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Hi -- Mom went home Thursday night with some blood thinners to combat those blood clots. She was glad to be home (understatement of the year)!

Biopsy #4 = 1R = good but Houston, we have another little problem

Hi.  Yesterday's biopsy was a 1R, a good trend line following last week's 1R.  However, Mom has several blood clots in her legs.  This is definitely a by-product of what has gone on, but is a bit of a set back. She went back in the hospital yesterday.  We're very glad they caught this!  Stay tuned and xxx.

Biopsy 3: 1R (= that's good)

Mom had biopsy #3 today.  Recall the spectrum of rejection runs from 0R to 3R.  Today she was a 1R, which the Clinic basically thinks of as 0R.  

So, next week the fun test list includes:  biopsy #4, right heart catheterization through the neck, left heart catheterization through the groin,  blood work, etc.  Fingers crossed for the trend line to stay on this positive path.

Sprung!

Our girl is sprung for now and we intend, for good. They won't really have the results of those meds they poured over the last biopsy until they see this coming week's biopsy. So, even though she had a humongous large screen tv and a private room and midcentury modern decor and all kinds of people bringing her things....life is still better outside the hospital.

We are checked into a residential hotel near some good shopping for her walks and are planning to stay here 'til she is cleared to leave Cleveland a bit later in May. Biopsy #3 this Wednesday, always a good time!

XOXO

Small Setback

Mom had her second biopsy yesterday and it came back 2R, higher than the 1R she had last week and cause for a small bit of concern.  The hospital hopped right on it with an IV anti-rejection drug so we'll see over the next day what occurs.

Thanks for all of the good thoughts.    

The House That Shampoo Built

Did you know that the Cleveland Clinic opened its brand new state of the art facility in the fall of 2008?  Most of the funding for the building was donated by Ohio residents Sydell and Arnold Miller.  Mr. Miller died in '92, but earlier in his career was a hair stylist and later, the founder of Matrix Essentials, Inc.

By the way, the guest house where we stay when visiting Mom would be on the left of the picture, just north of the hospital.     

Heart Biopsy One of Two (or more)

The hospital schedules a biopsy one week post-transplant to figure out if your body is rejecting the organ. (You could be walking around feeling fine but you're body is rejecting...not a comforting thought.)

Her results came back as 1R, not the lowest/ best level but just one level from that, which is pretty good. Her heart cath results today also came back looking good.

Heart biopsy two next week.

Wonder Man

This is the surgeon who did Mom's transplant.  We love you, man! 

Saturday Stats

Hi there. Sitting here with Mom and these are the updates for today:

-- got out of ICU and back onto the 8th floor (ICU is endless commotion)
-- blood sugar down
-- lungs have expanded
-- able to get up and around a little bit

New address (temporary. Getting out of the hospital and over to the guest house for the next phase depends on progress):

Susan Leonard
Cleveland Clinic
Room J82-02
9500 Euclid Avenue
Cleveland, OH 44195

Just saw the helicopter take off the roof a little while ago! Lives to save...

Little Miracles Each Day

My Mom got her chest tubes out yesterday, yeah! Her voice is almost normal too, her throat is getting better each day. The breathing tube really caused a lot of throat pain but the fact that she can swallow better and take her rejection meds in pill form gets her number of IVs down. This among many other things will get her to a room faster and out of ICU.

We have become cheerleaders for other families there and them for us. They all love my Dad of course and have been missing him the last few days. You end up spending time together and sharing stories during shift changes and breaks etc. in the family waiting room. We actually witnessed something nothing short of AMAZING Thursday night. Mr. Morris was brought in and put across from my Mom, they were prepping him for heart transplant surgery. He was crying because he had been told there was a match and they had gone to get the heart. He was awaiting the word on if it was good or not. Mr. Morris had surgery to have an artifical heart put in a few months ago, then his leg had to be amputated because of lack of circulation. Two weeks ago he had surgery to remove cancer they found in his colon. Just before we left Thursday night they found out the heart was good!! We were all tearing up over the awesome news. I was so glad to know before leaving that night or else I don't think I would have been able to sleep through the night hoping the heart was good. When you think things are bad they really aren't so bad after hearing his story.

My Mom enjoyed reading the cards you have sent yesterday. Thanks!

Thanks to all for the thoughts and prayers. It is working!

Some stats for you

Hi there. Here are some Thursday stats on Ms. Leonard of the New Heart:

-- has gone down from 10 IVs on Tuesday to 4 today.  (Nice tracks!)

-- breathing tube removed Wednesday AM

-- can now talk above a whisper.  Breathing easier; her lungs are 'waking up'

-- had a popsicle, jello and ice chips today to eat.  Kidneys getting back to normal

She's still in ICU but if this continues to be the improvement trajectory, she should be back in her own room in the next few days.  Still several weeks to go in Cleveland.

Thanks for all of your good thoughts.  We feel them!

THEY DID IT

They found another heart last night and did the surgery overnight, starting at 2A and ending after 8 this morning. It was a success and they are very pleased with mom's progress so far. The next few days are critical, so keep sending your good thoughts.

An interesting note: the surgeon was a young Croatian doctor from Zagreb named Dr. Tomislav Mihaljevic (http://my.clevelandclinic.org/staff_directory/6/Staff_5752.aspx). Our Gramma Rose Vidmic, whose parents immigrated from Zagreb, would be very pleased!

More as soon as we have it. Love to all.

Well, Friday was an interesting day

The nurses let Mom know first thing on Friday that they'd found a heart donor for her.  !!!  

They don't give you many details  -- where the person is, what the circumstances are, probably for privacy reasons -- but that set off a process that lasted all day Friday.  To wait only a week or so is truly incredible.  They started the prep process in the morning -- doing blood work, etc.  Dad rushed down from home, as he wasn't in Cleveland at the time.  The donor was apparently a jet ride away and was donating many organs.  The team of doctors that was going to inspect the heart left in the early afternoon to fly to heaven-knows-where and take their turn with the other medical teams from other hospitals who were likewise taking home an organ.  

They moved mom to another floor for more prepping in the afternoon, inserting some industrial strength IVs.  Every person whom she had contact with was careful to say that false alarms are common so anything could happen.

The doctors made it back late in the day so they could perform final tests on the heart before making a call on the surgery, which takes about 6 hours start to finish.  Ultimately they decided though it was a match, the heart they had harvested was not 'perfect' and they did not want to use it, so game off.

This reads sort of flatly on the web page, but it was a pretty dramatic-ish day.  We're glad they're picky but disappointed this wasn't The One.  We're also thoroughly amazed at the process that would have ended about 24 hours after it started if the surgery would have gone to completion. 

New Email Address

Hi Everyone,
My Mom will be using the email address leonard48623@yahoo.com for personal notes as opposed to her Charter email while here in Cleveland. Charter proved to be more than difficult to hook up to remotely. We are currently visiting her and have decorated her room with pictures and Colin and Sydney's art work. We are also watching the MSU/UConn Game. GO GREEN.

Back to Cleveland Clinic

Hi all. We're writing to let you know that Mom is now back at the Cleveland Clinic until they find her a heart donor. She's had issues with fluid around her heart, causing her not to be able to sleep and more. The doctors want to avoid damage to other organs and so it makes sense to have her looked after at the Clinic. The Cleveland Clinic is world class so we are grateful that they are directly in charge of this next phase of her getting well. They do about 120 transplants a year there: business as usual!

Not sure how many updates will be here as this seems like a waiting game but this is definitely the spot where we'll put them.

Mom's address:

Cleveland Clinic
Susan Leonard Room J 82-8
9500 Euclid Avenue
Cleveland, OH 44195

She also will have her laptop in a few days, just for personal notes (srleonard@charter.net).

Much love,

The Leonards and Robinsons

I'm Home!!

Hi Everyone,
I am very grateful to our daughters, Carrie and Lori, for their time and effort in putting the blog together, however, I thought I would do the blog myself this time.

We were able to come home last Saturday. Our 4+ hour drive from Cleveland was increased by 3 hours due to horrible weather but we made it and when we drove into our driveway it was the answer to our prayers.

Today I was given really good news from Cleveland, they have determined that due to my general good health, the meds I am taking for my heart, and my success in all of the many tests I had while there, that, at this time, I am not a candidate for a heart transplant! They feel that they, at the Clinic, have done their best to bring me back to reasonably good health and as long as I continue to follow their instructions "to the letter" I should be OK. I do need to have a defibrillator put in to take some of the stress off my heart but that will only improve my chances of continuing to feel better. I will be making visits to Cleveland for tests etc. but barring any complications I can plan on moving forward with my life.

I truly believe that this has all been made possible by God's help and the thoughts and prayers from all of you. I can't thank you enough.

Love,
Sue

Hallelujah!

After nearly 3 weeks in the hospital Mom will be given the opportunity to come home to wait for a heart. The meds are working! We are ecstatic to have her coming back and can't wait for her to get home. (Colin and Sydney are excited to have Christmas with Mom and Dad this weekend too) She of course will be on a very regimented low salt diet combined with exercise. Mom's sister Beth has diligently been researching some great cookbooks and useful information. We will even teach her how to publish a post on the blog next week when she is feeling up to it. She said she would try to get in touch with as many of you as she can once she is adjusted and has had some time to rest. Once again, thank you all so much for the love and support you have shown our family thru this difficult time. Please keep her in your prayers.

Factoid: A Donor Heart

A donor heart can be kept fresh for a maximum of four to six hours with proper preservation, depending on its starting condition.

Another good day!

Hi All---Mom was up, showered and ready to go today for her Metabolic Stress Test. Unfortunately she had a reaction to her meds prior to the test, so she had it later than expected. They changed her dosage yet again and are monitoring her reactions to the new dosage. The results of the stress test are not in yet but she said the Dr. told her she "heard" that mom passed it. This is good news, I hope the "rumor" was true! They are still taking baby steps to get the correct combination of drugs and dosages. To be clear, any which way she still is going to need a transplant.  Thanks so much everyone for your continued support and well wishes. Our family appreciates it.

Untethered

So, apparently it's a constantly changing situation in Cleveland. They seem to have found an oral medication that makes mom's heart pump. If this is indeed a medicine that will continue to be efficacious, she might even get to go home. For now, the swan (aka thingie that feeds the tubes) is out. While going home is clearly good psychologically, the negative is that she becomes lower priority to receive a heart on the factor of critical need. She's moving to the 6th floor today so the address below will change.

Not Presented To Board Today (Boo)

Word from Cleveland is that they're still evaluating mom, so her case will go before the board next Tuesday, rather than today.  They also re-calibrated her meds so she's got no nausea or headaches and feels great today.  Part of this could be that she also got to wash her hair.  Ah, what we take for granted!  :)    

Here's Mom's current address in case you'd like to send a card:

Cleveland Clinic

Heart Failure ICU

Susan Leonard Room J3-2

9500 Euclid Avenue

Cleveland, OH 44195

Lots of Action Today

I just talked to my dad and lots happened today.  First, the good news is that mom's heart was pumping very well today with the assistance of some medication.  Unfortunately, the meds give her headaches and nausea so there was some bad to go with the good.  With her headache, she and my dad were subjected to a long line of questioning regarding family history, lifestyle habits, etc. for the application to the heart transplant program.  She answered all of those questions, avec headache, like a trooper!  Applications are reviewed on Tuesdays and hers will come up at tomorrow's board meeting, which is attended by about 40 people.  If she is accepted, she will become a resident of the Cleveland Clinic's 8th floor, where heart patients live.  Currently, there are about 7 others waiting.  Let's hope they have a well-stocked snack fridge, abundant internet access and a large screen tv!

If she is accepted -- and we believe and hope she will -- there are a few factors 'in her favor'.  One is that we are told it is easier to deliver a blood type A heart, since so many people are type O, thus all waiting for the same thing.  (I need to do some more research there, as you'd think the donor rolls for O would also be larger.)  Also, her case is medium critical and the most critical cases are dealt with first.  Recipients are divided into three groups.  The 2As can wait at home for their hearts.  The 1As -- my mom-- need medication; the reason she has to live at the Clinic is that the medication she's responding well to is administered via an IV.  We don't have one of those on Appleshire Court and TL is not a trained nurse.  The 1Bs have first priority as they are being sustained via mechanical device.  As well, her body size -- as in, lean -- bodes well for finding a right-sized heart.    Finally, the key heart centers in the U.S. are at UCLA, Columbia and the Cleveland Clinic.  The former both serve larger patient populations, so geographically it is better to be in Cleveland.  Something for the Jets' former coach to keep in mind if he takes that Browns job...

As always, thank you for your good thoughts and outpouring of support.  It sustains us.

First Post: January 4, 2009

Hi everyone -- we're establishing this blog so that everyone has access to the information we have, as soon as we're able to post it.  Mom and Dad have been getting lots of great phone calls but it's hard to properly keep up with all of the good will.  So we figured this is the next best thing! 

 

The status as of today is that they have officially begun the evaluation process for getting her into the heart transplant program -- her diagnosis is cardiomyopathy.  The evaluation requires a series a tests and also some qualitative decision making by a board.  We're not sure how long the process is to be "accepted", but believe she will be.  After that, she has a wait of some period ahead of her, and this will be done at the Cleveland Clinic.  We're still learning the answers to the questions you may have -- how long it may take to get one, what priority status she has in the queue, etc.

Right now, her doctors hypothesize that some sort of viral infection attacked her heart over the last few years (she has a normal test dating to 2005).  There may also be hereditary effects.  

Lots more news and information will be coming this week, and we'll put it here as soon as we have it.  Thanks for your good thoughts and prayers.