Finally ... Good News!

[TequilahCat]

Last week, I had my fourth heart catheteraization in 6 months. Honestly, I've never had so many tests & been poked & prodded so much in my life. It makes me cranky. This particular day I was dreading. I was worried about too much ... everything worked out.

The doctor is pleasantly surprised ... my lung pressures are down! He found that my condition is much improved ... and they had me do 6 minutes of excerises where I barely became short of breath. My pressures were find and my oxygen levels were pretty steady at 94%

The doctor was excited to fill my husband in with all the good news, and he was happy take me off the transplant list and told me that no new medications were needed. He wants the current medications to work their magic.

Now, I am hoping for more improvements and have noticed some positive changes in the last week. My heart rate has dropped from a resting rate in the high 80's to the hiigh 70's and sometimes even shows at the low 70's when I first wake up.

My breathing is becoming easier ... I still need to restrict my fluid intake to less than 2 liters. ... Oh, i still have moments with the breathing ... like sometimes feeling short of breath ... & i also get frustrated when I can't take a deep breath; But the deep breaths are coming more and more ... which is a treat ... (( that's why its frustrating when I have some hours or a day where the deep breaths don't come so easy! ))

I'm on night time oxygen for sleeping only, but I am feeling much better and getting better sleep at night. My eyesite is returning and my abdomen is shrinking

I have lost another 3 pounds in the last week.

I'm hopeful that I will see a remission ...

I'm not without anxiety and some uncomfortable moments. I still get short of breath and such ...

I still freak out when my oxygen levels drop below 93% ... most often when I lay back or sit still for too long, forget to take a breath for awhile .. my oxygen levels drop to 91 and sometime even down to 89 ... but they bounce back up pretty quickly.

I wonder what it feels like to get to remission with a illness like Pulmonary Hypertension. I'm sure that there are struggles and that it's not easy ... like with any major illness.

Still, I'm lifting light weights, do the lung exercises ... and I am more active and I'm walking at least 6 minutes or more every day.

... and I'm hopeful!

Cindy

[O2Trees]

What a nice post to read when I've just got up Cindy. How very exciting for you to have such unexpected improvements.

One thing i wanted to say. Please please try to get your panic under control when your O2 occasionally drops to 89%. You have seen a pattern where it fairly quickly reestablishes itself so (unless there's something i don't know) nothing bad will happen to you at 89% for a short time. I would just see it as a useful indicator that you need to change your posture (or whatever thing made it drop, like stopping breathing ). Its a shame to have a panic about this when overall you are doing magnificently.

Hats off to you especially getting the exercise going too. If you're already walking 6 minutes, then you should be able to build up the time slowly and surely. You and your heart will feel more benefit.

My very best wishes to you

[TequilahCat in reply to O2Trees]

O2Trees!

Thank You!!!

Your reply ... so encouraging & the perfect guidance!

I needed the insights & encouragements more than one could know!

Cindy

[O2Trees in reply to TequilahCat]

Glad to be of service Cindy And thanks for the follow btw.

[Jolyn]

How wonderful...I'm wishing you more progress day by day. xxx

[Hidden]

Such good news for you and so encouraging. I really hope you continue to improve. xx

[Dedalus]

Great news - all very best wishes for continued improvement. xx

[peege]

That's really great news Tequilacat. Long may the improvements continue 😃

[Offcut]

I am pleased with your good news. as a person with PH and AF and a few other things thrown in. I am intrigued with the Four heart catheteraization you had in 6 months I have had 1 angiogram 3 ablations all though both sides of my groin, the last I had a femoral leak because of the scaring from the past ones.

I lose O2 quickly and am exercise intolerant but recover quickly ( even though it does not feel like it ) I had to wait 12 months to get my second Ablation! Where are you to get this all so quickly?

Be Well

[TequilahCat in reply to Offcut]

Hi Offcut!

I'm in Arizona, US .... I was first seen by a private practice cardiologist and my primary care doctor. It was with them that my diagnosis came through. My primary care doctor ordered a chest xray and found my heart had a good amount of water on it and was enlarged. The Cardiologist performed the first heart catheterization and really thought there was nothing to worry about, because it was a my right side of my heart that was in question. He gave me my diagnosis in late September.

He referred me to my specialist, the Pulmonologist at the University Medical here. They did a rush to get me in by the end of the week, and within the first week in October 2014 I was scheduled for another Right Heart Cath in their 'Cath-Lab" ... Everything happened so fast after that. They put in a 'Swan-Ganz' Catheter in my neck, .... He confirmed the diagnosis of Pulmonary Hypertension .... my prognosis was pretty dismal ... and they began administering Trepostinal via IV immediately,

... I was kept in ICU for two weeks. During that time, My husband and I were taught how to mix my meds, set up my IV and all the other things we needed to know.

During my first several weeks home, they added diuretics, blood thinners and increased the dosage of the IV medications. They scheduled echocardiograms every week for me. I began doing yoga very cautiously and the rest of the time, I couldn't do much of anything at all ....

My 3rd heart cath showed that there was very little progress or improvement and my doctor began making arrangements for me to go on the lung transplant list. The transplant team began their tests and became involved with my pulmonary exercise program.

Then, One week in December, there was celebration because I had lost 30% of the fluid around my heart.

My fourth heart catheterization was just last week. This is when the good news came through!

I don't know how or why I was seen so fast... In Arizona we have the Cost Care Containment System and now, I've just been accepted onto Medicare.

I feel very blessed & have so much gratitude for being taken care of so well!

I pray that my improvements continue!

[Offcut in reply to TequilahCat]

I am impressed with the speed that you have been dealt with. I am from the UK and have the NHS to deal with my problems so things seem to take a little longer.

I hope that you continue to improve for a long time to come.

Be Well

[katieoxo60]

Hi Cindy, nice to hear good news, hope the improvement continues. Every best wish

[rfcjackie]

So nice to hear when people get good news hope you continue to improve good luck love jackie xx

[redted]

I could not help smiling as I read your post,I was feeling so pleased for you,may things just get better,and better for you.

[rmfields]

Great news. your post gives me hope when I hear a lot of gloom and doom from the doctors. I wonder though, what medications you are on and what your Oxygen levels were before they came up to 93-94? How long since you were diagnosed before you began to improve?

[TequilahCat in reply to rmfields]

Hi rmfields!

My current medications are:

Treprostinil - administered via IV effusion

Sildenifil - 60 mg 3x per day at 12 noon, 6pm and `12 am

warfarin / coumadin - 2.5 mg base & add 1.25 mg every other day

furosemide - (diuretic) - 20 mg daily in the morning

Supplemental oxygen at night only for sleep

6 - 10 minute walk evert day

light yoga - no inversions, no sudden movements with head ... no upside downs ...

lung exercises (YouTube) ... I learned of these exercises here from Mic

My oxygen levels were dropping down to 88 / 89 in the hospital ... that is when I first became aware of the O2 saturation rates. Never gave it a thought before then.

It became more of an issue after I came home from the hospital with my O2 saturation levels dropping down to 82% during sleep times. During the day I was remaining pretty steady at 90 / 92. The doctor ordered a sleep study and once the results were in, ordered the oxygen concentrator. I do not use oxygen during the day unless I am napping.

Hope this helps

Cindy

[FarmerD]

Hi Cindy,great to hear your positive news,I,m sure it cheers us all up and gives us all that hope that we too can improve our lot.Wishing you the best of luck and further progress.Regads D.

[bikergrove]

Such good news for you Cindy, keep up the good work.x

[DecD]

Wonderful news. It's always good to hear that science works ! Keep on truckin'.

Dec