It Will Take a Village to Recover from a Transplant

I'm going active on the transplant list on Monday. There are only thirteen candidates on the list and my allocation score puts me near the top of the list. I don't expect a long wait. In the meantime, life goes on. Joe will keep working and keep up his travel schedule. If I get 'my call' while he is traveling, Alex will take me to the hospital and Joe will travel to Minneapolis ASAP and will be there before I'm out of surgery.

I will spend about a week in ICU learning to use my new lungs. I expect to spend 2 - 6 weeks on the unit on 6C, in a private room, getting some strength back, making sure my new lungs work, and generally recovering. I will have a feeding tube for three - four weeks and I hope that comes out and I will 'learn to eat' again. I will be doing pulmonary rehab under special monitoring conditions: walking on a treadmill with O2 and an oximeter to make sure I stay oxygenated. I won't have any high pressures in my lungs preventing blood flow and oxygenation of the blood; however, I will probably need O2 for exercise for at least a few weeks.

Then comes the challenge and joy of returning home. I know I will be so happy to get back to my house and some routine. Joe will be over the moon to not have to drive into the city everyday. When I return home the big challenge will be: I cannot be alone, for even 5 minutes, for the first 3 months. I will not be able to drive. I will be able to tend to my basic grooming needs and be independent enough to take care of myself. I plan on being able to cook, to sew on my quilts and take care of my plants. During this time, Joe is going to attempt to continue to work; it should be fairly easy – he works from home in his dungeon most of the time. His traveling is sporadic. But here is where the village comes in.

Joe and I will need some help to get through those 3 months. The poor guy needs a break from me once in a while, to play tennis, workout, to get his work done without worrying about me.

I will need:

Rides to Pulmonary Rehab
Rides to Clinic
Someone to stay with me for short periods during the day so Joe can play tennis or just get away.
Someone to stay overnight in a comfortably appointed suite at Chez Auzenne/Levitch when he must travel.
Alex will be available for overnight stays on occasion; however, he is in school (finally!) and that takes priority for his daytime work.

I will work smarter, not harder, for things that I can: I am accustomed to shopping online for everything from groceries to household supplies to shoes and clothing so that should not be a problem - I will plan to continue that. So I would only need help getting groceries into the house and put away.

Joe's idea of cooking is opening a can of soup. I had to teach him to add water to condensed soups; but I think we have that under control. I love the idea that I will be able to cook again, but I know that will take some time, so we will need some meals that can be easily prepared.

Alex has volunteered to take Sydney for as long as I need him to. She is a wonderful snuggler, but until I am able to take her outside, she will have to stay with him.

And that is the purpose of this blog entry comes: I am doing something that remains very difficult and awkward for me: I am trying to ask for your help. I'd like to have a list of willing volunteers who are able to help me out, what they are willing to commit to, so when I do ask for help, you probably won't say "No." I think that is what one of the main reasons I don't ask for help: I'm afraid you'll say no.

If you are willing and able to commit to anything from a couple of hours every other week or up to an overnight stay on occasion, please let me know. I'd like to compose 'a plan' that I can put in place when I return home. A friend asked if there was someone I trusted to coordinate it all – so if you are out there, I will trust you.

A summary of tasks that I will need assistance with:

Rides to Pulmonary Rehab (Bloomington to Southdale) 3x a week usually around the noon hour.

Rides to clinic (Bloomington to UofM various times and days of week.

Help with groceries (once a week, usually Monday or Tuesday)

Meals for Joe & Vikki

Staying with me for a few hours any day of the week. If you play cribbage, it's a bonus.

An occasional overnight stay in a comfortable suite at Chez Auzenne/Levitch -- I may need help with changing the sheets.
Rides to Lifetime Fitness (106th & Morgan to 98th St & 35W)
Help with laundry

Any other ideas I haven't thought of?
Thanks in advance for your help and support – we couldn't |
do this without you.

Jumping Through Hoops

The transplant team has run out of hoops for me to jump through. The last hurdle was a colonoscopy. Given my age, they required one – and, you can't blame me, I've been avoiding it because who really wants to go through that prep? Well, they decided the most expeditious route to completing the test would be to do it as an inpatient; and since I needed to remove a few pounds of fluid, one last hospital admission was advised.

When I arrived on 6C, it was like old home week. My angels of mercy got to work to move me into a private room ASAP (I love these ladies). I started the prep on schedule and basically spent the night in the bathroom. Friday's test itself was uneventful and I was deemed clean with no hurdles to being listed for transplant. Finally.

Dr. H. stopped by that afternoon with the official good news: I would be listed on Monday with a reasonably high allocation score: about 45. You are not on the list unless your score is 30, and 45 is a high, but healthy allocation score. I'm not so sick that I won't have the strength for a transplant, but I'm sick enough to say survival for more than a few more months is doubtful.

We talked a bit about what I should expect after transplant. I am mentally prepared to have a feeding tube for 3 -4 weeks post transplant. This is a safeguard that I won't have any reflux into my nice new lungs. They do it for about 20 - 30 percent of the surgical cases.

After transplant, my diet will change. I won't be able to drink alcohol – no big loss, although I really do love my interesting red wines. Cheeses - no Brie, Feta, Caembert, Blue, or Gorgonzola. No cold deli sandwiches. No sushi, hard-cured salami, no lox and no miso products. Nothing I can't live without.

The trouble with teaching hospitals.

Where do I begin. The fellows are arrogant and think they know everything. The new residents on a cardiac rotation are even worse.  I've learned to say no fellows in the cath lab – This after a fellow made 5 attempts to enter my vein on the right side and 1 failed attempt on the left side, before the attending took over. During my angioplasty, they went through my wrist which is a more complicated way to enter the artery. I remember the fellow annoyingly attempting to jam the catheter through my artery before the attending finally took over and saying it shouldn't be that difficult. I try to be cooperative, afterall, the doctors have to learn somewhere. But there is a limit to my patience.

Residents try to treat me and I'm a very complicated case. I've had to learn to say no to their recommendations for treatment. Case in point: This last admission, they wanted to put me on a Bumex drip to get rid of some of the fluid I'm carrying around. You can read about my experience with Bumex here. My response: "Just shoot me now." It was then decided that a lasix IV with a bolus dose would work just as well, and cause less pain. Today, they came to get blood draws and refused to use my 2nd lumen. I sent them away and said "That's the only way you are getting blood from me." It's kind of scary to think that I know more than most of my care givers about what I need and do not need; but I'm glad I have the confidence to speak my mind and that the attending physicians usually listen to what I have to say.

Nothing to Fear...

So, first of all, let me assert my firm belief that the only thing we have to fear is fear itself -- Nameless, unreasoning, unjustified terror which paralyzes needed efforts to convert retreat into advance." ~ Franklin Delano Roosevelt 

For the first four years of fighting this disease, I operated with confidence. I learned a very complicated pharmaceutical regimen to help manage my disease and I mixed my IVs every 48 hours without fail. Sometimes a little glitch, i.e., forgetting to turn the pump on, forgetting to open the clamp, but never for more than a few minutes.

I learned that when I feel like I'm going to pass out, I should take it seriously and sit down immediately; not wait until I walk over to the couch, immediately. This will likely stop a syncopal event, or at least I won't further injure myself by falling down the stairs, or doing a 'faceplant'.

I exercised as much as I could. Typically hitting the treadmill 4 or 5 times a week to keep my muscles in condition which helps with oxygenation. I did everything I could to minimize the impact of this disease on my life and I did it with confidence and aplomb.

Today? Because of the events of the last month, I find myself paralyzed with fear. I'm afraid to go shopping for plants by myself.  I'm afraid to go to the grocery store. I'm afraid to run errands Will I get short of breath and pass out? Will I run out of oxygen? Will I not be able to finish what I started. I always feel a little thrill of victory when I accomplish something.

I'm afraid to take a shower. Will my Hickman catheter just fall out of my chest again?

I'm afraid to encounter steps. Will I be able to make it up all the steps to get where I'm going? If I sit down, will I have the strength to get up?

I'm afraid I will do something stupid with my medication – the other night I was without Remodulin for 3 hours due to my own stupidity and not thinking clearly. Had Alex not waken me up when he did I'm not sure what would have happened.

confidence [kon-fi-duh ns]

noun

1. full trust; belief in the powers, trustworthiness, or reliability of a person or thing: We have every confidence in their ability to succeed.
2. belief in oneself and one's powers or abilites; self-confidence; self-reliance; assurance: His lack of confidence defeated him.
3. certitude, assurance: He described the situation with such confidence that the audience believed him completely. 

It's fairly obvious, to me, that the events of the last month or so, have utterly destroyed my confidence in managing this disease. Hopefully, with no more events and some smooth sailing from here on out, my confidence will return, because being paralyzed by fear is such a foreign notion to me – I can't let it rule my life. Shopping for plants. Getting groceries. A successful outing to the Twins Game (with accommodations). Getting all my flowers and herbs planted. I will savor the thrill of these victories, no matter how small; and hope the days of the agony of defeat are behind me.

81 days

3 x 27 = 81 equals almost 3 months equals an hellacious long time.

Joe tells me that it takes 3 days for every one day spent in the hospital to get your strength back. For me, that is 81 days. In the meantime, I am as weak as a kitten. No. I'm weaker than circus lemonade. Weaker than my mother's coffee.

I still struggle with the stairs. I need every support I can find to make it up the 4 steps in the garage to the house. I do those stairs at least twice a day and they haven't gotten easier yet.

Yesterday, my pup, Sydney, left me a present in the closet - she barfed up her breakfast (dogs are so much fun). I tried to leave it until my baby sitter came to help me, but I found myself almost stepping in it over and over. So. I did what a normal person would do, I grabbed my rags and my Pet Enzyme spray and got down on my hands and knees and cleaned up the mess. And there I was: on my hands and knees in the closet and I couldn't stand up. Help. I'm cleaning and I can't get up. Totally humiliated, I crawled to the bathtub and used it to support myself to get to my feet.

All my usual go-tos for fitness fail me and I feel lost. I can't do weights. I can't do any machines. I can't even walk on the treadmill, yet. I can do chair yoga. I can walk around the house. I go downstairs to work on my quilts and slowly make my up the stairs a couple of times a day. I ask for help. A lot of help. And anyone who knows me well knows that that is the one thing I've always struggled with. My mother complained all the time: "You never ask for help. Ever since you were two-years-old, you want to do it yourself!" Joe always asks me do I need help? No I don't "NEED" help - I'm not helpless, but sometimes, I want help.

One week out. 3 x 27 - 7 = 74 days. Equals 2.4 months. I wish I knew a way to make it quicker.

In other news:

• I received the call yesterday about 6pm. My case was discussed at the weekly solid organ transplant meeting and I have been 'green-lighted' to be listed for a double-lung transplant. I still have more testing - none painful or invasive, that needs to be done and maintained while I'm listed; however, none of that gets in the way of 'getting my call.'
  
• Joe has delivered my Spike quilts to the kids - one for mom and one for dad. They were each delighted with their very specially designed quilts.
  
• I'm hoping for a very quiet weekend with my son, Alex. I enjoy spending time with him - he has very interesting viewpoints on all things political and we have some lively conversations.
  

Thank Goodness for Xfinity On Demand

Yes. It's true. I slept through the finals show of Dancing With the Stars. Joe woke me up at 10pm and told me I slept through it and asked if I wanted to know who won? Of course! I want to know who won. So glad for Rumer & Val - they've been my favorite for many weeks.

Here is a litany of the various injuries to my body this last week.

• A 1/4 inch hole with a huge bruise on my hip from the bone marrow biopsy.
• A 1/8 inch hole in my upper left arm for the temporary PICC line I had.
• A 1/4 inch hole in my neck with associated soreness from the Right Heart Cath.
• A 1/4 inch hole in my neck that is super-glued close for the tunneling of my new Hickman.
• A 1/4 in hole in my right wrist from the angiogram.  I'm wearing a huge splint on it to 'remind' me not to use it to open doors, lift things, or carry more than 5 pounds.
• A healing hole in the right-side of my chest from my old Hickman catheter.
• A new hole on the left side of my chest for my new Hickman catheter.
  
• And in the TMI, adding insult to injury department: They had to shave my groin for the angiogram. Really?

I honestly hope I can have a break from all the testing. I don't want to see any doctors or nurses until my next scheduled appointment with Dr. P.

The good news is that I got a B+ on the angiogram. That is, my coronary arteries are as expected for a 58 year-old Minnesota farmgirl (butter, cheese & egg eating carnivore). That was the last hurdle for my transplant evaluation. As far as I know, there is nothing to stand in the way of being accepted as a candidate and being listed on Thursday. When I get that call, I will definitely be doing the happy gopher dance.

Back to Normal?

Well, waking up at 4 a.m. and waiting for labs is normal, right?

So, on day two out of the hospital I had the privilege of interacting with Allina's finest EMT's again. A ride with lights and sirens down 35W to UMMC was once again in the cards for me. This time? Totally random emergency: My Hickman catheter, the catheter that has been delivering life-saving Remodulin directly to my heart for the last three years fell out in the shower. It wasn't pulled. It wasn't snagged. I looked down and it was lying on the floor and my heart was pumping blood straight out of the hole in my chest. What the hell? Grabbing a bunch of gauze and holding it to my chest to try to stave the flow of blood, pulling some clothes on, running a comb through my wet hair and I was ready for the ride. No chance at sitting through a 3-hour play at the Guthrie for us tonight.

The wound clotted nicely and then the only thing to worry about was getting that life-saving elixir into my heart -- a 4-hour half-life for safety, but I start feeling symptoms after 60 minutes. It took about that long to get to the Emergency Department and get a peripheral IV started for the Remodulin. A peripheral line is good in a pinch; however, the Remodulin is so caustic on the veins, it is essential to get some kind of a central line going as soon as possible.

Getting a Hickman catheter in my chest requires more resources than are readily available on a Saturday evening, so a trip to interventional radiology to put a PICC line in my arm was called for. The downside of a PICC line is it is hard to disguise. The upside? They put in a dual line so I won't have to get needle pokes for labs! Yay for me!! I'll take these small victories wherever I can find them and after three weeks of twice daily labs, my veins were completely worn out.

I'm hoping to get another Hickman -- I'm accustomed to disguising the IV and they will want a central line for the post-transplant administration of medications, so that means another overnight stay at the hospital, but it will be worth it. I'm hoping they can leave the PICC line in too so I don't have to have any more needle pokes, but that may be greedy of me and too much of an infection risk.

Hoping the rest of the week is fairly quiet - I'm trying to get back to a normal routine and I only have one more hurdle (an angiogram tomorrow) to clear to be officially listed. Fingers crossed that that will happen on Thursday when my case is presented to "The Team."

Normal at my house is only a setting on my dryer.

True Story.

One of my original goals in beginning this blog, was to raise awareness of the disease of Pulmonary Hypertension and some of what life is like in fighting this disease. I'm finding ways to share stories that I wouldn't share with you over coffee: I'm exposing my vulnerabilities; my kryptonite, if you will.

Syncopal events, simply stated are when you lose consciousness. It is a scary thing to happen. I, unfortunately, have experienced too many syncopal events starting with the first one on my 55th birthday.

That first one was scary. The subsequent ones scary too. This last one, yesterday, was terrifying.

"Syncopal events are when pulmonary hypertension patients die," I have heard this over and over, ad nauseum from Dr. P. - his way of convincing me to do my best to avoid them - which I do. But last night, I was blindsided by one. Physically, I know what happens during these events. First. My heart stops beating and I lose consciousness. I stop breathing. Twenty to sixty seconds later, my heart starts up, I start breathing and 'coming to': dripping in sweat and trembling all over. You would be too had you just died and came back. Sometimes PH patients don't come back.

We made it home just fine. I was feeling a bit weak and I needed to go up 4 stairs to get into the house. I never dreamed it would be such a difficult journey. I remember struggling up two steps and asking Joe to bring my O2 to me. I stopped and waited like I'm supposed to. Next thing I know, I'm in Joe's arms, caught in a reverse swan dive. He, in his typical multi-tasking mode is trying to get my O2 on my nose, talking to the 911 operator, and keeping me from falling on the floor.

We ended up back at UMMC Emergency Department. I was bitchy to all the nurses and told them, just get Cards2 team here decide what I should do and get me going. It was late. I was exhausted and hungry and scared and I really just wanted to go home; but I wanted to be safe too. We got medical clearance to give it another go. This time I was prepared. I made the ultimate sacrifice: I asked and waited for help.

So I'm prepared to be quiet for the next week. I'll go grocery shopping with Joe lovingly propping me on his arm and I will let him carry in the groceries and put them away. We'll go to the Guthrie tonight, as planned, but we'll trade our great seats for some handicap seating at the top of auditorium. I'll walk slowly and take rest stops. I'll wait to plant my window boxes -- it's supposed to rain all weekend anyway.

Superman would beat Batman.

Homeward Bound

After three weeks, I am finally going home! My labs remain stable, my fluid volume is a little higher than we'd like, but not so bad that would keep me in the hospital. It will be nice to take a nice, hot shower, and go to dinner and theater with my sweetie for Friday & Saturday date nights.

I have two baby quilts to put the finishing touches on. I want to go buy my flowers and get my window boxes planted and I want to enjoy my house that I love so much.

In the bad news department: I'm too fragile to travel to Chicago to welcome Spike into this wonderful, magical world. I am sending Joe for a long weekend next week, and my son Alex will spend the weekend with me making sure I eat and take care of myself. I'll see Spike after my transplant and I'm sure the new mom & dad will be very understanding with my absence.

In the transplant department: I fully expect to be listed on Thursday, May 22. From a heart perspective, I will have a high lung allocation score: I'm sicker than many on the list (only 13 currently on the list at the University) and less likely to survive waiting for lungs. Dr. C. is talking about days or weeks before the transplant comes to fruition.

I've completed all parts of the evaluation. I met my social worker today. One of the transplant surgeons dropped a consent off to utilize Lung In a Box when the time comes. I have to take a class about transplant today. Next week, I will have a special low-dose contrast angiogram to make sure there are no insidious coronary blockages to get in the way of a healthy heart during transplant. We'll address any issues next week. Things are happening. And they are happening quickly. I had imagined waiting and waiting for months as my poor heart continued to fail; but it looks like thats not in the cards for me.

So looking forward to being home!

Homeward Bound

Purple Haze All in my Brain...

Today was a fairly eventful day. My bone marrow biopsy was scheduled at 9:45 and they showed up pretty close to on schedule. I had not been able to sleep, so I was trying to relax and meditate before the procedure.

On a scale of 1 - 10, I would say it was a 12. Fortunately, Joe was there to let me squeeze his hand and to remind me to breathe and focus through the 3 or 4 really bad parts where they were breaking through the bone. The drugged me up with dilaudid and Ativan before the procedure, and at one point Joe asked me if I wanted more. There's more? Give it to me! :-)

Consequently, I spent most of the day in an Ativan haze. I dozed a lot afterwards, and even when I was awake, I wasn't really awake. Dr. C., the attending cardiac team doctor stopped by in the afternoon, I remember. She is as frustrated as I was in gaining another pound of fluid overnight. So frustrated, she ordered Metolazone in addition to my regular drug cocktail. Had I not been in an Ativan haze, I might have questioned that addition: In the past, it has killed the sodium level in my blood, and raised my Creatnine to over 2.xx. But my drug-addled mind happily accepted it and I've been peeing like the proverbial racehorse since 2pm this afternoon. Dr. C. also brought up the possibility that I will just stay in the hospital until I get my lungs. Say what?!?

I am anxious to be weighed in the next few hours and even more anxious to see the labs. Maybe the thinking was that my kidney function had improved to such a level that it could take a mega-hit from the Metolazone. I'll let you know at 7 am.

Additionally, Wanda the vampire came up this afternoon, and cleared me out of any extra blood! She's kinda a scary looking vampire when you are in a haze: Meaty, heavily tattooed arms and facial piercings too numerous to count. After 40 tubes of blood, she quit. The transplant team should know everything there is to know about me after a few days of processing that booty.

Some pulmonologists stopped by to talk. I hope Joe caught what they were there for, because the haze did not clear enough for me to get much from their talk. Mostly they spoke about the evaluation: I need to have some sort of Cardiac Artery testing -- just to make sure I don't have any pesky, unknown Cardiac issues. I don't really have any of the typical risk factors, but they would hate to give me nice, shiny new lungs and have me have a heart attack at the same time. Good thought.

So, some good news in the wee hours of the morning: I've lost 5 pounds of fluid overnight. That is like 2.3 liters of fluid. All I gotta say: That's a whole lot of pee. I'm ready to do the happy dance!

My labs came back this morning and they have not appreciably changed, so we'll see what Dr. C. has up her sleeve for today. Maybe tomorrow will be the lucky day when '...the moon is in the seventh house and Jupiter aligns with Mars....' and I'll get home.

Dr. C. was here with her plan: Excited about the 5 lbs. but it was faster than she planned. We are stopping any diuretic for today and if all looks well tomorrow, we will move to oral diuretics and if all stays well on oral diuretics, I will be going home Saturday morning. Just in time for date night Saturday!

Purple Haze all around; don't know if I'm coming up or down ~ Jimi Hendrix

My Rock.

Joe is my rock.
I still remember that cold January morning in 2003 that he showed up on "my" tennis court:
big ol' eyeglasses from the 1980's, tighty-whitey tennis shorts, a WOOD tennis racquet circa 1970: it had a press and a cross-stitch Snoopy cover. I just sadly shook my head and thought, "What a dork."

Every successive week there were subtle improvements: 1st came some tennis shorts that were actually manufactured in the 21st century (I think I remember a story of the tighty-whiteys splitting in the seat, but don't quote me.) Next, a modern day tennis racquet. Big surprise: Lasik surgery and ditched the glasses. By March, he was a big improvement and I was actually enjoying him on "my" court.

But... I was still a bit of an Ice Princess in 2003. He would talk to me a bit after finishing our 90 minute drill, and later confessed to me that I wasn't exactly giving off any "I'm receptive and interested vibes...." But Molly, the match-making tennis pro had better ideas. She started 'working on him' to ask me out. Just a date, that's all she was going after. Finally, on a fateful Saturday morning in June, she threatened Joe that if he didn't ask me out that very day, she would do something to embarrass him to no end (I have no idea what she had in mind). She had him convinced: ask Vikki to play tennis, just the two of you and then take her to Figlio's for dinner. He heard that over and over and over.

I knew something was up and I was nervous. A date? All our friends knew... they were all keeping an eye on the situation. I tried to sneak out quietly and quickly, but he caught up with me and FINALLY asked me out. We agreed to meet for a friendly tennis date later in the week.

After playing for an hour, we met at the net and talked about what to do next. Joe suggested we go to Figlio or some other restaurant in his Uptown neighborhood. Just to be different, I said, "Let's clean up and meet at Bar Abilene for some food, in about an hour." I don't like to follow a script.

I showed up at Bar Abilene, a few minutes late. I had already checked with Joe and he was waiting at a table for me. But a quick look around the restaurant: No Joe. Is there another Bar Abilene that I don't know about? Fortunate for mobile phones: I called him and he was at Figlio's! Molly's pep talk had him all confused and he had gone to Figlio's just like she planned. I walked over there and we finished the first date that almost never was.

And the rest, as they say, is history.

Joe never signed up for all this. He fell in love with a healthy, chunky monkey, who loved playing tennis, hiking, and was always ready for the next adventure. We traveled and took some fabulous vacations and had wonderful adventures. Until one day, immediately after returning from an incredible trip to Italy and Paris (the French Open, don'cha know), I could not walk 2 blocks without being out of breath.

I was quickly diagnosed (relatively) and was deep in heart failure before I knew what happened to me. Trips and special events were cancelled over the months: I couldn't do it. After treatment, I improved and even got on the tennis court for a while again. But my heart can't take the pressure of pumping blood into my lungs and is failing rapidly. My only hope is a lung transplant. And Joe has been my rock these last four years as I fight and fight and fight. He recognized my discouragement and sent me texts: "Don't quit fighting. I'm not ready to live without you."

After meeting with the transplant surgeon yesterday, Joe expressed his fear. Not fear in that this is not something we should do, but fear that he will be helpless to me watching me with tubes coming out of my chest, my mouth, my neck and who knows where else. He's afraid that this will push my Viking toughness to it's limit and I might, just might, not be tough enough.

I'm the eternal optimist and he is my rock. With him by my side, I can do anything, endure anything. We are the rare combination: we both make each other better and stronger and we can do this.

You are the lover's rock; the rock that I cling to; You're the one; The one I swim to in a storm; Like a lover's rock. ~Sade

Confession is Good for the Soul... So they say.

A slight step backwards today: I gained slightly more than a pound of fluid instead of losing. Frustrating. It could be because of the Prednisone I'm taking - it is a notorious fluid retainer. Oooorrr...it could have been dinner last night: Oriental Chicken Wings in all their salty goodness.

In my defense, I was expecting Asian Chicken Wings which we had a week earlier -- a nice wing in a spicy dry rub: terribly yummy and low in sodium. But Big Ten Restaurant had different ideas - yesterday they were cooking Oriental Wings in a gooey, salty sauce. In further defense, I eat like a bird, so I couldn't have consumed that much sodium, could I? Today, I am sticking to my hospital meal plan and trying to use my imagination that it is slightly tasty.

So today things started happening.

• I'm having a bone marrow biopsy tomorrow morning to eliminate any question about the health of my bone marrow and ease the transplant team's concern about low platelets. I've told them give me all the happy drugs they can. I'm tired of being tough. The docs say it should be a breeze and it comes no where near as bad as some of the 'meaner' things I've had done to me.

• Tomorrow morning, I will get all the essential labs drawn for the transplant evaluation.
  
• We met one of the transplant surgeons this evening and I have his vote as a good candidate for transplant. He spent about an hour with Joe and I explaining the surgery, some of the risks, likely outcomes for stays in ICU and hospital length stays. We also talked about the Lung In A Box and how often they use it in transplants. According to Dr. L., they look for every and any excuse to use it because it gives them data and is better than organs on ice. The only time they really can't come up with an excuse to use it is if the lungs are so local, it would not make sense to use.
  
• The Card2 team stopped and said that they have some tricks up their sleeve to remove the fluid quickly if it turns out to be stubborn. They refuse to send me home to fight the fluid war at home. It's a long involved process involving a stay in the ICU, I'll save the description for the time being.

Music is a world within itself - It's a language we all understand. ~Stevie Wonder

Going on the 3rd week in the Hospital.

This stay is turning into something totally unplanned. I am so ready to fly the coop and be home. I feel good, a little weak is all, and I have so much to do. I have two baby quilts to finish before Spike arrives, I have window boxes to plan and plant, an herb garden to plant, and my poor plants are dying from neglect!

This is where we are as of Monday, May 11th:

• My kidney function has improved remarkably: the two markers we are most interested in are my Creatnine levels which this morning were 1.22 and the Sodium level in my blood: 129 this morning. Both of these numbers are well within what the transplant team wanted to see in improved kidney function in order to move ahead with a plan for transplant.
  
• I still have 8 - 10 lbs. of extra fluid on me, which is about the same as when I entered the hospital. In two weeks they put on 10 lbs. and took off 10 lbs., so we are back to where we started. I suggested this morning that since my kidney function is so improved, maybe we could take a chance and bump up the diuretic dosage just a tad and try to get a couple more pounds off. I only lost .3 of a lb. yesterday. I'll find out what the team thinks of my idea when they visit.
  
• Joe is tired of spending all day in the hospital with me and has set a goal for my teams: Get a plan and start executing to get me discharged.
  
• I still have very low platelet count, abnormally low. Sometimes that happens and resolves on its own. Sometimes it is caused by medication. Sometimes it is caused by something insidious. The "Heme Team" has been threatening a bone marrow biopsy to rule out some insidious occurrence of low platelets. Drug me up and get it done so we can move on. Please.

I met with my Cards2 team this afternoon and:

• They agree. Let's get more aggressive in moving off the fluid. We are increasing my IV diuretic slowly to move more fluid.
  
• They talked to the "Heme Team" and convinced them that let's just do the biopsy. We don't want to give the transplant team anything to hem and haw about. That will happen in the next couple of days. Bring on the happy drugs, please.

• They've talked to the Transplant Team and we are moving forward with the evaluation. I've had a lot of the physical testing, but there is still more to go and psychological evaluations, etc. That will all start getting under way. Hopefully, they can get it all done in the next couple of weeks and they will formally present my case and make a decision.

The lung transplant program at UMMC is undergoing tremendous growth right now. They have been chosen as a center to trial the "Lung in a Box" program which allows for a better evaluation of lungs before transplant and for keeping the lungs fresh longer, thereby not wasting the transplant possibility because of travel time, etc.

To read more:

UMMC's 1st in the region transplant using "LUNG IN A BOX" 

Lung in a Box in operation

Dammit Jim, I'm a doctor not a magician!

A Cathartic Mother's Day Post

Don't tell anyone -- I'm turning into my mother.

And that is not at all a bad thing. My mother was a lot of things, but most of all, she was beautiful, vivacious, out-going, and every person she met was just a friend she didn't know about yet. In short. She was everything I was not, and all those things were simply lost on her INTJ daughter. I quietly admired her for all these traits and more and knew that I could never come close to emulating them. She danced as if no one were watching, sang and played music to an audience of one, and, I hope, she loved as if she had never been hurt. And what do you know? Fifty years later, I bear a distinct resemblance to her. The shape and color of my blue eyes (they finally settled on a color?), the way I set my mouth, my smile... I resemble her more than either of us ever thought. I always joked that I must've been adopted because I never resembled her in the least,  and I didn't come close to the dark beauty that came from my dad's family like my brother did. Things are different now.

I'm also more outgoing. Everyone I meet becomes a friend. I'm surprised everyday in the hospital by people I have met and befriended in the research community, the University community, friendships I have strived to keep going years and years past when we saw each other on a daily basis. I truly value those friendships and those visits.

Oh, I'll never have a nose like hers... and I hope I never sneeze like she did... but the rest?? Bring it on. So all those years I was dreading turning into my mother? I am so glad it happened. I wish she were here to see it.

"You Picked a Fine Time to Leave me Lucille..."

All's Quiet On the Western Front

And with Joe on his way to New York City for a weekend of revelry, it is my job to keep it that way.

This is where we are as of today.

• My evening labs came back with a Creatnine level of 1.22. I haven't seen a level that low in a year!
• We decided on, and started, a small dose of the immunosuppressant Tacrolimus. If things go bad, we change to a different immunosuppressant: Very scientific.
• Something has do be done about the 12 plus pounds of fluid I'm carrying around. Seriously. That's at least 6 liters of fluid I don't need. Trouble is, we don't want to disturb the kidneys, so I am being patient about it coming off. It makes it hard to move, hard to breathe, hard to be.
• And I get to spend a nice, quiet, weekend ensconced in my lovely private suite on 6C. Stuck with all my emotions.
• Also trying to find a way to get an order of Asian Chicken Wings contraband from the Big 10 Restaurant. I don't really see myself walking down there with my Oxygen and IV pole, so if anyone is in the neighborhood.... :-)

Things are happening so quickly, my head is actually spinning. Two weeks ago, I thought, "Okay... a couple of months to get my kidneys back in shape and then we start assessment." No. We are ready to go and I will start some of the testing as an inpatient in the hospital. There's still a lot to do before I'm actually "listed," but it is happening quicker than I ever thought it could.

Oh. And on top of this this all, did you know that we are very anxiously awaiting the arrival of our grandson, 'Spike,'  due to make his appearance in Chicago any day now?? Crazy.

The Circle of Life....

The More Things Change... The More Things Change??

I was awoken this morning with a phone call from Dr. P. He was worried that I thought he was ignoring me, because he was letting Dr. T. handle my case -- as it should be. I assured him that I knew he was lurking and directing in the background and I was comfortable with how things were being handled.

Dr. P. good-naturedly accused me of aging him exponentially, to which I countered, "No. I'm keeping you young and on your toes!"

So a lot changed overnight.

#1. The risky Atrial Septostomy has been tabled as a 'bridge-to-transplant' option -- we will save it in our front pocket for when we have no other option.
#2. There will be some discussion among the various experts to decide which immunosuppressive drug will offer the biggest bang for the buck and potentially, cause the least damage. I will uptitrate on that for a few weeks, while weaning off of the evil Prednisone.
#3. They want to do another Right Heart Catheterization (RHC) in order to measure the pressures inside my heart and to get a really good idea of what is going on. And. Yes. It's true. I will win an award for being the patient who has had the most RHC procedures. It isn't a pleasant procedure, but, then, again, it isn't a walk in the park, either.
#4. My Creatnine is down to 1.57. We need to get a number other than a 'fuzzy' 1.5 requested by the transplant team. And we need to get me stable at that number and not varying from day to day (hence the aging exponentially by Dr. P.
#5. The scariest thought: Dr. P. would like me to switch from Remodulin to Flolan. Flolan is the gold standard drug and it was the first IV Therapy for PH developed in 1995. Remodulin is like Flolan-lite. It offers a significantly longer 1/2 life -- if something happens to my pump delivery system, I have a couple of hours to resolve the issue. Plenty of time to fix it on my own or to drive to the UMMC Emergency Department to get them to fix it for me. Flolan gives me about 20 minutes. Yes, I have 20 minutes to notice and resolve a problem or I could lose consciousness and die. That and I would have to learn a whole new protocol for mixing and storing the medicine. It has to be kept on ice at all times -- including while I'm wearing it. I would have to mix it every day and I would likely have to return to the dreaded humongous pump - the CADD Legacy-1. Ugh. There are things that are daunting for even the most stoic Viking warrior. This is one of them and I can't do it.

So that is where I stand as of 10pm tonight. I will remain a resident on 6C, probably through the weekend. If I have to be in the hospital. This is the place I want to be.

"...Time can change me; but I can't trace time...."

How do you improve kidney function?

Good question.

Step 1: If you make my heart happier, my kidneys become happier and they will work better.

Step2: Limit your H2O intake to 500 ml/day. What?!? You've got to be kidding me. That is the hardest thing for me to do. There is nothing more pleasurable than sitting down with a nice, tall, cold glass of clean water. My husband just bought me a new house in order that I could drink good water!! But, I want happy kidneys so I will do as I'm told. I guess I can drink all the good clean water I want after I transplant. Right?

Step 3: You start messing around with my immunesystem. I will be taking some anti-rejection drugs that appear to help improve kidney function. Not exactly uncharted territory; however, still a tad daunting.

Step 4: In an effort to make the heart happy, you undergo a rare, risky heart procedure called Atrial Septostomy. A small hole is punched between the two atria, thereby allowing a shunting of blood to go straight from the right side of the heart to be pumped to body by the left side of the heart: Totally skipping any oxygenation. Risky and I may be a Blue Girl for a while. They would fix this during the transplant. Lowering the pressure in my heart will make it happier and make my kidneys happier.

Where we are 8 days later:

I've endured a round of Bumex IV therapy (a strong diuretic). To say it "...causes body aches..." is the greatest understatement ever made. It made me feel like I had gone to Lifetime Fitness and overdid every single exercise machine so that I could not move a muscle without extreme pain. And then, just to top it off... Someone took me into the parking lot and beat me with baseball bats. That's the pain it causes.

The combination of the Bumex therapy and limiting of water to 500ml (I am doing it!) has lowered the Creatnine level in my blood from 2.56 to 1.71. Our goal is 1.51 -- it is just possible, by adding Step 3 above, we can improve my kidney function without any risky heart procedure.

And after that, there is still the small matter of 10 lbs. of extra fluid we need to get rid of.

I'm not a Doctor, but I could play one on TV.