Well I havent written on here since the Biopsy day in the hospital and a lot has happened since then. The biopsy did not look good. Tim has showed severe Fibrosis (scar Tissure) with both his Kidneys and that is something that can never be repaired. They are showing that with both of his combined kidneys he has between 15 and 18% left of Kidney Function and that it may start to decrease within 6 months to a year. What this all means is that Tim will have to go on Dialysis once it goes below 10% function and will need a Kidney Transplant. Chronic Kidney Disease is not his underlying condition. He has vasculitis which is an Auto Immune disease . Like Lupus it his Immune system attacks his body instead of working for him. Vasculitis is inflammation of the blood and can attack anything at anytime. With Tim it was the Kidneys that it hit first and hit hard. Dialysis is not going to be the last of his struggles. He was placed on a high dosage of Prednisone to suppress his immune system which causes a lot of issues with being suseptable to flu's and colds. He is also on high dosages of High Blood pressure because the kidney failure made the heart work double time and has caused his heart to be enlarged and harden. Hopefully with the kidneys under control the heart can beat at a normal pace and we can discontinue the medication, but for now it is part of his everyday routine. He is on a special diet which limits his potassium, his phosphaurus and his sodium. He is also limited to 1 liter of fluid a day. The kidneys act as a filtration system of the body and filters out toxins. With his kidneys not working this diet should limit the need of kidneys until he starts dialysis. This is very hard because 1liter is like compared to 3 cans of soda, phosphaurus is your meats, cheese, fish, milk, and your potassium consists of fruits and veggies, and your sodium is everything... There is a very big limit as to what he can eat and drink. He has been very good with obtaining a diet that is healthy for him and trying new things. He has to take binders that help his food so it doesnt reach the kidneys for help to remove toxins. For anyone that doesnt know what dialysis consists of it can be done three different ways. One you can go to a facility and go on it for 4 hours three times a week. This is a machine that a port is inserted into your forearm with two hoses called a fistula. the machine takes all your blood out of your body *not at the same time obviously* and filters all the toxens out and then pumps the blood back into the body nice and clean. The second way is a hose that is inserted into the stomach and it does the same thing but at home. This is done every single day and is time consuming but has a little bit more privacy in the home, and the last way is to be hooked up to a machine that does this automatically every night while you are sleeping. Convienent for the people who actively go to work during the day. We are not sure what Tim's best option would be at this point and he hasnt decided the route as of yet. Yale has been so great with providing him excellent care, but while he was in the hospital they gave him a staph infection. Not as intense or life long like mrsa but MSSA which can be healed with antibiotics. He had a hickman (a port that is entered through the chest and into the main artery in his neck) and every 8 hours hes given an antibiotic. He was allergic to penicillin so he spent Labor day weekend in the hospital and they put him on a new antibiotic which has been working out better since. He should be off the Antibiotic on September 20th and if all goes well the Hickman can be removed. This will then allow his chemotherapy to start. Not for cancer but for his autoimmune disease. Vasculitis can be suppressed by suppressing the immune system. Chemotherapy can help do that and may be able to prolong the need for dialysis. But it is a trial kind of thing. They are going to give him injections once a month for 6 months to see if it improves at all, and if it doesn't they are going to stop the chemo and monitor until he has either a transplant or dialysis. We are still looking for a donor.. If anyone is interested. You have to be O positive, have no history of cancer, within a normal weight range, and if you smoke you have to quit. Then they can test you to see if your tissues would compare to Tims.. its a hard process and a very tough decision. I unfortunatly cannot help him. I am not the blood type and so far the family that has offered cannot as well because of previous traces of illness. Its very tough.
This is where we are at. Tim always has a smile on his face, and if it wasnt for the hickman port he would be out and about. He has to be careful with large crowds and has to be extra clean because of the Prednisone but he is loving and lively and feels better than before which is great. We are working on things day by day and have accepted the disease and the possible outcome of all of this. We want to do more with the Chronic Kidney Disease foundation as well as Organ Donation. We will have walks and fundraisers, and even our wedding in the upcoming year. Nothing in life is easy and people take their health for granted. The truth is anything can hit anyone at anytime and coming to terms with it has been the hardest part. But we are strong together as a couple, together as a family, and together with anyone who wants to be involved in Tim's life. Talk to us. If you know us say hi, ask questions, vent, if you don't know Tim talk, get to know him.. ask questions.. We are perfectly fine with anwsering anything you want to know. Be a friend. If you know someone who is going through Kidney Failure or Chronic Kidney disease we would love for you to reach out and give us advice on recipes, food, medicine, doctors, etc, organizations.. anything. If you are looking to get tested for organ donation or even just looking to talk please don't hesitate. If you need advice on someone you think may be going through the same thing or any disease we can always talk with you as well. Live life to the fullest and don't look back.. Be better today than yesterday and better tomorrow than today.
- Love Jackie and Tim
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