Hoping 2011 brings happy, healthy New Year to all

Hope you all had a Merry Christmas! Sorry for the lateness of my post as I have been very busy trying to enjoy the holidays. I'm hoping the new year continues to bring good news, as I recently received the news that my kidney and pancreas tumors and cysts have remained stable and there is no spread to my lungs. YAY!! Thank you for all of your prayers as I was very anxious this last month awaiting the news. Unfortunately, I still continue to have the original issues and plan to see a rheumatologist in the new year as well as a bone specialist- my left shoulder pain returned and my deep bone pain continues in my upper back and arms (wish I knew why). Perhaps I retriggered the pain a bit on Christmas when I fell due to not seeing some steps because of the snow.

Santa was good to all of us. We have been having a nice visit with my sister and her family. They actually extended their trip to New Years Day. Santa (Mr. Steve) bought me a photo collage for the wall with 3 very important words; Live, Love, Laugh....something I plan to do more of in 2011.

As for my New Year's resolutions, I'm going to try to eat healthier and get in better shape. Who knows, maybe while the kids are at school I will be dancing to the Kinects Dance Game.

This Christmas holiday has gone very quick for us...went to Wilmot with some friends, kids went sledding, shopping, lots of eating and playing games. Happy New Year to all and I will keep you posted as things arise.

Prayers needed...

During the past month, I was still seeking the cause for my various aches, pains, etc... I have had multiple calls and visits to doctors, as well as a full series of MRI's of my brain and full spine. I continue to have an absess in my cervical spine (at my hairline), yet due to the fact that it has not grown in size and appears somewhat smaller (possibly due to the aspiration they did November 1st) they aren't convinced that it is infected. Rather, they decided to continue to watch it, as there is some erosion of the bone right up to that site. They don't want to go in there and cause more trouble if it isn't necessary.

I had a full panel of lab work. The only things that could point to any problems were that my white count is high and my vitamin D level is low. Although the doctor doesn't believe the cause of my issues is the vitamin D deficiency, I have decided to take a supplement.

After discussing everything with my doctor, he decided the next step would be to see if the renal cell has moved out of the kidney to other areas, such as my lungs. I will be having MRI's of my abdomen and chest this Thursday and will get results when I see the doctor early next week. If these tests don't show anything, the next step will be a body scan.

Please say your prayers that things remain unchanged in my kidney and that is not the source of my problem.

I've been staying inside out of the cold and enjoying my Christmas decorations. It's been a nice change of scenery! Like everyone else, I am busy trying to prepare for the holiday. I was excited to learn that my sister, Robin, and her family will be driving in from Pennsylvania to spend the holiday with us! She will be here from the 21st - 28th. We are looking forward to spending time together without there being a medical reason for the visit...

On September 2nd, Steve and I celebrated our 20th Wedding Anniversary. As our belated celebration, we went into the city this weekend to see the musical, Wicked! We brought the kids with us & everyone loved it. Because of my vision loss, I was able to sit in the 5th row and could see really well.

Shoulder diagnosis

(A quick update from via Suzanne) Kim saw an Orthopedist from IL Bone & Joint yesterday. He did x-rays and an MRI. He diagnosed Kim with tendonitis, bursitis and a torn rotator cuff! No wonder it has been hurting her! He thinks it probably happened when she fell a while back. He gave her a cortisone shot and prescribed physical therapy. He is hoping that the rotator cuff tear with not require any surgery, given her plethora of other issues & slow healing problem. He will follow her progress and see if the tear gets any bigger. Kim was ELATED to have a diagnosis and plan all in one day!

Unfortunately, here we go again...

The latest news is that I found out from the dermatologist that the type of porphyria I have is called pseudo-porphyria. Basically, this means that it is not hereditary. This type is often caused by a poor immune system (long-term antibiotic use). What he feels more likely is that poor kidney function contributed to it. It seems to have appeared following my renal sepsis. He says that once your enzymes hit a certain point in the blood that it will cause your skin to blister, essentially attacking your skin as if you are allergic to it. UNFORTUNATELY, he does not think that type is causing my other symptoms such as fatigue, weight loss, low-grade fever, pain (especially in my arm/shoulder). He told me to look for another source.

I got these results a week ago and since then, I have phoned all of my doctors. The infectious disease doctor ordered a scan of my cervical spine to see if something there was causing the shoulder pain. I had the scan on 10/28 and received a frightening call upon returning home, stating I had a cervical absess that could be life-threatening and I needed to return to the hospital (Northwestern) immediately. I chose not to go until yesterday (11/1) when they were able to schedule me for interventional radiology to drain the absess. Apparently, the absess is two centimeters in diameter, yet they were only able to drain a small amount of bloody fluid. Now I am home waiting for culture results. There is also concern that if there still is fluid in there, that it will need to be removed through surgery. UNFORTUNATELY, they feel that where the absess is it is probably not causing my arm/shoulder pain & I am going to see an Orthopedic doctor today to see if there is something else wrong. I am still awaiting return calls from most of my physicians & am quite frustrated that I've been feeling crappy for about two months now and still have no answers. Hopefully, we will get to the bottom of this soon. Maybe today. My doctor prescribed Percocet about ten days ago, which I take like candy. However, on Halloween, I discovered that martinis work just as well, if not better! LOL

Hope you all had a great Halloween and got lots of candy : )

The new "something" is Porphyria

After nine months of job hunting, Steve has finally landed himself a regional sales management position in a start-up urology company. I must say a big thank you to all of you who have kept him in your prayers and passed on resumes for him. It certainly is nice to be on a payroll again. The best news of all is that he doesn't need to travel much. After 18 months in his last position of traveling continuously, it's nice not to have to find rides for the kids and myself.

My Kindle has just been updated with a free application which has increased the font size, and now I am able to read it again and not just listen. Yeah! It's also been a nice bonus that the kids are back in school. Tyler is a sophomore and Alyssa is in 2nd grade and they are both doing well.

Medically, since my last post, I've had two root canals, two crowns, and still require more dental treatment but can't afford it at the present time. My dentist told me that the reason I'm having such bad decay is because of the brain stem radiation back in October 2006. I was never warned of this being a side effect.

After returning home from the hospital with the kidney/blood infection, I received antibiotics through August 9 through a pic line. About a week after the pic line was removed, I started feeling as if I was getting another infection. I had low-grade temperatures and felt flu-like and very achy. I had blood work done. My white count was elevated but they could not find a source for the infection so they decided to just watch it. This continued and yet the achiness has increased in intensity, I'm very fatigued, and I sleep 10-12 hours per night. Since coming home I've lost another 10 lbs and have not been able to gain it back. The doctors were still perplexed as the blood work had not pointed to a source of infection. So I went to see an infectious disease doctor in mid-September, and he seemed to feel that I had Lupus or a condition called Porphyria. My symptoms at this point were frequent and painful blisters on my hands and feet, and my skin discoloration had worsened on my arm.

Later that day I saw a dermatologist who saw the blisters. Dr. Brieva did two skin biopsies to determine what type of condition it could be. He felt that my skin discoloration and thinness was not just related to steroid use in the past and that there was some other factor. About 10 days later, the dermatologist called with the skin biopsy results and said I have Porphyria and ordered lab work and urine tests to determine which of the eight types I have. As I have no history that I know of in the family, he feels it probably started as a result of long-term antibiotic use over this past 10 months.

Porphyria is a rare disease of the blood that causes fatigue, weight loss, low-grade temperature, neuropathy (nerve pain), blistering, skin pigmentation change, nausea, etc. -- everything I have. My pain seems to have settled in my upper back and upper arm. I'm still waiting for results from the Mayo Clinic lab as to which type of Porphyria I have.

Other than all this nonsense, I truly enjoyed the summer and it was nice to finally have a summer this year (last year was cold, crappy, and I felt horrible). Hard to believe I've aged so much but I even had my 30th high school reunion on September 18th.

I recently have seen the eye doctor, Dr. Cohen. Again, he said not much changed but I still see crappy. We'll be following up with infectious disease and whoever follows Porphyria. I never had a chance to start chemo treatments for my eye or kidney with all that's happened in the last year. The good news is my internist said he phoned in a strong narcotic for me. Looking forward to hopefully finding some better relief today for my back. The pain is draining my body of energy.

It's almost full circle now. My brother passed away October 22nd of 2009 and I remember blogging from the lobby of Northwestern Memorial Hospital. With everything happening this past year, I realized I never fully grieved. He comes to mind often and I really miss him.

On a brighter note, Alyssa is also a year older, turning eight this Saturday, and we will be hosting a spa party with 20 of her closest friends. She's so excited. It will be quite fun. Ooh la la!

Seems like it's always something...

From Suzanne: It's been a while since we've posted anything. That is a good thing actually. Kim had been feeling really good and getting out to enjoy the summer. Last week, however, that all changed... I just spoke to Kim on the phone and wanted to update you on the latest. I will do my best to summarize the events of the past week.

At the beginning of last week, Kim started feeling ill and had a fever around 103-degrees. She was achy and decided that it must be the flu. As the week went on, her fever continued and she began feeling disoriented. Finally, on Thursday, a friend convinced her that she needed to see a doctor a.s.a.p. She went to Condell Hospital in Libertyville and was admitted. Apparently, she had a bladder infection that became a kidney infection and ultimately spread to her blood, i.e. she had sepsis. She was also very dehydrated, so they started administering fluids and antibiotics.

She was transferred to Northwestern hospital on Sunday, where she continued treatment. She was in ICU at first. Her heart rate was in the low 20's and they wanted to keep a close eye on her as sepsis is extremely dangerous. They did an ultrasound of her kidneys to see if the infection had caused any further damage & it seems like they are stable. She will have an MRI in the coming weeks to be sure.

Kim had a pic line inserted and will be coming home today. She will continue with IV antibiotics for 13 more days. Her heart rate is now in the 50's, which is low but acceptable. Not surprisingly, she has very little energy. She has also gained 24 lbs. in water weight since entering the hospital, so that is uncomfortable as well. It'll probably be 4-6 weeks until she's feeling back to normal. They want her to do physical therapy to strengthen the muscles in her neck. That should help with some of her pain.

Regarding the eye situation, that seems to be stable for now, although Kim says she sees "like crap." LOL She also recently had Part 1 of a root canal done & goes back for Part 2 next Monday. Poor girl never gets a break!

Comfortably numb... (actually un-comfortably numb)

I saw the eye doctor again on June 7th. Dr. Cohen was pleased that the fluid was decreasing and the bubble seems to be shifting out of my central range of vision. It seems like my vision is getting a little better now, so I am glad I did not get the steroid injection. His big concern still is the optic nerve lesion because it is large and leaking. He's afraid if I do PDT again that it would really compromise my vision. Therefore, he wants me to hold off until there is some further change in the size or amount of leakage from the optic tumor. I follow up with him on July 2nd.

I've been very preoccupied this summer with my Aunt Winnie, the travel agent who I went to Florida with. Unfortunately, she has been suffering from medical issues herself. She required surgery three weeks ago for a pinched nerve & after being in rehab for a week, had to undergo another surgery due to complications and signs of infection in her lumbar incision. It turns out that she has MRSA, a really serious type of staph infection which is very resistant to treatment. She's very frightened now, as she has to be on antibiotics the rest of her life. So, please send prayers her direction too.

Over the past couple of weeks, I have noticed tingling and numbness in different parts of my body - e.g. my arm & fingers have been tingly and my pinky is completely numb. The sensation in my right arm is really off. It feels like it's asleep and I keep shaking it to wake it up. Then I noticed that it started progressing into my right foot, causing numbness in several toes, my heel and my shin is tingly also. After the symptoms worsened, I contacted my neurosurgeon, Dr. Bendok, who suggested I go right to the emergency room. He was concerned that I had a stroke or a recollection of fluid in my spine. Unfortunately, Steve had the stomach flu so my friend, Darlene, drove me down to Northwestern. They kept me there all night and I finally had an MRI of the brain and cervical spine done at 5:00 a.m. this morning. Things looked good and there was no sign of a stroke. However, they are still really concerned with the numbness and its cause. They gave me the option to stay and do another MRI of my thoracic spine. They think that maybe there are tumors there that could be the culprit. I chose to come home & am scheduled to go back on Friday for MRI's of the brain, cervical and thoracic spine (3 hours!). Then I see Dr. Bendok on the 28th. Another possible reason for the numbness could be hyperstimulation of the nerve root. Your nerve endings regenerate about six months after surgery, so it could just be that I'm having a hypersensitive reaction. So, they put me on Lyrica, which will help calm down the nerve endings if this is indeed the problem. I'm very anxious because my symptoms increase daily. I am also nervous because once there is nerve damage, you sometimes never get that feeling back.

A BIG thank you to Darlene for taking me to the hospital and staying with me all night. It was like a sleepover. We talked and laughed all night. Unfortunately, the bed we were sharing broke in the middle of the night!

Hopefully, this will all be resolved soon and I can get on with enjoying my summer. Hope everybody else is doing well...

No steroid shot for now...

I returned home from Philly on Saturday, after spending a few days with my sister, Robin, who lives in the Poconos. On Monday, I went to see Dr. Cohen (my eye dr. here) in order to get the steroid shot in my eye. However, on Sunday, I felt that my vision was improving a little and less foggy. I told the nurse this & requested that they perform another test prior to doing the injection. When he compared the new test with the one from the week before, he thought the fluid levels had gone down slightly. Therefore, we decided to wait on the injection. I will go back to see him next Tuesday. If things stay the same or get better, I will not need the injection & he will just keep watching the eye closely.

On Monday, I also (finally) spoke with my kidney doctor. He felt that there were only slight changes and not to worry about the small growth in my left liver. I will follow up with him in the next month to discuss a plan (possibly chemo or surgery to address my kidney cancer).

Then I talked to my infectious disease doctor from Northwestern. Although my bloodwork came back okay last Friday, he wants to repeat it and see me in his office since I have felt achy and fatigued for the past few weeks. I will see him next Monday.

Whew! That's all the medical news for today. Enjoy the last few days of freedom before the kids get out of school : )

Update from Philly...

From Suzanne:

Today, Kim was seen at the Wills Eye Center in Philadelphia. She flew out there yesterday. By some bizarre coincidence, a friend was traveling to Philly on the SAME day and on the SAME flight as Kim, and therefore, became her chaperone for the journey there. When she arrived in Philly, her sister, Robin, picked her up at the airport, stayed with her at the hotel & escorted her to her appointments.

I just talked to Steve and got a brief summary of what the doctors from Wills told Kim. I apologize ahead of time if any of this is incomplete or downright wrong! I will ammend it after I talk to Kim, but wanted to give everyone an idea of what was happening.

The doctors found that fluid is leaking from her optic nerve tumor and is causing something like a blister on her retina. This is what is causing her vision to be foggy. They said that this has nothing to do with the PDT (photodynamic therapy) treatment she had done a few weeks ago. Apparently, that was done on a different tumor? and the procedure is so mild that they said it would not have caused this. They are going to try giving her a steroid shot in the eye that they hope will reduce some swelling and hopefully stop the leaking. They are not sure that it will work & there are some risks associated with doing it (e.g. infection, glaucoma, etc.), but don't know what else to do. They said she could do it there or come back home & do it. Because there is some discomfort associated with the procedure, she decided she will wait until she returns home to do it. If this does not work, they mentioned returning there for more PDT.

Kim is staying in Philly again tonight and then I believe she will go to Robin's and spend the day tomorrow. She will most likely return home on Thursday?

To see or not to see... that is the question

Since my last post, I've seen the eye doctor several times. The blood on the retina has been reabsorbed and the swelling went down. Unfortunately, my vision is still significantly worse than before the procedure. The reason for this is that I now have a new problem. I had a scan of my eye and it showed that there is fluid behind the retina, which is causing distorted vision. The leakage of fluid is coming from the optic nerve tumor, which has sprung a leak. Dr. Cohen, my local eye doctor, has no answers for me and recommeded me to be see at the Wills Eye Hospital in Philadephia. There I will be seeing the top doctors in the country to see if they have any ideas of how to help me. These are the doctors to whom he presented my case a couple of weeks ago. Due to the urgency, I will be flying out next Monday and have an appointment on Tuesday (a 6-8 hour evaluation). Hopefully they will have a treatment plan for me, which may include a radiation implant or systemic chemo. My sister lives in PA & will meet me there to keep me company and help me get around.

Now for some good news... Yesterday, I had a repeat MRI of my spine to see if the infection was improving or was gone. It appears to be gone! Hooray! And, there didn't appear to be any change in the size of the tumors in the spine or brainstem.

This Friday, I will see my internist for a physical, bloodwork & EKG as a prerequisite to being seen at the Wills Eye Clinic.

On a completely separate note... I received a surprise book-on-tape in a bag from a mystery person. It came at the perfect time because I was going crazy not being able to see anything! I finished it in three days and would highly recommend it - House Rules by Jodi Picoult. So, thank to my secret angel!

I also want to take the opportunity to thank Brian and Darlene Schick for generously providing me transportation to Philly on a United buddy pass. Thanks also to Suzanne and Ray Baumruk for putting me up in a hotel while I am there. It is greatly appreciated, as Steve has still not found a job after six months out of work. If you have any tips, he is still looking for a medical sales or management position.

To all of the mothers out there, I hope you have a wonderful Mother's Day!

Will let you know what happens in Philly...

I can('t) see clearly now...

Last Friday, I had the PDT procedure done by Dr. Cohen. I had a weekend planned to clean the basement and go see some movies because I couldn't be outside in the sunlight. Instead, I spent the weekend blind as a bat! My vision has gradually decreased over the past few days. On Monday, I went back to see Dr. Cohen. He said it appeared that I have a leakage of blood behind the eye that is blocking the light as well as the ability to see things (in addition to my already poor vision). He said that it should improve over the next week. However, I called him today to tell him that it is still getting worse. He was surprised to hear that my vision had worsened rather than improved. If things continue to worsen through Friday, he said he would do surgery to irrigate the blood out of the eye and laser the vessel closed. He would probably do this next Monday or Tuesday. He will be out of town for the next few days at some vision conferences and will be presenting my case at Wills Eye Center on the east coast. He expects there will be many oncologists there & wanted to present it so that hopefully someone may know of a systemic treatment they could do to stop the optic nerve tumor from leaking and growing.

On another note... after three years, I decided I should make a trip to the dentist. I was hoping that at least one part of my body was in good shape, by not so. I need two crowns, a root canal and gum surgery. Yippee! Lucky me...

Tomorrow, I go get my pick line out (Yippee for real!) and have an MRI of my pancreas and kidneys. I'll write more later this week once I discuss the findings with the doctor.

The latest and greatest

I had the MRI of my spine after returning from Florida. Unfortunately, the infection has moved from the thoracic area to my cervical (neck) area and has affected two bones. They said I needed to continue IV antibiotics for three more weeks (which I just finished) and then start on oral antibiotics for six more weeks. I will have another MRI of my spine in three weeks and see the doctor, at which time I will hopefully be done with this!

I went to the eye doctor and was pleased to see my vision improve from 20/400 to 20/200. 20/70 is the legal level required for driving during the day, so I'm still not able to do that. Upon seeing the dr., he was very disturbed by the changes going on in my eye. There was growth on a large problem area that I've had treated 50 or so times already. It has grown larger and is starting to leak. This could be troublesome if the fluid continues to leak and goes toward the macula (that would cause decreased vision). He wants to try a new treatment, which I will be doing this Friday (April 16th). It is called PDT (photodynamic therapy). It involves injecting a dye into my veins and blasting the tumor 10 minutes later with a laser. The dye will be drawn to the tumor, because it is a vascular tumor and the laser should burn it. Unfortunately, this dye stays in your system up to 72 hours. During this time, I will need to avoid any natural light, or risk 3rd degree burns or further eye damage. Perhaps a double-feature is in order?

Another unfortunate eye finding is that the optic nerve tumor has also grown 15% and is leaking as well. He has no options for me at this time & wants me to look into systemic chemo treatments. I feel like I'm right back where I started! The dr. will be attending several conferences around the country next month and will hopefully find a protocol I can fit into. I called my kidney doctor to see if he knew of any studies and he feels that Sutent is working fine for his patients and doesn't know of anything else. Given the growth in my eye tumor, he wants me to get an MRI of my kidneys and pancreas. I'm getting it done on the 21st and will hopefully be given some good news.

On a brighter note, I am feeling better and have regained a lot of my energy! The sunny days have been helping keep my spirits up. I look forward to enjoying the summer and hopefully reconnecting with many of you socially... Will keep you posted. Wish me luck!

Walking on Sunshine

I just returned from a not-so-balmy, but very relaxing trip to Fort Myers, Florida. It was exactly what I needed!

The day before I left, I had a big scare & was afraid I wasn't going to be able to take the trip. The doctor received my lab work & told me my kidney levels were dangerously high & my liver was having trouble filtering the antibiotic. They told me to immediately stop the IV infusion and I would probably have to go to the hospital to receive the first dose of a new drug. Luckily, they switched me to a drug that I now take once a day over 20 minutes. It is so easy & I feel so much more free! I thought the way I had been feeling was mostly due to the infection. However, once I switched drugs, I no longer have the fatigue, shortness of breath, fevers, difficulty focusing and overall depressed feeling. Within 24 hours of stopping the IV's, I felt back to my normal self. I was even able to walk the beach and went from lying on my couch to riding a camel at the zoo - LOL! I'll post photos at some point...

The nurse comes tomorrow & hopefully this drug is bringing my levels back to normal. I get an MRI on Monday & the 8-week course should be done a week from Monday. Hopefully, this infection is resolving and I can be done with all of this!

Hope you all have (or had) a great Spring Break! I'll post again after my MRI...

And some good news... Not only has my luck changed with feeling better, but the week before I left I got a call from the Illinois State Department of Rehab & was told that they would pay for my handheld magnifier, my computer software which allows me to use my computer again & an acrobat that has a camera that can enlarge any image (e.g. tv, documents, books, even my own face so I can see to put on makeup!). This is HUGE because the cost of these items would be over $5000 & they are not covered by insurance! I'M SO HAPPY!

I'd like to thank...

After watching the Academy Awards the other night, I had a dream. In it, I started my speech by thanking the academy & then I said, "No wait, I want to thank my friends and family for all the support over this past year." LOL Can you believe it has now been a full year since this story began? It was last February when I tried to get into the chemo study at NIH for the optic nerve tumor.

I have done a lot of reflecting as I have been laying around this last month. Not a day goes by that I don't think about all that everyone has done. I hope you all know how much I truly appreciate every little thing - be it a phone call, a visit, a card, etc...

I've been down for the count the last month. I continue to have an infection and remain on antibiotics via a pump that I schlepp around with me 24 hours a day. I just completed week four & have at least 3-4 more weeks to go. I have an MRI scan in three weeks to see if the infection is clearing up.

Alyssa and I are going to Florida next week to stay with my aunt in Fort Meyers, FL, along with my cousin and her two boys. I hope the sunshine will work wonders on my energy level!

Never a dull moment...

Last Thursday, Kim had an MRI done on her head and spine. A bone in her neck "lit up," indicating an infection. On Friday, she returned to the hospital to have a biopsy done. She was allowed to go home for the weekend while they awaited results and determined what to do next. This week, they confirmed that it is a staph infection in her bone & she needs to be treated with IV antibiotics. She went back to the hospital and had a port inserted, where she will receive the medication. Fortunately, she is able to use a pump rather than hanging IV bags. It's a little machine that she carries around with her in a pouch/fannypack & it only needs to be changed every 24 hours. No more waking up every 4 hours to change the IV bags - woohoo! (Steve is quite happy about this too.) She disconnects it for showering.

The doctors are hoping that the antibiotic will knock this thing out. They will do bloodwork every week to check for levels that will indicate if it is indeed working. Say a prayer!

A VERY BELATED "Thank You" to our Secret Santa!

Just before Christmas, several packages began arriving at our doorstep for the children. The kids were very excited, as there was no indication who they were from. In the back of my mind, I thought it might be my brother or sister, because I had done this for them last year. Once they denied it, I was really stumped! I asked some relatives and friends, but so far it remains a mystery. Therefore, I'm hoping the mystery person reads this & knows how much we appreciated the thoughtful, surprise gifts!!! Tyler and Alyssa were very excited and love their new gifts :)

The fun never ends!

I followed up with the cataract surgeon on Tuesday and he was very impressed that he saw no signs of infection, as he was worried to go in with my elevated white count. He did say that my vision was still 20/400 and it may become a little sharper in the next month. Unfortunately, it will never be good enough for me to drive again :( I will see my retinal doctor on Friday to see if there are any issues that HE can resolved to help improve my vision.

As for my neurological status, I have officially gone crazy - LOL. I have been experiencing an increase in headaches and muscle aches in my neck and head. Dr. Bendok said that a large part of it is due to the healing of the muscle that they cut through multiple times. He recommended different medication he thinks will relieve the pain.

Regarding my MRI scans of the spine that I had done a couple weeks ago, it describes two new tumors in the brain stem associated with a cyst. When I brought these to Dr. Bendok's attention, he suggested I run it by Dr. McCutcheon (the MD Anderson Dr. who did my surgery) & he also wants me to have another scan done next Thursday, which will include the brain, as well as the spine. Steve sent the report to Dr. McCutcheon and he was very interested to see both scans. We will send both sets of scans to him after my follow up scan next week.

Today I saw plastic surgery and infectious disease. They feel the open cervical wound is starting to heal and should be done in 4-6 weeks. They see no signs of infection, but they did do lab work to see if my white count went down.

Home once again!

Kim came home from the hospital today. She can see MUCH better at a distance than she could prior to the surgery! The odd thing is that now she cannot see as well close-up. The doctors say that it will take approximately a month for her vision to stabilize, so her near vision may improve over time. After a month of recouperation, she can be fitted for glasses. While her vision is definitely greatly improved over what it had been recently, she still has the damage from the macular hole which will never go away... Her vision is approximately 20/400.

Eye surgery went well!

Steve said that Kim's eye surgery this morning went well. Hopefully, when they remove the bandages tomorrow, her eyesight will be much improved!

Cataract surgery this Thursday!

Kim will undergo eye surgery this Thursday (tomorrow - January 21st) to remove her cataract. It will be done at Lake Forest Hospital, where she will stay overnight for observation. While this is a relatively simple & routine procedure, the doctor wants to take extra precautions given Kim's bleeding disorder.

Last week, her white blood cell count was high, so she started taking two different antibiotics. As of Monday, this number was still high, but the eye surgeon has agreed to proceed anyway. They are thinking that perhaps she just has a little virus.

Next week there will be MORE doctors' appointments (neurosurgeon, plastics, infectious disease) at Northwestern Memorial for Kim. She feels like she just can't get away from there! They are continuing to monitor the healing of her neck wound...

Please say a prayer that her eye surgery is successful & complication free! While she will still technically be "legally blind," she is looking forward to a noticeable improvement in her vision!!!

Eye surgery has been scheduled!

I had the drain in my leg removed last Monday. Then, I saw the neurosurgeon and he was still not happy with the amount of drainage coming out of my incision near my neck. I still continue with dressing changes twice a day and there is a wound care specialist that comes 2-3 times a week. I finally started physical therapy at home & hopefully that will relieve a lot of my neck pain and tightness of the muscles. I am no longer using the cane & feel pretty steady on my feet. The highlight this week is that I went to see a cataract surgeon in Lake Forest and got promising news! I am scheduled to have surgery next Thursday, January 21st. He said that I have a very severe cataract, so I should notice a significant improvement in my vision once he replaces the lens. If all goes well, I won't even need glasses for distance anymore. Over the next week, I will be having many more doctor appointments to follow up on my incision drainage issue. Hopefully, they will have some good news and be able to close this hole. After this very busy week, I should be up for phone calls again & would love to reconnect with everyone!

The saga continues...

Brief update from Suzanne - Kim returned home from the hospital on Wednesday night (December 30th). She is still not feeling well & rang in the New Year quietly. Her leg and neck incisions are still not healing properly. She still has the drain in her leg & while it is helping relieve the pressure, recent tests show that the size of the "pocket" where fluid (blood) is collecting is actually getting bigger. There is still fluid gathering near her neck as well. This is clear & they think it may be lymphatic fluid (which is not dangerous). Kim will see several doctors at Northwestern on Monday (January 4th) and hopefully they will come up with a plan. They may admit her AGAIN and give her more platelets to aid in her healing/clotting. We will post again with the outcome from those appointments...