veronica's Journal

My scar. I feel very fortunate!

It's been a long time, but I am feeling especially grateful today, and I wanted to share my journey up to this point. Following surgery I was able to fly to WA and spend 6 months with my mother before she died of cancer. I am so happy that she was able to see me recover so she could stop worrying about me! I had a very easy time compared to many probably due to the fact that I had no major underlying illnesses, and I am relatively young. I feel better than I have in a long time, and so far my valve is working great. I am not taking any medications since about 6 wks post op. I do have a thymoma-tumor on my thymus gland that was found incidentally after an ER visit 2 wks after surgery. It is being monitored, but so far has not caused any real difficulties.

Thanks to everyone in this community for the care and support during that difficult time. Now more that ever we need to be there for each other, and I am trying to express my gratitude to everyone possible! Wishing you all good health and peace in these uncertain days.

Had my first cardiologist appt and in office echo today. 20 days post op and everything looked great. No sign of fluid on my lungs. Pressure gradient is 19/12. Saw the new bovine valve in action! Incision healing up nicely. (Pic coming soon.)

I went to ER yesterday morning due to the pain in my right ribcage. Docs highly suspected a PE but thankfully it was a pleural effusion. Just a little fluid on my lung , and it has improved today without intervention. However, the night nurse told the morning nurse that my CT showed possible thymoma? She said doctor would talk to me about it, but I have yet to see him today. Looks like at least another night in the hospital, and no answers yet.

Last night I started to get sharp pain in my right side under my ribcage. It hurts to take a deep breath or lay on that side. No other symptoms like fever. I'm on blood thinners so clot isn't likely. This morning the pain is still there. I read that being put on a heart lung machine can result in gallstones due to hemolysis. Just wondered if anyone experienced this?

I know everyone is different, so this is my experience so far.
Things I've learned:
I'm stronger than I thought
I'm not the invalid that they implied I would be.
I don't have to walk around like a T-Rex.

What I'm grateful for: (too much to list, but here's some highlights)
I have minimal pain.
I can sleep on my side.
My husband has stepped up as a caregiver.
I am patient with myself.
Being healthy otherwise.

Goals:
Get well enough to go take care of my mom next month.
Living in the moment.
Being grateful for what and who I have.

Released yesterday and found out this morning that the doctor put me on lipitor! I knew about the plavix in the hospital and not thrilled with that either. That's why I picked a prosthetic valve! I have never had coronary artery disease or high cholesterol. I think doctors are too quick to paint everyone with the same brush. I felt terrible after taking the lipitor last night and won't take it again.
I'm trying just Tylenol this afternoon for pain. I have no appetite! Has anyone else had this problem?

Finally got out of ICU today and took my first shower. Feels pretty good being in my own clothes I bought for the occasion! Days 2 and 3 were pretty rough to be honest, but overall everything has gone smoothly and I'm very grateful. Haven't seen the scar yet-tomorrow they remove the dressing. Trying to prepare myself for that! Having a home health nurse visit for awhile after I get home. Husband is a little freaked out by all the medicines, etc. I'm sure we'll do fine, but doesn't hurt to get help. Wishing all coming after me a speedy recovery, and thanks for all the well wishes!

1 day post surgery and everything is going great. Up walking and eating. Not as bad as I imagined.

Today was a little stressful. Yesterday the hospital called and said my heart catheterization was Wed and surgery Thurs-not what I was told. Once that was sorted out it was today but surgery Thurs. Then I get a call this morning that there was a cancellation and did I want to come right then, so I did! Procedure went well. They went through my wrist. Tomorrow is 4 hours of pre surgery testing. Feeling better about everything.

It seems like time is standing still now. It all became very real today when I saw my name on the upcoming surgeries list! Trying to figure out what to pack. We are going 4 hours away. Bought new pajamas, front zip bras (Playtex zip zip hurray). Been writing friends and journaling. This time next week should be in recovery. Thinking of everyone who's going through this too. Good to know you're not alone!

Things have progressed rapidly since finding out I was running out of time. I spent a nice month in WA with my mother (who has stage 4 lymphoma). My husband went to Puerto Rico for 4 weeks to do relief work. I met with my doctor Tues and a surgeon Wed, and surgery is May 2nd with heart catheterization on May 1st. I am having a pig valve even though I am only 53. My surgeon said in the past he might have objected, but if it fails they can fix it using TAVR. In any case I can't handle hearing the valve or the blood thinners, so that was an easy choice for me. I feel at peace knowing it's getting taken care of, and I should be recovered enough to help my mom at end of life. Thank you all for your support and encouragement. It's been an interesting 2 years since finding out, and I hope to educate more doctors about this condition. There is so much ignorance! My cardiologist thinks I need part of my aorta replaced while my surgeon said that's not necessary. Why all the confusion?

My appt. with GP resulted in an emergency appt. with a cardiologist and an in office echo today. My opening is now .77-.85. In October 2017 it was 1.0. Dr. says it's time to replace! Having a heart cath (finally) and stress test next week. I still hope to wait for 6 more weeks to go be with my mom. I am frustrated that no one took my symptoms seriously or told me that it would be years before I would need surgery. We need to get the word out that everyone is different! I went from 1.8 cm to .77 in 2 years. I knew it was getting worse, so don't let anyone tell you it's in your head.

Since my last echo my mother was diagnosed with stage 4 lymphoma for which she doesn't want treatment. Her doctor seems to think she has less than 6 months and wants to get hospice involved. (she is only 70) In the meantime my heart continues to get worse, and now I don't know if it can wait til my mom's illness runs it's course. I don't want her worrying about me on top of everything, but the stress of this may kill me! I have an appt on the 28th of this month with my new general doctor so I can find a new cardiologist in AZ. Not due for another echo til April. I am venting more than anything, as I know there is no right or wrong answer. I just wish I had more time to focus on my mom.

I have recently developed an intolerance to coffee. I used to drink 2 cups a day, but now just a couple sips starts my heart pounding and BP goes up. Anyone else had this problem?

I went for an echo Oct. 24th, 2017. Valve is now 1.0 cm. Overall heart function is moderate. Mildly enlarged ascending aortic valve. Cardiology appt. is Nov. 17th. I have a feeling it will be more "wait and see". I went from 1.8 to 1.0 cm in 20 mos. So much for averages! I feel I am running out of time. I have no other underlying health or heart issues, but I just feel like a ticking time bomb!

I just went for my annual echo-actually about 15 months since the last. I am now moderate to severe. I have an appt with the cardiologist June 9th. I am a little surprised by how fast it is progressing. My doctors in Denver acted like it may take years!

I am wondering if anyone else has had an issue with anxiety? I just had my first panic attack which felt a lot like a heart attack. I was given Lorazepam but didn't find it helped that much. I have used herbs like rhodeola and ashwaganda and they help some. It seems to come out of nowhere when I am not conscious of worrying. Everyday seems like a chore that I have to break up into little manageable increments to cope.

The cardiologist appt. last week was pretty routine. He didn't have much to add that I hadn't already found out myself through research. He did recommend either a CT or MRI to see the whole aorta. There is slight enlargement of the part they could see on the echo. So, I opted for the MRI-no radiation. This was my first time, and I have to say it was worse than I imagined. No one warned me how unnerving it would be! I am not claustrophobic, but the constant unexpected noises and the holding of my breath endlessly was not fun. I hope to not have another one anytime soon. So now I wait for results. Hopefully this will be the last test for awhile, and I can concentrate on reducing my high anxiety levels and getting better sleep.

On January 20, 2016 I went for a routine physical. It had been more than 4 yrs. since I had been to a doctor. We recently moved to CO and had new insurance, so I felt I should establish care with my new doctor. I am 51 years old and have considered myself very healthy for most of my life. I have always been slim with low blood pressure and good cholesterol numbers. My doctor tells me that I have a heart murmur and looks at me as though she is waiting for me to confirm that. News to me! Her concern was evident, and at the end of the physical she said it needed further investigation. I called to schedule an echo and had to wait more than 2 weeks-not a fun period. I had always worried about my husband's heart and health and nagged him to lose weight. He is the one on high blood pressure medicine and has high cholesterol. But here I am having an echo. Several more days passed before the diagnosis-aortic valve stenosis. The google research began and so did the panic! How did this happen? What now? I felt helpless and defeated.
Leading up to this I had not been feeling great, but I chalked much of that up to being menopausal. I was not sleeping well, feeling fatigued and anxious, etc. I have also been short of breath just lying in bed which didn't seem normal, but again I attributed that to changing hormones. Now I began to worry that all of this had to do with my heart which only increased the anxiety and with that the shortness of breath.
My first cardiologist appt. is this afternoon. I am nervous but also glad to get it over with. No doubt he will tell me to stop worrying needlessly. It is supposed to be mild to moderate at this point, and I am not supposed to be having symptoms yet.
This is a difficult diagnosis for someone who likes to self diagnose and treat symptoms. I am not a believer in taking a pill for everything, and thankfully there is little that can be done short of surgery. It should help that I have never smoked and don't have any other risk factors for heart disease.
It is interesting to me that there may be a familial link. My father was diagnosed with an aortic aneurysm at 68 but died in an accident 6 months later. I have informed my brother who is only 42 that he should be checked. He also has not been to a doctor in years.