report from the Radiance

Joe and Joey and the Radiance Gang have all been having a wonderful time. They charted a 50+ foot sailboat as a group in St Johns and really enjoyed that. Neither one had been on a REAL sailboat since we left the Caribbean so many years ago. I am so glad got to do it in the beautiful, warm blue waters....

They also rented scooters and explored Antigua, got lost a bit so I hear!

The biggest news is that they won the Quest game. Joey made his mom proud if you know what I mean...... LOL That's my son!

Tomorrow is Sea Day for them. They were going to come home this weekend and I told them to go ahead and stay for the duration. Maybe I will get something accomplished next week!

Mary or I will put something on the blog after tomorrow's events...

If you can't get an angiogram.......GO SHOPPING!

After they said, thanks for coming and spending a few hours with us in a hospital gown all wired for sound but we don't need you now.......I got dressed, Mary and I went and did a little Christmas Shopping, bought ourselves some matching jammies for hanging out at home and had lunch! She has been such an angel....we have been having fun. Thank goodness she is here. I would have been very lonely without her. THANK YOU MARY!!!! ;-)

Tuesday back to the hospital for an appt with the Pulmonoligist. He said he was happy to see that my heart and lungs where better than they were while I was in the hospital and proceeded to order more tests including a sleep study...That will be weird.

Wed spent at home catching up. I don't think I got out of my jammies all day. Just lots of phone calls and computer stuff.

Today I left the house at 9am and spent another day down at the hospital....(aren't you sick of the hospital by now??????????????????????????????????????????????????????) Got home around 6pm......

Tomorrow back down for what was supposed to happen Monday. This time with a transfusion first and a possible overnight. Think I will skip the morning diuretics since I won't be able to get up to pee all day....................LOL

Lord, this is a freakin full time job! Thank God I am not feeling sick like so many people in my situation. I don't know how you would get through all this..................or try and work! I am trying to work with a few clients and that is even difficult as I can't always answer my phone or get back to them promptly.

You all have a great Friday....and weekend! Hope you do something fun and festive. Don't forget to tell the people you love how much you do!

xoxoxooxox

So far next week my calendar looks a little easier......Let's hope it stays that way.

I am hoping to get the tree decorated and the nutcrackers up this weekend.

One more thing before bed

I forgot to mention a major contributor to my not just saying *I will be fine, I will see you in 2 weeks* is that one HUGE thing that is evaluated when they go before committee to decide IF I get on the list with UNOS is. Is she compliant? Will she do EVERYTHING we ask her to do? Has she done everything we ask her to do?

If they are going to give me a healthy liver from some family that has selflessly opted to let them harvest organs from a loved one who just passed.....Will the recipient do everything possible to be a grateful recipient and take the best possible care of the new organ which means following all Dr's orders.

So, you can't miss or reschedule an appt or procedure, you have to keep a log of all meds, daily weights and vitals and you certainly don't tell the Dr's to *&%$#@*& OFF, I am going to the Caribbean whether you want me to or not! I would have ended all chances of even getting on the list so here I am........You all know just how compliant I can be.... LOL

Notes from Mary regarding Monday's events

Hi to you all. Here is what happened Monday.
> Had problems at the hospital today. They prep'd Nancy, put IV in, and her blood pressure was
> VERY
> low...110/31...so they did a 'fast' blood analyses. Problem was her clotting factor (INR) (was
WAY OFF (2.2),
> and hemoglobin/platlates were bad too. Since they were puncturing the femoral artery in 2 places
> they were concerned about the blood factors above....so after 2 hrs they opted not to do the
> angiogram.
>
> The purpose of this test was to look at the heart with a contrast fluid to evaluate the
pressures in her heart and how heart valves are functioning. If they had found any
> blockage they were planning to do angioplasty, and if necessary implant a stent....which would
> have meant overnite stay at least.
>
> So the next step is a blood transfusion (platelets, plasma, and whole blood) and immediate
angiogram. We are meeting with the pulmonologist this afternoon and this procedure will probably
occur Friday.
> Worst case is that if they find her heart is deteriorating so quickly due to
> overwork for the bad liver, that she would not survive the 8-12 hrs of surgery in the liver
> transplant operation and she would not be placed on the list. This condition is non-reversable.
Not
> good news.
>
> Also found out that if she does get a liver transplant, they use at least 75 units of blood.
>
I would have put this on the blog, but haven't learned how yet. Love and hugs across the miles.
Mom/Mary

Thanksgiving Nancy throws herself one hell of a pity party!

Yes, it was official. My boys are on the plane on the way to Florida, my cruise critic freaks....(oh, I mean friends) Well, cruising fanatic friends is nicer of which I am a proud member...... and one of my favorite ships afloat the RADIANCE OF THE SEAS.....

I, on the other hand was eating a ciabatta sandwich on my way back up the hill home to spend Thanksgiving alone..... (I told you it was a pity party....you can say.....*oh, poor thing* now)

Actually it wasn't that bad. I felt good about our decision and was happy that at least they were going to get to go and spend time together and I would just live vicariously through them. They promised to keep a journal and take tons of pictures for me.

I did stay home, took a nap with my puppies, watched movies, played around online, thought about writing in the blog.......and ate a Turkey Pot Pie and a baked yam for my dinner....

For my pity party my friends Dave and Aimee.....who was close to celebrating her one month anniversary with her new liver in Texas......generously loaned me some streamers and confetti from the pity parties that they had held over the past few months....... Thank You Dave and Aimee! Btw, Aimee is doing extremely well and will be able to leave Texas to be reunited with her kids and family soon......YEAH, AIMEE!

I made it through Thanksgiving and learned that Mary, just getting off a cruise ship herself, on Saturday would be coming as soon as she could to stay with me, help me and keep me company while the fam was gone. I need to take and post a photo of her and I so you can see my wonderful mother!

I am off to bed now and will try and post some more tomorrow. Oh, I had an angiogram scheduled for Monday which got cancelled. I will cut and paste what Mary wrote as to what happened Monday....

Tomorrow I have another Lung study, a meeting with my social worker, Ben and an ultrasound.

You gotta love friends who make you laugh!

Thanks Lorna!

http://www.youtube.com/watch?v=J5z4Vs26-TI

Alright, Alright.....Sorry folks for the delay... I am back to continue the story.

Well, I am going to see if I can go back and fill in a few blanks but I guess I should answer the first question which is.................................... IS NANCY ON A SHIP OR ON THE SHORE?

Unfortunately, I am home. Not that I didn't stay without some kicking and screaming... (Well, more like trying anything I could to go). It didn't work.

On Monday they said have a good vacation, then got some test results back and called to put the brakes on Tuesday afternoon as I was making final arrangement and packing to leave bright and early Thanksgiving morning. Just NOT FAIR!

First they said they were afraid I would fall into a coma on some 3rd world island. Don't they know there are airports on every island and planes to Miami or Texas? BTW, they have said that every day since I was in the hospital 3 months ago...........

Then they said...and this makes more sense...... That looking at my blood results from Monday, my meld score was still at 24. (remember the meld score stands for mortality end stage liver disease....the scale goes from 6 being not good to 40.....well, REALLY not good) over 20 is a very, very scary number. They don't know why I am up walking around....

They said........that they wanted me on the list as soon as possible and needed my body here to keep going through the testing processes, etc so that could happen.

Just a brief overview of the last month..... I saw Dr Mendler and the Transplant team for the first time one month ago tomorrow. Since then I have had over 20 appointments and procedures. That is 20 times in 30 days excluding weekend and holidays....and I am not done yet. Keeps one busy....

My pulmonary function tests and echo cardiogram showed more problems. If my lungs and heart aren't functioning properly it could keep me off the list permanently as I wouldn't make it through the surgery.

So they want to look into them more thoroughly... Hence more procedures....

My appt coordinator....yes, Marielena controls my calendar now... she makes all my appt's for me. My own personal assistant. My time is hers to plan.....Started booking things for me the next day.

On Wed I am back at the hospital going from place to place then I stopped by the transplant office and tried to explain that the reason that I wanted to go so badly and had hung on to this trip is NOT because I needed another vacation or that I WANTED to go on a cruise....(which they see as one big party and a big reason to drink) but that I had no idea what the future was going to hold for me and my family and I just wanted to spend some time with them, swimming in the warm blue waters, snorkeling, exploring new places, laughing and enjoying each other before whatever shit is going to hit the fan does........IT WASN'T THE VACATION....IT WAS THE TIME I WANTED.............................................

Okay, so we had some decisions to make regarding the cruises, yes 2, back to back that we were scheduled to leave on day after *tomorrow*. We went through a huge array of emotions and the decisions went all over the map. In the end I really wanted the boys to go and get away from all of this and spend some father, son time together.....no sense in wasting the cruise and I felt that I would be fine here. They were only a flight away if I needed them.

So, I helped them pack....rearranged a few schedules. Made sure all the t's were crossed and the i's dotted and we got up at 4:30 am thanksgiving morning and I drove them to the airport. We cried, I kissed them and said Bon Voyage......................................

FUCK

Well, it's MY BLOG and I will swear if I feel like it....

My Doctors just called and my test results are in and guess what they said?

WE DON'T THINK YOU SHOULD LEAVE ON VACATION. WE WANT YOU IN THE HOSPITAL MEETING WITH THE SURGEON, ETC. ETC...

I am so upset I can't even think straight..

All the formal wear is altered and hanging up ready for packing. Flights, hotels, transportation, excursions all arranged... Joe's time off work.... DAMN...

I'll write more later...just had to get that off my chest so I can breathe................

Today is a new day!

3 days and counting!

Time to line up all the last minute details on the to do list. 1/2 of the *stuff to pack* items are on the guest bed for evaluation. We will just gather until Wed then put things in suitcases. Weigh them...(who came up with that?).

Joey comes home today so I need to help him get organized as well. Joe and I got some of our Christmas decorations out and up yesterday. I was hoping to have it mostly done before we left but that isn't looking to good.

Joe just left the tailor's getting his tux adjusted and picking up some last minute Trader Joe's things for our Turkey Dinner tomorrow night.

One thing I want to make sure we do on this trip is something I sorely neglect most of the time and that is getting some really good photo's of us all.

Gotta run...busy day....hugs!

Getting ready for some relaxation and fun with friends and family onboard the Radiance of the Seas

Joe and I had a long talk when we were on the Pearl in the Caribbean last month. We have had this Radiance of the Seas trip planned for over a year along with a few other cruises. One of which was a cruise of a lifetime. A 46 day repositioning Cruise to bring the Mariner of the Seas from Fort Lauderdale completely around South America and Cape Horn to the West Coast so she can start sailing the Mexican Riviera out of LA in 2009. She is to large to transit the canal so has to go the long way around. Needless to say we had to cancel a lot of the trips we had planned including this one. There was ONE cruise that I really thought we could still squeeze in and that I really wanted to go on as we were going to be sailing with a WONDERFUL group of people I met on Cruise Critic. Sounds crazy but we had become very good friends...I got so many calls, e-mails and cards from these people when I was in the hospital and I had never met any of them face to face. We decided to do that one if we could.

We also decided that Joey should join us. He had not been to the Caribbean since we left when he was 5 except for a Jamaican vacation week. We really wanted to spend some fun, family time together before things get really messy and our lives get turned upside down. We will be doing 2 cruises on the same ship. One Eastern Caribbean and then one Western Caribbean. Back to Back sailings. We get to stay onboard while one group of passengers is ending their cruise and the new passengers get on. It is a fun experience. Some of the people on our first trip and sailing with us on the 2nd also. We will stopping at 9 different ports and have lots of things planned. Lots of Snorkeling, Diving (not me, lungs) our group has chartered a sailboat, waterfalls in Jamaica, exploring, etc.

It means so much to me to be able to feel good and have this special time to spend with my family. I am not going to THINK about what has been filling my mind except to listen to my body, eat well, rest when I need to, dance when I want to and enjoy. I told Joey that I wanted to climb the rock wall with him while at sea too.

Sooooooooooooooooooo, I am done with Dr's until I get back and am busy packing for the tropics with some dancing dresses thrown in.

A couple of notes....The scar they will leave me with is horrid...so I bought and will wear bikini's...because I can. I can't be in the sun after the surgery for life because of the anti-rejection drugs and a huge risk for skin cancer for some reason....So there will be lots of sun worshiping as well.

I will be posting notes and photo's from the ship for you and for my journal so enjoy!

We leave bright and early Thanksgiving Morning. I am cooking a turkey dinner for Joey and some of his friends home from school on Tuesday so we can make Turkey Sandwiches for the plane!

Friday's Fun

Friday was a full day at Loma Linda. I had 4 appt's that I ran from one to the next. The first and freakiest was a cardiac echo stress test. Maybe some of you have had one. I have had an echo but not the stress part. It took about 1.5 hours total. First they did the regular echo, then about 3 nurses joined the 2 echo techs along with 2 cardiac Dr's (I think they were interns) and the big chesse Cardiologist. There were 7 people and me in this small room filled with machines and me on the table. If you ever have to have this done ask them to explain a little better as to what to expect. They kind of skipped that part.

Basically they inject drugs mostly atropine into your drip line to put your heart under stress like you are excersizing but you aren't moving while they closely monitor all your vitals and take picturs with the echo machine. They keep increasing your heart rate until you feel like it is going to beat so hard it will pop. My head started hurting badly and I thought I would be sick. All the while they are talking to each other about the images and telling the nurses to take it up a notch more cause I wasn't *quite there* yet!

I wasn't quite expecting my body to feel this way and I was telling them *you know my blood pressure and heaart rate are NORMALLY extremely LOW...are you SURE you want to take it HIGHER????? Well, they didn't really care what I wanted THEY wanted it higher....and they got their way....

Then they give you some more drugs to bring it back to normal...

GEEZ....on to my next appt....

After that I had a date with the nutritionist, my coordinator and on to the Pulmonary Lab to get in a pod and breathe and pant and hold my breath,,,,,etc, etc.
no big deal..I was supposed to get a sonogram also but we rescheduled that.

Both the cardiac and pulmonary said they saw some issues but didn't go into much detail and said they needed to do go over them with the appropriate people and I would get my results later...

Both are very important that I pass as either one can kick me out of the running with my quest to get *on the list*...

Good News

Yesterday, Joe, mom and myself met with Ben, the social worker. The short version is that everything went extremely well. After a lengthy interview he told us that his preliminary evaluation was *good to go*. I have some requests to fill (homework) for him and have to undergo a couple more tests for him then he will support me when it comes to for the committee to meet.

YEAH !! VERY GOOD NEWS!

Tomorrow, a nuclear med Heart stress test, a meeting with my nutritionist and a bunch of Pulmonary tests...

Don't they know that I need to PACK !!!!!!

Good night, sleep tight.

Fun with Telephone Salesmen...

I have other stuff to post but this was to funny to wait.

I had a REALLY GREAT DAY TODAY.. For some reason with the sun shining, I just felt great. I had *fun* appointments today with my hairdresser who flies in once a month from Wyoming, my manicurist who has been doing my nails for about 10 years and I got my tootsies done as well. I got home and everything was just making me laugh...mostly at myself.

Okay, so a call comes in for me. Joe answers it and hands it to me. It is some guy who is from *kitchen connections* He said we met at a home show at the LA Convention Center last spring and did I remember him and was I still interested in remodeling my kitchen and needing countertops. When I responded not at this time and he proceeded to ignore me and push on the way salesmen do...This is what I told him.

*Actually, I have decided to skip the kitchen this year and get a new liver instead!*...Well, he didn't say anything so I laughed....and said...It is about a half a million dollar investment so that will take up most of our remodeling funds this year.* LMAO.... :-) and I was cracking up.... I apologized to him and said I was sorry for being so blunt and hope I didn't offend him...hung up and Joe and I just busted up.....

So, next time you need to get rid of a telemarketer...now you have something else up your sleeve...

I know..kind of sick, but very funny..................

Well, today was interesting!

As you can gather from Joe's post today we went to a very *interesting* talk given by my nurse practitioner. She has worked as part of the Transplant Team for 10 years and prior to this was on the Transplant ICU and recovery floors for 8 years. She is very knowledgeable and told us all kinds of interesting stuff with graphs and PICTURES! Well, pictures and stories can be interesting for most people until you are looking at them and seeing what they are going to do to YOU when they open you up..

Actually the information, yes, all of it...was very educational and she explained everything very well. We talked about the surgery itself, what to expect in ICU, recovery and beyond. Then she talked a lot about the drug therapy that Joe described.

The good news is that my mom is here. She along with Joe and Michelle will be my caregivers post surgery and that is a very big job! Mary will actually be my day to day main caregiver as Joe and Michelle will not be able to be at my side 24/7 like I will need at first. It was so wonderful to have her go to this talk with us and she will be with us tomorrow for our meeting with the social worker who has many jobs but mainly he needs to determine if my support network is defined and strong enough to get me through this. That I am strong enough emotionally. That he is satisfied that I will 100% respect the gift of a new organ that a donor family has selflessly offered, which means taking care of myself. So, we do that tomorrow....

By the way, several people have assumed that I am already *on the list* I am NOT *on the list* yet. What we are doing now is going through all the jumps, leaps and hoops with physical, emotional, financial, etc testing...after I have completed all of the things I need to do....THEN, all these various people get together and my case goes before a committee to decide if I get on the list or not...It will be in there hands to see if I am a good candidate to receive a donor liver. There aren't many organs out there and they do not take the decision on who even has a chance at getting one lightly.

So, NO, I am not on the list YET, but am working towards that goal.

Okay, enough for now except to say.....A HUGE HUG AND GIANT THANK YOU for caring enough to follow along and especially for the e-mails and comments here...I read them all and everyone warms my heart...Keep them coming along with the prayers...

I will have more to say tomorrow about something we are excited about that has nothing to do with this!

Good night, snuggle in and tell someone you love them,
Nancy

Immunosuppressants friend or foe

The body is amazing. It has the ability to recognize proteins that can do harm to itself. This is all good when we are concerned with incursions of bacteria, or a virus even the occasional fungi or mold. Sometimes it cannot distinguish between a foreign protein and one of its own then it can destroy itself. So what happens when we put a new liver (a huge mass of foreign substance) into a person. That persons body recognizes the liver as a foreign protein and mounts a massive attack to reject it. The white blood cell and all it's allies rally to eliminate this threat. Well... we want to keep this liver so we must suppress this natural defense mechanism but not much as to allow the bacteria and its allies to take over. What a dilemma. You thought that once the surgery was over the battle was won but now you find that it has only began. Enter the pharmacologist an the juggling act begins...just enough immunity to keep the body healthy, the new liver happy and the patient alive. This life long symbiotic relationship begins.
This is only one part of the marvelous adventure that Nancy is beginning
To think that that we ( man ) can do this is amazing to me.
Tomarrow we visit the social worker.... should be interesting.

Last minute thought

As I take my night time meds. As I check the refridgerator to make sure there are some *ensure* drinks in there to get cold I reflect to a time not to long ago when I would make protein drinks and watch my carbs and fats and now I drink Ensure 2-3 times daily (god, that makes me feel ancient or really ill although they don't taste to bad anymore!) And I make *green drinks* in the morning. Now, I eat whole grain carbs and good fats, and keep my protein low...

When I chart my morning weight it is not to see if the scale is dropping but hoping it stays the same or goes up a bit...

Life is funny. At least I am good at label reading and food logging!

The newness of life

In order to learn something new you must first accept that you do not know it. To fully understand another person, you must let go of your desire to make blind assumptions and judgments about that person.
Turn down the volume and intensity of your own chattering thoughts, and you can hear the music of life. Stop expecting to see what you've always seen before, and new and wondrous beauty will appear in front of your eyes.

When you continue to perform a task the exact same way you've always done it, your effectiveness cannot improve very much. Be open to new ideas and techniques, and you can vastly accelerate your performance.

If you cynically think you've experienced it all, you'll close yourself off from much of life's richness. If you consider yourself smarter than everyone else, you'll be supporting and advancing your own growing ignorance.

Open your mind and your heart to the newness of life that comes with each moment. There is always more to learn, more to experience, more to appreciate and enjoy, no matter how much you've already done.

With each dawning day, a whole new world of possibilities is born. Allow yourself to know and acknowledge their newness, and bring the best of those possibilities to life.

-- Ralph Marston

Feeling GREAT..

Well, it has ben a few days since I posted but that is because I have been feeling great and getting a lot done. The last 3 nights I have also gotten very good sleep. Only up about 3-4 times.

I have been having a LOT of trouble sleeping for quite a while....Maybe a year. Terrible night sweats which leave me and the sheets yucky wet. I try and change into dry night clothes several times during the night to stay dry and the diruetics of course keep me very busy with runny to the potty every hour or so...add in a bit of worry about whatever my nighttime brain decides to focus on that night makes for a rough night. Which is why if anyone tries to reach me in the morning...well, I might be sleeping because I seem to be able to catch a couple of good hours after the sun starts up...and sleep is important for rejuvination...so don't be calling me LAZY....I am trying to heal....

I had my OB check my hormones to find out if the Big M has decided this is a good time to show up...or it is just my liver that is causing the night sweats.

Anyway, back to I FEEL GREAT! I really do...so, I have been running errands, shopping, cooking, working...booking LOTS of Alaska cruises for people for next summer. Joe and I are spending the weekend together and will be packing up the pool furniture for the weekend...and bringing up the Xmas boxes....Well, Joe will be doing most of that as I am not supposed to lift over 25#....makes me laugh when I think how much weight I used to push/lift in a day at the gym. I think on one of our charity lifting events for special olymics I pushed/lifted over 85,000 POUNDS in about 4 hours....Sounds crazy but the figure is correct...

We are also planning to take one last trip before I can't travel so I think I will talk about that tomorrow...

Also have a plethora of appt's next week. Trying to get it all done before we leave.

If you look at the comments we got one from the infamous Aimee last night! She is doing well and makes huge progress now everyday! Go Aimee!

I am turning in now....Have a great weekend everyone. Let's get ready to really enjoy our friends and family during the holidays, the change of seasons, the sights the smells and have fun decking the halls!

I am not crazy or alone....

This is a comment that Dave who is Aimee's husband left under comments. I don't know how many of you know to add or look at the comments but I had to put it here. It made me feel so much better to read his response....Sometimes you wonder if you are going a little crazy and *is it just me or is it hot in here?* Kind of stuff...LOL

Thanks Dave,


WOW, you really hit a nail on the head there. I have been trying to grip that one also. I have had LOTS of people say lots of things that is very close to that. I know that they mean, "Congratulations that there is a way for you to live longer and beat this", but they say it just "congrats" and you are wondering, did you really hear me when I said my wife could die in two months (or your case would be "I could..")?

I guess it goes to what you are focused on! Wait, did i just connect your two posts together. Crap, I might have learned something about meaning and stuff in school all of those years ago!

Keep your chin up and focus on the possibility of many cruises with your family and all of those sunsets and sunrises that you have yet to enjoy!

Focus

Focus

If you focus on resentment, you'll create many more things to resent. When you focus on gratitude, you'll bring many more things into your life for which to be thankful.
Focus on anger, and you'll continue finding additional reasons to be angry. Focus on love, and the opportunities for experiencing love will greatly multiply.

Focus on life's best possibilities, and you'll move steadily in the direction of your dreams. Focus on the things you truly value, and they grow even more valuable.

Focus on what you are able to give, and you'll greatly expand what you are able to have. Focus your energy, your attention, your interest and your passion on some particular thing, and you can make the impossible happen.

Where is your focus most consistently directed? That is where your life is most certainly headed.

By choosing your focus, you choose your lifestyle, the world around you, and your future. Focus on what is truly good and right and valuable for you, and you will be gloriously immersed in that goodness.

-- Ralph Marston