Oh, JoAnn, I do hope it's not rejection! He has been doing so well. Please do go to the ER first thing in the morning, if not sooner.
Fever is gone for now we are headed to the lab to donate blood. He gets labs every Mon and Thurs. Maybe it will show something. I did give him some tylenol last night. He's allowed 2,000 per day. It didn't take that much to bring the fever down. I'm sure something is going on. Hopefully its not serious.
My heart goes out to you. I’m so glad you are feeling more comfortable. It’s a tough row to hoe. You have come such a long way and I am very proud of your progress. Jerry may never realize all that you have gone through, but it’s okay. God knows.
Don’t forget that as a man, (I don’t mean to sound facetious) Jerry has a longing to be in control of the situation. It is important that you take a few steps back and let him take some risks. He may stumble, but he will realize his boundaries. He may never become the man he used to be, but at least you are afforded more time to spend with him. Everyone is not so fortunate and we must count our blessings!
Harvey is really getting on my nerves so that reassures me that he is recovering well. But I will never let my guard down completely. I am currently sick with a cold or flu. I am very careful not to expose Harvey to my germs. This proved to be a real challenge. I thought I had a can of Lysol but I couldn’t find it. I have been rubbing the TV remote control down with his alcohol swabs! J
Yesterday, Harvey went to the transplant clinic alone (I refused to go since there are very vulnerable patients there). The doctor (secondary to the Transplant Director) wanted him to double the dose of his blood pressure medicine (Cozar 25mg to 50mg). Harvey did not question this, but I had a fit! I called them and demanded answers.
Since Harvey has been going to the gym his blood pressure has dropped well within normal limits (at times he presented with low blood pressure). I insisted that increasing the meds may jeopardize his health. Within hours, they backed off this decision and decided not to change his meds. It just goes to show you that you need to trust your instincts.
Life will slowly get back to normal. You need to simply stretch, take in a deep breath and realize that there are things simply beyond your control. It’s time to concentrate on yourself a little. Jerry needs to step up and let you relax a bit. You deserve it.
Life is short. Live it as full as you can.
Penny We just got back from Vanderbilt. They removed the stent they had put in for the bile duct leak. It went well and they said he had healed well. No more leaks. They took Jerry off the Bumex hoping it would help his itching. Within a week the itching had stopped. OMG after two years of itching it had finally stopped. But after yesterdays visit they doubled his Lasix because he still has some fluid. His hernia is really bothering him. The Dr. does not want to repair it until all the fluid is gone. His legs are finally back to normal its just his ankles, feet and belly. I can see him out of the corner of my eye starting to itch again. Every bit of skin he has is flaking!!! Talk about blood pressure. They doubled him up on his blood pressure because his pressure is averaging about 160/85 and they want it lower. He starts Physical Therapy next week for his shoulder. I hope it helps. He is still in pain. I'm thinking that could belmaking his pressure go up some. His prednisone dose is 5 ml a day so maybe he will quit eating some. And the words that are coming out of his mouth!!!! I have never heard that man swear but he is now. I just have to laugh. I've started back taking Yoga today. I love it. It helps me relax. I can see him improving every day. Its just really slow. Once I realized it wasn't going to happen fast I have settled down. I do try to try to keep him out of Wal Mart with this swine flu. But that is getting harder because the man loves to eat!!! I hope you beat the bug you have. No time to get sick. Get some rest.
JoAnn, I'm not Penny, but wanted to thank you for the update on Jerry. You guys have been through so much. I hope the problems he has now are just minor ones that can be dealt with or will disappear in time. When you mentioned his itching and flaking skin, it made me think of my own. It must be something about anesthesia--every time I am put under for surgery, my skin (which is dry to begin with) gets so dry it is flaking off and my feet are itching on top. I look like a snake discarding his skin! I've been wetting a washcloth and wiping as much of the dead skin off as I can and then following that with Neutrogena Bath Oil. Lotions just don't help. If the itching Jerry has now is due to the dry, flakiness of his skin, you might try some bath oil--or even a little baby oil.
I used to take yoga classes years ago in NYC, and you are right--it is really relaxing. I don't think I could do most of the moves now with the artificial hips. In fact, I can't get on the floor. Wish I could do it, though.
Please continue to keep us updated.
Jerry's itching has lasted about 2yrs. Vanderbilt has tried everything. When they took him off the Bumex and put him on lasix after about a week it was so much better we were jumping up and down. Last week they upped hs dose of Lasix and now the itching is back. I just want to scream at times so I can just immagine how he must feel. One time I put a paste of corn starch and oatmeal on him. I thought I would die laughing. He looked like the Pillsbury Dough Boy!!! Needless to say it didn't work. And yes he is flakey like a snake. I will try the baby oil. Every day he gets a little stronger so that is so exciting. What a journey as all of you know. We are so thankful. I am anxious for the prednisone to be Gone. But, I will put up with it as long as he has to take it. I just won't let him around the grand kids for long periods of time because you never know what is going to come out of his mouth!!!!!! ha ha. Has anyone heard from John??? I think we all miss him.
JoAnn & Connie,
This is a link to a great website on dry skin that provides details and explanations on how to treat it. I found it interesting and you may find a combination that will help. http://dermnetnz.org/treatments/emollients.html
JoAnn, keep after the Doc’s about Jerry’s blood pressure. Harvey’s was so high after the transplant that I suspect it caused his aneurysm. Glad to hear that you are doing yoga and that you are maintaining your sense of humor. I don’t do it, but there is nothing like a good stretch (and a yawn) to get me feeling energized.
This cold is making me miserable. I can’t rest because I keep coughing. I took some Mucinex this morning so hopefully it will break up some of the congestion in my chest. Other than the cough, I feel okay. So far, Harvey shows no signs of catching it (fingers crossed).
Penny, thanks for the link. However, amongst the "occlusives," I find the bath oil applied directly to damp skin works the best.
For itching, I sometimes use a hydrocortisone cream or ointment.
I hope you start feeling better soon! They were giving me Musinex in rehab when I had pneumonia. I was also getting nebulizer treatments. It took about 2 weeks for my chest to clear up.
2 WEEKS!?? I’m going camping in 2 weeks. It’s Harvey’s “do over” in the Smoky Mountains. I hope this clears up before then. I’m miserable. I didn’t bother going into work today because I cannot even maintain a conversation for the coughing spells.
I thought that website was pretty cool. I didn’t realize there was such a difference in these products. I thought they just came up with these fancy terms just to sell product. Seems like if you use a moisturizer then apply the oil your skin would retain more fluid. Seems that if you combine the products, you can get a greater benefit from them.