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retired 12 posted 12 hours after transplant!!

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Posted 5/17/2014 3:47 AM (GMT 0)
Not everyone has pain after a transplant. The right side of my abdomen was completely numb, still is, to some extent. I had no pain whatsoever.
Posted 5/17/2014 4:10 AM (GMT 0)
Mike has a Mercedes scar.

They gave him some morphine in hospital but he never took one pain pill at home.

He knows they cause constapation and he wasnt interesred in that.

He was pretty weak and tired for a long while. But he was better that that guy with esld who couldn't find the bathroom -- starting the morning he woke up!

The med regimen is pretty typical.

Prednasone for healing.
Antirejection drugs.
Anti viasl
Antibiotic
Anti fungal as your immune system is turned off.


Tablet out of power. More tomorrow.
ML
Posted 5/17/2014 7:14 AM (GMT 0)
Hey Ron! Congratulations again on your successful transplant and on such a fantastic beginning of your recovery! It always makes me happy to see these wonderful endings/beginnings.

I have to ask you something about your HepC treatment. First let me say that I am in no way doubting or questioning your doctor's decision on your treatment - quite the opposite in fact! What exactly did they tell you about starting treatment immediately after transplant? Robert's team at TGH told us that there was no way they could start him on any treatment for at least a few months. The reasons they gave were: 1. The treatment meds could mess with his LFTs, and it would be too difficult to differentiate between issues from the HepC meds, the transplant meds (especially prednisone), and the transplant itself. 2. The HepC meds could interfere with his recovery from the surgery, i.e. side effects. 3. There was too little research done on the safety and effectiveness of treatment immediately after transplant.

Obviously TGH was wrong - again. It sounds like you have a great transplant team behind you! If you could tell me what your doctor said about your HepC treatment, I would SO appreciate it. Between this and other things I have learned over the past few months, I am now 100% sure that TGH allowed Robert to die, when he most definitely could have been saved.

Again...I am very happy that you are doing so well - it helps my heart a bit every time I hear of someone getting the upper hand on this awful disease. Your story is inspiring!

Post Edited (Splashdancer) : 5/17/2014 2:06:42 AM (GMT-6)

Posted 5/17/2014 2:00 PM (GMT 0)
Splash.... They are treating people up to transplant and carrying on after transplant with the new drugs. Retired12 mentioned some trial in one post, but they needed 8 hours prior to transplant. I think it is amazing they are getting very aggressive with Hep C treatment and transplant patients.

When you posted about Robert not being able to do treatment after transplant, you were dismayed over the reasons. You said it was mostly due to the acities and pain meds he was taking. I did not know why those things mattered at the time. Did his doctor not treat for that reason? I was following all post transplant folks as themister was going through his eval at that time. One reason was if he got a Hep C liver and needed to treat again....as I hear they do transplant Hep C liver's at times. Themister's Mayo chart states something about no Hep C liver. I will look it up. But I think when someone gets very ill and is close to death, that is considered. Now, with the great Hep C treatment...it may not be as bad.

It seems so much has changed so very quickly with Hep C post transplant. I am waiting for SVR on Mama's Mike and now Retired 12. And our David also treated Hep C post transplant. It is an exciting time for those with Hep C. Big Hugs

.
Posted 5/17/2014 2:53 PM (GMT 0)
Hi themiz! My above comments/questions were related to the issue of a 2nd transplant for Robert. I had done a lot of research (as always! lol) and I knew that Robert had an excellent shot at survival if he were allowed a chance of a 2nd transplant with subsequent treatment with the new HepC meds as soon as possible post-transplant. I presented the info to our coordinator and the team discussed Robert's case at their weekly meeting - and they said no. We were actually told that there was little research and no trials being done using the new meds on post-transplant patients - that was flat-out not true. It was the post-transplant patients that the manufacturer/researchers had in mind with Sovaldi - and there were trials going on at the time I did my research.

So whether it was after his transplant - or after a second transplant with subsequent treatment - they gave me all of the reasons (excuses) I've written about here (and in other posts), as an explanation for denying him any help at all. They gave up on him and let him die. And there is no doubt in my mind that Robert being on Medicaid played a part in their decision. I'm sorry...I'm just very angry, frustrated, and heartbroken. If TGH had done the right thing, Robert would be here with me right now. I know in my heart that I'm right.

(I apologize Ron - I didn't mean to hijack your thread. I hope you are feeling even better today!)
Posted 5/18/2014 10:00 AM (GMT 0)
Hi everybody, sorry for not posting yesterday. I was overwhelmed with making sure I followed all my instructions from the hospital after being released Friday. But I needed to get back to splashdance's request. SP, I had followed you and Robert before my tp. After seeing what Robert went through, I was determined that if I could prevent anyone from going thru what YOU, Robert, and many more have endured, I would gladly sacrifice myself as the granny pig. Knowing that I had lived a rough live.

Now as far as the HCV treatment post pt. I kept asking about the blood draws every morning in the hospital, and the nurses would tell me that the doctors wanted to see what my virile count was post pt. Then I asked for the results from the doctors and got the answer that I had over 2million counts prior to TREATMENT with the new meds, but everything went so fast that they didn't have any test before transplant. I had been now the new meds for I think 5 weeks prior transplant. Now the doctor said the count is 35 post transplant. That the new meds was working good before transplant, so he wanted to kill the virus. This is why they continue the treatment post tp.

But until they (all tp teams)have concrete evidence want works and what doesn't, I believe this is we are left with the experiment of what works and what doesn't.

SP, no need to apologize, I enjoy hearing all the comments and questions. Most of my questions to the doctors come from everyone here. But I think I got some type of control on this now, thanks to everyone here. But if anyone has any advice or questions for me just type away. I have 4 hours before my medicines and lovenox shot. Thanks again for all the prays, information and support. God Bless Ron and Maggie.
Posted 5/18/2014 12:12 PM (GMT 0)
Good Morning, Ron
I am so happy to see your continued posts. Hope you are having a fine Sunday morning! It was 104 degree's yesterday in Phoenix AZ. We love the desert, so it has been a positive move from a rural, NW state with no hospital without a 3 hour drive. Moving in a crisis is not advised by me...but to be near Mayo AZ and the needed medical care...it is a positive move. We wanted to retire here as snowbirds, but here we are earlier than planned, and here as full timer's. Being close to great medical care is worth everything for us right now.

Do they have you going to in for labs every day? It sure seems a post transplant person tolerates the treatment drugs well. Since Hep C is such a problem for so many after transplant, I sure hope the transplant centers find this works and saves lives and health. Since you had 5 weeks of treatment prior, how long will you continue the Hep C treatment? I forget your genotype.

Big Hugs and one for your Maggie
Posted 5/18/2014 1:22 PM (GMT 0)
Themiz, lets see if I can answer all your questions. First my geno type is or was 3b. The time for treatment is unknown to me , but I believe it's until it gone. I hope...

My first labs are tomorrow at 10am, and my first clinic is on Thursday at 1pm. But I don't think I have labs every day. It's getting hard for them to get a vain. Most of my vain seem to know what is going on, and they take off and hide.

My meds are going good, only thing I have problems with, are giving myself the needles medicine. I shake real bad when it time for that. This thread seems to want to post without me being ready.

God Bless Ron and Maggie
Posted 5/18/2014 7:34 PM (GMT 0)
Thank you Ron. So you were on the HepC meds for 5 weeks prior to TX? Ok, I just have a couple more questions - what liver disease-related symptoms were you having prior to TX? Did you have any ascites? What grade/stage was your cirrhosis? No rush to answer - just whenever you get a chance. I'm very happy to hear that you are tolerating the HepC meds well - I knew we were being BS'd by TGH. Even though Robert is gone, I still need to find answers to certain things. There's some stuff I need to come to terms with, in order to rid myself of some of the guilt and regret I'm dealing with. I'm going to speak with our coordinator in a few weeks about some of my 'concerns' with Robert's treatment - or lack thereof.

Ron, your journey really is inspiring and I'm happy you are doing so well. Like I said before - the success stories really do help my heart. Also, please let us know how your first labs go - I'll bet they're good!

I saw what you said about your veins - Robert had the same problem! Every time he went for labs, they would fill up a balloon/rubber glove with very warm water and he would have to leave it on the back of his hand or arm for about 15-20 minutes - worked every time!

Post Edited (Splashdancer) : 5/18/2014 1:39:16 PM (GMT-6)

Posted 5/18/2014 10:58 PM (GMT 0)
Drinking a lot of water before you go for a blood take helps.
Posted 5/19/2014 1:29 AM (GMT 0)
Ron and Maggie, I have been thinking of you and sending all the healing white light I could muster for your fast and pain-free healing.


It means so much to me to hear your transplant story. Thank you so much for thinking of us during this amazing and exciting yet difficult time.

I will join the crowd with one question. Have you any idea how much prednisone they had you on immediately post transplant and how much you are on now?

I have autoimmune hepatitis, so perhaps the prednisone protocol is different, but I am wondering anyway if you had bad effects from large doses of prednisone.

Congratulations, and take it easy and let your body heal!
Susan
Posted 5/19/2014 4:53 PM (GMT 0)
Splashdance,

I had decomposated cirrhosis of the liver.
HCV from type 3b.
Liver cancer tumor.

Just finished my first labs, 8 tubes of blood, thank god they used a butterfly to draw the blood. Needle was the small one, with the long tube to the cup for collecting the blood. I had to check with the clinic because I had conflicting appointments for Wednesday and Thursday.

Thursday is cancelled, Wednesday at 1pm, is the next appointment.

My prednisone dose immediately post transplant, I don't know, but 5/15/2014 I was on 4, 20mg per day. Now I am 1, pill 5mg per day. It's supposed to change again on 5/25/2014, to 2.5mg per day. And on 6/10/2014 stop all prednisone.
Posted 5/19/2014 6:48 PM (GMT 0)
Ron,

Though you had decompensated cirrhosis, HCC and HCV, you must have been in pretty good mental state to be this good so quickly after transplant. Before transplant Mike was a total mess..could barely walk from place to place and had no idea what was going on. We have pretty clear indication that his HE was so bad he had amnesia for almost a year before transplant. He simply cannot remember really important things...like who came from Salt Lake City, and Germany, and New York, and California to see him and basically to say good bye, give me a few minutes of "normal" time...NO IDEA. No memory.

His med regimen was complicated and he didn't catch on for a while.

You spoke about a tremor and having trouble wth the shots. Mike was insulin dependent for a while (like 4 or 5 months) and could not do those shots 3 times a day...

We had thought when they reduced the prednasone that he would lose the tremor but he has not. It isn't so bad anymore, but get him the slightest bit frustrated and he has to walk away to calm his hands before he continues. Anything fine I have to do now...like tiny screws or putting on his med ID bracelet. BTW we don't order soup in restaurants any more...he he.

Though he got cancer points the last month, he didn't need cancer points, we was that sick just from the other liver stuff!

Glad you are doing so well so quickly.

Are you still pretty much pain free? Mike was more tired and worn out than in pain. He was so much better with a functioning liver that he was much perkier starting the first minute he woke up. But he wan't sending any emails or telling anyone which meds he took when.

Best to you,

Carol
Posted 5/19/2014 10:13 PM (GMT 0)
Mama,

I had the HE confusing thing a couple of times, I didn't like the stories my granddaughters would tell me, so after talking with my PCP, and understanding what caused HE on me, I went out of my way to prevent it. I understand that some people can't do this, but I was one of the lucky ones. Now I was weak and my walks were getting shorter each day, and my sleeping getting longer.

My pain is very minimum. I have got it down to one pill before I go to bed. It keeps me from waking up in the night, and it will last me all the next day. But day 9 post transplant I have alot more energy, I'm much happier now. I can't wait to get home and see my granddaughters. I'm like a new man.

Transplant center just called, they had me increases my prograf from 3 pills twice a day, to 4 pills twice a day. Thanks and God Bless everyone Ron & Maggie
Posted 5/20/2014 10:27 PM (GMT 0)
Hi Ron, Just checking in to say hello! I want to thank you for sharing your transplant story with us since right after your surgery. You do offer much hope to those who are on the waiting list.

I know you must miss your grandchildren, who will surely be thrilled to see you in such great health. Keep doing the good recovery and know you are in my husband and my daily conversation and thoughts. Big Hugs to you and your Maggie,
Posted 5/20/2014 10:41 PM (GMT 0)
Ron,
The sooner you are able to stop taking prednisone, the better you'll feel. I had to take it for a week after transplant and then they stopped it. MGH tries to not give pred to transplant patients. How are you doing with prograf? Are you shaky from it? I'm down to 1 mg. twice a day, but at one time it was 3 mg. twice a day. The less you take, the better, as it can be hard on your kidneys. Stay with it, you're doing really well!
Posted 5/21/2014 10:30 PM (GMT 0)
@retired congratulations on your new liver and how fantastic you are coming along on your recovery! I am a post 5 year LTP and the only meds I currently take for rejection is Prograf 2x daily, I was able to get rid of the cellcept this year. I am on the Solaldi/Olysio treatment and pray to rid myself of hepC to save my "new" liver.

Take Care and watch your lab numbers!
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