Living with a chronic GVHD
by Ann Haehn
Well, here we are, the one year anniversary of Genny’s transplant having just been reached. The big event known in our world as a re-birthday . . . and a major milestone for any survivor. We are so happy to have crossed this threshold. Life is good — really good. But it is also different, because Genny lives with one of the dreaded residual effects of a matched unrelated donor stem cell transplant (SCT), and that is GVHD (graft versus host disease).
Given fifty percent of transplant survivors deal with chronic GVHD (or so we’ve read), we might have known this would happen to Genny because truthfully, she has not sailed through any of her cancer treatments the past two years. Yet, she has consistently maintained a positive attitude, telling herself that she is an individual and not a statistic. I cannot stress enough that Gen’s positive attitude has served her well, and in fact, contributes greatly towards improved health for her. Pre-transplant, Genny struggled with pharmaceutical treatments. Hydroxy gave her terrible mouth ulcers, Anagrelide likely accelerated the fibrosis progression in her bone marrow, and Pegasys debilitated her with its numerous side effects.
Pegasys was supposed to be a miracle drug and in some ways it was in that it controlled Genny’s counts, but unlike so many others, she was almost bedridden while on this treatment. She couldn’t wait to get off Pegasys and get on with transplant.
But going into transplant was not going to be easy either. Gen had co-morbid complications,
not one, but two rare blood cancers: pMF and MDS. She also had Budd-Chiari disease, liver disease, portal hypertension, and esophageal varices. Wow, she really was a mess. It was a grim situation with an equally grim prognosis; Gen was given one, at best, two years to live. A transplant truly was Genny’s only hope for survival.
And so she went for it and has never looked back. Gen knew, of course, that GVHD might become a chronic condition post-transplant – it was one of the risks. It was a fear she had. And that fear has now become a reality. A little bit of GVHD is a good thing and is needed for engraftment. A lot of GVHD can lead to chronic, and sometimes life-threatening, conditions. Well, Genny faces this new reality like her past cancer treatments. She is accepting her new normal but also looking for ways to improve her situation.
Gen’s GVHD primarily has settled into the gut as well as the joints. The gut is pretty easy to control through diet and she doesn’t take additional drugs to manage it. The joints are another issue altogether. Gen now walks with the aid of a cane, albeit a very trendy pink cane (she is ever the girly-girl). For long distance, Gen goes in a wheel chair. It’s important to note this wheel chair is a special one – it belonged to a dear friend of Gen’s, Jennifer Ronhovde, who passed away on October 20, 2012, from a relapsed stem cell transplant (Jen Ronhovde had AML which was just too strong for the donor cells to combat). Genny is grateful to have Jen’s wheelchair because it provides her with the freedom to make long distance treks now including being able to do a recent family vacation to Disney World. There is no way Gen would have been able to walk the park, but with the wheelchair, she and her family saw and did everything they wanted to do at Disney. When Genny goes in the wheelchair, she doesn’t feel sad – she just feels closer to Jennifer.
Genny could treat her GVHD of the joints with steroids and be much improved, but she dislikes prednisone. Having had some very adverse reactions to prednisone over the past year, Genny refuses to accept steroids as her only treatment for GVHD.
There have been so many miles Genny has traveled since she first became sick. In the early days, she rarely questioned her doctor’s assessment for treatment plans, but over the last year, Gen has become a strong, empowered patient, and realizes she has choices. Genny believes in her doctor deeply – he saved her life and continues to keep her safe — and she has a wonderful, trusting relationship with him, but Genny also challenges Dr. Mark when she feels it is appropriate.
As a result, Genny has requested Dr. Mark authorize a longer-term GVHD treatment plan called photopheresis, and he has agreed to do so after doing some additional tests that will give him more information about her current GVHD condition. I’m not going to go into the clinical description of photopheresis in this article. You can Google it if you’re really that interested. Suffice it to say that we have good friends who are two and three years post-transplant dealing with chronic GVHD, and photopheresis has helped them tremendously with few if any side-effects. Gen believes she will have a similar outcome. It may take a couple of years but she is willing to put in the time and energy that photopheresis requires.
Every day when I talk to my daughter I hear a lift in her voice now.
I’m so proud of her and how she faces her daily challenges. Genny focuses on the positive because she just doesn’t see the personal benefit in swirling in negativity. My daughter firmly believes she’ll live the life granted to her to the best of her ability. And she is very thankful to be alive to raise her children.
Gen was less active and in more pain pre-transplant than post-transplant, even with GVHD, so it also really is all about perspective. Noteworthy is that Gen no longer requires me to be in the home with her to help her take care of her and her children (and I was living with her several months before transplant because she was so ill). Gen drives. She takes her children to their activities. She cooks meals. She does laundry. She is a full-time mom again. But she does get incredibly fatigued and she does deal with the joint pain from GVHD. So I still try to stay overnight once a week to give her a break, and she is grateful when I do.
On Christmas Eve, Genny’s boyfriend Josh proposed to her. What a man. Josh has stood by Genny’s side throughout this journey, and now he is going to marry her in June of 2013. It truly is a wonderful love story. Gen is proof that there is a good, quality life after transplant, even with chronic GVHD. Some days are more painful than others, but Genny doesn’t sit around feeling sorry for herself. Instead, she feels so grateful. So thankful that her donor (whom we nicknamed “Hans”) was willing to provide his stem cells to save her life. And oh, she is giddy with joy at planning her wedding.
As Genny’s mom and her primary caregiver this past eighteen months, I think of life in stages now. Life before Genny got cancer. Life pre-transplant (Hydroxy, Anagrilide, Pegasys). Life through transplant. Life after transplant. Every phase , even pre-sickness, held the good, the bad, and the ugly of life. That’s just the way it is in this three-dimensional world of ours. There are days I have to remind myself that healthy individuals have their challenges, too. It’s important to remember that just because our family has lived with cancer and transplant, we are not unique in dealing with the ups and downs of life. It helps me keep things in perspective. It helps Genny to do the same.
In conclusion, I leave you with Genny’s own words: “At the end of the day, we all have a choice about how we view our challenges and how we view our life. We can choose to dwell on the negative or we can choose to focus on the beautiful things that life brings, even through a cancer journey.”
Take me back to the Contents
© Ann Haehn and MPNforum.com, 2013. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Ann Haehn and MPNforum.com with appropriate and specific direction to the original content.