Saturday, August 20, 2011

the first six weeks....

The first six weeks. Phew....that was quick.

After the initial "WOW this has really happened" and "we really are the luckiest people alive" reactions... then set in post transplant life. I gotta tell ya it's much easier than our discharge home from living with an LVAD.  (and speaking of living with an LVAD... I've gotta change the name of my blog now, don't I?) 

Let me preface this all by saying I'm still enjoying the high of Kevin being transplanted. I guess I'll come down sooner or later but it's kind of a nice ride.....so for now, I'm going to keep on enjoying. 

Kevin was transplanted on July 5. He came home eight days later, July 13. No attachments, no plugs, no batteries, no LVAD. I had gotten rid of all LVAD evidence in our house before he came home. Donated the PBU, battery charger and batteries back to the hospital. Donated our VAD supplies to another LVAD'er in need. Shower bags, vest, everything...gone.  We replaced it with new medication, anti-reject medication, more dressing supplies, and an entire binder of do's/don'ts for a fresh transplant patient. Oh forgot to mention inside the binder was a schedule of appointments for the next year. Organization. I like it.

Wondering why more dressing supplies? The day after his transplant I remember the CSICU nurse saying to me "oh I can show you how to change his dressing." My head spun around so fast you'd think you were watching that pea soup scene from The Exorcist. Sure enough there was a freaking hole right where his LVAD drive-line wire went through. The very same site that I had to previously do daily dressing changes on in our LVAD days. So, I referred to it as the LVAD hole. Doctors at our hospital wanted it to heal from the inside out. I can safely tell you that six weeks later it is healed. Goodbye sterile gloves & Iodoform.

Kev's cocktail of pills
The medications. In transplant education we were told that since Kevin was living with an LVAD, we were already pro's at "medication management." It's really only a few more pills to take per day and honestly it seems easier this time around. Sure, we had to learn the generic & brand names of all the new medications....the side effects.... but we did the exact same thing when we came home with the LVAD. It's quite a colorful cocktail of pills he has to take twice a day. Honestly, I don't know how he does it...my husband makes it look so easy. But then again, I'm looking from the outside in...this blog is my perspective, not his.

Kev in the waiting room at clinic
The organized binder of do's and don'ts. While it was quite a lot of information to take in, it wasn't a surprise to us because we had been through transplant education back in February...and the transplant team did a great job of preparing us. No sushi. No alcohol. All of his food MUST be prepared well done. No swimming in pools just yet (but he can get wet, splashed at, & even give the boys a bath now). He can't go into crowded places for the first three months (it's not recommended by the doctors). Whenever he goes out, is at clinic, or the hospital...he must wear a mask. It's for his own good during the first three months. Our kids think it's great that Daddy gets to wear a mask. They actually made Daddy a paper mask, colored it and everything....so cute. Honestly, living with a post transplant patient is similar to bringing home newborn twins. Doing our best to keep those with germs away and Purell is everywhere in my house. We joked with people saying we were going to have one of those decontamination showers outside our front door just to be safe. We joked that I would put him in a bubble. But then again, he joked about the same thing when I was pregnant. Our souls were meant for each other.

A year of scheduled appointments = organization in my book. At least we know where we've got to be and when, right? I can prepare ahead of time and get babysitters, plan my work days around these appointments. The first month Kevin had one biopsy a week and clinic twice a week. He tells me that he's awake during biopsy. That during the biopsy he can see the doctor taking a piece of his heart. I remember a Facebook status of his "headed to biopsy where they're taking a little piece of my heart now baby." Post transplant, I am even more impressed with my husband's ability to go through all of this and still smile. Sure, he's been re-gifted life...but biopsies can't be THAT much fun, right? We are in the second month where biopsies & clinic are every other week. Once we hit September, once a month. Where has the time gone? Wasn't I just bitching about not being listed only a few months ago? Clearly I am a lucky girl....
celebrating Daddy's birthday

I'd like to just touch on the emotional part of living post transplant. The first six weeks were a cloud of excitement for sure. It hasn't been all peaches & cream though.  That LVAD hole gave us some issues once where it decided to goooosh blood during one of his biopsies (all was fine with a little pressure applied). Those new meds, the anti-reject meds to be exact, have an entire schloo of side effects....some that you just have to learn to deal.  Cabin fever...not being allowed to really "go" many places until he reaches that three month mark. So while we did have our moments where the roller-coaster dipped low,  it eventually came back up to that high of enjoyment. The first six weeks were clearly an adjustment period...just like when we first came home with the LVAD. But it all comes down to working together, figuring out how to make it work, being the team that we are.... and living each day to its fullest.

The first six weeks seem to have gone by so fast. Now that my family of four is getting closer to approaching "our normal" I am reminded that we still have one more hurdle to jump....his left arm and hand. Ya know until he gets more function back in that left hand or until a surgeon gives him that little bit of good news he's looking for.......my husband has a daily reminder of this entire heart failure experience. He has a daily reminder of what happened during those two weeks of his life that he missed. For me, I am here to make certain he gets it back. Because folks let me tell you, where there's a will, there is always a way. 

7 comments:

  1. AMAZING. AMAZING. AMAZING. Love to hear there are people that truly embody what it is to be soul mates and persevere thru whatever life throws at you. Love all you can and live it up! The Sesmas got mad love for the Riepls!

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  2. Very nice Tracy, your blog will help a lot of people out there. If you are thinking of renaming it, my suggestion is:

    Living With a Studly Man with a Cool Beard and Two Monkeys

    I think that will be a real winner.

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  3. How about the straight forward, simple, "Living with a New Heart" ?

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  4. Tracy you bring out all the emotions in me with your heartfelt storytelling. Love your ending - "When there's a will, there is always a way" and thank god there is a "way" to give you the "will"......you're one incredible wife, mother and woman and I will keep admiring you and learning from you all! Love the photo in the blog of you and Kevin! Just beautiful! Big hug!

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  5. Tracy, as I told you before : you should be a motivation speaker... I was thinking of you this morning while giving a little pint of blood ( got Blood must give , right ? especially when you are Group O- international donor)- Thinking of you, Hugs Evelyne

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  7. I've stumbled onto your site, and it has helped me enormously. My husband is on the transplant list, we are living with an LVAD, and we have two young boys. His heart failure was an extreme surprise - we were vacationing when he got ill. Thank you for sharing your story, it has provided comfort throughout.

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