Wide IVC

My lungs are full of fluid and my oxygen saturation is as low as 82 when I sleep without oxygen (2 liters) to 87 o2 when walking. I am told I have heart failure from my 43% pvc burden.

Tenormin did stop my PVCs for 6 weeks until I had a real stressful day and they returned. Tenormin stopped them cold turkey after my first two ablations..The past month my PVCs caused heart failure. It doesn’t make sense because I once had a 33% pvc burden after my first and second ablations for 9 months and I had no heart failure.

I’m in a foreign country and I am trying to get a portable o2 machine when I visit daily the hospital. I choke for air when in a taxi or light walking. My GP is insisting I get admitted but the ER and cardiologists are refusing admission based on his demands. He is just trying to help.

Yesterday I couldn’t breathe in the taxi and as soon as I reached the hospital I headed to the wall o2 units scattered around the hospital. I know where each is. I can’t walk so I need to tip off in oxygen to be able to walk to my cardiologist.

I refused a pvc ablation two months ago. Then when Tenormin worked I was glad I didn’t panic into getting an ablation, which by the way, I will be wide awake. The only thing they will provide is linicaine when they cut my veins.

So yesterday they offered me a lifetime of amio (my lungs are bad as it is) and I’m allergic to iodine. The second option is an ablation. Either by a fellow or if I pay cash I can get two EPs. The wait time for private is 2 months. According to my ekgs, my left ventricle needs ablating. I was confirmed yesterday the left ventricle has more risks.

I am iatrogenic to every procedure or surgery I’ve ever had (21). One ablation I was rushed to ICU and I was getting pauses every 5-10 minutes as long as 15 seconds. Two different visits I was told to make my funeral arrangements.

Thus I have resisted getting a left ventricle pvc ablation. I was told to think of my two options (amio or ablation) and I will get a call in 2 weeks. I told him I didn’t need two weeks, I vote no to amio.

I do have a plan C. I’m trying to get my lungs better by taking lasix daily and where I live it’s so difficult to find a portable oxygen concentrator so I can fly back to the states. I’m told I’m not safe to fly with my lungs the way they are with the plane’s altitude.

What is IVC? I looked it up. Is it permanent?

I’m a high risk complex patient so I don’t know if I fly to the states I won’t get another iatrogenic reaction. My biggest fear is not death but being butchered up and end up in a nursing home being ignored wearing a wet diaper being too incapacitated to have a voice and no visitors. As it is now, each admission here I starve because I’m allergic to 152 foods, so they can’t offer me a standard diet nor make modifications. All I ask for is a banana and no msg protein without gluten and a potato which I don’t get. I was once a feeder at age 15 at a nursing home. I know how pathetic the care is.

I’ve had surgeries since age 11. I was always positive. But now I can’t breathe. I’m drowning and too fragile to have too many options.

My pulmonologist said never to take amio but it seems like a drug many inexperienced cardiologists suggest when they are not skilled to think outside the box.

Is there any room to bump up your Tenormin dosage?

Your story is -- again -- heart breaking [no pun intended]. Parts of it are also painfully familiar. I've mentioned that I'm terminally ill due to treatment-induced issues (tail end = Trileptal > DRESS Syndrome > Non-tropical Eosinophilic Endomyocardial Fibrosis (a subtype of Restrictive Cardiomyopathy)). At this point, I'm a mixed presentation (ie, restrictive cardiomyopathy, but with frank dilation and hypertrophy). Allegedly -- last Christmas -- I beat the record for survival with my thing. I didn't feel like celebrating.

This (the DRESS Syndrome) was the last in a series of worsening adverse drug reactions, so ... I hear ya'.

I'm not trying to make this about me. Rather, I may be one of a small number who may understand the precariousness and complexity of your situation -- at least in part.

I've made a difficult decision to prioritize harm reduction over potential benefit. Iatrogenic harm could be more catastrophic in my case than witnessing my own slow burn to the finish line.

But these are extremely personal, individual, and difficult decisions that nobody should be in a position to have to make. It's just something to think about ... unfortunately.

I wish you luck and health.

ETA: Have you now been told that your Inferior Vena Cava is dilated? Is that the reason for the title of your post ("Wide IVC")?



Edited 1 time(s). Last edit at 03/06/2025 02:34PM by NBeener.

Thanks for your post. The heart failure specialist did a Doppler of my heart and wrote wide IVC as an observation. I’m to schedule another echo to measure and compare it to my last 6 weeks ago. 6 weeks ago he told me I didn’t have heart failure. I’m shocked how cardiomyopathy can advance. However I was told they can’t measure much while I’m in PVCs.

One of the side effects of Tenormin is difficulty in breathing. It’s not recommended for the elderly. In 2019 and 2021 I cured my PVCs with 37.5mg a day. This time I started at 25mg bid and ramped it to the maximum dosage of 50mg BID. That’s when my breathing problems started.

I am weaning down my dosage. I weaned slowly from 50mg BID to 25mg BID. My experiment is to drop to 37.5mg a day and duplicate the dosage. I also ordered a new Rx from Germany. I had bought originally two boxes and perhaps the second box is not as viable so my PVCs returned.

I’ve had such a rough journey. 3 failed ablations, an emergency during my first and third ablation in which my first ablation was terminated because of some safety emergency. My third my sinus node was overheated, requiring an emergency pacemaker, a flecainide overdose which I think ruined my heart, taking a chemo drug that the chief oncologist at Sloan Kettering said he rather put a loaded pistol to his head than give me Herceptin and taxol -heart killers— but he took the risk because tissue testing showed I had a 24% survival rate without the chemo…and finally an av node ablation.

It would seem all of the cardiac procedures above will be in vain if I end up on amio.

When I sleep I am in NSR. The second I wake up and listen to fighter jets or hear about bus bombings (4 in one day) stabbings (7) , etc, my PVCs return. Maybe I should be on a strong (one flew over the cuckoo’s nest strength) mental drugs to numb me until I have one day I’m not frighten because I’m in NSR when I’m asleep, my PVCs are suppressed.

I want to get well enough to fly to America and see some doctors (I don’t know who) and try out options. Amio is not on the table. Nor is having another iatrogenic procedure that decreases my quality of life.

"When I sleep I am in NSR. The second I wake up and listen to fighter jets or hear about bus bombings (4 in one day) stabbings (7) , etc, my PVCs return."

I don't know if this has any applicability, but I've found I sleep best partially sitting up in a recliner. I wear ear muff hearing defenders and an eye mask. This has helped my sleep. I also look a little news as I find it isn't good for my mental health.

I have no words except to say that you get back to the states soon Susan and that you and NBeemer will find successful treatments.

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Mark
I have no words except to say that you get back to the states soon Susan and that you and NBeemer will find successful treatments.

Thank you. I’m trying to get my lungs to improve to fly back home.

George I was experimenting by sleeping either in a recliner (head dropped and my o2 worsted, sleeping on a triangle huge pillow and propping two more pillows but I woke up too many times. I just took a sleep study that showed my nocturnal hypoxia dropped to <90 o2 58% of the time dipping to 82 o2 without oxygen while using my Cpap. My score was 5 (barely apnea) to 10 currently (slight apnea) but I speculate that’s typical with age. Perhaps my Cpap settings should be increased.

I experimented drugging myself to sleep each night so I don’t need ear plugs but then I had slept through sirens a few months ago….which isn’t good because I needed to be alert while sleeping to wake up to enter the bomb shelter within 90 seconds.