It’s been a little while…how are you?
I continue to be infinitely grateful for the love and support I receive every single day. I never realized that “how are you?” would become such a difficult question to answer! Sometimes people want a quick answer, and In those cases, I’m cool with saying that I’m doing fine. But it’s not always completely true. The truth is more complicated…
Overall, I am doing well. The meds are doing their thing. I’m trying to take a short, slow walk every day, and most days (with a lot of help from my husband), I succeed. I’m working, which is tremendously fulfilling.
Some days—sometimes, some hours—are better than others. My sleep is often unsettled, and I get physically, mentally, and emotionally fatigued, which is frustrating. Sometimes my heart races, which is scary and uncomfortable. Sometimes my body retains some extra fluid, which makes breathing a bit difficult. Sometimes my vision blurs or partially blacks out, but only for 30 seconds or so. Getting used to all of this is a slow process; part of me still finds it hard to believe and thinks I’m going to wake up one day be healed.
But all of that said, I’m learning to live within the new boundaries. I’m appreciating the good hours and days more than I ever thought possible. In my worst moments—usually in the early morning hours—I wonder whether I was meant to survive this. That passes, though, and I know I wasn’t meant just to survive, but thrive.
And I intend to continue to do so.
Now, some practical updates…
After my last appointment with Dr. Desai, I needed to find a cardiologist at Tampa General Hospital (TGH). Implantable cardioverter defribillators (ICDs) are really expensive, and insurance would only pay half of the contracted rate if I have it done at Brigham and Women’s, but they’ll pay the full whack at TGH (anything done outside of Florida is only covered at 50%). Plus, it is a surgical procedure, so I’d rather have it done close to home (TGH is about an hour away).
My first stop was the insurance website. I looked for cardiologists affiliated with TGH within 50 miles of my zip code who were accepting new patients, and the website spit back 157 names. Cardiology has approximately eleventy billion sub-specialities, so I was able to arrow the list down by using increasingly specific criteria. I ended up with 19 names.
Next up was the state licensing database. I plugged in each name, and checked out their educational background, research, and publications. I eliminated anyone who didn’t list an email address because Dr. Desai has spoiled me, and I don’t intent to put my life in the hands of someone I can’t communicate with.
After that, I had nine names left. Interestingly, just one woman; cardiology is truly male-dominated. I spent a couple of days writing an email, trying to communicate enough relevant information about my situation while respecting that these are busy folks. I sent it off to all nine of the doctors.
A few hours later, my phone rang.
Dr. Guillermo Cintron was wise and kind. And, much to my initial dismay, retired. He still advises physicians, but he stopped seeing patients at the end of last year. He asked me some questions and answered far more, and recommended that I see Dr. Ben Mackie. Dr. Mackie had been one of my nine finalists, and Dr. Cintron explained why he would be an ideal doctor for me and promised to speak with him about my case.
Because Dr. Mackie sees patients both at his physician group office and at the transplant service at TGH, there was some confusion (mine) in getting the appointment squared away, but now it is. I’m seeing Dr. Mackie on April 5 at TGH.
Dr. Desai knows Dr. Mackie, and said that he is absolutely the right guy for me to see. I’m thrilled about this, because I know and trust Dr. Desai, and he is happy to continue to oversee my care.
I did hear from some of the other doctors I’d emailed. A couple of them wrote back to me directly. One had his lovely and helpful assistant contact me. Another had his rude and obnoxious assistant call me to demand to know where I had gotten his email address. When I told her, as sweetly as I could manage, that it was in the state licensing database, she damn near called me a liar. I hung up on her. My point here is that I’m surprised how many people accept this kind of treatment from physicians and their staff. I’m a big fan of treating people with respect, and I see no reason anyone should treat people with any less.
As part of getting the appointment with Dr. Mackie set up, I had to get my medical records sent from BWH, the local hospital where I initially went to the ER, and both the places I’ve had tests in the last few months. If I had any doubt about the importance and value of electronic medical records (if we can ever make them function up to their potential), I sure don’t now. It was quite a feat to get everything sent, and Wendy at the transplant service at TGH was terrifically helpful.
The other day, I got the big packet of info Wendy sent. It’s the same one everyone coming into the transplant service for the first time gets. I started to read through it, but had to stop…it was just too much information, and I got upset when I got to the list of transplant exclusion criteria because diabetic retinopathy is on the list. I don’t need a transplant right now and the retinopathy I have might not be bad enough to exclude me if I ever do, but it’s still depressing.
But even if I get to that point, there are options, including a Ventricular Assist Device (VAD). It’s good to have options. I’ve also been reading about the many ICDs available, as well as the procedure to implant it. I’ve come to think of it as becoming bionic. That makes it less scary to me somehow. The procedure is quite safe; there are serious complications in only 1% of cases. Of course, my track record with odds isn’t great, so that makes me nervous. It only requires an overnight stay in the hospital, though, so that’s good. But the next step is the appointment on the 5th; I’ll also have another echocardiogram then.
I’ll know more after April 5, and I’ll report back!
Thank you for reading. I’m here because of you.
And I meant what I said at the start…it does my soul good to hear how you’re doing. Please let me know!
Love you, E. Sending good thoughts, love and hugs as always. I may not say it every day, or even often enough, but I’m always thinking of you.
You’re always with me…and you send mail! Plus, Bug reminds me every damn day when he has his pill that you’ll file an injunction on his behalf if I’m not careful.
I ‘met’ you recently but it sure helps to read this. I am on dialysis and have gone through much of the same stuff as you have. No one talked to me before the procedures started, and there was no support group. I went in to it innocently but didn’t understand the relationship among various factors. For example:sodium. Retains water. So who cares? Well, it raises my weight, It makes it hard to breathe, and yes, potassium affects the heart somehow. Just wish they had told me why instead of “no”. I need to see the big picture. Thanks for your update. And good luck.
Thank you, Jean! It’s so true…there are so many factors. I’m very lucky that I was never a fan of salt, but I sure never realized how much of it is in just about everything.
You are always in my thoughts and prayers. Thank you for the update because I always want to ask how you are doing.
Love you to the moon and back.
xoxoxoxo
Delighted you seem to have found the oerfecy doctor. This ICD sounds like a good option. Keep us posted. Lots of love to you and hubs.
Thank you, Paulette!!
Love the Internet, love the research that can be done–with a nod toward checking things closely, and love that the doctor you found is ‘absolutely the right guy’ for you according to a doctor you know and trust.
Thank you for the update, dear Erin. Think of you so much! Consider saying bionique because you are so chic xxxxx
Je suis bionique!
I was so relieved that Dr. Mackie is Dr. Desai-approved!! 🙂
All the love in the world is heading your way… You are amazingly strong and I admire your courage and strength. Hugs and love and good thoughts- S.
xoxoxoxoxo
Erin, my son-in-law’s sister had a transplant and she is doing great. I hope it doesn’t become necessary for you, but if it does, know that the results can be all that you desire.
Thank you, Bomnie! My dad had a transplant almost 23 years ago 🙂
Sending you love and light and much energy, Sweetie!!!! <3 Marie
xoxoxoxoxo
If you had a dollar for every time I think of you, you would have more than enough to pay for every procedure you’ll ever need, even without insurance.
You’re not only meant to thrive, you have thrived and are thriving, and will continue to do so.
Sending you lots of love and positive energy.
xoxoxoxoxo
Well Erin dear, I am so pleased to hear that things are moving along, I love the fact that through all this your sense of humour still shines through and most importantly I am just pleased. I am not close enough to give you a hug but know that it will be the first thing that I do the next time I see you.
xoxoxoxoxo
Erin,I think about you a lot and send healing mojo everyday. I am hoping I can help you with practical stuff once I get to FL permanently.
Hooray!!! 🙂
Sending you love, energy, good wishes, happiness, and a bit of Irish luck.
xoxoxoxoxo
I understand that overwhelmed feeling. But you have been handling everything with such aplomb. And I think your process and your grace as well as your smarts have brought really great doctors. The story of the retired doc calling and recommending someone is so wonderful. Also that Desai knows the guy!!
Thanks for keeping us informed!
Erin, continuing to send you hugs and all the best wishes. It’s so great to see these caring doctors (even retired!) being there for you. I love how you have chosen to think of the VAD as you “becoming bionic”–that’s such a great way of looking at it. If it helps, I’ve known folks who were really frantic about the procedure, who were amazed at how it well the process went and are now thrilled with how their quality of life has improved. xoxo