Am I nuts ?

Ten years ago the doctor said I have high blood pressure. Take these pills or die! Today I take 5 pills but the pressure is 120 / 80. Eight years ago I get a call I have been refused life insurance because of a high protean count. A biopsy and 2 pints of blood later I have FSGS. But I am pre dialysis; I have not hit the magic number yet! What ever that is? I am on the transplant list, but they tell me it may be years before a kidney becomes available. I am exhausted all the time, half blind and going deaf. But the doctors tell me I am fine. I wake up every morning throwing up to start my day. I don't want work to know how I feel I need my job. Being an office manager helps. I tell my family I am doing fine. I tell the doctor all is ok, because I do not want to go on dialysis and I don't him to think I am making myself sick. Life is always different with FSGS every pill has a side effect worse then the one. The steroid faze was great, moon face and round, but I had great skin. The mood swings were worse then PMS so I was told. So don't tell me I don't understand a woman's problem. I have held my sense of humor or is it depression or mental disease. I feel like shit all the time but put on a forced smile. Is it me? I feel alone, no one understands what it is I am going through or does no one care. I don't know if this is how I should be feeling at this stage of my disease. There is no one to talk to. At this point I don't know if the depression is making me sick. Or is my sickness is making me depressed. Or is there another diagnosis still to be uncovered. I do have a sense of humor in public. But alone I am Jello Am I alone in these feelings?

Harold, First off, what you are feeling, this depressed all time type of feeling, is a common occurance in patients that have chronic conditions, at least in the beginning. It will take some work, but you can get past this. In all likelyhood, the problems you have had with your blood pressure are the cause of your diminished kidney function. Keeping your blood pressure under strict control is your best bet to extend your kidneys' life. Your doctor says your pre-dialysis, and I am guessing that he told you there is a magic number to start dialysis. For the most part, numbers do play a role in determining when to start, but how the patient feels and functions from day to day also is a consideration. You said you have been telling the doctor that you are doing well at the same time you throwing up every day, which is a definite indicator that your kidneys are not doing the job. You should tell the doctor this. He may change his thought processes a bit. The exhaustion is also probably the reduced kidney function, as you are probably anemic, which is a lower than normal red blood cell count. This lowers the amount of oxygen that your blood can carry to your cells, which is why you feel fatigued. There are medications, such as Epogen and Procrit(actually the same medicine under different brand names) that will help your boby to produce more red blood cells, and thus help you to feel less fatigued. This won't cure the fatigue, but it will reduce it. As to you continuing to work, this is one of the best things you can do, and for as long as you can. It keeps your mind occupied, so you have less time to worry about what is happening with your health. Try to keep it up. You also said that you put up a front of a good sense of humor. This is a tool you can use to help you get past the depression. You will find as your life goes on that your true attitude towards what is going on will affect how you will do physically. So if you have to get some professional help, get it. If you are not comfortable with that, ask your doctor if there is a patient who has adapted well and would be willing to sort of mentor you, or at least give you somebody to talk to. Sometimes, just getting your frustrations off your chest makes all the difference. Now for a word about the transplant option. In most places, you are going to wait for a kidney to become available, perhaps for years. Unless of course you have a living donor. The time on the list varies from person to person and from location to location. Your local transplant center should have info on this. Next point. Transplant is not a cure. For the most part, you will outlive a transplant, unless you are advanced in age when you get it. There have been transplants that have last 30 or more years, but if you live long enough, they will all fail evntually. For the most part, most people feel pretty good with a transplant. Most people also must take many medications. You take medicine to protect the kidney, Immunosuppressants. These have side effects, which vary from patient to patient and even from transplant to transplant in the same patient. One side effect that is inevitable is that the Immuno drugs do damage to the kidney, although usually at such a slow rate that it is almost undetectable. Many of these side effects require medication, which in turn can lead to more side effects. You need to look at is a each change that occurs is a small hurdle to get over, or at least to adapt to. A transplant requires very diligent attention to taking your medication in the prescribed amounts and at the required times. It also requires that the patient learn as much about their body and keep track and respond to even small changes in the way one feels. On the whole, I would opt for transplant ( I've had 2) if available. Also, once you get on the list, go about your life as if it may not come, as it very well may not. Work to get yourself into the best physical shape you can, as this will help you to cope better with little problems that are going to occur. Worying about when the call is going to come will only lead to you going crazy. Next thing. You don't want to go on dialysis. This is a normal response. Who does. You will, however, likely have to at some point. My suggestion here is to start now to learn as much as you can about the different options. The more you know before you have to do it, the better time you will have adjusting to it. Well, have to go now, time for treatment. Send more messages. I will try to answer your questions, or just for somebody to talk to. Dave 19 years with ESRD.