The Challenges Of Being The Patient or The Care Giver
Do you ever have so much going on in your mind that you find it impossible to write about? That's where I've been lately, so many life events that I find hard to put into words. I think I will start from the present first, and possibly go back in time with another buzz in order to fill in the blanks, maybe.
My husband was diagnosed with a rare condition years ago which has led to other medical issues. He was also diagnosed with three (not one) lung conditions which there is no cure for, only treatment(s) to try and reduce symptoms along with progression.
My husband has a team of Doctors at the University of Pittsburgh Medical Center which we visit more often than he'd like at times. The great thing about setting up your loved one with a team of Doctors from the same Hospital is the fact that they interact with each other, are able to pull up your test results because they use the same system, in our case UPMC, and they stay in contact with each other; this benefits the patient because each doctor deals with a 'piece' of you when you have multiple issues they can pull those pieces of the puzzle together as a team.
Years ago my husband was diagnosed with Sarcoidosis, a disease that can go into remission or progress, he was diagnosed in 1987, I remember this year well because I was pregnant with our second child. The doctors told me before they got a final diagnosis that they were 99% sure he had Lymphoma. I was scared shitless. I had a nagging fear until the biopsy report came back that I could lose my husband to cancer before our second child was born. I had fear for what he was going to face and how I would deal with it emotionally. I had to be strong, even though I felt like I was dying on the inside. It took two months for the biopsy to come back, it wasn't cancer, it was Sarcoidosis.
Sarcoidosis, a chronic disease of unknown cause characterized by the enlargement of lymph nodes in many parts of the body and the widespread appearance of granulomas derived from the reticuloendothelial system.In my husbands case, the granulomas have grown and enlarged within his lungs (the most common progression). He was told years ago it went into remission and from that point on, he was treated for "Asthma," not sarcoid. He had asthma as a child so we honestly believed that it did return as a young adult.
His sarcoidosis was found on a routine Chest X-ray and he had no symptoms. It wasn't until later in life that his symptoms became a major issue and the Doctors were still treating it as "Asthma."
Fast forward- In 2011 I pushed for more testing because I saw him slowly declining. Always follow your gut, it's usually right and even if it isn't when it comes to a persons physical health, nothing lost if you're wrong. I'm glad I pushed for more testing because we found out there were other issues, and after a lot sleepless nights for both of us, we began to get answers.
In 2016 my husband's breathing was getting worse and he was sent to another specialist on the team at UPMC, the Doctor put him on an anti-rejection drug which also suppresses the immune system. Suppression of the immune system is supposed to suppress the growth of more granulomas inside the lungs along with scarring, also referred to as Pulmonary Fibrosis which they can't reverse either. Fibrosis spreads, so once again, immnosuppressant drugs can help to slow the growth of fibrosis down. The down side of immunosuppresants is that they can lower your immune system to the point that you can pick up bacteria that a normal, healthy individual can fight off.
He's had pneumonia 2 times since May of 2017. He's now off of his immunosuppressants and we will find out what the Specialist has in mind next week. My husband is tough and it takes a lot to keep him down, this last bought of pneumonia kept him in bed for almost 2 weeks. We ended up on the Emergency Room last weekend because he was he wasn't able to breathe. He had a fever and was delirious. I woke him up in the morning because he was gurgling and rattling as he slept. I told him we have to go to the ER. He kept putting his hands up in the air and saying, "I'm getting out of bed," I thought I was going to have to call an ambulance. Luckily, he finally aroused more and was able to get up for me.
As far as the infection goes, he appears better. His breathing, not so good. I'm hoping that this hasn't caused more damage. I can't tell him any of this because it would be cruel and unnecessary. I can tell by the look on his face that he has a lot of fearful thoughts running through his mind. I try to focus on the positive which seems to help him, even if it's momentary, just have a lot of momentary minutes with your loved one through out the day when they are living in fear of the unknown. Pamper them no matter how tired you may become. Pamper yourself when you can, no one else is going to do it for you. I find just listening to music, cooking, or chatting with a good friend can help me to stay centered, it's hard to stay centered but it's vital you do for your loved one's sake.
If you find yourself in a similar situation now or in the future, remember to do your homework too. It's important to understand the illness, the treatments and the medications your loved one is on. Keep all the Doctors numbers close at hand in case you need to get a hold of them. Don't be afraid to call the Doctor on behalf of your loved one either, because there may be times you are stumped, worried, not sure if you need to run to ER or the Doctor's office. Good Doctors will guide you and really DO care! Remember, no question is stupid. When they are ill, they are going to get moody, don't take it personal. It's okay to cry, if you don't allow yourself to shed your own emotions you may end up blowing on the wrong person or your loved one. It's also OKAY to question the doctor if you feel they aren't doing all they should or you're just stumped.
Don't isolate yourself by becoming so immersed in the illness of your loved one that you forget to reach out to others. It does take energy to reach out and many people, myself included feel like people may think we are whining if we reach out. Remember, if you don't reach out, people can't read your mind which will make you feel isolated, it's amazing when you are able to open up, you will find there are people who will put everything aside and be there for you and your loved one!
I have been isolating myself from everyone over the months, not intentionally but it hit me today that I've felt so alone. This is not healthy when you are the caregiver, we all need a little help.
One last note that just came to mind- when a person has chronic breathing problems or develops an illness that affects their breathing more, they may be put on high dose steroids. When someone is on a high dose of steroids they get 'roid' rage as I call it. Actually, I think I've heard others use the same term. They are hard to reason with and easy to upset. I'm not sure I have an answer for this one other than, learn to not take it personal and if you need to, walk away until you calm down. It's extremely stressful watching someone you love struggle and just as stressful when they lash out at you for no reason at all. They don't mean to lash out, they are not in control. When my husband came down from his steroids, he thanked me for taking such good care of him. My answer, "you never have to thank me, that's what love is all about, and you'd do the same for me if the table was turned."
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