Patient Stories


sunflower-bullet Transplant evaluation can take days and stretch into weeks. From routine blood work to EKGs and other exams, an individual must endure test upon test. One then must add the numerous assessments by cardiologists, urologists, transplant surgeons, doctors specializing in the particular organ that is failing, and others. There are meetings with individual members of the transplant team, including nurses, transplant coordinators, social workers, and financial specialists. Finally, there are educational sessions introducing the potential recipient and others to the basics of the transplant process and what to expect both before and after the surgery.





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“Jose and Delia”* traveled to Houston from El Paso by bus so she could be evaluated for a kidney transplant. They could not afford to stay at a hotel, so they slept in the lobby of the hospital. A compassionate soul in housekeeping wanted to help, so she opened the door of an office so they could have a quiet place to sleep. Their story was uncovered when Delia developed a rash from sleeping on the floor.



sunflower-bullet2 During treatment, patients and family members who reside outside Houston must cope with their need for shelter. Some make creative but difficult choices. Every transplant social worker has stories of those who have slept in their car, in the patient’s hospital room, or in a waiting room.






“Fred” was found sleeping in the garage on the ground in a parking space until a security guard found him and made him leave. “Isaac” slept at the Greyhound bus terminal downtown. "Ralph’s" wife, "Judith", came by emergency helicopter transport to Houston when she needed a heart transplant. He was found sleeping in a different waiting room each night while Judith was treated in the intensive care unit. He had no resources to secure any other place to stay.


sunflower-bullet3 Follow-up after a transplant requires at least six weeks in which patients are closely monitored for any sign of rejection or infection. The level of anti-rejection drugs in the patient’s blood is watched carefully, and adjustments to the dosage of these life-sustaining medications are made regularly. These initial weeks of follow up are critical to the success of the transplant and to the life of the patient. Patients cannot drive for at least a month after surgery, and coming back to Houston for post-op care can be a major hardship. Both the cost of lodging and finding a volunteer willing to drive 200 miles or more round trip add to the stress, difficulty and expense of post-transplant care.
A resident of Baton Rouge, Louisiana, “Bob” just stopped coming for his scheduled lab and clinic appointments. When questioned by a social worker about his failure to keep his appointments, he simply replied, “Is the hospital going to pay for my motel room?” “Tamika” traveled from Bryan/College Station –100 miles from Houston – for labs and clinic appointments twice a week. She arrived early in the morning to have her blood drawn before breakfast and her morning medications, and she stayed for a mid-afternoon follow-up visit with her doctor. Then she traveled home, exhausted from her long day while still recovering from transplant surgery less than one month before. Innumerable patients share Tamika’s story. You can help us reach out to serve patients and family members undergoing these same unmet needs. Click here to learn how.
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*Although the names are fictional, these accounts are true.

More patient stories...

 


raven2 Raven Lenz

“We were able to find 3 different hotels with a few nights available here and there so we had to switch back and forth between them, which is not easy when you have just had a double organ transplant. However we made it work somehow. It is very important to tell people how hard it actually is after you have had the transplant. We had so many questions. No one actually prepared me for the tough road ahead after the actual transplant. I feel people simply concentrate on getting the transplant then once its done they think everything will just go back to normal. The truth is after the surgery is when the work begins. For the first few weeks I spent A LOT of time in these 3 different hotel rooms and they were very uncomfortable. I felt alone and confused. That's not what you want or need when you can barely get around. That's why I think Nora's Home is a wonderful blessing.”

 

alejandromata Alejandro Antonio Mata Mill from Venezuela

How would you have benefited from a place like Nora’s Home?

“You are going to be a great support to people. There are a lot of people who can’t afford housing. It is really, really expensive…I think it is a very nice idea, because you are going to help a lot of people. It is a shelter; it is a place to support each other. It is the most important thing for the transplant journey, to have support – education, emotional and financial. Most important support is the family, it is also good to have other support from your friends and support groups. They encourage you to keep fighting. They help educate you on what the transplant experience is really like and what you can do to stay healthy and hopeful. You get to see people who are 20, 10 year transplant patients and they look great. They are saying you can be like me also…. You can have a new life, you can do it too.