Caring for Kaarah - Donate to Help Save Kaarah's Lungs

Kaarah had been sick for a couple of weeks. She tested negative for traceable illnesses, so it was thought to be just the virus of the season. Until Wednesday, October 9th, when she began coughing up blood. She was taken to urgent care that morning around 4 a.m.

At urgent care, they couldn’t find the cause for the blood, but they were very concerned that her blood oxygen level was at 80% and would not improve with oxygen therapy. She was transferred to the U of M Pediatrics Intensive Care Unit.

Kaarah was diagnosed with Mycoplasma Pneumonia. The hospital has seen hundreds of cases this season, and they call it ‘The Walking Pneumonia.’ In trying to diagnose the pneumonia, they found something else – 2 holes in her heart and cardiac & pulmonary hypertension.

Finding the holes in her heart was a lucky occurrence – they were looking for an infection and happened upon the heart problem, but it explains a lot of issues that Kaarah has on a daily/weekly basis.

Kaarah did a round of antibiotics and steroids to treat the pneumonia. On Monday, October 14th, they inserted a catheter through her leg and up to her heart. They used a dye to look for any additional holes and also measure her pulmonary and cardiac pressure. The procedure went well, but the results were not what we had hoped.

1) The cardiac angiogram shows that her heart is pumping on the low side of normal and rests well after the pump. Cardiac blood pressure is SEVERE, and she has only been able to last this long because the two holes in her heart act as a pressure release.

2) The pulmonary angiogram shows A LOT of extra vessels that her body grew to try to compensate for low oxygen. Those vessels have been breaking because of the high blood pressure in her lungs, and that’s why she’s coughing up blood. The pressure in her lungs is SEVERE.

3) The blood pressure in her lungs did not respond to the medication that might’ve lowered the pressure. It means that she is not a candidate for that route of care, and they have to find other ways.

4) They did not close either hole - doing so would worsen Kaarah’s symptoms, perhaps fatally. The holes will remain open until they can solve for the pulmonary hypertension.

5) The holes did NOT cause the hypertension. They were a (lucky) bodily anomaly that just so happened to help with the lung condition that developed.

6) The hospital will order genetic testing, and Kaarah will be seen by pulmonary specialists to try to create a plan.

7) The pulmonary doctor says that the hypertension is so severe, that if we can’t find a solution soon, Kaarah will likely need lung transplants. If this happens, the family will need to relocate to Texas for approximately 2 years to get the best possible transplant care.

8) Both the cardiac and the pulmonary doctors say that Kaarah will likely have to monitor this condition for the rest of her life.

The path forward is unclear. It will be a long road filled with tests, medications, specialists, and of course, medical bills. We have created this GoFundMe to try to alleviate some of the financial strain so that Kaarah and her parents can focus solely on getting answers and healing. Any and all donations are greatly appreciated. Thank you for reading.

Update 10/18/24:

Kaarah has transitioned to outpatient care. We can not move forward until we know if the pressure in her lungs can be treated with medication. She has been sent home with oxygen tanks and three different blood pressure medications. Two of those medications require special approval from insurance before they will cover them. That fight is ongoing.

Kaarah will have frequent appointments to check on the progress of the medication. If it does start to work, we will move forward with surgery to close the holes in her heart. If her blood pressure does not start to improve within the next few months, we will have to start looking into lung transplants.

Kaarah will be able to return to school with special accommodations. She needs to take things slowly and try not to over extend herself. She is feeling excited to get back to some normalcy, although it will look much different. The medications have some potentially extreme side effects that are very intimidating. It will take time to adjust to her new "normal".

Please continue to donate/share if you are able. There are still many questions to be answered. Kaarah and her family will need all the support they can get.

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Kaarah had been sick for a couple of weeks. She tested negative for traceable illnesses, so it was thought to be just the virus of the season. Until