My Little Sidekick

Posted on March 22, 2019 by REJ

My furry little friend has been the subject of my photo of the day for a few days now. It’s so nice to have my little sidekick with me again. It’s been six months since Thor and I’ve been together and we missed each other. He’s transitioned to apartment living really well and seems to be enjoying our trips down to the doggy area a few times a day, not to mention the car rides. Having him here helps me feel better when my husband’s not in town; I’m not as lonely. He’s such a sweet boy, and although he looks like a puppy he’s going to be seven years old on April 22nd.

I was worried he wouldn’t remember me and maybe not recognize me because my heart beat is so different, but that wasn’t the case.

No, I’m Not OK!

Posted on March 15, 2019 by REJ

Physically I’m fine…don’t get your knickers in a bunch, emotionally I’m NOT ok. There is only so much a person can take before it’s just too much. I don’t even know where to start. I spoke with the psychiatrist today and we both agreed that I don’t need to be medicated and that my current state of mind is very situational and not chemical. Well, chemical in the sense that the transplant team keeps messing with my medication, but beyond that I don’t have a chemical imbalance that is affecting me mentally.

So, what’s my problem?

I want to go HOME! I’m tired of this little apartment and being by myself. There is only so many episodes of the Kardashians a person can watch and the Real Housewives of New Jersey sucks! I’ve already watched the entire series of M*A*S*H, West Wing, and the last season of Shameless. I miss my dog, and I know that sounds stupid but I haven’t seen him in six months. My meds are off, but I’m not sure how. My head’s been feeling fuzzy like I’m drugged (technically I am but I shouldn’t FEEL it), and of course the transplant team immediately said I should talk to the shrink! I lost my appetite about six or seven weeks ago so if I don’t “force” myself to eat I don’t, I’m just not hungry most of the time. I’m still retaining water but my heart cath results would suggest I’m dry, however I can gain and lose 5 to 10 pounds in 24 hours. My head is still the size of a watermelon because of these stupid steroids and probably the reason I’m retaining water. Sprinkle in some family drama and I’m pretty much a mess at the moment. Oh, and did I mention I’m lonely? That sucks too…

Most of this is temporary, I know, but that doesn’t make it any less painful at times.

22 Weeks and Counting

Posted on March 12, 2019 by REJ

It’s been 22 weeks since my transplant and in some ways it feels like a long time ago and in others, not so long. With any luck I’ll be able to go home to Wyoming next month, but that’s assuming they can tweak my medication properly and my next heart biopsy comes back with no rejection. The one thing I’ve learned about the transplant team here at University of Utah is that they are extremely conservative; I’d be shocked to hear they let anyone go home before the six month mark.

To say I was getting bored or was lonely would be an understatement. There is only so much you can do in 680 square feet. Of course I can go out, I’m not sequestered to my apartment, but going out by myself isn’t a whole lot of fun. I really just want to go home. I wouldn’t be lonely there and it’s never boring at home. My husband is bringing my dog for the last few weeks I’m here. We didn’t bring him earlier because I had to be healthy enough to take him outside every few hours. I’m up for it now, but wouldn’t have been a month ago. Having him here will help a lot when I’m by myself and my husband is back home working.

My next heart cath is the 26th of March and assuming I still have no rejection and my labs look OK we should be talking about when I can go back to Wyoming! I feel great, tired sometimes, but otherwise significantly better than I have in about four or five years. In addition to the transplant going well, my Amyloidosis seems to be staying at bay for now. My light chains…the kappa free light chains and lambda free light chains…are at an all time low. Those are the little proteins my bone marrow can over produce that cause lots of problems. April 13th of this year will be four years of remission; not bad after getting a 6 to 18 month prognosis to start off with.

Beyond remembering when all my kids were born and married, plus my husband’s birthday and our anniversary (which I’ve historically gotten mixed up!) I have my own birthday, plus my stem cell transplant date (April 13, 2015) and the date of my heart transplant (October 8, 2018). It’s all too much to remember, maybe I should get some of these dates tattooed on my body just in case…LOL!

DNA

Posted on March 7, 2019March 12, 2019 by REJ

Anyone that knows me very well knows I didn’t grow up with my biological father. Being that he and my mother were both 17 when I was born it stands to reason I may not have grown up with him around; how many children born to teen fathers do? It was never a secret who he was or where he was. My mother never kept me from him in any way. I even recall him coming to our home when I was about seven years old and giving me a birthday gift. I saw him again when I was 18, when I went looking for him; that didn’t go well. Then again when I was 22, pregnant with my oldest son, I was introduced to his wife and four children; my half siblings. It still seems strange to think I have four siblings out there that I know virtually nothing about, but anyway, that’s a story for another time. There has really been very little contact between us and almost all of it initiated by me.

When I was diagnosed with Amyloidosis in 2014 I reached out to him again. I mean really, he couldn’t ignore me anymore, could he? I was dying! I had just been given this awful diagnosis, and told that the mortality rate was about 6 to 18 months. Certainly he would have more than a few words to say to me, but no. When I spoke with him I didn’t know what kind of Amyloidosis I had and the only time he called me back was three weeks later to find out if the disease was hereditary or not, I didn’t hear from him again. Really, he didn’t know if I was alive or dead, and that’s when I decided I would just be fatherless. It would be easier to just not have a father (in the human sense, God my Father is a whole different story) and pretending he didn’t exist might shield me from the hurt I felt knowing, finally, that he really didn’t care!

During that last contact with both he and his wife, I was surprised by a speculation on their part that I was not his daughter. Now keep in mind I’m 43 years old at this point in time and this is the very first time I am ever hearing that he has any doubt that I may or may not be his offspring. His wife spouted off something about blood type, that was wrong, but otherwise no one gave me any information about why they doubted my paternity. Of course my mother has never wavered as to who my biological father is, and I believe her wholeheartedly. I don’t think a mother would lie to her daughter for 40+ years about something like that and I have never thought she did. But the lack of contact after knowing I was diagnosed with a terminal disease and the speculation that I wasn’t his child certainly explained why he didn’t appear to care how I was.

Fast forward to 2019 and me sitting around a little apartment in Salt Lake City almost four years in remission from that nasty disease that should have killed me, healing from a heart transplant. I get to thinking, does he even know if I’m alive, and does he really doubt I’m his daughter? Again, I tracked him down and called. Again, I was told that he doubted it, however this time I was given a name of a possible “alternate” father. Ultimately you have to love modern medical technology! Why don’t we put this all to rest once and for all. I don’t know that things will be any different once we have definitive proof, but a DNA paternity test would put this whole thing to rest. Assuming he is honest on his end and swabs the inside of HIS cheek and not his co-worker’s, we should get the results I’ve always known, and I think he has too, and that is, he’s my biological father.

So, you want to know the results, yeah, so do I! We’re still anxiously waiting. It shouldn’t take long, we both sent in our samples right away and it only takes 2 to 3 business days to process. Assuming the lab got our samples about the same time we should know by tomorrow, Monday at the latest, what the results are. Until then, we tentatively text each other in this weird kind of way, I’m not sure how to explain it. I feel like he’s texted me more words than he’s spoken to me in 47 years. Unfortunately, his contact is still for informational purposes, and not really an inquiry about me. Any results yet? I’d be lying if I said it didn’t hurt. I don’t know him, and I don’t know what his life has been like, or what he’s been through. There may be perfectly valid reasons why he’s stayed out of my life, I don’t know. I hope once these results are in he’ll tell me.

UPDATE 3/12/2019: Probability of Paternity: 0% – I guess I’m on the hunt for a new “baby daddy”

Advocate

Posted on February 18, 2019February 21, 2019 by REJ

Another short stay in the hospital has reinforced the concept that as patients we need to advocate for ourselves better.

It’s not necessary to get frustrated, anxious, angry, etc. Being kind, polite, and calm has been the way I’ve been able to get my point across to my medical team the last several times I’ve seen them either in an outpatient or inpatient setting. That’s not to say I’m not frustrated, anxious or angry; I’ve simply found that succumbing to those emotions doesn’t help me get what I need. What I need is to be heard! If they hear me then ultimately, I receive the care I need, not the care they “think” I need, which by the way, wastes a lot of time.

What’s the point of getting frustrated with the nurse who’s simply waiting on the doctor to put in the orders for your medication? Why get angry at the pharmacy tech because they’re out of Tamiflu and you have to go to another pharmacy to get it, it’s not their fault they’re out. And will getting anxious make a procedure go smoother, or test results come faster?

Most of the people we encounter on a regular basis as we go to and from our medical appointments didn’t go into this line of work to get rich. They started off with a desire to server others and care for them. By treating them with dignity and respect, they hear us, and in turn we get the care we need. I’m not suggesting this as an absolute, we’re always going to encounter the medical professional who doesn’t want to hear what we have to say, but I believe that’s the exception and not the rule. It’s all in our approach and how we advocate for ourselves.

I spent the last 24 hours in the hospital because I have the flu. Kind of a bummer for a person who had a heart transplant 19 weeks ago, but my stay could have been longer had I not advocated for myself and made it clear to my medical team what I was expecting regarding my care.

Please follow my medication schedule to the best of your ability. I have it down to a fine science and deviating can sometimes cause problems. After being given a detailed list of my meds and when I took them, they made every effort to follow it; not to perfection, but good enough. I certainly appreciated the effort. I don’t feel “that” bad, and my blood work would suggest I’m stable, so let me go home and be sick in my own bed. It’s people like me in a hospital that makes hospitals huge germ factories. They had me in isolation, but every person in and out of my room was a potential carrier of my flu ridden germs. My doctor found my argument for release to be totally valid and put in orders for me to be released right away.

Now, I’m home in my little apartment, drinking my own bottled water (cold), eating my own food, laying in my own bed, not spreading my flu around, and significantly more comfortable than I was in the hospital.