So many things going on...hard to keep track!

My husband has been battling COPD and Fibrosis for many years. He also has cardio myopathy and congestive heart failure. He was told 8 years ago that he had two more years to live (thank goodness they were wrong). Since then he was diagnosed with Diabetes, had a Triple A surgery (Abdominal Aneurism)....they put in the "Y" stent), numerous prostate surgeries, congestive heart failure, Shingles, had two more stents put in his heart, which now totals three...and the list goes on. He has always been a tough guy and nothing bothers him, but obviously because all he's been through he is scared and obviously not feeling well at all. Recently he has lost over 40 pounds (not intentionally), is having problems swallowing (which one doctor suggested may be thrush from all the nebulizer treatments and puffers, his breathing has gotten much worse...and now they are bring lung replacement up again. I was concerned about the condition of his heart going into such invasive surgery as he has cardio myopathy and his heart is measuring around 45-50% right now. The transplant hospital assurred me that if a heart transplant is needed they would do it at the same time....or if any kind of repair is needed to his heart again, it would be done at the same time as the lung transplants. Last week he was so weak and had difficulty breathing, his feet were very swollen, so I had him admitted into the local hospital. After some x-rays they were very concerned because despite the "Y" stent in his abdomin the aneurism appeared to be getting larger. I got a copy of the test that was done and sent it to the vascular surgeon who I did not hear anything back from, which I hope is good news. Upon reading the report that I was given I saw that under kidney there was mention of "cathenoma"...I immediately called the hospital and asked them to send a note to our family practitioner (who was handling my husband's hospital stay) and advise him to read what was said about the kidneys and please get a Kidney specialist in to see him. First thing in the morning the kidney doctor was there, they did an MRI and told me not to worry, there is no cancer....it was a false reading (thank goodness). I was able to get my husband home a couple days ago. He is still VERY weak. Despite water pills his ankles are still swollen, and his breathing is horrible. I had an appointment scheduled with a cardiologist at the hospital planning the transplants but he was so weak and the hospital is two hours away, I cancelled and rescheduled for two weeks from now. In the meantime, besides the weakness, he is having issues swallowing still, eating very little because of it. He is trying, but understandably he is irritable and not following any of my suggestions. I thought about getting a nurse in to help...maybe with helping bathing.....I am going to attempt to install a shower door in our master bathroom....which will make it much easier to bath him if I am successful. I just got off the phone with a very sweet woman from a company called Liberator Medical. They are going to send me several different kinds of caths that I can try (all are put on externally)....it was so great to find out this is available! She was very knowledgable and answered all my questions including that these caths should be changed every 24 hours (which they did not do in the hospital!) So....my life is a little stressful right now (and I'm not exactly healthy either).....but I am a positive thinker and I know I will get my husband through all this....and when I do he will be a NEW MAN! I am looking forward to long walks and anything else we decide to do to enjoy the rest of our lives together. I apologize for running on and on in this post...but I'm sure many of you know you can't keep these things inside....and I hate burdening friends and family with all our issues. So thanks for letting me get it out! I hope all of you are able to deal with your issues and have a little better day each day coming!

Gloria

2 Replies

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  • I hope everything goes well for your husband, he's very lucky to have you :-) :-) sounds like you both have been through a lot, its good to get it off your chest I hope everything works out and you get out for them long walks very soon :-)

  • Dear Gloria, you are amazing!!! Sounds like you have been a champion advocate for your husband. He is so fortunate. Be sure to take care of yourself :) , and I hope things settle for you soon.

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