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Spent the afternoon with Mark….

May 31, 2009 Leave a comment

I went to the hospital today to visit Mark. I stopped on my way to bring some lunch for us to eat today, and I got to the hospital just as visiting hours were starting. Mark seemed so happy to see me. I could see the happiness in his face! I could also tell that he is starting to feel better. He was sitting up in the chair, dressed in real clothes, and drinking some diet ginger ale.

When I visited him yesterday, he was lying in bed, just vegging and being a couch potato so it was nice to see him up. We set up the table and chairs, and we ate our lunch together. We laughed and joked, and I really enjoyed being with him.

HeartVascularVHDDiagramHe told me that the cardiologist had come to visit him. He was given the results of his cardiac testing. It is all NORMAL! No sign of heart disease or blockages. The only thing noted was that he has some thickening of the heart muscle which is VERY normal for people who have had hypertension. The cardiologist said that with the proper medication, the blood pressure will come down, and and thickening will disappear or at least lessen.

While I was there, Mark had his BP taken, and it seemed that it is getting a bit better. His blood sugar was high, but he says that he is not getting as much insulin there as he normally takes at home. They give him tiny dosages of 4 units when he would normally take 15 or so. They call it a “sliding scale”, but it is not working. Mark keeps telling them he has GREAT blood sugar control, so they are doing something wrong. But they do not seem to care all that much.

No dialysis or tests today, so we were able to relax. We watched TV and took a nap together. Also he ordered his dinner, which we shared. He is on an 1800 calorie diet and 2 grams (low sodium) diet. It is perfect for me since I really do not like salt all that much. He says he is adjusting to the taste of food without so much salt. He did say that you can taste the food instead of the salt. No DUH!!!!

We are hoping that the Vascular Surgeon will do the AV Fistula tomorrow. But he says it may not be until Tuesday morning. It should take about 3 hours total time. He also gets a dialysis treatment tomorrow. We are also hoping that he can get into the Dialysis Center so that he can finally go home!

Just wanted to give a quick update. Nothing much new but the cardiac tests were good news!!!!!!!

Categories: Uncategorized

Background Information….how this came to be!

May 31, 2009 Leave a comment

So here is the background information on how “Renal Failure Came to Be”. It didn’t just happen over night. We didn’t just wake up one day and realize that Mark’s kidney’s stopped working.

Mark’s had diabetes since the early 1990s. He has had high blood pressure even longer. The jury is out on how he wound up with diabetes and when he first got the hypertension, but that is really not important.

Also a factor in this battle is Mark’s weight. He claims that he has been overweight for most (almost all of his life). He had dieted and lost a lot of weight, but always gained it back. I am sure that the Yo-Yo dieting has not helped.

Routine blood work about five years ago showed some kidney damage. From what I understand (and can remember), he had about 50% kidney function. It has been pretty stable over the past few years. This past year, the blood pressure has been steadily rising. The kidney function has been steadily declining.

This year has been a plethora of health issues for Mark. In February he had the flu. No energy. No appetite. Slight fever. Cough. He was home from work for about a week. Then in March his stomach problems were acting up. He was suffering from indigestion, nausea, and vomiting. He went to the doctor after being sick for an entire weekend. His primary doctor diagnosed him with Gastroparesis.

Gastroparesis, also called delayed gastric emptying, is a medical condition consisting of a paresis (partial paralysis) of the stomach (“gastro-“), resulting in food remaining in the stomach for a longer period of time than normal. Normally, the stomach contracts to move food down into the small intestine for digestion. The vagus nerve controls these contractions. Gastroparesis may occur when the vagus nerve is damaged and the muscles of the stomach and intestines do not work normally. Food then moves slowly or stops moving through the digestive tract. It is a very common disorder in patients with Diabetes.

He received medication to help the food empty from him stomach. This seemed to help him a lot. However, while he was at the doctor’s office, they ran blood work.

His kidney function was poor, so he went to see a Nephrologist (a physician who has been trained in the diagnosis and management of kidney disease, by regulating blood pressure, regulating electrolytes, balancing fluids in the body, and administering dialysis) in Holmdel. This doctor found that the biggest concern was Mark’s high blood pressure, and he wanted to admit him to the hospital for treatment of the hypertension with medication. This doctor hoped that control of the hypertension would regulate the kidneys. He thought that Mark definitely had kidney damage, but he was more concerned with the hypertension.

Mark did not want to go to the hospital so he called his primary care physician, and asked to have the blood work run again (figuring that the kidney disease was elevated because at the time he was dehydrated and sick from the acute gastroparesis).

The primary care physician did run the blood work again, and while it was slight better, it was still well above normal limits. He recommended that Mark see his colleague Dr. Luca DeSimone (who Mark had seen previously). (NOTE: Dr. D wanted to do a kidney biopsy when Mark had first seen him, but Mark did not want that, and he never followed up again. Perhaps denial??)

In the interim, Mark talked to the Principal at school about his high blood pressure, diabetes, and kidney disease. He told him that his blood pressure has been high recently. The Principal sent him to the nurse for a check. His pressure was too high, and the Principal sent him home saying that he was a liability at work and to get it under control before he came back to work.

Anyway, Dr. D. was in the process of changing offices, and could not see him for three weeks. Finally on May 7th 2009, we went to the kidney doctor, Dr. Luca DeSimone. He is a nice man who was very patient with us. He reviewed Mark’s blood work and tests, and then talked honestly.

Regarding his blood pressure… it is way too high. He gave him two new medications to help to lower the blood pressure. We need to monitor his BP regularly.

In regards to the kidney disease, it has progressed rapidly in the past few years. His levels are all very high, and from the results, Dr. D determined that Mark’s kidneys are functioning at about 10% — maybe a little bit better. There are five stages of Kidney Disease. Stage #1 is the beginning, and Stage #5 is Kidney Failure. He is “a hair away” from Stage #5.

He told Mark that he WILL need dialysis soon. That would require him to get a fistula (An arteriovenous fistula is an abnormal connection or passageway between an artery and a vein. It may be congenital, surgically created for hemodialysis treatments,) This requires him to get it done by a vascular surgeon. And he will need dialysis 3 times a week (each session taking about 3.5 – 4 hours)

He had to go for more blood work and a bilateral kidney ultrasound. He also needed to register with the Kidney Transplant Team as soon as possible. They will meet with him to make sure that he is a good candidate for a transplant. This will include a full medical exam, stress test, colonoscopy, and transplant typing.

However… and here is the caveat… before they will even consider him for a transplant, he has to lose weight. He is too overweight right now. There are too many risks associated with his weight… and more chance of complications and rejection. The doctor said he HAS to lose weight if he wants a new kidney. And it will help his blood pressure and everything else in his life.

Mark seemed to be in denial, saying that he had time, and would make an appointment with the Vascular Surgeon after school lets out in June. We were told that the vein takes about 6 weeks for it to “mature” and will be ready for use. So he should be ready to go about mid-summer.

I had hoped he would call the surgeon ASAP, but I can’t push him. I can only support him. This is a major accomplishment. I told him that, if he wanted me to, I would go with him to his first few dialysis appointments until he is comfortable with it. He told me that he would like that.

Mark went for the Ultrasound and the blood work that Dr. D. suggested, and we waited for the results. Well, the Friday before Memorial Day weekend, May 22, 2009, Dr. D. called our house with the results of his latest blood work. It seems that the reduction of his high blood pressure has reduced his kidney function too.

The bottom line is that he needs to get dialysis, and he needs it right away. His doctor is going to admit him into the hospital after the long holiday weekend.  In many cases, a person has time to go to a vascular surgeon who will prep a vein in the arm to be ready for the dialysis. He does not have that kind of time. He will be admitted to the hospital next week (after the long weekend) and have dialysis done using a vein in his neck, and probably be in there for about 3 days. He will then have to get his arm vein prepped and healed (4-6 weeks) before he can have regular dialysis. He will need to get on a kidney transplant list (otherwise he will need dialysis for the rest of his life). But the nephrologist said he will not be a candidate unless he loses weight.

We did not have many of the details when Dr. D first called, but it was definitely a shock to the system.

Mark went into the hospital on May 27th.at 7:30AM. There were no beds available for him, so he had to go into the hospital through the Emergency Room. We were taken into a room, and then the “Hurry Up and Wait” began. It was an hour before we saw the ER Doctor. We had to explain the whole story to him, and he decided to take some blood work to see how Mark’s kidneys were functioning. We wait another 90 minutes for the lab tech to come and take blood. Mark also got a chest xray and EKG. He had an IV put into his arm. They had trouble finding a vein and Mark got stabbed quite a few times!

More waiting for the lab work. Finally close to noon, Dr. D shows up, and tells him that the blood work showed a Creatinine of over 11 (normal is under 1.2) and his BUN levels were 115 (normal is under 30). We were sent over to “Special Procedures” to have the catheter put into his neck. It was a simple procedure. It took less than 30 minutes, and Mark was given a local anesthetic. He said it did not hurt, just some pressure and a small prick when the shot was given.

General Picture of a patient on Hemodialysis

General Picture of a patient on Hemodialysis

The catheter comes out of a vein in his neck, runs under the skin, and a small “shunt” protrudes so that they can give him dialysis. We were then taken up to a room on the fourth floor. He was given his first dialysis treatment. They told him that they would only do a short treatment to start him off. They hooked him up, and monitored his blood pressure, heart rate, and other things. He said it did not hurt at all and he felt nothing. A nurse stayed in the room with the portable unit while Mark was having his treatment.

It has now been 5 days that Mark has been in the hospital. So much for 2-3 days, huh? I think it is just because things move so slowly in a hospital. While Mark has been there, he has had 2 more dialysis treatments, an Echocardiogram, Stress Test, and Heart MRI (the cardiac stuff was to see if there is damage to the heart from the hypertension, diabetes, and kidney disease). He also had vein mapping for his AV Fistula.

He is currently waiting to get a spot in a local dialysis center. He wants to go back to work, so that complicates things. It seems that the time slots that Mark needs/wants are all filled up. So Dr. D is trying to get him into a center so he can get out of the hospital.

Rumor has it that Mark will get the Fistula on Monday night or early Tuesday morning. They are hoping to get Mark into a dialysis slot at Perth Amboy. More hurry up and wait.

I went to see Mark yesterday. He was in pretty good spirits but was ready to go home. The dialysis seems to be helping him. He said he feels much better. Not so tired and exhausted as he was feeling. The swelling in his ankles seemed much better too. I was pleased that he actually has ankle bones!! LOL

I am going to see him again today and spend some quality time with him. He does not need a dialysis treatment so we can talk around the halls a little and have a meal together.

Categories: Uncategorized

Welcome to The Daily Dialysis!

May 30, 2009 Leave a comment

Bonni-and-MarkToday I decided to start a blog about dealing with my husband’s health issues — particularly his battle with renal failure. I am hoping that this will help me and my circle of friends understand what is going on, but also perhaps helps others who suffer from the same health issues as Mark does.

I am certainly no doctor (I only play one on tv) or medical professional. All the information that I attain is through reading, asking questions of health professionals, and living with someone who has a myriad of health problems.

I welcome you to live this journey with me….. to take the good with the bad. The happy with the sad. I do not know the outcome since life comes with no guarantees.

Categories: dialysis, kidney disease