Ever had a lung perfusion scan?

[jen-cueva]

Hi Libby,

I have had several lung V/Q or perfusion scans. Mine did not show much as far as my PH is concerned. I was tested to mostly rule out blood clots.

Please remind me again, do you have CTEPH or a history of blood clots? Four percent of the blood flow in your upper lungs is concerning. I, too, would be shocked.

Do you expect your doctor to call with the plan, or do you have a follow-up appointment?

[Libby]

I have PH, heart disease and some pulmonary fibrosis.  No clots (as of yet).

 

Yes hes definitely going to be calling me soon. This lung scan is a precursor to having ballooning pulmonary angioplasty to address the PH.

[jen-cueva]

Aww. yes. Libby that makes perfect sense as far as to why they wanted to perform the V/Q scan. I pray that it does not show any clots. I do now recall; you mentioned a possible BPA  procedure was in your future.

 

Please do update us as he shares your plan and you are ready. WE want to support you the best we can.

[V.R. Peterson]

@libby, my son had a VQ scan (AKA ventilation perfusion scan). There are two parts to the test. It sounds as though you had the part that tests your pulmonary arteries for blood flow. If they determine the narrowing is due to clots, they will likely do the second part of the test, where you breathe in a gas that shows up on x-rays. That will test for air flow to your lungs.

You mentioned that they’re considering BPA (Balloon Pulmonary Angioplasty). If you’d like to learn more about this procedure, you can read about it on the UCSD (University of California San Diego) website (https://health.ucsd.edu/specialties/cardiovascular/programs/pulmonary-vascular-disease/Pages/bpa.aspx). A little more than halfway down the page, you’ll find fascinating videos showing blood flow to the pulmonary arteries before and after the BPA has been performed. My son had two BPAs because they weren’t able to remove all his clots during his PTE surgery. He’s doing quite well. The surgery, combined with the BPA procedures, made quite an improvement in his health. He went from having less than a year left to live to living healthy — and living life on his own terms.

[jen-cueva]

Hi, @mamabear; it’s awesome that you could share so much from your son’s journey with Libby. UCSD, for you and I both, I think, holds a special place with many great educational resources. I know they were always a top center for CTEPH and, more specifically, PTE surgery. Do you know if they remain a leader in that surgery?

You bring much value and much support from your shares. Thank you.

Plus, I am now trying to see if this allows me to tag members again. I do think not tagging was more personable, but we can see when we may want to or if members prefer one way over another. What are your thoughts?

[Libby]

V.R.

 

You are correct. They only did the perfusion scan part of it. Not the ventIlation. This will be my 5th BpA procedure so I am very familiar with it! My arteries are so narrow that they find it very risky because I’ve had tearing in the past and internal bleeding but it is time

 

I’ve never heard of removing a lobe to allow the others to take over! I’d be very interested to hear more of this. I’m curious if anyone has any actual numbers to share with me about the perfusion in their lung lobes? My top lobe is 4%, middle 10% and lower 44%. Roughly the same on other side.

 

[jen-cueva]

Hi Libby,

My V/Q was so long ago. I wish that I had those numbers to share. Maybe some other members will share from their V/Q scan. If I happen to locate that, I will post it for you. But that was so long ago, being I have had PH for 16 plus years, LOL.

 

I hope that you hear back from your doctor soon with better answers to your questions. It is frustrating not knowing and waiting after test results, especially when we only see the results or portions.

[V.R. Peterson]

@jenc, yes, UCSD is the best in the United States for PTE surgery. While we live in Utah, my son traveled to California so they could do his surgery and his BPAs. In fact, every other doctor in the United States that does PTE surgery has trained at UCSD.

UCSD is constantly doing new things with CTEPH patients. For instance, PTE surgery for those with CTED (pulmonary clots without PH), Minimally Invasive Surgery (done when the clots are close enough to the surface that open heart surgery isn’t necessary, etc). Additionally, UCSD will often do PTE surgery on patients (like my son) that no other hospital will consider. With my son, it was because his clots were mostly distal — tiny and in the ends of the arteries where they’re very hard to reach).

It might appear to most that I’m partial to UCSD. I am. 🙂

[V.R. Peterson]

@jenc, to answer your question about tagging… I prefer tags because I get an e-mail letting me know that someone mentioned me. I find those helpful because I know they were specifically talking to/about me.

[jen-cueva]

Hey, @mamabear, I am trying this tagging again, so I hope it works. I understand that you prefer it as you are notified via email. It should notify you via email either way when I reply to your comment. Let me know if this one does if you have time.

I also am a bit partial to UCSD myself. That was my first PH center with Dr. Channick and his team. So, I totally agree with you. I knew that they were also top with PTE surgery.

Thanks for your information, as I know it will help Libby and others who may be needing these procedures.

[Mendo Bruce]

Libby,

It sounds to me like you may be a candidate for either a lung reduction procedure (Zephyr or Spironic valves) or Lung Volume Reduction Surgery (LVRS)

These treatments will deflate (valves) or remove (LVRS) the upper lobes with poor perfusion, and allow the lower lobes to take over the space, ventilation and perfusion of the inefficient upper lobes.

I had a V/Q scan when I was being processed for lung transplant. All my lobes were equally affected.

[jen-cueva]

Hi Mendo, great to “see” ya pop in again. How are you doing?

I know that Libby will appreciate your feedback once she reads over it all.  Did you have this LVRS yourself? My apologies if I missed that in one of your earlier posts.

Thanks for sharing and offering such excellent tips.

 

[Colleen]

@libby I believe my son’s first VQ scan was during his transplant evaluation. I can’t remember if he had one prior to that. As a transplant recipient he has to have one every year. It is an effective way to check for rejection. Once his lung biopsy and bronchoscopy didn’t show concerns but the VQ scan pointed to some rejection. Being able to catch it early is so important. So the VQ really does offer a lot of important information.

I’m glad you asked this question and thank you @mamabear007 and @mendo-bruce for offering such helpful information. Conversations like these might encourage others to ask their questions and/or share their knowledge and experience.

Libby, I will be thinking of you. Please keep us updated on how things are going.

[Md. Abul Kalam Azad]

As I know pH problem is concern  with lung but doctors and researcher doing more on heart. I did not find any research in improving lung  condition.  If blood vessels become wider therefore blood can penetrate easily to the lung. Is there any medecine or therapy which may help to wider the lung vessels.

[jen-cueva]

Hi @Md.Abul,

With PH, they tend to focus on the heart if the person has heart failure more. But the PH specialists do tests on the lungs and the heart because many with PH do not all develop right heart failure.

You are asking if there are treatments to dilate the blood vessels in the lungs; yes. These are the vasodilators. Look at this for more information.

Cleveland Clinic

I hope that I answered your question somewhat.

 

 

[Jimi Mcintosh]

I have had the perfusion, nitrous oxide, several other test. My lungs always sound clear, yet , I can’t breathe after mild exertion.  Recently evaluated and told that due to multiple medical issues, I am not a candidate for a kidney transplant, even if a close family member is willing to donate a kidney .
I am not certain if I have  PH, PAH or PVH ( Pulmonary Vascular Hypertension)

[jen-cueva]

Hi @wheeldog, here is more information about the VQ or ventilation-perfusion scan. I also wanted to share this link that offers more about this test. Most of us have had at least one VQ scan, if not many.

As you can see, several other names are used for this test.

@mendo-bruce and @libby, how are you two doing? I haven’t seen y’all in the forums lately. Hopefully, you both are doing alright and staying busy. We’re thinking about y’all here. Please take a few minutes when you are up to it and let us know how you’re doing.

[Mendo Bruce]

I’m still alive.

I had a VQ scan when I was being evaluated for a lung transplant. It wasn’t a big deal.

I have been having a tough time so I haven’t been chatting

[Roger Bliss]

Thanks for the info.

[jen-cueva]

Hi @mendo-bruce, I’m sorry to hear that you’re going through a tough time. Please know that you’re in my thoughts. I’m sending you positive thoughts and prayers. Let us know how we can best support you at this time. Take one day at a time, one breath, my PHriend.

My pleasure, @wheeldog; I hope that this helps you some. It’s pretty much as easy as a chest x-ray, etc., on your part.

[jen-cueva]

Since we already discussed VQ scans, I wanted to follow up on another article that @mamabear commented on. It was about care for all patients with blood clots. You can find that post here.

But she said, “Thank you for sharing this @jenc. My son never had a known clotting event before his CTEPH diagnosis, but having a PH specialist who was familiar with CTEPH helped him finally get the right diagnosis, which led to the correct treatment (PTE surgery). I once watched a video presentation by Dr. Madani from UCSD, and he believes every PH patient should have at least one VQ scan before ruling out the possibility of CTEPH. In my son’s case, this was definitely the case. Thank you, again, for sharing this information.”

That made us wonder how many with PH have not yet had a VQ scan to rule out CTEPH. Have you or your loved one had a VQ scan since your PH diagnosis?