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.