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Posted 7/28/2011 6:48 PM (GMT 0)
Now that I am listed for transplant, I thought I'd start a new thread...a continuance of my evaluation thread.

After the chemoemoblization last week, I'd checked with the appointment desk by phone and found I had no new appts. scheduled.  So I am getting a nice little break.  However, I got a call a few minutes ago stating I have appts. scheduled for Sept. 6th:  Blood work at 7 AM <groan>, meet with my Transplant Coordinator (TC) at 10:30, and see my hepatologist at 11 AM.  Unless they insert something else sooner, I have all of August free!  Hallelujah!

Also, I had applied for a walk-in shower in my apt. (had my orthopedic surgeon fill out a form) and was told yesterday that it would be done in Sept.  With my artificial hips, it will be easier for me than lifting my legs over the tub...and there's no cost to me.

Hugs,

Connie

Posted 7/28/2011 6:59 PM (GMT 0)
wink   turn wink

Great news!!  The walk-in shower will be fantastic, I'm sure!!  Enjoy your August yeah

Posted 7/29/2011 1:05 AM (GMT 0)
Hi Connie,
Great news about the shower. If possible, try and get a handicapped shower, not a walk in. Handicapped won't have a curb to step over, as opposed to a simple walk in. The curb is where falls commonly take place. Also, make sure that there are a couple of good bars to hold on to when getting in and out of the shower. Acid finished (they look frosted) are the right type. Polished bars can cause accidents, as people tend to trust them and they're slippery when wet (in MA they're not legal). Make sure that a tiled floor is unglazed. Some tile is more slippery than others when water, mixed with soap is in suspension. You may have a prefab fiberglass base, so if that's the case, it should have built in anti slip materials.
Posted 7/29/2011 1:06 AM (GMT 0)

Thanks, Dany.

I found at the online UNOS site that, as of the 22nd, there are 37 people with my blood type waiting for a liver at Mayo.

Although the chemoembolization was done over a week ago, I am having drainage from the site of entry in the groin.  I'll give the Interventional Radiologist's nurse a call tomorrow, though it doesn't seem infected.

Hugs,

Connie

Posted 7/29/2011 1:30 AM (GMT 0)
Connie,

What a nice August to look forward to. No appts! You can rest and get ready for the call.

Good news about the shower too. I like David's suggestion...as I am one who has been known to stumble over nothing while walking.

Emma
Posted 7/29/2011 2:04 AM (GMT 0)
As a tile and stone setter for 4 decades, I have seen pretty much everything that works and doesn't. Curbs are problematic for a number of reasons, not the least of which is tripping over them.
Posted 7/29/2011 3:18 AM (GMT 0)
Thanks, Emma.

David, that's what they are installing (we don't get a choice.)  I was surprised when I saw that's what they installed (the one with the lip) in my 82-year-old neighbor's  bathroom.   There are many people here in wheelchairs.   I do have 3 grab bars.  I think that they take all the tile down, including wall tile.  So they may take the bars out, but I'll have them replace them.  These are the shiney type (I'm not going to the expense of buying my own, so go with what they give me.)  So far, no problem.  I will still use my large rubber bath mat and shower chair.

Hugs,

Connie

 

Posted 7/29/2011 8:31 PM (GMT 0)
connie, i am so pleased you are getting a break from appointments, good news about the shower and you finally got on that list!!!!! i am so happy for you. i have been following your transplant eval every step of the way and been cheering you on from little ol england!. now the countdown begins to your new future. i am so happy for you.xxnatasha.xx
Posted 7/31/2011 3:54 AM (GMT 0)
Thanks so much, Natasha.

The draining has stopped, so I didn't bother calling yesterday.  I didn't feel well today--tummy felt unsettled and back, under left shoulder blade, hurting.  I'm not sure if it is still sides from the chemo or just an "off" day.  But I took it easy and feel a little better this evening.  Heading off to bed soon, after reading a little.

Hugs,

Connie

Posted 8/6/2011 4:53 AM (GMT 0)

I'm feeling much better now--better than before the chemoembolization, so I think my Interventional Radiologist really did zap the tumor as he said he would do.  I have healed up nicely in the groin, too.

I called my TP coordinator today to find out where I am exactly on the waiting list.  According to the OPTN website, there are 33 women currently on the list for a liver and 43 men.  I'm thinking there are probably more male donor organs than female, since men die earlier than women...and tend to be more reckless on the road, and especially with motorcycles and no helmet law.

I have still not received anything in the mail confirming that I am on "the list."

I also wanted to ask that the special blood test for a subtype of 1a be done on Sept. 6th when I'm scheduled for blood work.  If I have this, my chances of clearing the virus with treatment rise exponentially.  Later on, I realized that my TC was probably out today.

I was doing laundry around 7 PM when I got a call back from one of the nurses.   She left a message saying that my coordinator, "Tiffany," was not in today.  Well, my coordinator is not named Tiffany...unless they changed it and didn't notify me.  But at any rate, I was asked to call back Mon.  I don't expect to be at home on Mon.  Going to try to do some clothes shopping, looking specifically for large tops and comfortable clothes post-transplant.  I'll call back on Tues.

My primary caregiver's brother is dying of metastatic cancer, so she has been in GA for 2 weeks.  It's a good thing that nothing is currently going on with me and I don't expect to get transplanted for at least 2 mos.

Hugs,

Connie

Posted 8/11/2011 8:10 PM (GMT 0)
I've been trying to reach my Transplant Coordinator since last Fri., and we finally connected a few minutes ago. I had some questions I wanted answered. First of all, I never did receive anything official in the mail stating that I had been listed for transplant. She said it was sent out on July 18th, but she would send another copy.

I also asked about the subtest for genotype 1a. She said it was done with my last labs and that I don't have the type that would be very successful with treatment. So she said that they also would not give me a hep C liver. That may have me on the waiting list longer.

In addition, I found out that a female can get a male liver and vice versa...if the fit is right. Of course, there has to be a blood and tissue match, too. She couldn't tell me where I am on the list, but said it wouldn't matter because it changes so much. I know that someone who has a MELD of 17 today could very well crash and have a MELD of 40 tomorrow....such as happened with our member David.

I was able to change my blood work scheduled on Sept. 6th to 7:30 from 7. That allows me a half-hour more sleep. When I see my TC on the 6th, she will give me an Rx for a BP cuff and a scale. Those items are required and are considered durable medical equipment. With a prescription, Medicare should pay 80% of it.

I'm sure more questions will arise the longer I'm on the list.

Just as a side note, my urine is normal since the chemoembolization. Prior to that, it had become iced-tea colored.

Hugs,

Connie
Posted 8/17/2011 9:39 PM (GMT 0)

Well, Yay!  I finally got the letter stating that I was listed for transplant on July 18th.  I also received a separate letter notifying me that I must have blood work done every 3 mos. while I am on "the list."  This includes BUN, creatinine, serum electrolytes, glucose, CBC/Diff, prothrombin time, INR, AST, ALT, albumin, total and direct bilirubin, GGT, alk phos, total protein, AFP, alcohol and drug screen (10 panel.)  I'm scheduled for blood work on Sept. 6th, so imagine it will cover all of these, but will check with my TP coordinator to make certain.

Hugs,

Connie

Posted 8/18/2011 1:01 AM (GMT 0)
It's a long journey, but you're through the worst of it. Never had a doubt about your determination to push ahead and get onto the list. I hope other folks on HW pay attention to the effort you expended to get sober, fight 2 different liver cancers and now you will get a new liver and life will begin anew. Great work!
Posted 8/18/2011 2:21 AM (GMT 0)
Well, the getting sober happened a long time ago. I'm so grateful that I didn't have to deal with that on top of everything else. But yes, your point is well taken: Do the work and your life can change and possibly be saved.

Hugs,

Connie
Posted 8/18/2011 4:21 AM (GMT 0)
Yippee glad you finally got It in writing ;) what a relief for you! !!
Posted 8/18/2011 5:43 PM (GMT 0)

The shower installation will be done on Aug. 30th, but it will take a day to dry and for them to clean up.  David, when I asked why they don't do it as a roll-in shower, I was told it's because there's no drain in the middle with sloping sides under the tub.  They are going to use the existing plumbing.

Blonde, thanks.  Yes, I wanted to see it in writing that I was listed!  smilewinkgrin

Hugs,

Connie

Posted 8/18/2011 8:37 PM (GMT 0)
Well August 30 th is a great day :) lol...My 35 birthday !!! So we will both be celebrating :)
Posted 8/18/2011 8:51 PM (GMT 0)

Oh, you're still a young thing, Blonde!

Happy Birthday in advance!  (With my memory these days, I might forget!)

Hugs,

Connie

Posted 8/18/2011 9:41 PM (GMT 0)
Well Thanks in advanced ;)
Posted 8/18/2011 10:14 PM (GMT 0)
Hi Connie,
Not trying to get into a big tile discussion, but there are pre made shower bases that have drains in the center, or at one end, so they'll match up with plumbing already existing from tubs that have been removed.
Posted 8/27/2011 12:04 AM (GMT 0)

David, they're probably trying to avoid extra expense.

Latest news:  I got a call back from my TC.  All of the required labs will be done on the 6th and I can continue having them done there every 3 mos.

Today, I received 2 Rxs in the mail from one of Mayo's hepatologists:  One for a BP cuff and one for a scale.  If I can't get them filled at Walgreen's, I'll send them to O'Steen's, which is my specialty pharmacy for post-transplant meds.

They changed the date of my shower installation to the 31st.

My urine has turned from normal light yellow to iced tea color.  I feel about like I did prior to the chemoembolization, so I think the tumor is growing.  I've been having some upper left quadrant pain that is pretty constant.  Not sure if it's ulcers, tumor, or liver related.  Annoying, but bearable.  I have little energy.

Going by the online OPTN online site, I am one of 15 females with Type O blood on the list at Mayo.

My primary caregiver was in NC for several weeks, waiting for her brother to die of cancer, which he did.  She is now back here in Jacksonville, FL.  My secondary caregiver is still recovering from his health setback, but is getting stronger every day.

Hugs,

Connie


Posted 8/27/2011 3:43 PM (GMT 0)
connie, sorry to hear you are not feeling well. you said you think the tumour maybe growing, what will happen if that is the case? do they treat it again or do you have to sit it out untill you come up for transplant? if they treat it again does that set you back for transplant?
thinking of you.
xxnatasha.xx
Posted 8/27/2011 6:52 PM (GMT 0)
Just checking in to see how you are doing. After the second chemoembolization, Dean's scan was postponed a bit just in case the tumors started growing back so there wouldn't be any delays. His radiologist was the one who said we just need to get that liver out of there ASAP. Florida seems to have one of the shorter wait times. Dean was listed at the beginning of July, 2010 and had his transplant August 8, 2010. Just about the time he thought he would never get one, they called.

Dean got a huge "gift bag" from Walgreens at the hospital with a scale, blood pressure machine, etc. You might want to ask before you buy all that stuff. It was from the Walgreens near the transplant hospital.

I hope you get your liver soon!

Linda
Posted 8/27/2011 7:06 PM (GMT 0)

Natasha, they have planned for me to have a scan in mid-Oct.  If the tumor has grown significantly, they will do another chemoembolization.  It will not affect my impending TP...may actually get me more points.  However, I'm going to ask on Sept. 6th if I can get the scan sooner.  Their position is that it takes a full 3 mos. for the chemo to do its work, so even if the tumor has grown they may want to wait until Oct. to do treatment again.

Linda, thanks for the tip.  I haven't heard anything about Walgreen's giving gift bags.  Mayo Transplant Center just told me I have to pack a BP cuff and scale to take to the hospital when I get THE call.  Medicare will pay 80% and I also have Medically Needy as a secondary insurance.  However, I may need to get these items from O'Steen's, my specialty pharmacy.  They could deliver them along with the month's meds they will deliver to the hospital post-transplant.

What was Dean's MELD when he was transplanted?

Hugs,

Connie


Posted 8/28/2011 2:46 PM (GMT 0)
thats good news that it will not affect your wait on the list. lets just hope it has not grown and you can avoid any more trials before you get your transplant. fingers crossed!. wishing the best for you connie, you brave soldier!!.
let us all know what they say with regards to bringing the scan forward.
wishing the best for you connie.
xxnatasha.xx
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