Last week started out as any other week, but the last few days have been a whirlwind for me (So sorry for the long post that is ahead..ha!) As many of you know I have been receiving home health care and palliative to help for my chronic bladder infections. However, over time instead of getting better the infections have gotten progressively worse, and the weaker I have become. Being housebound and bedbound has been a challenge and over the last couple of months I have retained a lot of fluid –so much fluid that it makes it hard for me to move well.
When I visited my urology PA in Charlotte two weeks ago she did not do anything except keep me on the same plan the infectious disease doctor had me on. Because my bladder situation is so rare and complicated it seems we have reached the point of treating the infections until sadly they cannot be treated anymore. We have went to other physicians in the state for advice, but Dr. K in Charlotte is the most qualified for my case. Therefore, we have exhausted all other avenues for help unless Dr. K has a better solution in October, but that seems unlikely.
I have great respect for Dr. Love who is my former palliative doctor and now my General Practitioner, and her nurses Debbie and Amy. A long time ago Dr. Love and I had a discussion about Hospice and I told her to be honest and tell me if she ever thought I needed hospice care. She assured me she would, and last Wednesday following a visit from her nurses, they called and told me they thought hospice would be the best plan for me at the moment.
As mentioned earlier, over the last couple of months I have retained a large amount of fluid and have become significantly weaker. Because of this and other reasons, it would be best for me to have nurses visit me a couple times a week to moniter the fluid, the infections, and my pain. Hospice can do this in ways that palliative and home health cannot, and are able to consult with their physicians and mine to determine what needs to be done for me on a day to day basis. They are also able to take regular urine cultures, prescribe meds, and do blood work and such all at my house which is very helpful right now. It is our goal that Hospice will help me build up some strength and recuperate. I could be discharged in a couple months or stay on as long as I need them.
Whether it be a few months or years I am so thankful to have their assistance right now. It has been such a blessing. I never thought I would be glad to hear the word hospice in regards to me, but even in the short time of receiving their care, they have helped so much. They truly do desire to make the patient comfortable. I am already receiving medicine and supplies from them including a new wheelchair. My sweet nurses Jodie and Jill have been so good to work with and patiently answers all of our questions. So many (myself included), hear the word hospice and automatically think of death or end of life care. While that can be true they can also provide respite and recuperation for cases like mine. Realistically my situation could be terminal and could go in that direction at anytime. However, thankfully the current antibiotic treatment I’m on is working right now and my prayer is that different treatments will help me for a long time to come. Regardless of what I need in the future, I’m thankful to have the specific care from hospice that I have today.
My family and I have been praying for the help that I have needed, and the Lord has so graciously answered those prayers through Hospice. Even though this is the right next step for my health I will miss all my sweet nurses from Healthy at Home. Ya’ll have been in my life and home for two years and I will be forever grateful for your care. I love each of you and will greatly miss the joy and the laughter you brought my way on the bad days.
I do not know what my future holds or how much longer I will be on this earth. None of us can ever really know those details but chronic/terminal illness has a way of making you realize what is truly important in life. Lately, I have been reminded of that more than ever and it has brought me closer to Jesus.
My view these days are what I can see from the hospital bed located in my bedroom and for the longest time I thought that limited my view but with open hands and an open heart the Lord has changed my perspective and shown me how to find all the beauty and joy I need from right here. Even in these hard circumstances God has continued to show me His goodness and has challenged me to continue to have courage and wait and lean on Him. Psalm 27:13-14 says it perfectly:
“I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living.Wait for the Lord;
Be strong and let your heart take courage; Yes, wait for the Lord.”
Thanks again for all the prayers. They mean the world and encourage me so much. This has been a hard few days because my treatment regiment for pain is being changed. Lots of pain, nauesea, and swelling but until my body is adjusted I will be having more pain than usual. Pray that the doctors and nurses continue to have wisdom to know how to make me comfortabe and that I will gain strength each day. While we are thankful for Hospice, it is still sad to know that I need their help. No one wants to need Hospice, so please pray for continued peace for my heart and mind. Stay tuned to the blog for future updates. Also, I will continue to write about my study of the book of Nehemiah throughout the summer, so be on the lookout for that!
I hope everyone is having a wonderful Wednesday!