Post-Transplant Blog, Pt. 5

I think of Ziff when watching food shows, as soon as they mention ribs, bacon, or pulled pork.

Pulled pork...that almost sounds naughty.
Angie1953

Back to human bodies, or at least mine.

I had the first of 3 scheduled days at Mayo today. I had labs there at 8 and a chest CT was scheduled for 12:10 PM. However, when I left the lab, I went directly to the radiology desk and asked if there had been any cancellations. She said there had been and I could get in right that moment! Turns out I didn't need contrast, so no need to wait on creatinine results. Good thing, too, as it was high.

The chest CT took all of 3 min. I didn't even have to disrobe. I was told that they had a call and that there was an envelope for me at the Transplant desk. I got that and it was an Rx for Go-Lytely for the colonoscopy prep. I spoke to my TPC about this. The last time I was told to take Magnesium Citrate and I have 2 bottles of that in the fridge. She said I could take that. Since the van wasn't supposed to pick me up to go home until 1:30, I called one of my neighbors and caught him just as he was going out. He got me and brought me home, so I was home by 11 AM.

about a half-hour later, I got a call from my Transplant Coordinator (TPC.) She said that she had already gotten the results of the CT and that there appears to be a nodule or something on my lung...a new finding. I asked if we were talking cancer and she said "no." She said the pulmonologist, whom I'd seen once before, would be calling me. Also that he might want to do a bronchoscopy, but this was not something that had to be done tomorrow...no big rush. However, they don't want me going into hep C treatment with an infection or inflammation, or whatever. about 15 min. later, the doctor called..

The pulmonologist reiterated what the TPC had already told me. He did say that they would introduce saline into the lungs to give a clear picture, then put the scope with light and camera into the lung. They would not be doing a biopsy, just having a look to see what is going on. He noted that the saline would cause a reaction in which I would have a fever for a few days; also a sore throat, of course, from the scope. He said the scheduler would call and I could make an appt. convenient for me.

I made it for Jan. 23rd, but because of the 2 days at Mayo next week, I'm thinking if I can have it done the first full week of Feb., that might be better. I have to go down there on Feb. 6th for labs. They do the bronchoscopy early...I have to be there at 7, which means getting up at 4 AM to take the van. This morning, I had to get up at 5. I had talked with the radiology dept. regarding the necessity of having someone with me for the colonoscopy and the bronchoscopy. With both of them, the issue is that they don't want me to drive, as I've been sedated. I explained that I never learned to drive and that I take the handicapped van service (due to bil. hip replacements), which is door to door. They said that would be okay. Good thing, as I have been unable to find a soul who can take me next Wed.

I accessed the lab results when I got home. Most were available. My liver enzymes had actually gone down, as follows:

ALT- 43 (normal is 7-45)
AST -91 (8-43)
Bili - 1.0 (0.1-1.1)
Alk-Phos - 227 (55-142) This was down from 256.

What concerns me is my kidney function tests, all increased:

Creatinine - 1.8 (0.6-1.1) At my last labs, it was 1.1.
BUN - 39 (6-21) This had risen 10 points from 29.
INR - 1.1 (0.8-1.1) Up from 1.0.

I know that these kidney results are due to the 40 mg of Lasix I take daily. I had such problems with edema for so long (and still have some mild swelling at the ankles and tummy) and therefore have stayed on the high dose. I'm going to try cutting it to 20 mg every other day. When I had previously cut it to 20 mg daily, I started swelling again. So it's going to have to be in small increments, kind of like tapering from Prednisone. I imagine I will still need at least a small dose of Lasix, but I don't want to go into kidney failure!

More next week!

New glitch, Connie. I'm so sorry this is happening...step by step...AGAIN.

Keep us posted.

Carol

David, I hadn't heard that about Prograf and the kidneys. However, since I'm on such a low dose of Prograf (1 mg twice a day), I think the Lasix is more of a culprit.

Speaking of Prograf, I just accessed the value from today and it was 12. They like it around 7 and 7-8 is what it normally is. So I don't understand this result. I took evening meds at 8 PM and none until after the labs this AM (about 8:30), per protocol.

Thanks for the support.

Hugs,
Connie

Because Mikes kidney numbers haven't been great since transplant they said Rapamune was kidney sparing and switched him. That blew up in his face you may remember.

Mouth sores and a 5 day hospitalization.

So he's been back on Prograf

TP coordinator said Incivek makes Prograf 70% stronger. And this further depresses immune system.

That's why the daily labs for a while.

C

Post Edited By Moderator (hep93) : 1/18/2013 1:32:51 PM (GMT-7)

I went to Mayo early this AM for labs--repeating the Prograf level, as well as renal function. At 9 AM, I had an appt. with a psychiatrist. This guy impressed me by his intuition of exactly how I'm feeling, and agreed that it is situational depression. However, with treatment it could get worse. So he prescribed 5 mg of Lexapro daily and wants me to try it for 5 weeks. I probably won't be able to have it filled until next week, as I was just at the pharmacy yesterday. He knows that and is okay with it. Rick, didn't you take Lexapro at one time?

My BP had also shot up. I've been taking my metoprolol every evening. Because it was so stable, I stopped measuring it myself, as I did prior to transplant. I couldn't understand the increased BP until I realized it was probably due to too much salt. I recently discovered Pretzel Goldfish crackers and have eaten more than I should. So I have to halt that.

My last appt. today was 5 hours after the shrink. I went to the chemo patients' resting area on the 6th FL of the Davis Bldg. at Mayo, where I was able to catch an hour's nap.

I had just gotten home at 5 PM when my TPC called and said that my Prograf level today was a 10. So only 2 points less than last week. She changed my dosage from 2 mg a day to 1 mg (0.5 mg twice a day.)

I'm now starting the prep for the colonoscopy tomorrow AM. I can only eat clear liquids tonight. Just made some SF Jello.

It does appear that they are moving ahead with getting me ready for treatment. I mentioned the newer, non-interferon treatment coming on the scene in 2013. However, the doctor agreed that I can't afford the luxury of waiting, due to the aggressive nature of my hep C and to reduce the chance of recurrent HCC.

I will continue this after tomorrow.

Hugs,
Connie

 Yeah Connie , I was on and still have a prescription for Lexapro . It's actually very effective at combating depression . I have been on it for about 2 years but feel like I want to get off as much medication as possible . My docs all agree that it would be for the best If I can manage without it . The decision is up to me basically . I started weaning myself down by taking half of a 10mg tablet a day about a month ago and now for the last week or so haven't taken any at all .

 It doesn't make you feel drugged out , In fact I was sure it wasn't doing anything until I decided to quit . I believe it takes like a week to fully start working , It accumulates gradually . Works by releasing serotonin in the brain ( a natural chemical that reduces stress ) if I remember correctly .

 I had been a workaholic for so many years and the stress levels of not working and the black cloud of this disease was creating a multitude of mental problems , Depression bouts , nervous fidgeting and constantly on edge mainly . The transplant team therapist ( Shrink ) recommended I take it in combination with the ritual lactulose . Encephalopathy and stress are two separate issues and unless observed by someone like a therapist knowledgeable about both issues , It may go unnoticed . Just another reason why we encourage people to see a Hepatologist . 

 Connie I'm so sorry this has been so hard on you lately . Know that you are always in my thoughts and here's hoping a long deserved break comes soon .

A. Ziffle ( Rick )

     

Carol, the high BP reading was BEFORE the colonoscopy. I am 100% sure it was from the Pretzel Goldfish. So it's an easy fix.

The upper endoscopy and colonoscopy went fine. They doped me up a little too much--Demerol and Versed. The hard part was getting an IV established. The nurse would not listen to me when I told her where to go. She said, "Trust me." I said "Okay" but I knew she wasn't going to get a vein...and she didn't. Plus it hurt and when she withdrew the needle she did so from an angle and it scratched me. There was a dark cloud over this nurse. I tried to joke with her and she was having no part of it. She looked like she was anorexic and living on an hour's sleep a night. (This is the only Mayo staff member I've met in 6 years of going there that was unpleasant.) She left the room and another nurse came in. This RN was very cheerful and listened to my suggestion. She got it right away. The difference between the 2 nurses was enormous. But once she got the IV in, the other nurse came back. I resisted the urge to tell her, "I TOLD you so." The doctor was very pleasant and explained everything (which I already knew, but let him explain anyway.) It turns out I had 3 polyps and those were removed. I think probably when those were found, he asked that the meds be increased. I am still kind of sore inside and yesterday I was really wiped out.

My bronchoscopy was rescheduled to Jan. 29th to give me a little break.

Hugs,
Connie

Yes, I live alone. No real friends or family out here, but I do have some awesome neighbors. This is nothing compared to the hell I've already been through.

Hugs,
Connie

Good thoughts for Connie today as they scope her lungs.

With all the caring she does for the rest of us....we send it back to her today

Hugs

Carol

Thanks, Mama and David. The prep took much longer than the actual bronchoscopy. I went through the IV problem again. The first nurse didn't get it, though she wasn't unfriendly. She brought in someone else who went where I asked her to and got it. I had a breathing treatment in which some kind of numbing med was inhaled into my throat. Then they took a long tube and sprayed anesthetic in the back of my throat. I was warned that the numbness and throat pain may remain for up to 3 days and to only eat soft food that day. I had ice cream and apple sauce. But my throat is no longer numb and only mildly sore.

My neighbor/friend was awesome. The nurse had stressed that she would have to stay with me overnight. They called her in and were reading all the discharge instructions to us both of us. At the end, I seized the opportunity to say to my friend, "And you're staying with me tonight, right?," while nodding my head yes. She picked up on it right away and said, "Yes." Because they would not have done the procedure if she had said "no." She's 88 yrs. old and very sharp.

They kept me in recovery for over an hour. I have no recollection of the procedure itself. As with the endoscopy, I fell asleep when I got home. Woke up at 7:30 PM and took my meds, then back to sleep until 10:30 PM. And I'm about to go to sleep again, if Mac the Cat will let me.

Thanks to everyone for keeping the forum going in my absence!

Hugs,
Connie

Lucky you don't have a pig, then you'd need 4 masks...