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San Diego self-referral result looks very iffy
Just got a call from the CTEPH clinic in San Diego, where I self-referred. I asked Dr. Kim to review my records. Last week he called and wanted to know the name of my pulmonologist, so I told him. He has now consulted with my pulmonologist. My pulmonologist does not think I have CTEPH, which is why I self-referred in the first place. So when Kim and Local Doc talked, I’m sure Local Doc’s opinion was a central focus.
***San Diego is willing to offer me an evaluation, WITH THE PROVISO that I understand going in that their opinion may be the same as Local Doc’s.***
This is exactly how they phrased it: “willing to offer me an evaluation.” Just making an offer that can be accepted or declined and it wouldn’t bother them either way. Which is not as strong as saying, “We think you would benefit from an evaluation here.”
The ONLY thing that Dr. Kim really seems to lack is my hemodynamics while I’ve got a heart catheter in and I’m exercising. That wasn’t done. He wants that info.
So I see two ways to interpret this:
(1) My health history and current health data does not suggest CTEPH. Dr. Kim tends to agree with my local doc. To reassure me, Dr. Kim is willing to offer me an evaluation in S.D. But he tends to agree with Local Doc. End of story.
POINT: Don’t bother going to S.D. The testing offer is out of courtesy to me, not out of certainty that I should be evaluated.
(2) My health history and current health data are not a “slam dunk” for a CTEPH diagnosis, but they are not extremely clearly a “slam dunk” against such a diagnosis, either. It’s uncertain either way, though Dr. Kim (supported by Local Doc) tends to think no CTEPH. The proposed heart cath while exercising could be the deciding factor to tilt the diagnosis one way or the other with more certainty.
POINT: Go to S.D. Getting tested in S.D. could mean the difference between a catch and a failure to catch a CTEPH diagnosis.
I DON’T KNOW WHICH WAY TO JUMP. Any words of wisdom, insights, etc., from all of you?
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24 Replies
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I’m so sorry to hear the frustrating news, @Brenda Denzler! If it were me, I’d call UCSD and ask them if they will work with your insurance company to get them covered as in network. If they can, I’d go for the tests. That Dr. Kim is willing to do the tests tells me that he’s at least considering the possibility, which is something Dr. Ford doesn’t seem to want to consider.
If I misunderstood and he only wants an office visit, I would ask if he could do that over the phone. That way you could bring up all your concerns.
I would also bring up the higher than normal d-dimer tests. If you are actively clotting, you need a doctor to figure out why. Even if you get a firm diagnosis of CTEPH or CTED, with active clotting, they’ll need to get it under control before they do either BPA or PTE, if for no other reason that they won’t have to repeat whatever they do to solve the chronic (old) clots.
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Yes, I LOVE the point about checking to see if your insurance will cover UCSD as in-network. Excellent suggestion, @V.R. Peterson .
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Oh no, I’m sorry @Brenda Denzler ! I can’t begin to imagine your frustrations and confusion. But I think that the fact that Dr. Kim wants to test your hemodynamics, he is concerned that you need to be tested and see if you have CTEPH.
If it were me, I would call and see if I could schedule a telemed appointment first, ask your questions, and note your elevated d-dimer and history of clots. Of course, this is your choice, but if it’s covered, I would think it’s worth a shot to see if, indeed, you do think you should be evaluated there after your telemed appointment and your concerns are addressed.
My thoughts and prayers are with you, my dear PHriend.Hugs coming from sunny San Diego. <3
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Thanks, Vicky & Jen. I didn’t sleep well the night after I got the call. Woke up about 3:30 in the morning and after lying in bed for an hour trying to go back to sleep, I gave up. To try to silence my mind, I wrote out my thoughts:
Should I go to S.D. or not? I think not.
(1) Dr. Kim’s consultation with Local Doc obviates one of the reasons that I wanted an independent opinion from S.D. — there is no longer any “independence” about what they think. Their thoughts have been shaped by Local Doc’s thoughts.
(2) I have been warned ahead of time that it is likely that Kim will make the same finding as Local Doc. The offer of an on-site evaluation anyway feels like a sop to me. Not something that is really advisable due to the facts, but something that can be offered to make me feel reassured when the new evaluation comes back negative, as they suspect it will.
(3) The test Kim would like to see is essentially the hard data from the Level 3 CPET — what my pressures are while exercising. If significantly abnormal pressures had been discovered when I went to Boston, surely they would have mentioned them in the report that followed. Instead, the “exercise” portion of the report says “without pulmonary hypertension.”I tried yet again to get ALL of the data from the October 2022 Level 3 CPET at Boston. They sent me something else that is a bit different than what they’ve made available to me before. I sent it to Dr. Kim with a note asking if this is the hemodynamic data he wanted to see. Am waiting for a response.
The nurse who called me from S.D. offered to let me talk to Kim on the telephone in a couple of weeks. (He’s going on a 2-week vacation very soon, so have to wait, which is fine with me. Gives me a chance to think things through.) I’ll do that. A lot depends on what he says.
I plan to ask him if my read on the situation is correct. My read being: Before he called Local Doc, he didn’t think there was much evidence of CTEPH, and after talking to Local Doc, he is even less inclined to think so, but is not certain, so is willing to offer me an evaluation PRIMARILY in order to reassure me that all is well. If he says yes, that’s correct, then I probably won’t go. If he says, no, he thinks there is medical cause (though an iffy one) to do an evaluation, then I will probably go.
I told the nurse that I probably WOULD do the evaluation, because I wanted to keep that door open. But I’m not sure that I will. As I said, a lot depends on what Kim says when we talk.
I sent the more elaborate data from Boston to Local Doc, too. Thanked him for his help with all this. Said I might want to talk to him in a few weeks to process everything. Told him I wasn’t sure whether I would go to S.D. or not. If Local Doc communicates to me that after talking to Kim, he thinks it could be useful, then I’ll probably go. My guess is that he will not offer this idea.
I am starting to think about this in terms of long-term strategy.
If Kim and Local Doc don’t really think it’s medically advisable to have an evaluation, but only offer one to me in order to reassure me, then it might be strategic for me to thank them for their time and attention to my situation, then say I’ve decided not to pursue this further at this time. This response from me will probably sit well with them. It honors their expertise and judgment. It may thus mean that the door to possible future referral for evaluation may not be permanently closed. And the seed of the idea that this might be advisable has certainly been planted in them.
<font face=”inherit”>To cover my bases re: my recent clotting issues… I will talk to my PCP next week. He’s the one who first suggested CTEPH, a few years ago. And he’s the one who took my high-elevation SOB seriously and referred me to Local Doc a year or so later. I will point out to him what has been happening recently re: SOB, leg and chest pain, d-dimer, port drawing problems, and I will very clearly point out that what has been happening in these last few months is almost a blow-by-blow repeat of what happened surrounding my first PE in 2019. I will tell PCP that I want him to be a witness to my symptoms, in case the clotting issue becomes more deadly somewhere down the line. </font>
<font face=”inherit”>This will probably alarm him, and he will order some </font>kind<font face=”inherit”> of test. I note that the last time I had a VQ test, it was only half the test. Not the whole thing. Because of COVID and droplet precautions. I could go have a complete VQ test. I suspect he might suggest this, and if he doesn’t, I will probably mention that the last VQ was only a partial test. </font>
<font face=”inherit”>And then I wait. </font>
<font face=”inherit”>Either I will continue to coagulate, despite being on 5 mg Eliquis BID, and I will have a health crisis that the medically trained cannot fail to acknowledge. (Hoping it doesn’t lead to my death or some kind of serious disability.) Or else the pain will </font>prove to have been coincidental, the d-dimer will be shown to indeed have been due to inflammation and not clotting, the d-dimer will slowly go back down (presumably), and life will go on.
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Brenda, I’m glad you’re going to talk to Dr Kim in a few weeks. I especially think it’s great that you’re going to ask him if he thinks that an evaluation at UCSD might lead to treatment that could help (or words to that effects). I continue keep you in the arms of my virtual hugs and in my prayers. Please keep us updated on that phone meeting and let us know how it goes.
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<<grin>> Thanks. It’s a loooonnnnggggg processssssss.
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Agreed. Too long.
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@Brenda Denzler I agree with the conversations @V.R. Peterson and @jen-cueva have had with you about this. Sorry for jumping in so late. I’ve been having technical difficulties that are resolved now.
Fingers crossed the conversation with Dr. Kim goes well and that testing proves to be informative for everyone!
I can’t remember if I have ever asked…have you tried reaching out to Stanford at all? Follow through with your arrangements with Dr. Kim but keep Stanford in mind should you feel the need for another opinion at some point.
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Hi, @Brenda Denzler; I’m sorry this is NOT what you were hoping for. But I think a call with Dr. Kim in a few weeks will be important in determining your next step. I believe this makes perfect sense.
In the meantime, gather your thoughts and any other questions you have. But I think the most important is if Dr. Kim thinks an evaluation is worth it and if treatments will be available to help you.
Also, try to take care of yourself, mentally, and physically. This can be so darn exhausting! My thoughts and prayers continue to be with you, my PHriend. Please keep us postd on your call. 🤗
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hello @Brenda Denzler I know that the process of being diagnosed correctly can be confusing and drawn out. Often, medical professionals do not completely understand our conditions. Follow-through can be a challenge. It sounds like you are doing a good job self advocating and reaching out for more information and support. Dr. Kim and his team have been caring for me since I was diagnosed with PAH in 2015. They are marvelous and I would not be alive today if I had not found the Sulpizio Clinic and started my journey there. Would it be possible to do the tests recommended by Dr. Kim where you are? Getting a correct diagnosis is so important, and if you have any concerns, a second or third opinion does not hurt anything. Dr. Kim is very busy, but thorough and I have nothing but good things to say about the care I have received. Besides, San Diego is a beautiful place to visit. I really wish you the best on this journey.
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Hi @Cindy Moser; thank you for sharing your experience with Dr Kim. I’m sure that this will help @Brenda Denzler by reading about your personal experience with Dr.Kim. I know if him but have never seen him.
Do you live in or near San Diego? I’m grateful you have been taken care of so well by Dr. Kim and his team at UCSD. How are you managing recently, my PHriend?
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@jen-cueva I am doing very well at the moment. I live in Oceanside and I am very lucky to live pretty close to the beach. I have seen a few different doctors at UCSD, usually when I have to spend some time there because of pneumonia since Dr. Kim can’t be there ALLLL the time. Did you go to the conference in San Diego? Nurse Sandy and Dr. Jenny Yang, who were presenting, have seen me many times. Nurse Sandy has actually been with me since day 1. I hope my experience can help other people in some way….
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Hi, @Cindy Moser. cool, we’ve been to Oceanside several times. We did an Ebike ride over there last year. Most recently, we took our daughter to see the house from TopGun.
Unfortunately, I missed that conference recently because we already had plans out of town. I know Nurse Sandee well. She has been there forever. She was my first PH nurse with Dr. Channick. I have seen him for years. So, since he’s now at UCLA, I see him, but in emergencies, I go to UCSD, and their team takes care of me.
Did you attend the conference? Do you go to any of the meetings? I think they are usually at the hospital. Usually, they do something else around the holidays, but I haven’t seen anything planned yet.
Take care, my neighbor, and enjoy your weekend.
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@jen-cueva I did go to the conference and I really enjoyed it. I have never been to anything like that, and I have never met anyone else with PH. I wish there were more events in our region. Although I would like to travel, I am pretty busy most of the time and the expense is an issue. I was not aware of any in person meetings at the hospital or anywhere else. Where do you find out about them? If you know about anything like that, feel free to let me know! I prefer to meet in person.
Thank you!
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I’m am late to the table Brenda! I’m confused you had PE diagnosis in 2019 Boston-any follow up there? At Mass General? What is your home location now, still n Boston?
You have other health issues including PH?
You would like a visit to CTEPH clinic in San Diego and, there has been an offer either telemedicine or an n person
I say, your answer is: Of course follow the offer, do it!
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Your concerns are important. However, the location and the size of the pulmonary embolism are important. The influence in changes in blood flow in the vessel impacted by that process determines or triggers changes in the heart function, oxygen levels, that can be considered large changes or not large changes, obstructive changes or less obstructive changes that can treated with procedure. These are only few considerations among many different evaluation methods in CTEPH management. Please be aware and consider the risk and benefits associated with all these approaches. I am a patient who suffered multiple pulmonary embolism, a hematologists eval had found that I have multiple blood clots forming conditions both from venous and arterial origination. I have an anticoagulation regime adjusted to that purpose. I advise is to be open to different options that best help your wellbeing and happiness. Good luck, 🥰🥰🥰🥰🥰!!!!
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All of you gals are the BEST!
I have a long history of being ill—at times very ill—and not having that acknowledged by powerful people in my life. It started with my parents when I was very young. The first time was soon after they had lost my twin sisters shortly after birth. I got a severe asthma attack and couldn’t breathe, and I had to tell my mom to call the doctor. I was 3 years old. My parents were in shock and grief over the twins’ deaths, and they weren’t thinking straight at the time.
Then a couple of years later I was intermittently ill and my parents just let it go and go until by the time they took me to the doctor, I was diagnosed with infectious hepatitis and the doctor didn’t think I would come out of the hospital. He thought I’d die.
While I was in the hospital for 6 weeks trying not to die from the hepatitis, I was repeatedly neglected by the nurses. Long story. Parents weren’t allowed to stay with their hospitalized children in 1959, so I truly was all alone (for the first time in my life) and felt very sick, and at the mercy of whatever the nurses chose to do — or not do — for me. I learned the reality that just because I need help doesn’t mean I’m going to get it.
Then, these years post-cancer-treatment have been a repeat of all of that. Being told I’m fine, even as my symptoms got slowly worse and worse. Finally the docs in Boston found *mild* PH and impaired systemic oxygen extraction. That explains why I can’t do a lot without feeling that I”m suffocating.
But these two diagnoses don’t necessarily totally explain the symptoms, which I have shared with you folks, and especially with Mama Bear. The doctors, once again, want to tell me I’m fine–there’s nothing going on. They don’t know why I have the symptoms, but the tests all show that I’m fine.
You gals, though. You LISTEN to me. You BELIEVE me. And tests be d***ed, you privilege my symptom reports over the tests. It makes me want to cry in gratitude. I feel my inner tension surrounding this issue dropping away, and in the wake of that I just want to cry in relief and gratitude.
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@brenda-denzler , you have been through a lot since childhood and I am in awe of how strong-minded you have remained. When you joined us you were struggling to have faith in anyone, and with good reason. Since then I see you becoming more open and trusting towards doctors. Still cautious, which we all need to be, but brave enough to put your health in the hands of another. The road to a diagnosis is not always a straight path and I know that has been so challenging for you.
Just know we will always be here for you. We don’t just listen, we HEAR you and have your back as best we can.
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I should share my favorite cursing emoji with you….
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@Vanessa Vaile I was about to say, please do, but I think I know which one it is. LOL!
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Hi @brenda-denzler, of course, we believe you and have your back, my PHriend! 💜
We are always here for you. I’m grateful to our members for the extra support on just this post. Not only to support but to help others share their experiences with CTEPH, UCSD, etc. Hopefully, this is something you find beneficial.
This is why we do this forum! My heart is full on this Friday reading the comments and support. Thank you all for taking the time to share your experiences and thoughts.
Off topic, but @brenda-denzler , I never saw you post your link in the book topic. I was waiting for that link.
Take care and have a relaxing weekend, y’all! Hugs and love coming to each of you. 🤗
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I didn’t know if it was appropriate for me to post an “ad” about my book. If it is…hang on!
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Brenda—-I want you to know that neither my CTEPH nor PAH were discovered/diagnosed until after I had a Cardio Pulmonary Exercise Test performed. Mine was done at National Jewish.
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