That’s how I would describe my body right now….uncooperative. I want to do more than it can handle in a single day and yesterday I ended up in bed all day out of sheer exhaustion. I do have a cold (all the blood work indicates I don’t have anything), and Salt Lake City has had some wicked smog that doesn’t make me feel any better. So, going on a week and  half of the creeping crud and I’m hoping by Monday it will back off a bit; my nose could use a break from all the Kleenex.

How do people recover from a heart transplant? I guess I wasn’t prepared for it to be this difficult physically and mentally. My body just doesn’t want to fully cooperate and get with the program!

First it was water retention, and we’re talking a lot of water, like 40 pounds of it. That landed me in the hospital for 12 days. I was on a 24/7 diuretic drip for over a week for crying out loud. Can you imagine how many trips to the bathroom that was? Of course when I’m retaining water my kidneys and my electrolytes get thrown off.

Speaking of kidneys, those little buggers have been giving me a run for my money. One day they want to work right and the next they don’t. We’re all finally moving in the right direction but it’s taken two months to get there. It’s like every organ in my body has to reboot itself one at a time.

My pancreas even had it’s little tantrum. First it didn’t want to produce enough insulin then it made too much. That landed me in the ER under observation for 24 hours with a blood sugar reading of 40 (way too low)…I was told I should not have been walking and talking, but in a coma. So they main lined sugar into my veins and I drank more grape juice than I will ever consume again in my life. Thankfully a medication change reversed the low blood sugar and a few days later it was too high again, go figure. With some minor medication changes everything is back to normal.

The liver, lungs, and spleen, seem to have come out of this unscathed.

Now, we’re dealing with my bone marrow! Seriously…it doesn’t want to produce enough white blood cells? I’ve been here before after my stem cell transplant where I had no white blood cells for awhile. Well, it appears my bone marrow isn’t happy with the heart transplant and is currently being very uncooperative with the white blood cell production. If they drop any more there is a solution, a painful one, but it will force my marrow to produce more; I’d just like to avoid that route if I can help it. It would require taking a drug that makes your body over produce stem cells. I received it when I had my first transplant and it’s not pleasant to say the least. With my first transplant I got one dose, and was in so much pain they gave me morphine, which we found out I’m allergic to. But, in this case I would need three doses over three days….Lord help me. I told the doctors out right they better keep the pain meds flowing. Oh and the best part…NOT…they would prescribe it and I would have to give it to myself by subcutaneous injection. Oh well I already give myself B12 shots why not one more.

Really, after the bone marrow/white blood cell count thing is resolved I’m hoping there aren’t any more complications and my body will have completed it’s reboot process. I’d like some simple cooperation here! Is that too much to ask?

I haven’t even touched on the mental aspect of all this. I had always been a Zoloft and Xanax girl for my PTSD and Acute Anxiety Disorder. Actually, I had been able to manage for years without medication, it was only as I got more sick that I wasn’t able to keep it under control. Now, we have Klonopin and Prozac on board. Klonopin is still a benzodiazepine like Xanax but it lasts long and I don’t need a very large dose; same with the Prozac. So far so good. Of course neither of those medications help with the survivors guilt; there’s no drug for that. I’m still asking the question, why do I deserve a new heart? Maybe someday I’ll feel like her heart is mine, but right now it still doesn’t quite feel like it’s mine. I can’t feel it beat, which is a weird sensation because I could almost always feel mine beat no matter how fast or slow it was; this one just hums along quietly.

Another weekend and on Monday more blood work and maybe back to cardiac rehab feeling better. As long as my body will cooperate!

A First Look

Here’s a first look at the Post Its that I put on the wall in my ICU room while I was waiting for a heart…there are over 200. Included are also the number of days I waited for a heart in the ICU and the names of the doctors, nurses and aids that took care of me.

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This is Hard

A heart transplant is no joke. Today is 9 weeks since my surgery and I’m still too weak to be on my own. I’ve been out of the hospital for only 3 of those 9 weeks and before the surgery I spent 14 days waiting. So in 9 weeks I’ve been hospitalized 3 times for various things and now, in week 8 and a half I got a cold, so I’m stuck in my apartment with a runny nose and a cough, so much fun. Thankfully blood tests have shown I don’t have anything serious.

I’m tired, shaky (tremors), medicated to the max, weak, and trying to fight my way back the best I can. More than anything I’m BORED and not always in the best mood. We can blame the steroids on the weepy mood swings and sharp attitude. 

Cardiac Rehab is 3 times a week, Monday, Wednesday, and Friday. I’m able to get thru it most days but some are much harder than others. Once I lost all the water weight I gained over 2 years I realized I had no muscle mass left, so building up the muscle in my legs has been a challenge. We’ve started working on my arms and just 3lb weights are kicking my butt!

The hardest part of all of this are the heart caths and waiting for blood test results and heart biopsies. I’ve had two biopsies come back with minor cellular rejection; nothing out of the ordinary. Especially since they are still tweaking my meds. I have also had biopsies with no rejection so that’s good! In the grand scheme of things that can go wrong, rejection isn’t at the top of the list. All of my other organs working properly can be much more dangerous. Like my pancreas, kidneys, liver, lungs etc. My pancreas finally kicked in and is managing my blood sugar properly, my kidneys were in trouble for awhile and they are finally rebounding, and thankfully my liver and lungs haven’t given me any issues. 

And my heart, it beats perfect, looks perfect, and the only reason I have some minor rejection is because they aren’t fully immunosuppressing me yet, but that is all part of tweaking my meds to get them just right. 

So, it’s hard, but I’ve come this far, I have confidence I can make my way back to being healthy again. 

50 Pounds! Really?

I wish I could explain what it’s like to have a heart transplant and if I could somehow make your body feel like mine right now, or allow your mind to go to the places mine’s been, I would absolutely share it. I’ve learned so much about myself and about my body in this process, and although it may seem like such a small thing, it’s become one of the most significant and trans-formative.

I’ve written before about my water retention issues, having to take truck loads of diuretics and electrolytes to just keep my body going; to keep my heart beating. It was a brutal balancing act I did for over 2 years. In that time I just kept gradually gaining weight; 5lbs up then 2lbs down. From a a healthy 145lbs to a life threatening 196lbs. I knew the water was there but as it sits it settles in your tissue and it no longer just flushes out of your system with a little diuretic, you have to force it out. All the while keeping your kidney function healthy and not putting yourself in jeopardy of needing a second organ.

Some doctors tried and they could get 10 to 15 off of me to give me a little break from the fluid overload, but it was never really enough. When your fluid overloaded and retaining that kind of water, you can’t breathe. It’s not in your lungs, but in the tissue around your lungs and heart to the point that it feels like someone is always squeezing the air out of you. Simply put, you can’t take a deep breath. Then I had some doctors who just ignored me and did nothing but watch me get bigger and bigger. Finally after being hospitalized at home one last time before travelling to Utah for my transplant I had enough and decided if the doctors couldn’t figure it out I was going to.

Obviously my diet had to change but not in the ways you’d think. Of course I was fluid restricted, and I drastically reduced salt intake, but I had to go beyond that. I had to move to an almost all protein diet, and for this veggie, pasta, rice, lover of cooking all things, this was a hard transition. Really the only things off limits in our house has always been brussels sprouts, liver, quinoa, and snails! I could get my husband and youngest son to try anything else and they would do it with joy, just wondering what suggestions (recipes) I attempted that night. I probably got more joy out of it than they did but they might debate me on that. Back to the point…food is an important part of my life and my family’s and having to make such dramatic changes was difficult but I managed to stretch that 15lb loss into a 25lb loss before getting to Utah.

All and more of that 25lbs I lost before the transplant came back in a very short period of time and has been causing some problems. Even the doctors thought I had walked into the hospital pretty close to what they call my “dry weight”, meaning not carrying any significant water weight. Today, as I continue to lose weight and I watch my body literally change in shape, man were we all WRONG! So wrong…just wrong, wrong, wrong. My real dry weight IS 145lbs and I’ve been packing around 51lbs of water. I’ve lost 29 of them so far so I have 22 left but they are literally falling off in pounds at a time from one day to the next. Yesterday I had no waistline and no hips, today I looked in the mirror and saw my hips for the first time in over 2 years. From there I took one of the deepest breathes I have been able to take in as much time. It was enough to make me weep.

It’s not about my weight, the weight it just the shocking number that brought to mind my ability to fill my lungs in a way I haven’t been able to for a long time. At this rate, given that I have a new heart, and my body is now able to shed the excess water it doesn’t need, I should be able to heal that much faster, get thru cardiac rehab, and get to the boxing gym to start my next career as a bad-ass kick boxer!

Four Years

Amazing that exactly four years ago today I was sitting in my hematologists office at Mayo Clinic in Rochester, MN and he told me I had Immunoglobulin Light Chain Amyloidosis (AL), aka, Primary Amyloidosis. Only four years ago and here I sit in the hospital in Utah healing from the heart transplant I needed because of that disease. Seems like such a tiny blip in my life and yet it feels like it consumed so much of me. This date is always an emotional day for me though; it was the day I was shown my mortality, something I never expected to have to face at 42 years old. Four years later and my mortality and I are well acquainted and much more comfortable with each other. Now I have been gifted another chance to live. The first life line I received was a stem cell transplant, and now another in the form of a heart. Grateful isn’t a strong enough word for what I feel. I’m not lucky, I don’t believe in luck, and I’m not sure if I deserve it yet, but I will, blessed, for sure, and thankful beyond words.