Jerry’s medical updates

This page contains updates relating to Jerry’s medical and health.The most recent update will always be at the top. This is a non-comment page to simplify things for myself, but you can leave comments over on my blog or send by email {my email is in the horizontal menu along the top of the page}. At the very bottom of this page are various websites that you can visit that explain some of Jerry’s medical conditions. Please be sure to read the warning in the paragraph preceding the listing of websites.

MOST RECENT UPDATES BEGIN HERE

August 12, 2010: Oiy! Being Jerry’s caregiver just got 200% harder… for both of us. I had to take one of his prescription bottles in to the doctor’s office as it needs to have a new refill script every month due to its compound nature, thus we have to hand-carry the script to the pharmacy each month (along with 3-4 others). But, I found out that no one there will do the scripts for his types of heavy-duty pain meds. Not even the doctor who replaces the former one. The nursing administrator talked with the one doctor in charge, they discussed Jerry’s medical details, and were nice enough gave a 1-month script (and will do next week’s also when I need to get it done for him) to get him by until I can figure out what to do. Once again, I will have to locate a doctor willing to handle the specific pain therapy required for Jerry. They will do what they can to help me figure this out. In my mind, all I see is pain-filled days ahead for him… but in my heart, I know God will provide what Jerry needs to live. At least I pray for that.

August 06, 2010: Called to get the results for Jerry’s recent INR/Protime (lab work) and confirm his appointment on the 9th, and found out that the doctor he’s been seeing is… suddenly gone?! Fortunately, the doctor who is there now is one who has seen him during a couple of his hospital stays, so we at least know her and hopefully she’ll continue with what needs to be done for him. So had to reschedule his appointment for the 24th to see her.

July 29, 2010: This past month, Jerry’s doctor has been decreasing the dosage on his warfarin (blood thinner) because his INR/Protime (lab work) has come back twice as “a bit” too high. His pain has become even worse for him in the past couple months, so the doctor has increased dosages on his pain meds, also. I took Jerry in for an emergency appointment with his doctor this afternoon. Thank goodness for his doctor… she made them squeeze him in after a couple of her other patients. Diagnosis was not as bad as it could have been, thank the Lord! The superficial blood clots were acting up… meaning the varicose veins near the surface were severely inflamed and extremely painful for him. In his left groin and upper leg area, as usual. This happens every time they lower the dosage on his coumadin (blood thinner). (I say they need to stop worrying about that “a bit” and leave alone what works.) Doctor increased the coumadin dosages for the next week, and increased dosage on one of his pain meds. We’ll get his INR/Protime redone next Wednesday. And there is still his regular appointment August 9th, of course. Doctor said to put warm moist compress on the area and legs elevated, so he’s had his meds and is relaxing in bed now, probably for the rest of the day.

July, 2009-June 2010: Jerry has been having increasing pain in the area of his first hip surgery (left). Orthopedic doctor has tried the injections, but those were no help. X-rays show nothing. Next step is to get an MRI. But we have to come up with the copay (hundreds of dollars) up front. We don’t have that kind of money. Ideas of what it might be are: scar tissue build-up from the surgery, a nerve that runs along that area acting up, or something going on with the muscles or bone.

July 01, 2009: Not much new right now, except that Jerry is really feeling tired and achy from having three surgeries the past year. His body just needs time to continue healing. It takes near a year or two to get over one surgery alone, so it’s going to be a while before he feels anything like *normal* again. We went to the Patriotic Program at our church this past Sunday. That’s the day we were shooting for to see how he handled sitting for a long enough time for church. The program took a couple hours altogether, so I think he can make it for the one hour worship service. He was pretty much hurting by the time we got home, but glad that he could go. It was a very nice program, with a time to recognise those of us who have family members in the military… I said a few words for our oldest son [Jerry's, from previous marriage] who is stationed over in Iraq. Thanks for your continued thoughts and prayers for Jerry as he continues to recup and heal! God bless!

June 16, 2009: Jerry was so happy to get his first real shower in sixteen days. He had the same comment: “Ahhhhhh!” LOL! Yep, he was getting a little rank. Sponge baths just don’t cut it. But he’s doing really good with all his exercises and using his walker to get around. Granted, he’s extremely exhausted most of the time, but we should be topping that hill in the next couple weeks and he’ll be feeling better soon. Jerry says thanks to all of you for the cards you’ve sent, and for all your thoughts and prayers! Bless you!

June 15, 2009: Staples removed today. One comment from Jerry: “Ahhhhhh!” LOL! Fifteen days with those things in your hind end is just really irritating.

June 8, 2009: And now it’s kicking his butt! LOL! Normally they get several more days before the real exhaustion and aches from surgery and everything else starts, but since this is his third surgery in a year, welllllllllll… At least he’s in a good humor! He’ll probably be spending the next several days to two weeks mostly in bed. It usually takes joint replacement patients a couple weeks or so to regain enough strength to feel like doing much else. I keep after him to get those exercises done at least twice a day. He needs lots of help moving about no matter what he does, and just walking the few steps back and forth from the bathroom is exhausting right now for him, but he’s still doing what I consider great compared to before!

June 7, 2009: Jerry’s running a slight fever today and not feeling well, but that’s be expected. Other than that, he’s doing okay.

June 5, 2009: Jerry is home! Was dismissed about 2:00pm. Got him unloaded from the truck, and he did great getting up the couple steps into the house. I unloaded his stuff from the truck. Then, we both took a 2-hour nap. We were really worn out from our day. Jerry will basically spend the next few days mostly sleeping like always after a hospital stay. But I’ll make sure he does the the required exercises and will be caring for him constantly for a while. Please continue to keep him in your prayers for a complete and comfortable recovery. He is doing so GREAT!! He says “hi” to all of you and thanks you so much for remembering him in your thoughts and prayers!

June 4, 2009: Jerry continues to do such a great job with his exercises and physical therapy! He says the only pain seems to be from the surgical stuff. Awesome! We have no doubt he will meet all the medical and personal goals required by tomorrow afternoon and be dismissed!

June 3, 2009: Jerry is doing so great in all the things the group does in Joint Camp. They were teasing him and saying he was the “show-off.” But really, we are all supportive of ewach other during the activities during the week. I’m just amazed at how well Jerry did on his first post-op day! Praise the Lord!

June 2, 2009: Got up at 5:30am. Definitely not morning people in this house. Jerry’s check-in time was 7:00am. His surgery began at 10:50am. The surgeon came out at 11:50am, so it barely took an hour this time! Doctor said everything looked really good. Since his right leg was naturally shorter than the left, his left hip replacement added even more length last May (2008), and we think it was causing him back and neck problems. Doctor hopes that with this right hip replacement he added enough to even both legs out some and relieve that strain. Jerry was in a regular room about 2:00pm. He was wide awake and doing very well!

May 6, 2009: Found out that the doctor who has been Jerry’s oh-so-great physician for the past year-and-a-half can now only see folks who have coughs and colds and the like. Arg! Just when we think everything is going great, something has to change – usually the doctor! So, the pre-op appointment he was supposed to have today to clear him for surgery has been rescheduled with a different doctor on May 14.

April 20, 2009: Appointment with OD. Jerry’s surgery has been scheduled for June 2. Pre-op appointment to clear him for surgery on May 6 with primary physician.

April 05, 2009: Jerry wants me to call the orthopedic doctor and schedule an appointment to discuss surgery for his right hip. The pain is affecting him so much now he can barely move sometimes. *sigh* Doesn’t look like that year is going to go by first.

March 04, 2009: Jerry’s follow-up with the orthopedic doctor. He says the x-rays done in February show marked/advanced deterioration of Jerry’s right hip from the osteoarthritis. Yes, the other hip. We figured as much. (He is following in his father’s footsteps; his dad has had several hip replacements, plus other surgeries.) The goal is to try to hold out a year and let Jerry’s body continue to heal from the other two surgeries. But, there’s no telling how quickly this will progress. We may have to get him back in to see the orthopedic doctor in a couple months, maybe several months – there‘s just no way to know with this disease.

March, 2009: It has been fifteen years this month since Jerry was diagnosed with the pyoderma-gangrenosum. For fifteen years he has lived with the pain associated with it and the other conditions he now has that also cause excruciating pain – the DVT/cardio-vascular disease and the osteoarthritis. At this point in time, Jerry must take five prescribed pain medications on a day-to-day basis because of these combined problems – he has another six prescribed medications besides those, and then the vitamins on top of that. If not for the grace of the Lord, I believe he would have given up long ago. Read into that what you will, as it would be true. Jerry says it’s because of me he’s still here. Maybe so, in a way. I can be a real nag at times.

October, 2008-March, 2009: Jerry’s regular follow-ups with his primary and orthopedic doctors. During one of the February appointments, the orthopedic doctor has x-rays done of Jerry’s right groin because he has been having extreme pain.

December 26, 2008-January 03, 2009: The calendar switches over to a new year and suddenly everything changes. To be honest, 2008 was the most horrendous year we’ve lived through. We hurt so badly financially, and I was overwhelmed trying to keep us afloat, which is difficult for me at times with my own medical problems. But then, as 2008 turned into 2009, we suddenly received notification that Jerry was approved for Social Security Disability and Medicare! Praise the Lord! We had not expected this at all, thinking that the Supplemental Security Income was the only benefit for which he was eligible. We received what amounted to an “apology” from the administration: “…because we did not make this decision in a timely manner…” Blah, blah, blah. It’s not all that much more than his SSI, and still less than half what he earned while employed, but we’re thankful it finally came through. We were too thankful by this point to be anything but praising the Lord!

October 09, 2008: Jerry’s arthroscopic reconstructive surgery for the anterior cruciate ligament of his right knee. He is dismissed the next day with orders to follow exercise routine and begin physical therapy, which is twice a week for six weeks. We’re back to the walker for a while, but it’s not long before he is able to go back to using his cane.

October 06, 2008: Pre-op appointment with his orthopedic surgeon.

September 17, 2008: Follow-up with orthopedic doctor; just waiting for knee surgery.

September 08, 2008: Jerry’s appointment with the orthopedic doctor; doctor orders further x-rays of Jerry’s knee since the second fall has made it more painful. The x-rays show that he needs arthroscopic reconstructive surgery for the anterior cruciate ligament of his right knee. Surgery is scheduled for October 09, 2008.

September 06, 2008: Jerry again has a severe fall, further traumatizing his right knee. We make an appointment with his orthopedic doctor to be seen for this.

September 03, 2008: Jerry’s follow-up with his primary physician; doctor orders c-pap machine for his sleep apnea.

August, 2008: Jerry begins to wean from the walker to a cane!

July 23, 2008: Jerry’s orthopedic doctor orders physical therapy of Jerry‘s right knee, which he does twice each week through mid-August.

July 10, 2008: MRI inconclusive, although it shows some damage to his anterior cruciate ligament.

July 07, 2008: Jerry’s follow-up with regular doctor and orthopedic surgeon; MRI of Jerry‘s right knee done.

Sometime between July, 2008 to December, 2008: Jerry begins noticing that he has much more pain in his right groin. (We know by this time it’s a telltale sign of osteoarthritis.)

June 27, 2008: Jerry has a severe fall while we are visiting one of our children in the hospital. In trying to save the hip that had the surgery, he fell straight onto his right knee.

June 04, 2008: Jerry’s follow-up with the orthopedic doctor; he is doing well.

May 20, 2008: Jerry’s total hip replacement surgery. The surgeon said the procedure went well. During Jerry‘s hospital stay, everyone in the unit who has had hip or knee surgery attends daily what is called Joint Camp where the patients and their families learn all about the care and rehabilitation of hip/knee surgeries, and how to use their walkers. Staff are very detailed in how they instruct the patients and families in everything they need to know. Jerry is dismissed May 23, 2008.

April 16, 2008: Jerry’s appointment with the orthopedic surgeon. X-rays were taken of his left hip and left shoulder; both were confirmed by this doctor to have osteoarthritis, the left hip being the more serious. Doctor said that Jerry is a definite candidate for total hip replacement, however he is an extremely high risk for infection due to the pyoderma-gangrenosum complications, and because of this, there could be no guarantees as to the outcome of the surgery. We all agreed that it would be in Jerry’s best interest to pursue permanent disability because of the pyoderma-gangrenosum, since anything could happen to cause it to become infected at any time during the rest of his life, not to mention any number of other types of infection or complications that could occur since Jerry is highly susceptible to such because of his conditions. We decided that total hip replacement surgery is worth trying in spite of all the complications and risks. Surgery is scheduled for May 20, 2008.

March 05, 2008: Jerry’s follow-up appointment with his primary physician. She made the “official” referral to an orthopedic surgeon for total replacement of Jerry’s left hip. Doctor has also included his left shoulder as it is giving him intense pain (he had a bad injury to it at home having fallen into our cellar in March, 2007).

February 29, 2008: We received notice that Jerry has been approved for Medicaid through the state.

February 06, 2008: Jerry’s follow-up appointment with his primary physician. Jerry’s condition has worsened to the point that I must monitor Jerry constantly if he needs to use the bathroom or get up out of bed for any reason since he is unable to put any weight on his hip due to the pain and increased risk of falling. Several times he has fallen on it hard. His pain is constant and excruciating. Jerry’s depression and OSA (obstructive sleep apnea) have also worsened, and he is gaining weight due to the inability to move around or exercise. Jerry basically spends his days lying or sitting in bed as that‘s all he can handle. His doctor says that Jerry needs to have hip replacement as soon as possible, so he needs a referral to an orthopedic surgeon, but we cannot do this until he receives some sort of interim medical coverage, which we are waiting for from the state.

January 16, 2008: Jerry’s follow-up appointment with his primary physician. His condition continues to worsen, making it difficult to move around easily. He painstakingly walked into this appointment on crutches, but needed the use of a wheelchair they had on hand to get him back to our vehicle. Around this time, we apply through the SRS for state aid for Jerry’s medical expenses.

December 17, 2007-December 23, 2007: On the morning of December 17, Jerry’s pain was so excruciating that he was unable to lift his left leg to take a step. I took him to the emergency room where the ER doctor admitted Jerry to the hospital after ordering x-rays and other tests. What a blessing when that doctor prayed over Jerry in the emergency room – what a blessing to know there are Christian doctors! Upon Jerry’s dismissal eight days later, his updated diagnosed medical conditions are: acute osteoarthritis (degenerative joint disease) with extensive thrombophlebitis of the left hip, which is complicated by the extensive deep vein thrombosis (DVT)/cardio-vascular disease of his left leg and groin; pyoderma-gangrenosum; on-going depression; obstructive sleep apnea (OSA); urinary retention; and irritable bowel syndrome (with constipation). The doctor during his hospital stay states that the blood clots are basically throughout Jerry’s body from his sternum on down. Jerry is now unable to walk without the use of a mobility aid, and thus cannot return to work since he is unable perform the tasks required. His quality of life has diminished greatly due to the progressive worsening of these new medical conditions and complications that continue to develop; he is also unable to complete previously normal daily living tasks without assistance. We were advised to begin immediate application for Social Security Disability for Jerry.

July, 2007: I hear about Health Ministries, so I go there to visit with the director and learn more about their helping the community; their patients are people like us without health/medical insurance and low income. We begin going to appointments with the doctors/practitioners there. This is where the volunteer doctor Jerry begins seeing understands what is needed and prescribes the right medications for Jerry to finally give him some sort of relief! Praise the Lord!

January 01, 2007-December 01, 2007: Throughout this year, Jerry’s pain increases. Beginning in April, and continuing monthly, trips are made to the emergency room because the pain is so severe he is unable to function on a normal day-to-day basis or do the tasks required on his job. Twice he is admitted to the hospital for several days (once in July and again in December). Emergency room visits continue to be the norm in-between. Beginning in July, his left groin area is wracked with constant intense pain, sometimes to the point he is unable to find relief no matter what position he tries. Most of the time, the medicines he is prescribed for the pain do not help to alleviate the intensity of the pain. During the July 2007 hospital stay, we learn that more blood clots have developed in Jerry’s groin and left leg. Being on his legs has become almost too hard for him to endure, and he has basically been pushing it trying to keep working; his co-workers often have him get off his legs and rest for long periods of time. By November, he can barely move his legs when he gets home from a long day at work. There is a high probability that he will again be unable to continue to work very soon.

1994–2007: During these years, Jerry is subjected to numerous and varied tests, referrals, treatments and medicines, but his leg never fully heals. The original bacteria is gone, thanks to the debridement, but we learn through research and doctors that the after effects of pyoderma-gangrenosum remain with a person for the rest of their life, regardless of treatments. Due to the non-healing nature of this condition, dressings are regularly applied to the ulcerative areas of his leg and ankle; compression stockings are worn in an effort to promote better blood flow. Deep-vein thrombosis (DVT) becomes extensive throughout his left leg, groin, and into the right leg. Jerry lives with constant intense chronic pain in his left leg; various drugs are tried, but doctors are never willing to prescribe the necessary dosages it would take to alleviate it even a little bit so that he can function better. There are numerous and continual doctor appointments, emergency room visits and in-patient hospital stays from 1994 through 2007. By the time 2007 arrives, Jerry is living with a combination of non-healing pyoderma-gangrenosum, deep-vein thrombosis (DVT)/cardio-vascular disease, on-going depression, sleep apnea and irritable bowel syndrome. There are many times that all of this makes it impossible for Jerry to continue working, making for either loss of a job, or at the very least, a constant erratic attendance on the job.

July 1993–March 03, 1994: Sometime between July and December 1993, pyoderma-gangrenosum, an anaerobic bacteria, entered Jerry’s body; the bacteria causes the derma and underlying tissue to become necrotic; it is a devastating, someimes fatal condition, that wreaks havoc on a person’s body. It may have entered through one of his pores or a minute cut in the skin. Either way, we first noticed a small area on his lower left leg that looked like a scratch, so he applied a regular band-aid. Over the course of two weeks or so, it slowly worsened instead of healing, becoming larger and discolored. It was mis-diagnosed by a doctor as a spider bite and treated with whirlpool sessions. One night after Jerry returned home from work, he collapsed from intense pain in that leg, so I took him to the emergency room. By that time, the wound had a foul odor, a “fuzzy” look to it, and had increased in size. Since no one on the hospital staff could be certain of what we were dealing with, he was admitted to the hospital. Two days later (March 06, 1994), that area of his leg was excised down to the myelin sheath of the bone in a surgical debridement; the size of the excised area was a little larger than the bottom of a soda can; the tissue was sent to Boston (MA) for analysis. Within approximately 6 months of the debridement, deep-vein thrombosis (DVT) developed in his left leg and the tissues of the area of debridement began breaking down.

Below are just a few websites that we and/or the doctors have used in researching information related to Jerry’s medical conditions of pyoderma-gangrenosum, osteoarthritis, deep-vein thrombosis (DVT), thrombophlebitis and cardio-vascular disease. Several may have the same title, but different details are provided. Depending on which topic, a search of the internet using Google will sometimes return literally millions of results. We have chosen just a few that give the best information concerning Jerry’s particular conditions. WARNING: The website with the !! contains GRAPHIC images of the PYODERMA-GANGRENOSUM medical condition in its ACTIVE stages. DO NOT load that page if you have a sensitive nature or weak stomach. This is a devastating, often times fatal condition, and wreaks havoc on the body tissues that it attacks.

If you come across an outdated/non-working link, please let me know so that I can remove it. Thank you.

Chronic Venous Insufficiency and Postphlebitic Syndrome (Merck)
Chronic Venous Insufficiency (VascularWeb)
Chronic Venous Insufficiency (WebMD)
Chronic Venous Insufficiency (WebMD)
Pyoderma Gangrenosum (eMedicine)
!!Pyoderma Gangrenosum (DermNet NZ)!!
Osteoarthritis (Arthritis Foundation)
The Basics of Osteoarthritis (WebMD)
Osteoarthritis, several pages (eMedicineHealth)
The Coalition to Prevent Deep-Vein Thrombosis (DVT.net)
Deep-Vein Thrombosis (Mayo Clinic)
Deep Venous Thrombosis and Thrombophlebitis (eMedicine)
Obstructive Sleep Apnea (Sleep Disorder Channel)
American Sleep Apnea Association (SleepApnea.org)
Obstructive Sleep Apnea (SleepQuest.com)