Monthly Archives: October 2025

Well, I kinda feel like I’m in the movie Groundhog Day with Bill Murray! Every day I wake up and wonder if this day will be THE day. LOL!! The Dr’s assure me that it will be sometime soon. The average wait time for someone like me is 6-8 weeks and my name does come up in the selection process. But it’s just not the right one. Many factors go into the selection process besides blood type. My height and weight, the donor heart must fit perfectly in my chest and compatibility with all the antibodies I have acquired from multiple previous blood transfusions during my other surgeries.

Leonard has moved from the Gabriel House to a nearby campground. He was only allowed to stay in Gabriel House for 1 month pre transplant and that month ended the day they alerted me that they had found a heart for me. It ended up being a dry run due to issues they discovered while physically examining the heart, so he had to find somewhere else to stay. He went back to Titusville for a quick trip to pick up our RV and then go to a campground that is fairly close by. He will go back to Gabriel House after I have surgery and we will be able to stay there as long as needed.

The weather here is gorgeous now and I’m sorry I’m missing it but keep myself busy chatting with the staff and other transplant patients, both pre and post transplant. There are therapy dogs who come to visit, musicians, social workers, dieticians and a host of others who are here to ensure that we are doing as well as can be before our surgery. It hopefully won’t be long now. We’re so appreciative of all the love and support we are getting from everyone. It is a tremendous boost to our moral and we will be sure to update the blog if anything changes.

Just after midnight this morning my nurse came in to test me for Covid (first time). Suspicious… Thirty minutes later a cardiologist came in to tell me they have a viable heart offer and they may start the surgery as soon as 8 am! Another thirty minutes go by and he calls to say it is postponed until later this evening. The rest of the night they’ve been drawing blood off and on (a total of 20 vials so far). At 8 am I was taken down for a vascular ultrasound to make sure I had no blood clots. 2 pm this afternoon no more food and drink.

This could still end up being a dry run. Apparently, the chances are one in ten of that being the case.

I will be amending this post instead of creating a new post for every update. I don’t think you’ll be notified (subscribers) when this post is amended so you’ll have to check the site periodically for updates. If I’m wrong about that, please let me know.

Thank you all for your love and support!

4 PM Update:

Surgery is scheduled for 11 pm tonight.

11:57 PM Update: Turns out this heart is not up to speed and has been rejected by the surgical team. They did not tell us why. That makes this dry run #1.

Here I sit, almost a month already, patiently waiting for my perfect donor. The first 2 weeks were a little tumultuous and left me quite a bit worse than I was on admission. There are a couple of powerful IV medications they want to use on a patient pre-transplant that ideally will help their heart function until they get transplanted. They affectionally call them ‘rocket fuel’. Well the rocket fuel did not work (I call it ‘failure to ignite’) and made me much sicker. A few other issues have occurred that have taken a while to recover from but now I’m finally starting to feel better. As far as I know I have not received any other offers but I may have been put on hold until they resolved a few things. Hopefully it’s smooth sailing from here.

If I have to wait anywhere I’m so glad I’m at the Mayo Clinic and with this team. The staff and doctors are exceptional and go out of their way to make sure us long term patients are happy. I was moved to a room with a huge glass wall overlooking the intracoastal and the Atlantic in the distance and see the sun rise every morning. (Not so much with all this rain). We are strongly encouraged to exercise as much as possible to keep our muscles strong before surgery and to wear our regular clothes. You can’t tell us from the visitors, except for the IV poles and monitors. LOL. We even wear a GPS tracking bracelet so they know where we are at all times. We’re only allowed to stay on this floor except when we get ‘sunshine privileges’ and are escorted downstairs and outside with a 5 person escort for about half an hour! There are 4 of us here now who are pre-transplant and we get together to play cards once in a while. It helps to pass the time.

They have professional musicians who will come and play a keyboard or viola in your room if you wish, canine companions who will come with their dog and visit if you wish and professional artists who will come and draw or paint for you. The food is done as room service and is available whenever you call and a huge fluffy robe is waiting in everybody’s room which we apparently get to keep. My transplant team calls it the Mayo resort but I’m not fooled. I’d rather be on a cruise ship!!

I’ve been so fortunate to have many friends and family come for a visit. Those visits keep me going and I am so appreciative of the time and effort it takes to drive up here. So….I’m patiently waiting. There was a girl who waited 4 months and got her heart about a week after I got here. She got discharged today. Another lady who waited 3 months got her heart and went home yesterday. It will come for me eventually.