To say my entire being was filled with gratitude after my kidney transplant is an understatement. Words simply can not express how thankful I was to be alive, nor can they measure the degree of gratitude I held for those who helped make this possible. To say life post-transplant was easy would be far from the actuality faced each day.
The day we drove home from the hospital, it was snowing again. All around us, the wintry world in Maryland more closely resembled what I think Nome, Alaska would look like. Snow drifts piled high on either side of the road and entire areas were engulfed in white. In my 50+ years, I had never witnessed such a winter. By the time we reached the base of our steep driveway, it was a blizzard. There was no way we could make it up to the top in our car...and the only alternative was to trek up the windy hill to the cabin by foot.
First, my husband and Steve helped Desirae up the drive. With Kevin on one side and Steve on the other, I watched as they slowly and steadily supported my daughter and helped her up the hill. The snow was coming down so hard and they were soon out of my range of view. As I sat behind in the car, I wondered just how I was going to get up that drive. My legs were still so weak that I was walking with the support of a cane, and my surgical site was no where near healed. I still had the drainage sac attached to my abdomen as well. I could barely maneuver on a flat, level stretch and now I would need to go straight up our snow covered driveway.
More quickly than I'd imagined they'd be, Kevin and Steve were back to escort me. They'd managed to get Desirae safely up and now it was my turn. So, what would be one of the longest most difficult hikes of my life began. The patience Kevin and Steve exhibited was remarkable, as my pace was as slow as it could be and still be moving. Each step I took felt grueling...but I was determined. I thought to myself, if I could successfully get up that driveway in my condition, I could do just about anything. Step by slippery step, we climbed. About midway up, when our cabin home was just beginning to come into view, I couldn't help but burst out laughing at the absurdity of this situation. If the medical staff at Hopkins had known about this, I wouldn't have been allowed to go home. But, here we were in the middle of the driveway in a blizzard. Our climb continued. If I'd felt triumphant on the "victory lap" when wheeled down the hospital corridors toward the door to exit for home, then I felt like a super star when we made it to the top of the drive and we were all safely settled in the cabin. This upward ascent through the snow was a fitting conclusion to the hospital experience, and it was also a fitting beginning to post transplant life.
Within a few days, Desirae and Steve returned to MA. Desirae made a tremendous recovery and was good to go and continue on with her life. Recovery came a lot slower for me. It would take several months for the surgical site to fully heal. My life was now one of taking anti-rejection medications and dealing with their side effects and frequent blood draws and medical appointments. My focus was on regaining physical strength and maintaining emotional balance.
If I have any advice to give about a kidney transplant, it would be to carefully choose your nephrologist, your kidney specialist who will be your continuing care physician after your transplant. I can not express how critical the relationship you share with this physician will be, not only to your recovery process, but to your life long maintenance of good health post transplant. My doctor is a woman about 12 years my junior. Not only is she a brilliant physician, she is also a person for whom I have utmost confidence and trust. She is personable and caring, and I can speak freely with her about all of my medical concerns. She is also willing to work with me, and, when it makes sense to do so, make exceptions to medical protocol and try different approaches ... very important since all of us have unique biochemistries and will not always adhere 100% to a general, one-size fits all standard. I believe the quality of communication you have with your nephrologist is directly proportional to how well you can achieve whatever level of optimal health is possible, given your own individual condition post transplant.
Patience with oneself and a changed way of life is critical. It takes a long, long time to feel anything close to what "normal" may mean for you with all the drugs you have to take to maintain the health of your new kidney. In my case, the most prolonged difficult side effect from anti-rejection medications is insomnia. I have not been able to regain a normal sleep pattern post transplant ... and good sleep is so critical to feeling good. Always a morning person in the past, I now have adjusted to sleeping when I can, which often means going to bed late and sleeping late, not an optimal adjustment, but fortunately a workable one for me. Urinary tract infections became the bane of my existence post transplant, and especially for women transplant recipients, this can be common. Weight gain and hair loss are also side effects many people, including myself, bear from medication side effects. They are inconveniences and discomforts, but a small price to pay for the gift of continued life. I also came down with an acute case of Lyme's Disease the year after my transplant, for which I was briefly hospitalized. If this disease had gone undiagnosed and left untreated, it could have proven fatal. Ultimately the disease could have attacked major organs, and with the compromised immune system a transplant patient lives with, irreparable damage likely would have been the result. Extreme attention and diligence to health become qualities one must acquire quickly post transplant if they are not already in place. You have to pay attention to your body and what it's telling you. Plus, you have to become obsessive with hand washing. It's one of the most important things one can do to reduce the effects of the transmission of germs which are everywhere. Living with a compromised immune system makes one much more vulnerable to germs and getting colds and the flu. Colds and flus can be worse and last longer or lead to further complications in those who have lowered abilities to fight off infection. So, you need to be cognisant and careful ... much more so than ever before. With time, even those things that were most difficult post transplant become much more manageable.
As I mentioned in my last transplant post, I was told, just before going to the hospital, that receiving a transplant would be like transforming into a butterfly. I also said I didn't fully comprehend this beautiful analogy at the time. Now, I think I do. The long stretch of ill health prior to a transplant is like a dormancy or hibernation period. Everything slows down for you and you are in a holding or waiting period. Your transplant awakens and renews life, just as it does for a butterfly that emerges from a pupal stage of rest or dormancy. Unlike a butterfly, who emerges from its pupa and pretty quickly unfolds and exercises its wings to fly, it takes a long time post transplant to feel the full vibrancy of life again ... but, it does come. Now, I understand that Desirae's gift of a new kidney and the result of renewed life is so much like getting wings. The possibilities are mine to freely choose. Most of all, enjoying and sharing life and all its wonders goes on.
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