By Alyce Collins
THIS LUNG TRANSPLANT recipient has seen her life drastically improve after battling cystic fibrosis since she was only FOUR MONTHS OLD, but she wants to show that just because sheâs got new lungs doesnât mean sheâs FIXED after contracting a virus from her donor.
Rima Manomaitis (29) from Massachusetts, USA, was diagnosed with cystic fibrosis at just four months old after her parents noticed she was struggling to gain weight.
Rima lives with cystic fibrosis, gastrointestinal reflux disease, pancreatic insufficiency, chronic sinusitis and cystic fibrosis related arthritis. When she was growing up, Rima didnât think anything of her condition because she knew no different. Each day, she did two nebuliser treatments, took pills both morning and evening, then lung function tests every few months.
Due to the constant coughing and the strain it required to breathe, Rima couldnât gain weight, so in 2007 she had a G-tube fitted to provide her with the equivalent of 1,500 calories overnight.
In 2009, while studying, Rimaâs lung function was at just 30 per cent, however, she stabled her condition and moved in with her parents after graduating. Although, in 2015 Rima became incredibly sick and required an oxygen machine at all times.
After struggling to get accepted for a double lung transplant despite her failing condition, Rima moved to Minneapolis with her sister, Laima. The transplant centre in Minneapolis listed Rima and she then waited eight months until she received her new lungs via medical organ transportation.
On May 14, 2017, Rima received her double lung transplant from a donor. Rima no longer spends hours every day doing treatments, she isnât coughing incessantly, nor does she need to take naps each day as she once did. However, Rimaâs donor had a dormant virus known as CMV, causing complications in Rimaâs recovery. As positive as a transplant is, it doesnât mean Rima is âfixedâ and no longer faces difficulty.
âI was diagnosed with cystic fibrosis when I was four months old,â said Rima.
âThey did a sweat test to determine whether I had cystic fibrosis after my parents noticed that I wasnât gaining weight.
âI think to my parents it was shock. I was too young to realise what it was or what was going on, so my parents were in charge of all my cystic fibrosis stuff. I grew up thinking it was normal.
âI had to do nebuliser treatments twice a day, get manual PT which is when someone uses their hands and hits you on the upper and lower back, sides, upper and lower chest. This is to break up the sticky mucus thatâs in the lungs all the time. It helps break up the mucus so itâs easier to cough up.
âIn the years leading up to my transplant, my breathing treatment were increased so I was doing four nebulized treatments in the morning and evening and several more throughout the day, to open up my airways more.
âI was also on IV antibiotics for ten months before getting my new lungs to stable me enough until I got the call.
âI also have to take pills in the morning and evening as well as enzymes every time I ate anything. This is because Iâm pancreatic insufficient, meaning my pancreas canât produce them itself.
âAlong with all that, I had to go to my cystic fibrosis clinic every few months to do lung function tests and to make sure everything was okay.
âI first found out that I may need a double lung transplant in the winter of 2009. My lung function was down to 30 per cent and thatâs usually when doctors consider it.
âI stayed stable for a few years, hovering in the mid-twenties for lung function until 2012. This is when they became more serious about getting me evaluated for one. It wasnât a rush, so I was able to complete all the tests and appointments over a period of a few months.
âOnce all that was done, they decided I was âtoo wellâ at the time, but I was a good candidate. So they wanted to monitor me by seeing me every six months.
âIt was in 2015 that I became very sick and needed oxygen and they said I really needed to get listed. At this point my sister had decided to become my carer and was going to move from Brooklyn to come help me.
âShe found a good transplant centre in Minneapolis and after all the testing in the spring of 2016, they decided I would be a good candidate and would do my transplant. That following September, after being sick all summer, Laima and I moved, and I was listed shortly after getting there.
âIn that time, I had two dry runs, which is when I got the call to say there was a donor, but then the operation was cancelled because there ended up being an issue with the donor lungs.
The transplant wasnât without its complications because her donor had CMV, a virus which can remain dormant until it becomes active. For transplant recipients, CMV can result in organ rejection.
Although her life has improved drastically, Rima still faces health difficulties each day as she will take anti-rejection medication for the rest of her life and may need another transplant in the future. Rima still wears a face mask around children or in polluted areas because thereâs still a risk of getting sick while in public.
âMy recovery was pretty quick. The first year is usually the most important because thatâs when most things go wrong,â said Rima.
âIt takes a while for your body to get used to the change and all the new medicines that youâll be on for the rest of your life. A handful of issues surely popped up. My white blood cell levels were all over the place.
âMy donor had CMV, which I didnât have but I have now. CMV is a virus thatâs usually dormant in people and isnât contagious. For someone who is immunocompromised, such as me, it can cause problems.
âThe main issue is that it can cause rejection. Last spring, my body was still adjusting to medicines and my haemoglobin and white blood cell count were so low that I ended up in the hospital for a week and needed a blood transfusion.
âSince the transplant, my life has changed tremendously. I donât have to spend hours a day doing treatments. Iâm not coughing all day or taking naps every day, Iâm no longer on IV antibiotics either.
âI can now walk, carry things, do the laundry, clean the house and climb stairs without needing to stop to catch my breath or to have a cough attack. Iâm able to live my life.
âAll I need to do now is take pills twice a day and get labs once a week to monitor my levels, as well as see my transplant team every three months.
âI want people to know that a transplant isnât forever. Just because I got a transplant, doesnât mean Iâm âfixedâ forever. They can last anywhere from a year to 20 years. Rejection is a real thing.
âI still have to worry about getting sick when Iâm in public. I wear a mask in most shops when theyâre busy, on public transport or in a crowd indoors. I also wear a mask when the air quality is bad.
âI generally stay away from children because they are petri dishes full of germs. Being immunocompromised, I can get sick very easily, and clearly, Iâve become a slight germaphobe.
âCystic fibrosis is an end stage disease. With more awareness comes funding for research to develop life changing therapies and medications. Iâm sick of seeing my friends and people I know suffering and dying. I have high hopes that a cure will be found soon.â
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