I haven't felt like sharing my feelings and experiences much of late. Every day is a little better. Trying to be more active (but for me that has ALWAYS been a challenge.)
Seeing Dr. Adams for my first follow up visit. Cardiologist deferring to Surgeon on my meds at this point. As my husband says, I'm a walking apothecary at this point.
Found a great "Coumadin Club" closed group on Facebook which I'm sure will come in handy now that I'm what they call a "Lifer"
Just feeling very contemplative these days as I try to continue in this most recent part of my journey.
A lot of folks have told me "how good I look" lately, like they think I would be at deaths door, I suppose. I think that is because many don't realize the truly amazing things that are being done in surgery these days.
What amazes me is that I'm walking around with all this hardware in it: a pacemaker, an aortic valve, and an anuloplasty ring in my tricuspid valve. I THINK I feel better. I still get tired but I don't know if that is a result of the surgery, the meds, or basic deconditioning.
Again, it's the continued love and support of my family which has kept me going. And MANY wonderful friends.
I was expecting to be tired, but I'm very overwhelmed by the fatigue, anxiety and roller coaster of feelings which seem to have taken over. Feel as if I'm in a quagmire at the moment. I know that I'm suppose to be "active" in some manner. At least I'm off the pain meds and I'm not so loopy.
I don't know if it was stress or changes in medications due to the upcoming surgery, but I had a MONSTER headache last night. It got me nervous thinking that if it didn't resolve that things would be delayed. But thankfully, I felt a lot better as today wore on.
Got LOTS of calls from family/friends in the last 2 or 3 days. It's great to know that you're loved, but also emotionally draining and knocks me off my axis a bit. I feel like the way that I've gotten though all of this is by having tunnel-like vision and just going from one thing to the next. I realize that I've almost had to numb my emotions a bit as I have moved through the last few weeks.
Tomorrow afternoon my husband and I go into NYC and meet my parents to stay overnight so that we can be in Manhattan and not have to deal with extensive travel.
I'm at the point where I feel that I've done all that I can possibly do. Now I have to leave it up to others--and to my faith--to move through this next phase.
They have me put this Bactroban Nasal ointment in my nose for a few days prior to the surgery to prevent spread of infection. After a few minutes, I begin to get this funny taste in the back of my throat. I'm drinking lots of water to try and get that taste out of there.
Why do I think that this is just the beginning of yucky things that I will have to deal with in the coming weeks?
We have to put our dogs in the kennel today in preparation for the surgery, as it's a holiday weekend and they won't take them in on Monday because of Memorial Day. The house will be TOO quiet and I could have used their company, love and reassurance as the countdown to surgery continues.
It's Saturday. At least we have plans that go into this evening. Then Sunday and Monday and then....the BIG event!
As I've told many, my attitude at this point is, "I just want to get on with the surgery so that I can begin my recovery."
I can't believe that after all the waiting that this surgery is finally almost here...Tuesday, May 27.
I'm surprisingly calm considering the fact that surgery is in a few days, but I've been though so much before and I know that this is only another event in a series of medical adventures.
I've put so much into preparation for this upcoming surgery...research, reading, getting paperwork in order, making phone calls. It's all good.
It's another moment to stop and as a colleague said to me yesterday, "smell the roses". I'm looking at this as an "opportunity" to appreciate those I love and how fortunate I am to have access to good medical care.
This latest medical adventure has drained my vacation and sick leave "bank account" and it's pretty much bankrupt at this point. Facing at least two months of leave moving forward is do-able but NOT preferable.
We have a voluntary leave donation program at work. So I put out a call, and there ARE angels out there. To date, colleagues have donated about a month's worth of leave to me.
I'm amazed and grateful for the ongoing support that I've gotten from the workplace.
Along with that, I'm SO grateful for my husband, my parents, and others in my family who continually support me through these trials and tribulations.
In a little more than a week, physical repair and healing will begin. Thankfully we live in times when this is possible.
I've been trying to wrap my head around this latest medical adventure, but only now have been able to sit down and write about it. My boss continually tells me that I should write my life story, but the thought of it is, frankly, a bit exhausting.
Here's the medical side, anyway. All that has happened pretty much originates from my diagnosis and treatment for Hodgkins Lymphoma at age 24. Since then, the ABVD and Mantle Field Radiation have resulted in a cascade of long-term side effects. Hypothyroid and depression in my 20s and 30s; heart block (pacemaker surgery 2X), breast cancer and aortic stenosis all in my 40s (and I'm not even halfway through the decade as of yet).
From other Hodgkins patients that I've encountered, it seems that 20 years is the time when all these "lovely" side effects decide to appear. More and more of us are showing up with cardiac damage. I've been looking to connect with other Hodgkin's survivors with such issues.
Shortness of breath has been my long-term companion for the last few years and just recently my aortic stenosis became severe with symptoms. Apparently my mitral valve also has some damage (which was only discovered during my cardiac catheritization.....another "joyful" procedure)....all resulting in a fabulous pulmonary hypertension.
I've decided to go with Dr. David Adams at Mount Sinai. It seems that I'm "touring" the NY City Hospitals, having received care at MSKCC, Cornell Weill and various others along the way. Eight days in the Hospital, I'm told. Who stays in the Hospital for 8 days in today's healthcare world? Only REALLY sick people.
So today I completed pre-admission testing. Surgery is scheduled for the day after Memorial Day, May 27, 2014.
I must say that Adam's book has been a real resource for me. This site has been a real lifesaver. I continue to go back to it to review info and it has been truly reassuring.
The worst part of this so far is the waiting....I just want to get this thing over with!