Inpatient Rehab

Well I was discharged from Presbyterian/St. Lukes Hospital in Denver and admitted as an inpatient for physical rehabilitation on Friday. So I am no at The Center at Centennial in Colorado Springs. It is a very nice facility and everyone are so nice. Even though it is a holiday weekend I have still received physical and occupational therapy. The meal choices are very limited but the food tastes good. So I am happy with the facilities and am happy my wife doesn't have to drive so far to visit with me.

The blood cultures taken before I left Denver have come back positive so I am no on anti-biotics via IV once a day. Still no word on what it is but it must be some sort of infection. With blood cultures it takes time for them to grow, and with the holiday weekend I don't expect to hear anything more until Tuesday. But otherwise I feel fairly good and today's PT went well for me.

Thanks for your comments on my previous post. I appreciate just knowing someone is actually reading these blog updates, especially when there is often a long delay from me.

Take care everyone,

David

Yes, in the hospital again

Again I have lots to report but poor resources to write it. By resources I mean my eyes. I have my laptop here with WiFi but it is so difficult to read anything. But anyway, after four weeks out of my last stay in hospital I am once again back. I had just gotten over some sort of bug and had a scheduled appointment with my oncologist in Denver last Thursday. My muscles are wasting because of the high doses of steroids I have been taking. So while I have been here I have had all the different doctors and specialists see me, trying to fine tune my medications for my lungs, liver, kidneys, diabetes, high blood pressure and other c-gvhd issues not to mention.

I escaped a liver biopsy this morning when my lab report came back and the doctor halted the procedure. So the good news is that my liver function improved since yesterday and they want to continue monitoring. The same goes with high blood pressure and high blood sugars. We have made a lot of adjustments for the high blood pressure and it is starting to look pretty good.

Now, one of the main reasons I am here is because of the severe atrophy in my legs/arms. As I have said before the cause of this atrophy is the steroids. So one medication change has been to reduce the prednisone. I was on 60mg daily and am now on 40mg. Soon they will get me to as low as 20mg daily. The plan at the moment is to discharge me this Friday and admit me as an inpatient at a rehab facility in Colorado Springs. That is what I really need to help me get my strength back. I have no idea how long I will be there but it will also be so much better for my wife when visiting to drive down town Colorado Springs then Denver every day.

As for my eyes, the autologous serum tears didn't pan out after ten weeks. Prescription eye glasses won't work because of the c-gvhd on the outer surface of the eyes what they call steroid induced cataracts. I am scheduled for a cataract removal in June on the left eye because it is the worst. Even if it doesn't completely fix my vision, we are hoping I will see a great deal of improvement.

So that is it for now. As always, there is a comments link for you should you have any for me.

Take care,

David

MediKidz

Thank you to one of my blog followers, Lucia, for bringing this website to my attention. This site provides children with medical information in terms they can understand. There are the MediKidz, comic book figures that children can relate to, and a virtual medical center world and virtual world inside the human body. Very cool!

Check it out at http://www.medikidz.com/home.

At home recovering

Greetings,

After four weeks in the hospital I am now home and overall doing well. I am slowly gaining strength in my legs, which is one of my primary concerns at the moment so that I can get out more and do more. I am going in to the oncologist in Denver weekly for a few weeks of Rituxan infusions and blood checks. My platelets were really low while in the hospital and I also had to receive red cells so we are keeping an eye on that. Once the infusions are finished I should be able to have the PICC line taken out of my arm. Like the Hickman catheter, it has been wonderful because I was getting very bruised from IV lines in my arms.

Nothing else has really changed at home. My wife is kept busy as my caregiver and everything under the roof and outside the house taker carer of person. I try to do the odd little job around the house but wish I could do much more to help her. The boys are doing great and are a help too.

A special thanks to Don for his support and fantastic experience based information too. We share many symptoms and he has been able provide me with great recommendations and Internet links to top grade information. Thanks my friend.

- David

In the hospital again

Hello fellow CML’ers and Caregivers.

I’m going to try to give everyone a quick update without boring you with the details. Although it will sound like a lot I assure you I am going to keep it short.

I was admitted to the hospital, same hospital as before, the Presbyterian/St. Luke Hospital in Denver, on Feb 25th, and it has been a roller coaster ride for my wife and I since. This was for that persistent cough, breathlessness and increased fatigue I couldn’t get rid of for at least four weeks. We went in to my oncologist several days in advance of a a regular appointment and they admitted me from there. Once admitted they found there was also another issue developing which has been diagnosed as HUS-TTP and is a known complication from taking two immune suppressive drugs together (Tac & Rap for the bone marrow people). I had consistently high blood pressure which they found difficult to control with meds. They believed it was a viral infection causing the cough but blood cultures take time to grow so they aggressively treated my lungs for infection in general. I have been on high doses of steroids and loads of antibiotics. Meanwhile, I also picked up a serious staph infection called MRSA (commonly found in hospitals) also in the lungs. A week after getting here my lower left lobe in the lung also collapsed. They thought it could have been a pulmonary embolism so all hands on deck to treat that. So I wasn’t looking too good the first few weeks here and they were close to intubation on at least one occasion. The whole team really worked very hard and did a great job getting me back and my breathing is much better again. In fact we believe I am at least back to baseline with my oxygen requirements at rest being very low.

As a result of all the medications I have been subjected to for treatment of the Bronchiolitis Obliterans Syndrome and infections, I now have also been fighting with the following issues:

• High blood pressure (mine is normally on the low side). So now I’ll need to monitor at home and take the meds as needed.
• High blood sugar counts, which means steroid induced diabetes. So insulin shots four times a day. My wife and I have been given training for doing this at home.
• Kidney damage. Monitored every day.
• Liver damage. Same as kidneys but not as bad.
• Loss of muscle and bone mass. This is actually a huge deal. I cannot walk without a walker and assistance and can’t do stairs at all on my own. But I am slowly getting stronger each day as physical therapy helps me with walking around the hallways and some resistance work.
• Nerve damage to my legs, feet and hands that they believe is drug induced.

I’ve had two CT scans of the lungs, an MRI of the brain, a bronchoscopy, a pulmonary function test, blood cultures and numerous blood tests, chest x-rays, and an ultra-sound of the liver and surrounding organs.
Every day I am seen by the attending physician from oncology and his nurse practitioner, the pulmonary doctor, a kidney doctor, a doctor from infectious disease, respiratory specialists, physical therapy, occupational therapy, and a neurologist. Well I am four weeks in the hospital on Thursday and the hope is to be released this week. They just want to make sure I am strong enough to get around safely at home and are hoping to stabilize my high blood pressure, as well as wanting my renal and liver functions to be good. Oh, this just in: I just finished with the PT guy and was able to walk around the hallways without my walker. Yeah! So now my release will be based on my blood pressure and getting me off the IV medications. They are also still watching my kidneys and liver but I’ll be continuing with blood work while at home.

Finally, I want to thank my wife who has been riding this wave with me the entire time. Every day, she drives from Colorado Springs to Denver to spend time with me and to keep in the loop with my medications and care and helps keep my spirits up. I love you honey!

Please comment if you have any questions.

Kind regards,

David

Long overdue update

Hello my dear followers. First I sincerely apologize for letting so much time go by without an update. No excuses, but there is a bit to tell you. I have no notes or calendars in front of me so this will not necessarily be in any kind of chronological order. Still, I hope it makes some sort of sense.

First I'd like to say my wife's neck surgery went well and although she still feels the pain she is slowing healing, a process that takes the full year. But she is a real trooper, especially these past several months since her surgery.

In early January I had a routine oncology appointment with my new doctor in Denver, except that he wanted to try an IVIG infusion, which I had never tried at that point. (Please look it up if interested as I myself still don't fully understand what it does or how it helps). So my wife drove me into Denver early for this four hour infusion and than a visit with the doctor. The only thing new was that my bone density DEXA scan came back and I now have osteoporosis in the hips and my legs and lower spine is no better with osteopenia. And on that note my legs and knees have been quite sore lately, sometimes waking me and keeping me awake. The doc believes it is most likely due to some of the meds I'm taking, like Fosamx +D, which is for the bones. Ok, so we are on the way home after the appointment and I begin feeling quite ill. Hot sweats and cold chills that night, a severe headache, upset stomach, and diarrhea throughout the night. So we made an appointment to go back to Denver but a snow storm was coming at us from that direction. We went on base to Acute Care instead but the doctor wanted me sent to ER because of stem cell transplant history and chronic-GVHD issues. He was good enough to get me an ambulance to take me to Prespretarian/St. Luke Hospital in Denver, which is where my oncologist and other staff perform bone marrow transplants. So they have their own wing for BMT patients. Exactly what we needed.

Well this is getting long so the bottom line is that they admitted me and kept me for three days for testing and observation. Everything came back negative except my (hydro)cortisone levels were low (more meds for that). My oncologist determined that he must have done it to me with the IVIG infusion. He said it is not often but people have been known to have adverse reactions like I did. He said their are different batch lots that we could try or a slower infusion rate, etc. I see him again early March and we'll discuss it further. The side affect was not fun and it took me several weeks, if not a month to fully recover from it so I want to be a bit cautious about trying again. I need to learn more about the benefits I guess.

I had a follow-up appointment with my oncologist's colleague the week after I was discharged from the hospital and he believes I once again have c-GVHD of the GI tract so I am back on Entocort. I just can't seem to cut back on my meds.

As for my eyes, I have been using the autologous serum tears for five weeks now but I got the instructions wrong initially and was only using them twice a day instead of four times. So to this point I am not seeing any improvement. But I know this sort of treatment can take time, which I have plenty of. I also had another lens patch put back into my left eye for pain relief but I think it has fallen out again because that eye is always stinging. I've been corresponding with Don about they c-GVHD of the eyes issue and he has been so helpful with his experience and knowledge. I really appreciate it Don and I will be asking about those Ciba lenses next time I am in. I know my eyes aren't bad enough to qualify for the Boston lenses so I won't even bother.

Ok, this is getting really long now so to wrap up, a couple of days ago I began coughing from the chest with some yellow mucus as well as a slight sore throat. Went into the local doctor who said other than the cough I am looking really good. So I am on Guaifenesin/Codeine syrup, which is to help loosen up the mucus (codeine to help with the chest pain from coughing). I do feel today I am coughing less so fingers crossed. I really don't want to end up in ER again.

Well I apologize for such a long post. It is my fault for procrastinating. Also, I don't want to leave this with such negative feelings. Overall, I am doing well and last week was finding myself able to get out of the house more often, including several walks around the neighborhood to walk the dog.

Happy Valentines,

David

5...4...3...2...1...REMISSION!

We just got a call from the oncologist's office yesterday and the fantastic news is the PCR for bcr-abl was negative. Some of you may have remembered I just celebrated my second bone marrow transplant (bmt) birthday, on November 30. It was great. We had a jumpy castle, a petting zoo and clowns. Ok, actually we only had one clown; me. With these lungs I was almost unable to blow out those two candles (I think my youngest son helped me).

And just a few other things to catch up on. First, I took my wife to Denver this morning for her second neck surgery, which should begin at 12 noon. Of course my thoughts and prayers are with her at the moment.

I saw a cornea eye specialist and for starters he has put plugs in my eyes. This is supposed to keep tears on the eye longer because they can no longer drain where the plugs are. The next thing he has recommended for me is Autologous Serum Tears, which has apparently has some great success. People suffering from severe dry eye syndrome, including that caused by C-GVHD, are the prime candidates for this treatment. First they are testing my blood for HIV and HEP A,B,C. Once those results come back negative I go back to the lab and they draw 15 tubes of blood. It gets shipped to a pharmacy in California where they turn it into red cells that are full of good stuff. They send me three months supply and I use them as drops in my eyes twice a day. I still want to contact the Fred Hutch to get their blessing before I move forward but hopefully this is something that will work for me. Finally, the doctor said he can get rid of the cataracts anytime but recommends we wait until they because a real issue.

Lea, I cannot wait for you to get your appointment in Boston to hear what your impression is of the Boston lenses. Last I heard you had to postpone the trip. I mentioned them to my doctor but he said they are really a last resort because of cost and need to travel to Boston for eval, fitting, etc. And I don't think even my right eye is severe enough.

Overall I am feeling pretty good except that I seem to be breathless and tired much more lately. I just had another pulmonary function test yesterday and there is no change, hanging in there at FEV1 41%. I have to make these lungs work for at least three more years because they won't even think about a lung transplant until five years post bmt.

I have finally finished my UMUC Network Security course and am signed up for Cryptology beginning late January. That's about it. We've had lots of snow these past two days and the boys got a "no school" day today. Nice day to sit by the fire for some total laziness.

Thank you all for two years of wonderful support, emails, phone calls, and blog comments. And continued success to my fellow CMLers and BMTers out there. I hope 2010 is a great year for you all.

~David

The eyes have it!

Cataracts that is. I had a follow-up appointment with my ophthalmologist onbase after four months because my eyes haven't gotten any better. In fact I think they are worse. I can't even get very good focus using my magnifying glass. We the cataracts explain that. My left eye is worse then the other and besides the affected vision, they tend to hurt a lot, as if there is sand in my eyes. I put drops in to sooth them and then I see worse because of the fluids on my eyes. Just one viscous circle. So the doctor has referred me to a corneal specialist who as luck may have it, is also at the Air Force Academy. What I do know is that these cataracts are steroid induced and they can be treated or surgically removed when the time comes.

Last week I also saw my primary care doctor who has adjusted some of my meds to see if we can't get my energy levels higher. I also saw a pain management specialist, who after reviewing all the evidence, has decided to begin with an MRI of the thoracic and lumbar areas and to try me on oxy cotin, which is morphine in extended dose of 12-hours. If it doesn't work out he may increase the dose or try something else. My entire body aches at times from medication side affects, bone density loss, chronic graft versus host disease (c-gvhd) to the eyes, mouth and lungs and my chronic back and abdominal pain.

And finally, I saw my new oncologist in Denver and my wife and I really like him. He obviously has the knowledge in bone marrow transplants we were looking for. In fact, he spent some time at the Fred Hutch and now performs BMTs in Denver. He wants to fight my lung disease a bit more aggressively and so has prescribed me with Sirolimus, another immunosuppresant drug. He also reduced the Tacrolimus because Sirolimus tends to cause the Tac levels to rise. And in fact they did, so much that for now I have come off the Tacrolimus but have increase the prednisone to 60mg. And right when I was shaving a few pounds off my belly. I guess it will soon be back to the 2am eggs on toast and other nightly delights.

Well I can see that my updates are sounding more like gripe sessions. Overall I cannot complain. I have a wonderful family at my side, including a lovely wife who is always there for me, not to mention taking care of the boys and herself. She goes in for a second round of neck surgery in two weeks.

Love to everyone,
~David

Kareem Abdul-Jabar joins us with CML

As said as it is, NBA's basketball star Abdul-Jabar was diagnosed last December with CML and is apperantly a paid spokesman for Swiss Pharmasutical Novartis. Now why didn't they offer me that gig a couple of years ago?

Read more about it at FoxNews.com.

Good luck to Kareem and the rest of our CML patients and their families.

~David


P.S. Thanks to my brother Daryl for the article.

Temporary Disability Retired List update

A couple of days ago I received a letter from the TDRL Board President letting me know they have decided I am to remain on the TDRL because I am still not fit for active duty and my condition is still not stable. I look at it as a free return flight to San Diego where I can visit my parents, twin sister, brother, aunt and some great friends.

I continue to have my set-backs with days I find it difficult just climbing a flight of stairs. Some of my complaints are most likely related to side affects of the antibiotics I am still taking. So I hope to be feeling better once I finish those meds in two days. My white cell counts are still high but a little lower then the last report so the doctor is hoping the antibiotics are winning to fight an infection. But I have a pain in my left side just under my rib cage and I know from personal experience that this is where my spleen would be if it is getting bigger, like it did when I was originally diagnosed with CML. My doctor believes it is most likely my intestines I am feeling and my wife reminded me that the CT-scan I just had should have picked up an enlarged spleen. But I think because I have experienced so many cases of bad news with regards to my health that I now tend to be rather pessimistic.

Anyway, my darling wife has found a new oncologist for me at the Rocky Mountain Cancer Centers in Denver and I see him later this month. I expect he will order another PCR test to look for any signs of BCR-ABL, to ensure there is no sign of relapse. A negative result will certainly put me at ease.

And even more bad news on the Cox front; my poor overworked wife has been having more problems with her neck. Remember, late last year she underwent two major surgeries; one on her back and the other on her neck, both requiring titanium plates screwed in place on her spine. Well she just saw her surgeon about her neck and the verdict is that the bones did not fuse. So now she must get a CT-scan and most likely have to undergo the surgery again. But this time they will have to go in from the back of her neck and screw in another plate. I really feel for her because she is doing so much around here that she cannot afford to be in so much pain. Lately she has been caring for our two boys and for me almost full time. I love you honey and we are all thinking good thoughts for you.

Well that is it for now. I will probably post again after my oncology appointment or after I receive my PCR results.

~David