Getting closer

Hi Everyone,

This seems like such a slow and long journey up to this point. I have been so so fortunate to have had time on my side so far. Because of various reasons, it has taken a long time to get to the point of evaluation. I'm still in the process, but almost there. Actually, last week (after some good advice from someone), I pushed a little harder to get the last things finished up. It has been about 2 months of going back and forth to have this test or that test done. The last thing I did was the caregiver class. Really backwards huh?

I was going to post earlier today because I was having nervous jitters that they were going to finally present my case tomorrow (yay!). But, I got a call from the coordinators asst. at about 5pm, and she told me that I have to have current blood work done. (I had it done very first thing 2 months ago when the clinical process started). Do they take the 25 vials again like the first time? I am going tomorrow (a local test site, not the clinic).

Maybe some of you could help me with another question or two? Would my coordinator do it without those labs? Probably not huh? Once it's presented, about how long does it take to get a response? (That question should probably be in my case - When should I call them?) After that, it goes to your insurance company and if they ok it, doesn't it take 10 days or something for unos to respond? I should know the answer to these, but I think I spaced out during that part.

I keep reading, reading, reading all of your experiences and knowledge on this forum. It has helped to me so much to this point, and I thank you for that.

Eyes
Meld 23 hospitalization Jan 2013
18 at 6 months of sobriety
20 as of 7-8 weeks ago

Post Edited (eyesRopen) : 6/10/2014 6:27:20 AM (GMT-6)

Eyes,
You are alcoholic cirrhotic. This means you will have random labs pulled, and weekly in some cases. My husband is non-alcoholic Hep C, but they still could ask for random bloods, and we would go straight away. He has labs done at Mayo Clinic and the results are back within hours. I have a patient account for themister, and see the labs and notes as they are posted. Right now, he is notified by phone every three months or so. Themister goes to Mayo every 3-6 months for various testing, labs, and to talk with someone on the team. If he winds up in an ER, (and he has, twice this last year) I call the transplant coordinator so they can work with the hospital if they need to transport . We know at any given time, he could crash.

One thing I really need to mention. Compliance. I have no idea why you would even think about questioning a blood draw. This will be your new normal. If you are not compliant before acceptance on the list, it is unlikely you will make the list. No, you will not get on the list without the blood they ask for. And this is your life, as you are well aware. In this house, we don't bother to ask what they are testing, just grateful they are keeping a watchful eye.

Your question on how much blood is drawn? A lot. Every couple of months right now for my husband. MELD being higher, bloods are more often. You adjust to it, eyes. You have no choice if you want a shot at a transplant. Your last MELD of 20 means you are close to transplant in FL.

My husband had his eval July 2-5 2013. He was presented the following week. He was accepted by Mayo July 11, 2013. The coordinator called him with the news. UNOS letter followed in a few weeks. I could look that up. As for the insurance. Mayo had to approve that part before themister was given an appointment for eval. We lived in another state than Mayo. There was no transplant center in the NW state we resided. Medicare insurance was not accepted, but one product in AZ Medicare was. So... we moved.(We were going to snowbird eventually in AZ anyway, but this was moving in a crisis...and not advised!). We had themister's insurance changed to an in state Medicare Advantage plan that Mayo accepts, as do the other transplant centers here. Hope that helps somehow.

You do whatever it takes if you want a shot a life, eyes. You have come a long way and are lucky to live where they transplant at low MELD's. Big Hugs

ERO,

They won't need to take the 25 vials again. Some of the stuff they did at the beginning are for immune system details and such. They will likely do the CBC, CMP, and Liver stuff. Likley your viral load and the cancer markers.

If you were at death's door at this point, they would be more hurried. You have been more stable for a bit and the MELD has been lower. This is the same course Mike had. 26 at initial appointment, 17 with sobriety and then it crept up again.

Take one of Sandia's deep breaths. You are getting close.

They do labs in Pompano on Sample Road for TP, can you go there?

Best,

Mama Lama

Once I was in the transplant program, most of the time they would take 4-6 vials of blood. Every now and then it would be an extra vial, if they were checking for ammonia. Those were obvious as the tech would come in with a glass of ice to protect the sample. My lab techs always took an extra vial, just in case. There were a couple of times when it saved me from having to go back in the following day.

It's a good idea to hydrate before having blood taken.

It's hard to have patience when you're not feeling tip-top....but do try to relax for your own heart health :)

Just because you're not "dire" yet, doesn't mean you can't come and ask questions or offer your take on things that you have experienced. Some of us are caregivers like myself, others are pre-transplant and still others, post-transplant. We all have different experiences to share, it's why we're all here, so post away!

Peace, Mae

I called the clinic to check and make sure that they got the bloodwork from Tuesday, and if there was anything else that I needed to do. My coordinators assistant told me that I was listed yesterday. :)

She gave me a few tests that I will need in August - CT & EKG, and set up a standing order for meld labs every month.

I am very blessed. Wow.

Eyes

Eyes, Such great news! Thank you for sharing that with us. You are now in the "waiting" bunch ; ) Truly, just so happy you made the list. Please don't be a stranger. Big Hugs

Good for you!

Hello all,

I am not clear on this and need some help with clarification please.

I went to my GP last week and he wants me to see a cardiologist for the murmur that I have. I knew I have had one since late 2012, and have been cleared by the cardiologist at the TP center for the surgery, but that's all that's been said. It came up in the evaluation, but it was kind of like - "oh, you have a heart murmur - did you know that? I say "yes" and that's been it. So do I,

-- do this through my GP - to his recommended cardiologist? (not affiliated with TP hospital)

--call TP clinic and ask?

If I go through GP, do I let the TP clinic know?

I know that this may seem like a no brainer question to most of you but, there are times when I feel like my brain has gone on vacation - like with this. :)

Thanks!

Hi ERO...

Mike's case is quite like yours...long standing heart murmur (aortic stenosis in his case).

Hep C Genotype 1a.

Meld score in the mid 20s.

Listed Feb 2011.

So...the issue was will the aortic stenosis stand in his way of transplant.

The Transplant hospital required a cardiac catherization prior to transplant and cardiac clearance. He was sooo very nervous. The cath was ok and the cardiologist who works WITH his TP guys gave him the all clear.

He still sees the same cardiologist and it has been over 4 years since TP and the murmer is still there, but Mike is only milldly symptomatic...huffing and puffing up stairs, for example, but he recovers quickly.

Mike has had 3 surgeries post TP, two shoulder rotator cuff repairs and a huge incisional hernia repair. He has required cardiac clearance each time....and TP clearance as well, as the TP guys are #1 in all decisions...like it is THEIR liver he is "borrowing" and they get final say. Ha Ha.

Mike has still not had the valve replacement surgery that is waiting in the wings.. The cardiologist reluctant to do the surgery as a scheduled as there are risks that are serious...especially post TP.. When/if Mike's aortic valve has refraction numbers in excess of ??? (I forget the numbers), they will schedule as it could be fatal if not repaired at that point. Very conservative cardiology group....I am glad. Mike also had some mitral valve issue AND uncontrolled hypertention. He takes his BP twice a day and sends his results in an excel sheet ever two weeks to cardiology and they fuss with his BP doses as needed.

BTW, Mike has recently cleared his Hep C virus on Sovald/Olysio and added additional exercise to his regimen....15+ minutes on a stationery bike twice a day...and his BP has done down a lot...the treatment or exercise or both? Who knows...he is happy.

This week Mike found a second incisional hernia near the bottom right of his scar....so he will face that surgery at some point as well...that darn new liver has been trying to escape since May 1, 2011!!!!

Good luck...I agree with David...work through the TP guys. My email is in my profile, contact me and put Healing Well in the subject line so I know it is not spam.

Hugs,

Carol