Category: The Drugs

Photo Challenge

Husband and I – January 1, 2019

I’m going to try the 365 day photo challenge again this year. So here is photo #1, my husband and I in one of our favorite places to hang out…in bed. I’m going to have to get use to having my photo taken, OY! This Prednisone face with bullfrog neck is driving me crazy, but it is what it is. At least my hair looks good. Thankfully, I won’t be on this dose of Prednisone forever so the size of my face will go back to normal, eventually.

I got the results of my December 27th right and left heart biopsy and blood tests. My white blood cells are back to normal, which means my bone marrow is finally doing it’s job. All of my other blood work was good, just needed some minor tweaks to my medication. I was finally cleared to drive, so I got to drive myself to cardiac rehab on Monday. My biopsy came back with no rejection…EXCITING! Even more exciting my Kappa and Lambda Free Light Chains which would be a measure of the amyloid in my system were the lowest they’ve ever been, meaning I’m still in complete hematological remission.

I’m so happy I’m starting to feel healthy again…

View the entire Gallery.

Tomorrow’s The Day

I have my annual baseline right and left heart cath with biopsy, plus a bunch of blood work, an ECG, an echo cardiogram, and to top it off a clinic appointment with The Team…all tomorrow. Which means, I won’t be sleeping much tonight. That’s kind of how it always goes the night before a heart cath. I’m not going to lie I’m a little nervous for this one. My a last right heart cath with biopsy was on December 3rd, two weeks ago, and I had some minor rejection. Now, in the grand scheme of things the kind of rejection I have is very fixable, so I’m not worried about that. I guess what I’m worried about is that it’s been so long since the last biopsy, and about a week since my last blood test.

My white blood cell count was still low, but on the upswing, slowly. Because of that I was taken off of one of my anti-rejection medications that has a tendency to mess with your white blood cells, so, I’m not being fully immunosuppressed. That’s why I’m still on a higher dose of the steroid Prednisone. I’m not expecting no rejection with this biopsy so my Prednisone dose will likely stay the same or go up. Gotta love this balloon face of mine. I’m hoping for normal white blood cells and be able to go back on the Myfortic also known as CellCept. I’d like to get this immunosuppression thing figured out so I can have some biopsies with no rejection and get this dose of Prednisone down to a manageable level and maybe my face will go back to it’s normal size. The rest of my body is on it’s way to getting back to normal, it would be nice if my face would follow.

I’m hopeful though, my cardiac rehab has been going really well. I go Mondays, Wednesdays, and Fridays, then on Tuesdays, Thursdays, and Saturdays, I work out at home. I’ve been climbing the six flights of stairs up to our apartment and this week I started going down as well. Plus, I do ballet barre in my kitchen or my balcony (if the weather is warm enough). Pliés, dégagés, relevés, fondus, and lots of stretching are about all I can do right now, but I’ll add  more as I get stronger. Oh, and I can get my leg on the balcony railing and the kitchen counter 🙂 I’m sure the neighbors think I’m crazy when I’m on the balcony doing ballet…LOL!

I’m feeling good though and I’m hoping my tests tomorrow reflect how I feel. I’m feeling a little stronger every day. As a matter of fact on December 28th I should get the go ahead to start driving again…I can’t wait!

When things feel a little tough I just remind myself that this is #tooeasy!

 

The Ups and Downs of Prednisone

Prednisone happens to be one of the anti-rejection medications I have to take, regardless of the side effects (see below). I may not have to take it for the rest of my life, some people are able to wean off of it completely and some have to stay on a very low dose for the rest of their lives. Prednisone helps with the cellular rejection of the new heart. Right now I take a moderately high dose and the higher the dose the more side effects you have. For me, what I notice the most are the mood swings, and the swelling in my face, of course, but I have some of the others as well.

Google says Prednisone is used for conditions such as arthritis, blood disorders, breathing problems, severe allergies, skin diseases, cancer, eye problems, and immune system disorders. And it belongs to a class of drugs known as corticosteroids. I find it ironic that some of the things it’s suppose to treat is causes. Regardless, of all the medications I have to take it’s by far the worst of the bunch, in regards to haw it makes me feel. I’m hoping in the future I will be able to wean off of it completely or be on the lowest dose possible.

Common side effects of Prednisone include:

  • Headache
  • Dizziness
  • Trouble sleeping
  • Inappropriate happiness
  • Severe mood swings
  • Personality change
  • Bulging eyes
  • Acne
  • Thin, fragile skin
  • Red or purple blotches or lines under the skin
  • Slowed healing of cuts and bruises
  • Increased body hair growth
  • Changes in the way fat is distributed in the body
  • Extreme tiredness
  • Weak muscles
  • Irregular or absent menstrual periods
  • Low sex drive
  • Heartburn
  • Unusual sweating

Serious side effects can also occur. If you have any of these side effects, stop taking Prednisone and call your doctor right away:

  • Vision problems
  • Eye pain, redness, or tearing
  • Signs of infection, such as sore throat, fever, chills, and cough
  • Seizures
  • Depression
  • Loss of contact with reality
  • Confusion
  • Muscle twitching or tightening
  • Involuntary hand shaking
  • Numbness, burning, or tingling in the face, arms, legs, feet, or hands
  • Upset stomach or vomiting
  • Lightheadedness
  • Irregular heartbeat
  • Sudden weight gain
  • Shortness of breath, particularly at night
  • Dry, hacking cough
  • Swelling or pain in the stomach
  • Swelling of the eyes, face, lips, tongue, throat, arms, hands, feet, ankles, or lower legs
  • Trouble breathing or swallowing
  • Rash
  • Hives
  • Itching

 

Uncooperative

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!

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.