I Was Rejected From a PH Stem Cell Trial

Serena Lawrence avatar

by Serena Lawrence |

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In Life with PH
I recently had a checkup with my PH specialist. At my previous appointment, he had told me that he would soon be recruiting PH patients to take part in a study involving the use of stem cells. He expressed excitement over what a good candidate I would be because of my age.

Since my diagnosis, I have read research and studies regarding the use of stem cells as a potential treatment for PH. After hearing I was being considered for this study, visions of sugar plums and fairies danced through my head.

I drove home from that appointment daydreaming of what my life could be like. I imagined myself walking up hills effortlessly, taking my dog on brisk walks, and dancing like Robyn. Suddenly, I was able to picture myself having a life that felt a little closer to “normal,” whatever that means.

Unfortunately, I was told at my latest appointment that I am “too healthy” to qualify for the stem cell trial. My lung function (for lack of a better word) sucks, and I had to start a new medication earlier this year because my most recent heart cath showed signs of decline. It felt ironic to hear that I was “too healthy” for anything, especially for something that could potentially help my condition.

So, what was the one determining factor that made me ineligible for enrolling in the trial? My six-minute walk test.

The six-minute walk test is used to determine how well a patient is doing, track their progress, and assess their physical abilities. And although my walk test results are considered “good,” it doesn’t accurately represent the struggles I still face.

I’ve lost my career, relationships are tricky to navigate, and I still struggle with breathlessness. I still face many limitations, and my life is far from being on par with those of my peers. Being able to join something that could potentially give me back some of my independence would be life-changing, especially as I am only 30 years old. The slightest increase in my health and physical abilities would allow me to plan for a future with fewer fears and reservations, to become more active, or to return to a career for which I’ve spent years studying.

While I understand there are risks with any trial, I am living with a devastating disease. I have watched it ruthlessly kill several of my friends this year, and that terrifies me. I want to try all of my options; I don’t want merely to survive. I want a good quality of life; I want a normal life expectancy. Shouldn’t I be able to roll the dice if I think the risk is worth the potential reward?

As I write this, the “Right To Try” bill was passed and signed by the president in the U.S. This bill will allow terminally ill patients the right to use experimental medications that are not currently approved by the FDA. Unfortunately, I live in Canada, where terminally ill patients can legally be euthanized (per the “Right to Die” bill), but they cannot have access to treatments that could potentially improve or save lives.

I’ve been struggling with a cloud of depression since being rejected from the study. I’ve questioned why certain things, like age, quality of life, the potential for improvement, or oxygen saturation, are not bigger factors when considering candidates. I can choose to die, when and if the time comes, and I can donate my body to science. So, why can’t I choose something that could potentially empower me, before it is too late?

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Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.

Comments

Beth avatar

Beth

Very well written Serena, and incredibly thought provoking.

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Serena Lawrence avatar

Serena Lawrence

Thank you for the kind words, Beth.

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Patricia avatar

Patricia

I'm really sorry to read this.. You should be able to try this treatment. I hope they charge their minds for you .xxx

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Serena Lawrence avatar

Serena Lawrence

Unfortunately, it doesn't sound like I will be able to join the study, but thank you for the kind thoughts.

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Joelle avatar

Joelle

I am afraid that I will get the same answer.... “ walk test to good to qualify”. Yet I have been added a third medication considering my last heart cath showed elevation of pressure and enlarged heart. 🤔

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Serena Lawrence avatar

Serena Lawrence

I hope that you will be accepted if you are a candidate for the study.

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Melissa Dumitru avatar

Melissa Dumitru

Hello Serena
I have been following your column for a while now and I am always impressed by how you express yourself. I often share your work with our membership here in Australia in our magazine and on our website. As someone who has been living with PAH since I was not much older than you are now I sympathise with your frustration. You have pointed out some very valid real life issues that should have been taken into account, I agree. I've had to accept a lot of things during my years of being treated for PH and some I still struggle with. Keep on fighting, keep asking questions, go to the trial coordinator and make suggestions, put forward your argument and get real answers. Sometimes its not what we want or need to hear but at least you empowered yourself and you may actually make them think about things from our perspective....

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Serena Lawrence avatar

Serena Lawrence

Hi Melissa,

Thank you for the kind words and support :) It is too bad that the real issues that we face are not weighed more when considering who to accept into trials. Hopefully they will be considered one day.

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Hemant avatar

Hemant

Why can't they allow additional willing trial patients? If money is an issue, I think that is solvable, there will be lot of willing people ready to donate to help someone have a chance ...

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Melissa Conant avatar

Melissa Conant

I am relatively new to PH I was diagnosed in Jan 19 I had a heart attack and through all the tests the drs put me through they discovered I had PH. Which I knew nothing about I just knew it hurt to breath and I couldn’t breath good at all. Now drs have suggested double lung transplant holy cow this just got real. Just got out of hospital again had a lot of fluid drained off chest and lungs. Doing research on transplants I have discovered that I will be required to move to the Toronto area or within 2 hrs of hospital there. Not sure how I will be able to do this my husband is still working and we are home owners here. I not sure how this going to play out I am not even sure that I will make on to the transplant list but I am even more concerned about the requirements to move any body else faced this yet and if so how what dis you do please

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Andrew avatar

Andrew

Hi Serena, hopefully all is well. I don’t know much about it but if you were rejected from the trial it might be worth asking your doctor about a Special Access Programme (my understanding is it’s Canada’s version of the Right to Try). Here’s the link to the government website about it: https://www.canada.ca/en/health-canada/services/drugs-health-products/special-access/drugs.html

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