iCPET Update

Hello everyone!

Yesterday morning I completed the iCPET at UCLA. It was quite the production and I hope to never repeat it again. The catheter in my neck was so uncomfortable. Anyhow I don't have an answer just yet. I was told they need to review all data and blood work. The doctor did tell me I do not have exercise induced PH, but when I asked him about EI HFpEF he simply said "it's close" but he has to review everything first. He did tell me that he is going to a conference on 1/18/23 and intends to discuss my case with the other doctors. I've always believed that two heads are better than one so let's see what they come up with. 
 

The interesting thing about UCLA is that most times the blood work results are posted to your chart in the app in real time. I saw about 120 results in total. Everything from prothrombin time, Creatine phosphokinase, lactate, ammonia, a general CBC Panel, my BNP (11) and more. I reviewed most of the results and I believe I might have been right about the HFpEF. At baseline most of my labs were normal. As the exercise increased my ammonia and lactate skyrocketed. I'm not sure about the pressures that were measured during exercise, but I did see my resting hemodynamics were normal. Anyhow once I get the final interpretation I will let the club know. I'm not too hopeful for good news because my symptoms are getting worse, but in the meantime I'll enjoy life with my wife and my family. I wish everyone a blessed, safe and enjoyable Christmas! May God bless you all. 
 

Alejandro


3 Comments

I hope the news will be better than you expect

by Gemita - 2022-12-24 05:49:07

Alejandro,

Now I don’t want any negative thoughts creeping in and spoiling your Christmas, please.  You are moving forward nicely now.  The plan sounds a good one for your doctor to consult other colleagues at a conference in a few weeks time and it is very good news indeed that you don't have exercise induced pulmonary hypertension.

Let us not diagnose you with heart failure with preserved ejection fraction (HFpEF) just yet.  Your doctors need to study all those numbers and blood work first and to correlate them with your ongoing symptoms. 

By the way, were you highly symptomatic (apart of course from feeling the discomfort from the catheter in your neck) during testing yesterday?  Having others witness your distress and symptoms when they actually occur, can only help with a diagnosis.

Alejandro, I wish you and your family a peaceful and happy Christmas too.  Please try and relax.  There is nothing more that you can do until they give a presumed diagnosis. Stay safe since I hear that arctic conditions are affecting many areas out there. 

Great Question!

by arentas80 - 2022-12-24 12:13:19

I was surprised to see how well I did on the bike. I rode it for longer than expected and I did not have any symptoms. I believe I did not become symptomatic because the test is gradual. You start with no resistance for two minutes and it slightly increased every two minutes thereafter. I did not experience any SOB and the reason I ended the test was due to leg fatigue. The doctor said I stopped early for my age group so I did not do as well as I was expected to. My baseline HR was in the low 70's and I got it up to 173 I believe. I was quite shocked to see how well I did but at the same time it makes me wonder why I am so symptomatic during exercises that use my entire body (stairs, inclines, bending, etc). 

I've also noticed that the day after I get my HR up I don't feel too good and this happened yesterday as well. I had a follow up doctor appointment for something else and by the time I got to the 4th floor (took elevator) I felt it coming. Walking up to this building required going up a slight incline and I could sense the clogged chest feeling and legs burning. By the time I was waiting for the nurse to take my vitals on the 4th floor I was feeling presyncope, weak, and like something was wrong. It eventually passes once I sit for a while, but its an awful feeling while its happening. Anyhow I can't wait to get these results. Thanks for your kind words and have a wonderful holiday as well! 

You may need to learn how to effectively "pace yourself"

by Gemita - 2022-12-24 13:52:44

Alejandro,

Yesterday you were largely “paced” throughout the test and only gradually asked to increase your cardiac output which is always the most effective way to exercise for longer periods.  That is probably why you did so well.  My doctors have always recommended I “pace” myself slowly, consistently and build strength and speed gradually for the best results. Certainly don't do too much one day and crash the next.

Most people go out too fast and are then forced to slow down.  During inclines, stairs, we don’t give ourselves the time to stop half way, take a breath, then continue.  We try to get to the top often without a break.  Bending distress?  I know it well with arrhythmias.  Sometimes the heart is not able to compensate for the fluid shifts or extra pressure placed on the abdomen when you bend over and you might get short of breath and experience other symptoms too like palpitations. It can be a sign of heart failure, although it can of course occur in individuals with large tummies who don’t have heart failure or if someone has a large hiatal hernia for instance.

Perhaps if you could learn to pace yourself, your symptoms might even improve.  Bending can be a problem if we are carrying excess weight, or if we have any fluid retention but I don't think you have this problem.  My husband struggles to do up his shoe laces now and easily becomes breathless.  He has right sided heart failure and pulmonary hypertension, but he is doing well because he has finally learnt to “pace himself”. 

You know you're wired when...

You are always wired and full of energy.

Member Quotes

We are very lucky to have these devices.