Fancy’s Fight

Earlier this week, I made a trip to UAB for an appointment with my doctors. This visit and report revealed that my numbers have not gotten better and have not come down to where we need them to be- there has been no change since my last heart cath.

My cardiac output is good, but it's as though my "tubes" are not responding. With that being said, we are going to up the dosage on my latest medicine significantly. After trying this new dosage, my doctor will reevaluate to see if maybe there is a large clot blocking the tube and to see if that potential clot can be removed. Other clots I have cannot be removed.

He said that my issues are more difficult to treat than they would be if this were an autoimmune disorder or other cause. Dr. Asad is very straightforward which I appreciate. He was very forward in stating that I cannot sustain numbers like this for many more years.

At this appointment, we also discussed genetic testing. If this comes back positive, my children (Madison and Hillman) will also need to have genetic testing to see if they are at risk for similar issues down the road.

Finally, my most recent echo showed that the pressure in my left ventricle has changed which is not good. The left side had been good. This decline is another factor in why we are increasing the dosage on my medication.

Again, I'd like to thank everyone for the prayers and support. Although this is not the news we had hoped for, we know that the Lord is in this every step of the way.

I am just checking in with all of you! I am still scheduled to return 9/12. I seem to be doing better with the medicine. The fatigue and shortness of breath is just worse some days more so than others but it’s just part of it along with many other things but I’m just so thankful to be here!! 💜

UAB called. Some of my labs were a little off but we are gonna wait til my heart cath before making changes right now. They got me scheduled for my right side heart cath, echo, and the usual works September 12! They are booked in the cath lab. The nurse said they went from seeing around 80 patients a day to over 200 a day after covid because of all the heart problems that first and second covid strain caused and now they are seeing kidney problems. I’m the perfect example! I never would have thought but hey.. it is what it is at this point but I know whose got me! Thanks for all the support, love, and prayers my friends! 💜

Update: I got to see my favorite UAB doc today and that’s always uplifting! I’m just not quiet where I need to be so I will return in 2-4 weeks for another right side heart cath, another bubble echo study, and the usual labs and appointment. They need to see my true numbers again and a heart cath is how we do that and that will determine how much they increase this last med. I can’t wait to see how it feels when my numbers sustain at a good level! Thanks for all the prayers and love!
❤️‍🩹❤️ I took some pics to share with you guys!

Decreasing the med has made a huge difference! We will try to increase it again tomorrow! As always… thanks for all the prayers guys! The good days feel so good! 💜

I am now on week 3 of this med. This one has certainly been the hardest to adapt to but I know I will in time. What I thought was a 12 week plan to get me to the dose I need to be at is actually 16 instead so I have 13 weeks left to continue to increase my dose once a week to get to where they want me. The first 2 weeks I left home twice to do anything other than an appointment then I had several days the first of the week I felt really good! It felt so good to finally perk up but Wednesday when my dose increased I immediately started to feel the flu like aches coming back. Last night and today have just had challenges! My doctors want to back of my dose and we will try in a few days to increase it again! I really appreciate all the prayers! It is so hard to believe next month it’s been a year but God sure has seen me through! That I know!

I know I’m past due an update and I have had a lot of people message asking for updates this past week. I have felt at a loss for words to be very honest. Sometimes this still doesn’t seem real. I know it is because of things I face daily but even that does not change how I feel.
My last appointment at UAB wasn’t really like the last. My numbers are still so high so for a month now I have been waiting to go on another med.
It’s not like they just call these meds in and you go pick them up. These particular meds go to specialty pharmacy, require prior authorization, I have to sign a consent to take them, and more. It’s required I have to have an in home nurse visit with education on this med before I can start it so my med should be here Tuesday and the nurse will be here sometime next week. I’m praying this will get my numbers down and I can tolerate it. This med comes with a lot of side effects and they have stressed the importance of sticking it out the first 12 weeks during the titration process. My heart is taking a lot from all this so I need my numbers to come down. I can still say I feel so much better than I did in the beginning but I know I’m sick and some days are just better than others. It’s a lot of ups and downs not only physically if I’m being honest. I need this med to not only help me but I need to be able to take it. Dr Tallaj said my next step will be a pump which I do not want and after that they look at transplant. I am praying this brings my numbers down and I am able to tolerate this! I will update after I start this med and I have a nurse visit. Thank each and every one of you for the sweet text, calls, messages, and more!!! ❤️‍🩹❤️

I have battled with fluid this week and felt kinda bad but I had a big highlight, I got to sit and hold my friends baby all day Thursday! What a treasured memory! ❤️‍🩹

I wanted to update what is really just me sharing my story! Me and Brooke went to UAB this week for a day full of test and appointments! They were unable to do my heart cath due to an error that was made but that’s ok. My heart has extensive damage as well as my lungs from the PAH but my echo did seem to show that the last med (the one that took so long to get the dose adjusted) is helping me. 🙌🏼 Overall my meds right now seem to be the right regimen for me and we will not rock the boat right now if what’s working is working. Some things and symptoms will always be a battle but any improvement we are thankful for! My inability to hold out to perform certain activities in life have been hard for me to let go of. A lot of things in my life have changed because of it all. Some of those things I have really struggled to let go of but I know there has to still be purpose in all this but it sure comes with a lot of heartache and pain at times. Some days are certainly better than others.

UPDATE from my sister—They are changing my fluid meds. They think I need something stronger to pull the fluid off and that my body has just gotten used to what I have been taking. They are also decreasing this last aggressive med because they believe it’s too much dilation for me causing some of the fluid retention. I’m gonna have more labs in a week. My heart failure labs are still improved but not where they need to be just yet. I will have another right heart cath and echo in a few weeks. Dr said it’s the best way to know how my heart and PH is based on my cath numbers.

Prayers today as my sister is at her UAB appt today! She has a lot on her plate, but we are praying for a good report today! Prayers for safe travels back home as well! It’s an exhausting trip and a busy day of appts. We ask you to please pray for healing!

Prayers please..for my beautiful sweet sister. She is facing many obstacles..physically, mentally and emotionally. Things seem to hit all at once, but we know regardless of earthly challenges..GOD has already won the battle for us! She appreciates all the kind words and msgs, but please be understanding If she doesn’t respond. I promise she reads all of them and needs to hear them, but sometimes there are a lack of words and things are a bit overwhelming!

Todays update..the last few days have just been a little bump in the road.

My team told me from the start the fluid build up would be a concern and a problem that would get worse in time from the severity of the PAH (pulmonary arterial hypertension) and the damage I have on the right side of my heart.

On top of the fluid build up, the aggressive meds can add to this also due to the dilation they cause.

Over the last few days the fluid build up has been worse than usual. With that being said, on Monday the doctor changed some of my meds temporarily to help get rid of all the excess fluid.

Today seems to be much better and I know the meds are doing what they are made to do. It seems to be one hurdle after another some days, but this is all part of the overall battle.