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Charlie's Journey.

Charlie's Journey. Join me on the Highs and Lows from my Pre-Evaluation to a new heart, to ruling out other rare diseases.. Thank you in advance for sharing this journal,[...] read more

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Posted 2019-08-19T23:05:00Z

What you talking bout Willis?

EchoPFTCardiac CathWhen you start a blog, or when your friends ask people to donate to you, you kinda feel the need to inform them on what's happening with you and the reason they gave said money, which is something I'm getting used to doing, being a private introvert and all. So here we go; When you start an evaluation for any transplant, they inform you that sometimes the tests they run can lead to discoveries that might not be so good and some patients have to have their evaluations put on hold or even canceled. Well, guess what, yup ya girl should play the lottery lol.

Back in April, I restarted testing, and I was at my worst, and I knew it, but I pushed through it. So my labs and tests were all horrible. When I went for testing this week at Mayo, I felt better, was breathing better, I still was winded, but I knew that something had gotten better.

Recap:When I went to Mayo in July, my Chest X-ray showed my heart was grossly enlarged, confirming everything Advent Hospital had stated in their referral. Baby doctor pissed me off, maxed out all my meds, restricted my fluid intake to 48 oz a day. I monitored my I's and O's with a urine hat. So I could know for sure how much I was voiding compared to how much I was intaking. (I do apologize with the medical lingo, in my past life Medical everything was life for me, from Olivia being in the NICU, to me going to back to school, so that I could work in the step-down ICU at the same hospital.)

So it's summertime, I'm home relaxing with my kids, where lol I slept whenever I was tired and didn't push myself, if my heart needed rest, I'd sleep that whole day to give it that. Whereas in April I was grinding working Fulltime, as a teacher, teaching 2nd-5th graders, handling disciplines, and just trying to keep my team sain and together So I would work all day pushing my oxygen tank around, then come home cook, be mom, and wife, go to bed and go back at it the next day. Keeping that all in mind, we go to Mayo this past week with hopes things got better because I did all those things that he asked, with rest.

Here we go the first test I took it like a pro. I'm lying, thought I was dying, or he was killing me slowly, when he inserted the catheters into my artery in my neck lol. I was on Xanax, but lol that didn't kick in until after the procedure. My husband wasn't allowed in with me. He came in once we were done. I then went to my next appointment and waited for the next test. As I waited, I, of course, fail asleep in the waiting room, because yes the Xanax kicked in smh. I go for my next test, where I was placed on a treadmill with a mask on only allowing me to breath out my mouth. Please, I felt that it would be a walk in the park. I can push myself to walk as long as possible, and I'm a mouth breather lol. During the walk, the harder it got, I started to remember my military T.I yelling don't you give up, asking me am I a quitter, if I was a quitter, then run right over there to candy land, they take quitters lol. So when my heart rate got to 140s, I had to stop because I felt myself getting ready to jump into Afib, which I did as soon as I got off. The first thing I asked the tech was how many Mets I did, she said lol 3.9. I did 3.8 in Orlando, so I was happy. Then it came to the next test, which was right after that, I was tired, and I knew I wouldn't do well, but I still gave it my all. It was time to do the breathing test. I blew as hard stopped and blew soft until I couldn't blow anymore. She asked me how I felt, I said like I can go to sleep right there. She complimented me on my red hair, and I left for the day. I went to the hotel, helped my kiddos with their work, and climbed in the bed at 530pm. I woke up at around 12am, hubs was still up, I looked on my Mayo App, and saw the results from my breathing test, and knew right there tomorrow discussion was going to be about my lungs. I told him, we aren't going to proceed with anything else because it looks like my lungs are worst than my heart. He's always optimistic. lol. The next day more test, and then I have my ECHO Lol so while lying on the table during my echo, the tech was very chatty, so much so when she got quiet, anyone who has had a tech get quiet or facial expression change know that means they found something. So lol she goes. I'm going to get the nurse to come in and start an iv. Huh? I've had so many echos I can probably perform them on myself, and not one has ever stepped out to get a nurse, let alone to start an iv. Well the nurse comes back after the 2nd try, she successfully starts an I.V. We get the contrast injected, and she starts taking pictures. I asked if I could take a picture because my heart looked cool, seeing it sway side by side in white. Once done, I ask her how long would it be because I see the docs in an hr, she goes your docs already read your echo. So your all set. In my head, I was like dang that's wassup get it Mayo, but then self said why are you so special that your test is read before your done. Yup cause it wasn't good, thats why she stepped out. Bk to the appt, We come to the Main Event, result time. Baby doctor comes in Lol throwing his little sarcastic jabs/jokes, I'm throwing them right back at him. Then we started to agree on some things, like the reason my bp is up because I'm mad I had to be there, and see him, etc.then he goes over stress test, good news he says. Hold up I say, then I lay all my hard work out for him, my bp logbook, my I's and O's, sodium log. Boom he cants say nothing. So I thought. I knew it was something when he dropped the H bomb. (remember he's a baby doc) so he goes, well I was talking to the doc who was reading your echo, and I'm like ohh dang, here we go. I hit record on my medical app, so I don't miss a sing word. He goes so there's two things, the first. Me in my head: wtf he means the first. Well, your heart function has improved lol oh crap that's wassup, I go so I don't need a heart? I'm not longer in heart failure, I'm good? He goes oh no you need a heart, I just said your function improved, let's not get ahead of your self. (Told you he's sarcastic)

Let me take you real quick down memory Echo lane. The echo in January was bad, but the one in April was horrid, its how they said ok, let's get you in to be evaluated for a heart asap. Again, different hospitals, techs, and doctors who read them. So my function now was what it was in January when Dr. S was trying to Optimize my device. So I'm happy because even though I was still in heart failure, I wasn't going to die if I didn't get a heart tomorrow. So good news for me(CHECK), so we thought. Yup got ahead of my self. See I was diagnosed with Dilated cardiomyopathy, and diastolic dysfunction, this one just abnormal with CHF. My heart went down yippie, enough that it showed a new problem.

Ok. Bk to the appointment. Then the baby doc said 2nd thing, has anyone said you had Amyloidosis or Sarcoidosis. Me in my head: What you talking bout Willis? BOOM that ECHO. Me in my head: okkkkk just spit it out. Well, so he grabs a notebook, this is your heart. Me in my head: wth is the Pictionary. He draws my heart, and then goes and pulls up my what? Yup, my Echo. Remember, I received a contrast that made my heart glow. But what the doc saw, that made him call baby doc was something that was never found before because my heart was always so enlarged. They call it stiff heart syndrome, or Cardiac Amyloidosis. Yes if your wondering that isn't good. So as I did all those things, not working, feeling like crap on maxed meds, peeing in a hat, measuring my Ins and Outs uncovered a rare heart disease that now has me stopping any more transplant evaluations until its figured out. It was also noted from my Ct. Scan that I have two nodules on my left lung. One ground glass subsolid 6mm nodule on my upper lobe, and one solid nodule 4x3 mm on my lower lobe both on the left side. Not to mentionthat bad PFT test I was oh so tired, results open another item from Pandora's box, another Rare disease different from the other disease Sarcoidosis. We always wondered why how my heart got bad, but no one never took the time to actually find out. So my lungs are showing Moderate mixed lung disease, I have welcomed lung transplant into the picture, and the heart has now added hematology/oncology. So per baby doctor depending on if I do indeed have Amyloidosis and it is now in my lungs, then we have to be aggressive with our treatments, as it already calls for CHEMO!!! So I had to inform my family that I am no longer seeking a heart transplant. I am now being referred to the lung transplant and hematology/oncology team. No, I don't have cancer, But, yes there are two suspicions nodules on my left lung. Yes, I failed all the lung test and have now been informed I have mixed lung disease, which is both obstructive and restrictive lung disease. No, I've never smoked before, or be around people who smoke. So the elephant in the room is how are my lungs so bad, and why? Remember I called it that night. I told my husband that I thought my lungs were going to be an issue. But it gets worst. So I've been anemic for a while, so much so I was receiving Iron Transfusions since I was last there at Mayo I lost over a pint of blood. With no reasoning. Where is this blood going? Hell if I know, ugh let me ask, self where are you hiding all your blood? But the Severe Anemia that no one knows why I stay so anemic is tied to both those rare freaking diseases. So now I do What? Last time I cried, this time I laughed. No, seriously I was laughing so hard tears was falling, cause are you kidding me... like SERIOUSLY! Baby doc goes, Don't go googling neither of these, it's only going to upset you... I laugh more cause I'm going to google the heck out of these diseases lol.. He said to stick with Orgs, and Mayo, of course, if I do. So we leave the appointment. Process it all. I had already sent a quick text to the girls while laughing at it all, so they knew. I tell my sister as I'm driving down, she's such a cry baby. Feels like we went in for one thing, and now they are telling us another thing. Mom tells Dad, I tell Hubs, mom. So now all the immediate people know. So I finally post a mini version of this on Facebook, and now you guys.

Mood: I honestly feel like about time. We have a reason to all this madness, and if its Amyloid, and I need Chemo, then fine, I rock wigs anyways. If it's Sarcoidosis, ok, I would just get a new heart and lungs. Like we can't cry over this spilled milk. Feel me?

Food: ughh who eats anyways. 

Book. Good ole " Zen as F*ck"

Goal. Get infused with some iron, before I need blood.

*** Mayo called and Lung transplants appointments in Sept. I have a local Hematology appointment to get back with my Iron infusions unless I dropped under 8. I'm 8.4 now smh, then I will get some good old fashion blood. The appointment with Mayo's Hematology/ Oncology Amyloid clinic is in October. I also see Cardiovascular disease in October for Cardiac MRI.

 

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