My Liver Transplant Evaluation

connie, hope you are doing ok? i have been thinking of you often.xxnatasha.xx

I have been beyond exhausted. I think the way they schedule the appts. for evaluation is their way of testing us to see if we have the fortitude and compliance necessary to go through transplant. At least that is what I think.

It has been very, very difficult since I live alone and have nobody to make dinner for me after a long day, or throw in a load of laundry for me, or wash up that stack of dishes I left last night because I was too tired to do them. And between all this, I try to come here for a bit...though lately it's taken such a negative turn I almost dread to see the latest posts. I have been too darned tired to even keep up with this blog.

Carol, has a tornado EVER hit up there before? I know I couldn't believe it when I heard it on the news. Thank goodness Mike's daughter was safe!

Natasha, thank you for thinking of me.

Now I will try to recap the past 2 days. I had 4 days away from Mayo and tried to get some decent sleep, but I had so much to catch up on around here (phone calls, e-mails, laundry, etc.) that Wed. was here all too soon.

DAY 9 - June 1st, Wed.

ULtrasound of the Carotid Arteries: I had to get up at 7 AM to get to this appt. No contrast used...just that slippery stuff on my neck. From the sound of the blood flow all seemed okay. The easiest test yet. I didn't even have to get undressed.

I had more than 3 hours to wait for my next appt. I went to the cafeteria for coffee (which I almost never drink) and got some scrambled eggs and a strip of bacon.

Psychiatry Transplant Consultation: I tried to get in sooner, but there were no cancellations and she was also running behind. I had to fill out 4 pages of questions in the waiting room. There were questions about family background and my alcohol and drug use, plus questions to determine if I was depressed, bipolar, etc. LOTS of questions. Answering them kicked up old memories and was uncomfortable. I want to leave all that in the past because, as my signature line says, "That was yesterday and I was a different person then." I don't really want to close the door on it, as my experience can help others. But along with all the family history of suicides and alcoholism, it was a bit much. And I was very tired. This was a female doc and she was scribbling like crazy as I talked, but I hope she didn't think I was crazy. Actually, it should score points for me...all that I've been through...as I've survived it and overcome it and came out of it all better than I was before. I'm a survivor, for sure.

I had to be downstairs by 3:30 PM for my van ride. But of course it didn't show up until after 4 PM.

DAY 10 - Thurs., June 2nd

Up at 7 AM again. They only scheduled one appt. for me today. Which is rough because with the van service, I spend hours waiting and traveling.

Infectious Disease Consult: I was called in 20 min. late, only after I'd complained to the front desk that I had to be out of there by 11:30. More questions about illnesses, infections, surgeries, when I've taken antibiotics, etc., etc. This doctor had zero bedside manner. Obviously focused on the science and not the person. But I'll take skill over personality any time. He was very efficient. He told me if I had a cat, someone else would have to empty the pan (there is no one else.) Then he amended it to say I could do it if I wore a mask and gloves and emptied the pan outside. Well, that's not happening because I'm in a strict apt. complex, not a house. And he said this would be for my entire life after transplant. Well, I have to say that if I get past 2 yrs. or so after transplant, I'd be willing to mask and glove myself and take the chance. I miss my cats of 20 yrs. very much and have been hoping to have another down the road. I'm a big cat person. Anyway, he went on to cite all the things you have to be careful about or avoid post-transplant.

Then he had me get up on the exam table. Took my BP and temp. Oh! I was weighed earlier and had lost 2 lbs. thanks to all the walking and activity and fasting the past 2 1/2 weeks. I'm not eating as much either...too darned tired.
He felt my lymph nodes (with quite a bit of pressure), listened to my heart, talked about my Raynaud's disease some, asked some questions, etc. Then, sitting in a chair again while he told me he thought there were no issues with infection as far as transplant. He did want to give me a hep A vaccination (which I'd mentioned several times to my primary care doc, but never got), a herpes zoster vaccination, and suggested I get a pneumonia shot before transplant (I had one 4 years ago, but he said it's best to get it before transplant than after.) I asked when he planned to do this and he said it could be done today. I told him I had to be downstairs for my van ride in 5 min., so he said I could have them done when I return on the 9th.

Of course, when I got downstairs, I waited an hour for the van. Called twice and was given excuses, but it finally showed up.

Now I get a break--hopefully--until the 9th. That will be a very full day, running from morning until at least 5 PM. I know I will be really tired and don't want to have a repeat of the van problem from today, so I've already given a heads-up to my neighbor about my needing a ride home that day.

Have to go to the drugstore and grocery shopping tomorrow, but after that I'm going to try to get as much sleep as possible.

Mer, I went from a MELD of 6 to a 22 when I was diagnosed with the new cancer.  But I had to ask about it to get the info.  I don't know whether I will get additional points at this time.  I will find out when I see the transplant coordinator or my hepatologist next Thurs.  I've read that for every 3 mos. on the waiting list, you earn extra points.  But I'm not even on the list yet.  It could be that they will give me additional points for only having one liver lobe remaining--but I would think they would've done this already and they didn't.  I'll know more next week when I get the results of all the tests and labs, etc., and find out if I am going to be listed.

Hugs,

Connie

Hi Connie, Just wanted to drop you a line to say thankyou for this thread as Michael has told me he won't appear here anymore. I'll drop in from time to time . Hope everything goes well for you ,we will email you . Take care ,
Karen

Thanks, everyone!

Karen, so glad you are still posting.  I'm hoping that this thread can be of some use to others facing transplant or wondering what transplant evaluation involves.

I called the specialty pharmacy I'll be using a little while ago.  Between Medicare, Medicaid Medically Needy (share of cost), and my Part D prescription insurance, my out-of-pocket expense will be fairly low.  Right now they want me to find out what my share of cost is with Medically Needy.  She has the number for me to contact them, but will have to call back with that info tomorrow.  Once I find out the SOC, I will proceed in setting up an acct. with this pharmacy for post-transplant meds.  This is information I have to put on a form and hand in on Thurs. to my Transplant SW.

Hugs to all,

Connie

hi connie, try to take it easy, leave the things that will wait and slowly go at the things that wont. im not great with advice but you have really been through it recently and you deserve a break. as i said in another post im sorry to hear your friend is not well, i hope he gets well soon. look after yourself and rest as much as you can.xxnatasha.xx

Thanks, guys.  I finally got the ratatouille in the crock pot and cooking.  It seemed to take me forever to clean and chop the veggies.  I'm in slo-mo these days.  Will tackle laundry tomorrow.  Thank goodness my cleaning lady is coming on Mon.  I only have her once a month to thoroughly clean the bathroom and vacuum all my wall-to-wall carpet, but it's a big help.

 

Hugs,

Connie

Laundry is done and put away.   The ratatouille is delicious.  I froze 5 batches of it and the remainder I'm eating with multigrain bread.

My primary caregiver is still in the hospital.  Not much done on the weekend.  He is still tired and weak and said he had a bad morning Sun.  He was complaining of dry mouth, which I'm sure is caused by the meds he's getting.  Hope to know more tomorrow.  Secondary caregiver will be back from TX in a week.

Hugs,

Connie

hope your c.g. is feeling better soon connie, must be an extra strain on you too. fingers crossed for your results all being what they need to be! last stretch now and you will soon be on that list!!. good luck connie, thoughts and prayers are with you.
xxnatasha.xx

Connie-I will be sending you positive thoughts and good vibes for a successful and smooth visit to Mayo tomorrow. Rest well tonight.

Emma

Connie,

Sounds like the finish line is coming closer.

Was glad to hear that a cancer intervention is to be scheduled soon.

We were at Jackson Post Transplant Clinic today ourselves.  All is well with Mike. They took his staples out -- 6 weeks.  He had some stitches out too.  Some of them bled a bit...he still bleeds for a while, so that is bandaged again.

They are checking his viral load to keep an eye on that every so many times.  Not sure how often.

The long trips make Mike very tired. He slept 2 hours this afternoon.  I get tired too with all the driving.  Too bad we didn't live closer to a center like you do.

But who knew!??? back then we would be involved with all this?

We are going to try to hit the sack early tonight and stay in our PJ's a long time tomorrow.

Hugs,

Carol

 

Debbie, there is a Shands up here, but they don't do transplants.  And after the mess they made of my hip replacements, I would never allow them to do anything invasive again.  Well, except for primary care doing a Pap.

I go to Mayo here.  I've always been seen in their Transplant Center, since the time I was first diagnosed with liver cancer.  I've been under their care for 5 yrs.  I really think they are the best--and certainly in this area.  My hepatologist is the same one I've had for 5 yrs., as is the Interventional Radiologist who will do my chemoembolization.

I hope they don't do the transplant TOO soon, as my primary care provider is in the hospital himself and my secondary caregiver is out of state on vacation.  She should be back here Mon., though.

Carol, I know Mike is relieved to have those stitches out!  I do wish you didn't have so much driving to do.  That trip has to wear both of you out.  Wish I could rest up tomorrow, but I have to go to the P.O. and grocery shopping.

Hugs,

Connie