. He is very much in favor of a TIPS. He thinks the constant draining will not work for me. Ziff, having had a successful TIPS yourself, what do you think of this for me? I told him to let me try this first. I do trust him. After all, he literally saved my life in 2006 or '07 with the first huge HCC presentation.

Hugs,
Connie

Wow Connie, maybe TIPS is just what the doctor ordered after all. If you have this procedure would it affect your eligibility for any treatments going forward?

Mae, when I had a chance to think, that's the first thing that came to my mind. That would make a huge difference. If couldn't have treatment, I'd have to pass, as with successful treatment I don't believe I'd need the TIPS. My TC called today to see how I felt and I mentioned Dr. Paz's suggestion and told her I trust him and she said she does, too.

I opened up the sterile pack I was given yesterday and after an hour I was able to drain the inserted tube. It was a little difficult as there were many tiny pieces to connect and disconnect, but I finally got 500 ml. They got 1500 ml yesterday during the procedure yesterday and another 300 ml while demonstrating to me yesterday after the procedure. so I didn't expect there to be that much today. I had a heck of a time getting the bottle opened up and poured out, plus getting tubing in place, but it will be easier next time. I feel like there is tubing twisted inside me, but since Dr. Paz did it, I'm confident there is not. It's the stitches that were placed both inside and out.

Hugs,
Connie

I've been waiting for an update.. Sounds like a TIPS is a good idea. I too think of you often and keep looking for your updates. My prayers and thoughts are with you daily. Sandia

Carol, I didn't see any bad language...unless you cleaned it up.

I'm slightly better, though I'm still hurting, especially when I bend or stretch. I drained 650 ml today.

I have to change the litter pan, and may do a load of laundry, though I'm really not up to that last thing. If I have nothing to wear to Pain Clinic tomorrow, then I will have to do it.

That's about it for today. If the doctor wants to do the back injection tomorrow, I think I will reschedule that.

Hugs,
Connie

Hi Connie! I still don't have enough 'oomph' to write much at the moment, but I did want to say that you are in my thoughts. I don't know if you are a praying-type person, but you are on our prayer lists and also a prayer chain (you've probably already been around the world a few times since I put your name on it!) - I hope you don't mind. Hang in there......

Do you wear a mask and gloves when you change the kitty box? I'm sure you already know about that, but I just wanted to mention it. They told Robert not to change the box at all (he never had anyway! Lol). His doc told us that when they first started the TX program at TGH, the patients were told that they could not have cats in the house at all. They soon realized that with very few exceptions, that wasn't going to work - people were NOT going to get rid of their kits! So now they just tell everyone to not change the litter and to be very careful about touching any stray litter that finds its way out of the box. Get rid of our cats - yeah right, like THAT'S ever gonna happen! Lol

Have a peaceful day......

Splash, I appreciate prayers. I believe they have gotten me through a lot in the last few years.'

I have sterile packs of masks and gloves that come with the drainage bottles, for use with the drainage and clips, and also have masks and gloves for changing the litter box. I get them from the hospital. I use 4 masks at a time and spray with a can of Lysol antiseptic. I was also told I couldn't have cats, and I didn't at the time of transplant...but missed the 2 20-yr. olds I'd had put down so much that I got a rescue cat of 6 mos old, when I was around 1 1/2 yrs. out.
'
My back is hurting severely today. I had an appt with pain clinic today for spinal stenosis, in a different area, so called and rescheduled it for Dec. I just didn't feel up to getting dressed today. Then I realized I should have received a box of supplies today and didn't, so called to let them know. Turns out I have to order them. So they will will come tomorrow--just in the nick of time. I really should have drained today. I'll be glad when my brain starts working.

Thanks for all of you for your thoughts and prayers.

Hugs,
Connie

Thanks, Dorothy, my back was feeling better today, but my draining supplies weren't delivered until late this afternoon, so I rescheduled my shopping until tomorrow. After they arrived and I drained 1600 ml, completely forgetting not to drain more than 1000 ml at a time, I felt much better! I had gone 3 days between drainings, so really needed it.

Hugs,
Connue

Hi Connie.

I am sorry your're not feeling well...you continue to go through so much. Reading your last few posts, it sounds like a good thing that they gave you a tube so that you are able to give yourself relief by draining on a 48-hour basis. However, the more you drain, does this encourage an increase in fluid build up, the following day? Do the doctors know what's causing the fluid build up?

Hope you feel better soon.
Hugs!!!

Post Edited By Moderator (hep93) : 11/2/2013 8:52:57 PM (GMT-6)

I actually got out today...first time in over a week. I used the electric cart at the grocery store and crashed into a wine cart. The manager wanted me to file an incident report but I told him it was fine...maybe a bruise on my ankle, but nothing serious.

I had a call from Mayo today and the hep. doc wants to see me in mid-Nov. There will also be an appt. to fit in with the TPC the same day. I discussed continuing back pain, so she said I could discuss it then.

In answer to your questions, the fluid is supposed to gradually decrease over a couple of months, but and then stop, at which time the tube would come out. However, it could work in the opposite way, which is what Dr. Paz expects to happen with me, which is why he recommended TIPS instead.

WD, I have never been drained on daily basis. I was going in about every 2 wks. and now it is recommended that I drain myself every other day, and no more than 1 liter a day.

Hugs,
Connie

To our HW liver disease forum friends,

I've missed Connie the last two days and worried.

Mae did some sleuthing and found her at Mayo JAX as an in patient the past few days.

We hear they are doing tests on why she was falling down for no apparent reason. With previous hip replacements, once she has fallen, she has difficulty getting up and called 911.

I'm sure she'll be back home soon.

More news when we hear more.

Prayers for a quick recovery,

MamaLama aka Carol

Update: Connie seems to be doing much better this evening, so much so she may be getting to go home tomorrow. They don't know what caused her to fall repeatedly but they are thinking it's just dehydration at this point. They've given her albumin and fluids to get her back up to speed. I'm feelin much better just hearing her sounding so upbeat. Thanks to our group for staying on the ball and making sure one of our own is o.k. Hopefully she'll get some rest and be back here correcting spelling and giving me a fit pretty soon.


Ziff

thanks for the updates..