Author Archives: sunandsandtravelers

Today is my one month anniversary and what a journey it has been. I’m glad to be out of the hospital and in the Gabriel House where it’s quiet and there are no machines keeping me awake all night. All the work and specialists I was seeing as an inpatient will now continue but as an outpatient. We are over at the hospital/clinic approximately 4 days a week.

I won’t lie and say it has been a easy journey. My neuro event in the ICU set me back quite a bit and I’m working hard to regain my strength and endurance. Physical therapy is twice a week and will be 3 times a week in January. I feel frustrated at my progress but know not to compare myself to everyone else’s experience. As they say here “Everyone’s journey is different”.

I know some of you may be grossed out but I am choosing to put a couple of pictures of me immediately post op. It reminds me of how far I have come.

Having been in cardiac surgeries for work I am familiar with them but as I was wheeled into the OR I remember being struck by how many people were in the room setting up. It was a big room with 3 or 4 scrub tables and at least 12-15 people setting up or scrubbed in. Everyone turned to look at me as I was wheeled in. Pretty amazing. I don’t remember much about the next week, unfortunately.

Interesting fact: Mayo Clinic Jacksonville has chosen to make organ transplants their major focus. The weekend I was transplanted they did 3 heart transplants, 2 double lung transplants, a couple of livers and kidneys. I think there were about 10 transplants in 2 days. They all require specialized teams in the OR’s and I don’t know how they manage it. My surgery alone was 9 hrs. A gentleman who was inpatient with me waited 5 months for a simultaneous heart and liver transplant. His heart transplant was officially number 9,999 and his liver was the 10,000th organ transplant at Mayo. There are announcements all over the hospital about Mayo reaching the 10,000 mark and it was our friend who was the pt. Pretty cool.

We are very comfortable here at the Gabriel House and have made friends here. Some of the people I was in the hospital with are here now as well and we share experiences. We’re extremely lucky in that many charitable organizations have chosen Gabriel house as their charity and they bring in entire meals for the residents here. This week there are 3 organizations providing dinners with all the trimmings and serving it as well. Lucky us.

The house has approximately 12 Christmas trees up. Here are a couple of especially pretty ones for you to enjoy.

later I am leaving Mayo Hospital with a new heart and new hope for the future.

Clap Outs are given to celebrate the discharge of most heart transplant patients.

For the next two months or so, we will be staying at Gabriel House. This is the best place to stay while continuing my follow up visits with Mayo Clinic. These will take place at least three to four days a week with multiple visits each day and will go on until all the medications are fine tuned and there are no signs of rejection.

Dialing in the initial medications the first evening at Gabriel House.

Updates to follow as the journey continues.

And now for a quiz:

Which person in this photo has NOT had a heart transplant?

Happy Thanksgiving to Everyone! Much to be thankful for! Thank you for all your love and support.

I am most happy to report that SIGNIFIGANT progress has been made. All four chest draining tubes are out. The feeding tube is out and she is able to eat on her own. Most IV drugs have been discontinued. She has done so well with physical therapy that, instead of going into a rehab hospital, she will most likely be discharged and move into Gabriel House with me this Monday.

And, the best news of all: They did her first biopsy yesterday and found no evidence of rejection.

a week ago we were headed down to pre-op for the transplant.

I was waiting until she was out of ICU to do an update so I could provide her new room number. I thought she would be out two days ago but, erring on the side of caution, they delayed the move until today. Her new room number is 1148. Our mailing addresses are here.

Her heart is doing fantastic so far and her overall progress is fair to good. The delirium and disorientation come and go but are trending better. She still gets Very tired Very quickly. She has been having physical and occupational therapy every day, but progress is slow. We may have to go to a rehab facility for a week or so after she’s discharged from the hospital. I expect hospital discharge will be in 7 to 10 days.

After that, it’s a couple of months at Gabriel House.

I was thinking it would be good to have visitors to help her get back in touch with the world but I’m hearing about allot of colds, etc. going around so I’m asking no visitors for now. I’ll try and set up Facetime or Whatsapp video calls instead. Whoever is interested in doing that just text me or leave a message here on the blog.

Hopefully, Jean will be doing the next update.

Once again, a very heartfelt thanks to all!

Miracles do happen! Although she’s still very confused she’s doing exponentially better.

Well, I was hoping Jean would be able to write the next post but it doesn’t look that will happen anytime soon.

Before I tell you what’s going on, I want you to know that this is not uncommon (thanks Judy) and will hopefully resolve within the next few days. In fact, there has already been some small improvement.

Here’s what happened:

About 3 am Sunday morning they tried to give her a pill and she couldn’t/wouldn’t swallow it. Further physical assessment revealed she was unable to talk or follow commands like, hand squeezes, move hands, fingers, legs, toes. Not able to hold up her arms or legs up. If she opened her eyes, there was no eye contact. CT scan showed no indication of stoke. EEC showed no indication of stroke or seizure. With pain stimulation (pinching) she moves her arms and legs. Although they can’t rule out stroke entirely without an MRI (which can’t be done now because she has temporary pacer wires) they’re pretty sure she has Metabolic Encephalopathy. Probably caused by all the drugs and resulting chemical imbalances in her system.

The good news is, she is now occasionally reacting appropriately to some people; eye contact, a smile or nod, even the occasional word. She seems to react better to people she knows so if you can come by for a short visit, please do. Of course, don’t come if you even think you’re sick or if you haven’t had your flu and covid vaccines. Also, you will have to wear a mask.

The other good news is, her new heart is doing exceptionally well.

Also, I hope you’ll forgive me for not answering texts and emails promptly or even not at all. I really appreciate them, more than you know (thanks Luke). It’s just all quite overwhelming for me at times. I find making the blog post cathartic.

I’ll try to update this post daily until she gets past this stage.

Jean got another offer last night around 11:30. We decided to wait until it was actually happening before we told anyone. I will update this post in reverse chronological order. You probably won’t be notified when it’s updated so just check back in now and then. The surgery will be at least 10 hours. I expect to be updated every few hours and will put the updates here when I get them. Thank you all for your continued support. It means the world to us.

1:45 pm The breathing tube has been removed and she’s breathing on her. Most importantly, she seems to be very much herself. Though it is very painful to talk, she is responding appropriately to questions. Everything is still looking very good. Looks like they’re going to let her rest the remainder of the day. This is the last update I’ll do on this post. The next one will be from her. Thanks again for all your prayers and support.

11:20 am: I’m in the ICU with her. So far, everything is going better than expected. She got a male heart and, according to the surgeon, it is very strong. Once she starts breathing on her own, they will pull the breathing tube and have her sit up in a chair. Hopefully, that will happen in the next few hours.

1:30 am: Just spoke with the surgeon. Everything went well. Should be able to see her in the ICU in about 45 minutes.

12:40 am Mayo Clinic: “We are starting the closing process.”

11/8 12:32 am Mayo Clinic: “Her old pacemaker is out. We will let you know when we begin the closing process.”

11:29 pm Mayo Clinic: “She is off the heart bypass machine. Her new heart is doing the work for her now. We are going to remove her old pacemaker device now.”

9:01 pm Mayo Clinic: “The new heart is here and Dr. S is placing it now.”

7:58 pm Mayo Clinic: “She is on the heart bypass machine. We will let you know when the new heart gets here and Dr. S begins placing it in.”

6:30 pm: Procedure started.

4:30 pm: In the Operating Room.

11/7 3:30 pm: she went to pre-op.

Much as I would like to be writing this ‘from the other side’, meaning post transplant, that is unfortunately not the case. Here I sit joined by other transplant patients who have been waiting even longer. The Dr’s offer encouraging words and expect it to be ‘any day now’. We did have a very encouraging event last week when a patient, who was waiting for 6 months for a simultaneous heart and liver transplant, finally got the call. After being sick for so long he was sitting in a chair the day after surgery and is now walking the long hallway we have here, unaided. He’s an inspiration to all.

We have a close group here and are routinely visited by some of the recent post transplant patients who must remain close by for 3 months. We had a fun afternoon when 3 of them showed up with snacks and we played cards. It’s been great to get to know them and follow their progress and to be able to ask them any questions we want about what our paths will look like post transplant.

Here’s a fun picture of 3 recent post transplants and 3 pre transplant. My new family. (We have to make sure not to make them laugh as their chests are still sore!!!)

Thanks so much for all the beautiful cards and visits and words of encouragement. It means the world to us both. I will probably request no visitors after I have surgery as my immune system will be non-existent and no treats as I will probably be diabetic. Miss you all!!!!

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.

Well I just had an unusual experience. If the pre-transplant patient is stable enough they will allow us to have some outside time once a week.

I jumped at the chance and it was quite a sight. 2 patients with our IV poles and pumps running, trailed by 2 wheelchairs and 5 nurses!!! We went down the staff elevator to an outside area where there were some tables and chairs and spent about 40 mins letting the wind ruffle our hair and chat about things non-medical. Then the wheelchairs followed us back to our rooms. LOL. I kind of felt like a penitentary inmate though!

But it was wonderful to get outside again, if even for a few minutes. I wish I had my phone with me though so I had a picture for posterity. Next time.

Another pre-transplant patient from our unit has been told she will get her heart this afternoon. It’s a waiting game and my time will come.

I’m guessing a few people are probably wondering why I need a heart, I look just as healthy as everyone else. I usually don’t talk about my condition but I guess a little background information is in order.

I have a congenital heart defect, which means I was born with a malformed heart. I had a very large hole, a bad mitral valve and an abnormally shaped ventricle (the main pumping chamber of the heart). Usually these are discovered in childhood but due to the fact that I grew up in the far reaches of Canada, it was not discovered until I was 19 at which time I was informed I needed open heart surgery to repair it all. What a way to ruin a teen-agers life! I had the surgery but it was a failure and I had to have a repeat open heart surgery 6 months later. At the point I had a few patches in my heart and an artificial valve.

Those experiences led me to try and learn more about my condition and ultimately a career in Cardiology. I tried to live as normal a life as possible, working in Saudi Arabia and meeting Leonard there. While there I developed more problems and discovered that I would need a 3rd surgery to replace my mitral valve again and fix a few more holes that were discovered. I was recommended to go to the Mayo Clinic in Rochester, MN where they had recently developed a Adult Congenital Heart Program. This was a new field that became necessary when all the children who were born with heart defects started surviving into adulthood because of advances in medicine. Prior to the Adult Congenital Heart Program all us surviving adults were being followed by Pediatric Cardiologists. Now there was a whole new speciality devoted just to Adults with Congenital Heart Defects.

I had my 3rd surgery done at Mayo in Rochester, MN and it was a pretty big one. Multiple patches and a another bright shiny new mitral valve. At that point I developed bad rhythm problems from all the scar tissue in my heart and they have plagued me ever since. I still continued to work in Cardiology where my focus unsurprisingly became heart rhythm disorders. Another 20 years passed, I worked full time but battled continuing rhythm problems, eventually having a procedure done to burn all the bad rhythm areas in my heart. That didn’t work and I ended up with a pacemaker and still had rhythm problems. Very frustrating.

I continued to be seen at Mayo Clinic every year and during a routine follow-up I was told that I needed to have not one but 2 of my valves replaced. Another big surgery which did not turn out as expected. By then I had too much scar tissue in my heart and those replacements were not able to be done. Only some repairs were done with the hope that it would be okay. Not all was okay, 5 years later I needed yet another surgery to try and repair the sutures that were coming undone and holding my mitral valve in place. At that time I was told that I couldn’t have any more surgeries and would need a heart transplant next.

I began to follow-up with the Advanced Heart Failure/Transplant team in Jacksonville 5 years ago. Many different drugs have been tried to relieve the high pressures that developed in my heart and lungs as a result of all the scar tissue. Unfortunately none of them have worked and in April of this year I was told I couldn’t wait any longer. An extensive evaluation followed where they check out every part of your body to make sure you are healthy enough for a transplant and I was officially “listed” on the transplant list at the beginning of July. Then the transplant team decided to admit me to the hospital and move me up on the transplant status list where I will wait until the correct donor becomes available.

Congenital heart patients are amazing people. One of my congenital Dr’s explained to me that we are often misdiagnosed because our bodies learn to adapt over so many years and can tolerate conditions that others would find completely disabling. Another Dr. said I was a ticking time bomb. Not exactly the thing I wanted to hear. So although I may ‘look fine’, just remember that only 10% of our bodies are on the outside, 90% is inside. I hope that clears up some of the confusion people have when they see me!! LOL

Greetings All!

We’ve decided to resurrect the blog and use it as a way to keep folks up to date on what’s going on with my heart transplant journey.

I was admitted to Mayo Clinic, Jacksonville on Wednesday, September 17th to prepare and wait for a new heart.
The floor I’m on (11th) opened May this year and the rooms are more like a luxury resort hotel than a hospital. The 100 inch TV and floor to ceiling glass wall make it much more comfortable than a normal hospital. This will go a long way and making my 2 month minimum stay much more pleasant.

I’ve met about 6 other pre-transplant pts and one guy who is 2 weeks post transplant. We sit and play cards in the afternoon and the nurses come to us to give meds or get blood. We’re quite a sight, everyone has their IV pole and multiple drugs going. The Drs and nurses are extremely accommodating to making us as comfortable as we can be for this long journey. One girl has been here nearly 4 months waiting for a heart.

Medical Details (for those interested):
After two tries at putting a pic line in my arms, they ended up tunneling in through my chest. Very painful.
Next they tried me on what they call “rocket fuel”. Real name, Milrinone. This IV drug is used to increase heart function. Unfortunately, for me, it triggered ventricular tachycardia, worsening heart failure and chest pain. After two days that drug was discontinued. It also caused a lot of my other lab work to go out of whack. They are still trying to sort that out and I’m starting to feel my old self. We’ll keep you updated as things change.