Medical Interventions, Implants, and Elective Surgeries Post-transplant

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by Christie Patient |

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When doctors discuss the costs and benefits of getting a lung transplant, they often talk about the lifelong use of immunosuppressants. These medications can have a wide range of side effects. For example, most people experience at least a few of the many side effects of prednisone, a drug that’s commonly used to suppress the immune system and reduce inflammation.

It can feel like a perpetual balancing act to find the magic combination for each person. Along with the big three immunosuppressants — CellCept (mycophenolate mofetil), Prograf (tacrolimus), and prednisone — a handful of other medications are needed to keep the body healthy with a suppressed immune system. Antibiotics, antifungals, and antivirals are all on the list. Some come in pill form, and others may be used with a nebulizer.

Diseases like pulmonary fibrosis can have comorbidities like heart complications. Pulmonary hypertension, atrial fibrillation, and blood pressure issues are common in late-stage interstitial lung diseases. After a successful lung transplant, healthy lungs can help a tired heart heal, though a full recovery is not guaranteed. Heart medications, blood thinners, and blood pressure meds might be part of the list.

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While the medications do have direct effects on the body — sometimes both good and bad — they also have indirect effects on the life of someone on a chronic regimen. Having a suppressed immune system means that one must carefully consider elective procedures or medical implants.

While a person might leave the hospital with a gastrostomy, tracheostomy, port, or PICC line, these things all increase the risk of infection. Transplant doctors know that sometimes these interventions must be used long term for overall health. However, they usually push to remove implanted devices that can leave the body open, literally, to the outside world.

They also don’t tend to advise new implants after a lung transplant unless it is necessary for survival. The elevated risk of infection is not the only concern. A foreign object, when left in the body, can potentially trigger an amplified immune response. This can lead to acute rejection of the transplanted organs.

This is why it took many months for my mom, Holly, to get approval for a small subdermal heart monitor to be placed in her chest. First, she wore an external device for two weeks to see if she was still experiencing atrial fibrillation. The results were good, but her cardiologist wanted a more extensive study before agreeing to discontinue her blood thinner medication.

My mom wanted to get off of blood thinners for many reasons. Firstly, with no evidence of lasting damage to her heart, she didn’t think they were necessary. Secondly, they were downright unpleasant! She bruised deeply from the faintest bump. Lastly, they increased the risk of internal bleeding and caused horrendous nosebleeds.

At last, the transplant team agreed that my mom’s health was stable enough to risk implanting the monitor. Her local cardiologist placed the implant almost two years ago. She had no complications, infection, or rejection. The device has helped inform her team about the use of blood thinners. It also provides peace of mind, since it alerts the doctor any time she experiences atrial fibrillation. It’s been worth it even though it was hard to get the team on board.

Other transplant patients I have talked to have shared similar experiences. My friends reported that their needs for cochlear implants, tympanostomy tubes, a Hickman line, and a port-a-cath all roused hesitancy from their transplant teams. In each case, their transplant doctors worked closely with outside specialists or performed the procedure themselves. With routine surveillance, all of my friends are thriving with — or because of — these devices.

Considering how much scrutiny the transplant team put into my mom’s heart monitor, I was surprised to hear that she planned to have double cataract surgery last fall. Though the lenses used in cataract surgery are technically implants, the approval for that surgery was much easier to come by than the heart monitor. And while not strictly necessary, this surgery has improved her quality of life.

After spending a lifetime with terrible eyesight, my mom is enjoying the view without glasses or contacts for the first time ever.

She’s grateful that she was able to get this operation after her transplant. For years, each medical decision has come with concessions and sacrifices — a constant assessment of risks versus rewards. It was nice to have one medical intervention that has only had benefits and no downsides.

If you are contemplating an elective surgery or cosmetic procedure, know that it is possible after a transplant. You know your body best, and your medical team should help you make the most informed decision to keep you and your transplanted organs healthy.

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Note: Pulmonary Fibrosis 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 Fibrosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

Comments

Theresa avatar

Theresa

I was diagnosed Jan 8. 2019. Was told maybe 3 years life expectancy. I have been dizzy and faint feeling. 02 is at 5 ltrs. Can you explain the personality and signs physically of end stage. My husband is in denial and very mentally abusive and emotionally detached. Has been home 66 days in 2 years and 10 months. Ive been alone for every dr appt and every hospital stay . Dont know a soul here . Moved 2000 miles from any family..
What Im getting at is RAGE and Anger and depression normal behavior during hospice. Yes i am currently under bridges hospice care.. very irritable and agitated.. cant sleep.. are these symptoms part of normal behavior at for people in last months. This is not normal for me..
Thank you
Mrs.TROY K KIRTLEY

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Margaret Cain avatar

Margaret Cain

Dear Heart,
I cannot answer your question but I want to reach out and tell you that I will keep you in my heart. I will send you thoughts of peace and strength. I hope you can find some calm and even joy in the days you have. Maybe your hospice team could suggest some reading and podcasts to listen to?
Bless you on your journey.
Margaret

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Christie Patient avatar

Christie Patient

Dear Theresa, I'm so sorry that you are going through this alone. I'm also sorry that it took so long to reply to your message, but I have been thinking of you and trying to figure out what to say. Truth is, I don't know how I can ease your pain, other than to validate it. It sounds like rage, anger and depression are 100% the right response to the way you're being treated in the midst of a major life change. I wish that I could come visit and give you some company and a hug. I don't know if you're in hospice in a facility or just being managed at home, but either way, they should have social work services or counseling available to you. I think it would be helpful to express these feelings to someone who can help you cope. You don't deserve to face this alone.
You can always reach out in our forums if you want to connect with others who are going through a similar storm. I'm a moderator there with Charlene, so we can help get you set up there if you're interested in that. It can be helpful just to know that you are not alone.. we are here for you.
Sending love,
Christie

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