-
Have You Made Changes To Your Home To Accommodate Your Illness?
As my son’s PH progressed climbing the stairs to his bedroom became increasingly difficult. Our living room slowly transformed into a make-shift bedroom for him when he lacked the energy to go upstairs. Our kitchen became part medical clinic. We had plastic shelving units in a corner filled with medical supplies and a “clean area” reserved just for mixing Flolan and visits with home nurses. We kept certain space around our home free of everything so that my son had a place to keep his oxygen equipment as he moved about throughout the day.
The biggest change to our home was post-transplant. We removed all of the old carpeting in our home and put in hard wood floors to protect him from dust and molds that carpets can carry.
Have you changed the appearance and environment of your home since being diagnosed with PH? How has it helped with your daily rountines?
-
7 Replies
-
Hi @colleensteele, when I was newly diagnosed, we sold our 2 story home because I was crawling up the stairs each night to bed. That was the most significant change for me. Now, I vow never to have stairs, Hehe.
I can empathize with Cullen and those stairs. I find that we often need to change things to accommodate PH. I can imagine coming home post-transplant was a process. I think about you and Cullen in CA and your husband and other son in WA. This must have been quite a strain.
I now use the spare room for my oxygen supplies and my concentrator. I also have medical supplies in my dining/office area. These are mostly for my other consisting of illnesses.
Great question and important.
-
@jenc I’m sure everyone has had to adjust their home in some way. When Cullen had PH we seriously considered moving to a ranch to eliminate the stair problem. We probably would have but he declined rapidly and a move on top of being on the transplant list sounded too overwhelming. Thank God, he doesn’t struggle with stairs any longer.
We do still have a medical corner filled with boxes of medicine, blood pressure cuff, breathing treatments, etc.. It’s just our norm and we don’t think about it until someone who hasn’t been to house before avert their eyes to that area. For those who don’t live this type of life seeing medical supplies in a kitchen or living room must seem very out of place and odd.
-
@colleensteele, I cannot imagine how it would have been to add the stress of trying to sell your home during the already stressful and overwhelming transplant process. I am grateful that he has no issues with the stairs now, that is such a huge blessing!
Yes, I think others may find our medical supplies in our living and dining areas strange. But, working in nursing and going into homes, you learn to put the supplies where they are best for each family. My Mawmaw has her hospital bed in the living room area. She fought this for several years, but once my mom and I told her that she could see everyone and out of the front windows, she enjoys it there now.
-
Oddly enough, my husband and I had already made a big change before I was ever diagnosed. I started having troubles with my left knee which I ultimately had replaced. We lived in a two story home and going upstairs to bed at night was miserable. So we “downsized” to a ranch with a loft. As it turned out, because of the huge basement, it is technically a larger house square footage wise. But everything we need is on the first floor. My husband’s office/man cave is in one of the bedrooms upstairs. I don’t go there often. There is hardwood in our bedroom, a nod to my asthma. I wanted it everywhere but we could not afford it. So,it just so happened that we made these changes before getting diagnosed with PH. If we had not, we would have almost immediately. But now that we have the great house, I will say that the major change has been HELP….help with housekeeping. We now have a twice a month housekeeping service and that is the major change because of my PH diagnosis. It is not cheap but even my husband says that he is happy we did it.
-
Wow, @becca, I am sorry about your knee surgery before PH. But, the positive out of that is the “downsizing” that you did to a ranch style home. I know for me, the stairs were a nightmare and my bedroom was upstairs. I think if our master and a full bath had been downstairs, we would have stayed.
The first home that we “downsized ” too was larger, also. So when our daughter left for college, we downsized again to this house. This house is the perfect size for us. The previous one was too big, and like you, it was just too much to keep clean.
We have hardwood floors too because of my hubby’s asthma.
This smaller home, I am grateful that my hubby does the deep cleaning that I cannot do. If we could afford it, I would have a housekeeper maybe once per week. I agree with your husband. It is not cheap, but worth it. That is for both of you. Thanks for sharing your experience with us.
How are you doing this week? I am sending you hugs this morning from Texas.
-
Stair are my nemesis, also. I dread the day my bed gets moved downstairs, (no bedrms on 1st level). I bought a small refridgerator and shelving for dry goods in our north hallway, (it’s wide). Pulled up carpets, too.
-
Hi @dinky1952, I always look at stairs now like a huge mountain. I think it is almost like PTSD after crawling up the stairs at night. Even though that was years ago, it still is stuck in my mind.
I have a PH friend who just recently decided to sell her 2 story home to a ranch style. It is sad but things that we sometimes do to help improve our quality of life. As I always say, a home we can replace, but not our health.
Your small fridge and pantry for supplies sound like a great idea. I don’t have any carpet, either.
Anyone else makes any changes to your home since PH?
Log in to reply.