My name is Hiland. I am one lucky guy. After more than two years on the heart transplant wait list, I received the magical gift of a new life from a generous 25-year old donor. This experience affected all family and many friends.
My wait and subsequent recovery have been challenging for every quadrant of my life. I hope that this blog will help answer questions for those who are waiting or for those who are considering transplantation or for those in recovery and all their concerned caretakers.
I was listed at Columbia Presbyterian Hospital in New York for 19 months before I transferred to Tampa General Hospital. I have been treated by three stellar cardiologists in Albany, Donna Mancini at Columbia Pres and Dr. Debby Rynde-Hoffman of Tampa General. I have spent an inordinate amount of time in the hospital prior to transplantation and a daunting amount of time in Tampa General Hospital and Albany Medical Center since the transplant.
My two-year review at TGH was extremely successful. However, there is no simple way to describe my experience. I guess “if it could go wrong, it did” is the best description of my transplant. The beautiful, healthy heart that is now in me replaced a heart that was about four times larger.
On the wait list and in recovery, you must do your best to walk or exercise with mild resistance every day. The healthier you are before transplantation, the more successful your heart transplantation will be.
In my recovery, I faced these challenges:
- Aspergillus pneumonia in left lung.
- Bacterial pneumonia in right lung.
- Salmonella (twice)
- Chronic myopathy
- Chronic neuropathy
- Significant weight loss
- Aspergillus in the spine (from the lung)
- Removal of spine between between discs T6 and T7.
- Removal of two ribs to be placed between T6 and T7.
- Insertion of 2 steel rods between T6 and T7.
- Insertion of chicken wire to protect replaced spine.
- Insertion of steel plate to protect the area.
- Removal of gall bladder and 23 gallbladder stones.
- Pulmonary embolism
- Massive clotting from knees down and from waist up.
- Viral infection
As I said, my recovery has been challenging. I prefer not to count the number of weeks spent in hospitals since my heart transplant. However, my last visit for treatment of the viral pneumonia was the first time in seven months that I have been hospitalized. Ironically, I have not suffered any rejection.
I am not a physician. I am a patient. I will always be a patient. If you are transplanted, you may experience some of my challenges. It is unlikely you would suffer them all.
In reviewing my heart transplant guides from Columbia Presbyterian and Tampa General, I feel these guides were more technical than necessary. Both guides explain transplant policies, procedures, stress the need for compliance, the risks of non-compliance and outline risks. Personally, I do not feel the guides are a fair representation. It is my hope that my plain language experiences will clarify the transplant process.
I repeat. I am not a physician. I am a patient. All experiences on this site describe my patient experiences and observations and research results about certain topics of interest to heart transplant recipients.
Please feel free to post comments or send along a few questions. Thank you for spending time with me.