The financial burden of PKD can come in many forms from his inability to work full time, to doctor appointments week after week or lab results or different scans or all the testing that goes along with having this disease.  So, it definitely can take its toll and that was one of the reasons that we made the decision to downsize from a house to an apartment was both financial and environmental so that we didn’t have the stresses of home ownership from just mowing the lawn to cleaning. I believe it’s been the right decision for us to move to an apartment, yes.

The physical challenges were – we couldn’t always plan on family events or being a part of activities that were scheduled – someone’s wedding, because we didn’t know how he would feel that day.  So, we’re very fortunate that we have an awesome family that’s understanding of his disease and we take what we get.  And if we couldn’t attend, he was also very supportive of my attending by myself and sending his best wishes.  Holidays where there’s 20 people in our house and we’re all getting together and he’s tired so he needs to go lay down for a while and if everyone could just keep it to a dull roar that would be great so that he can rest during a long holiday.

Emotionally, just trying to stay positive and know that ultimately there will be light at the end of the tunnel and we’re going to get through this.  We don’t know exactly where that tunnel is going to lead us on the way because every person’s different that has PKD, but knowing that there was a good treatment plan for him and we had the means to get him the best medical care possible.

Although PKD is a difficult disease, it’s one that can be managed in partnership with your medical team, your doctor, your caregivers, your family and don’t be afraid of it.  Face it head-on and live your best life.