Hello, My name is Aaron I am 45 years old single father of one beautiful 8 year old. I have been diagnosed with a very severe case of Lymphedema.
The condition is caused by a blockage in the lymphatic system, part of the immune and circulatory systems. Lymphedema is most commonly caused by lymph node removal or damage due to cancer treatment.
The main symptom is swelling in an arm or leg that may be accompanied by pain or discomfort.
Normally it affects the legs or arms or even both. Mine is affecting Arms, Legs and Belly. This is a fairly new uncurable disease which is very hard to diagnose. by the time the Dr’s were able to diagnose this properly it was already too late to try and maintain it in certain area’s such as my belly. It has caused roughly 110lbs of weight that gets worse week after week and will continue until I can get the surgery to have it all removed from my stomach area. I have found Dr’s who will perform the surgery but my Insurance is denying the surgery even after all the appeals from my Dr’s. At this time I am able to keep up and maintain the Arms and Legs but not without pain. the belly I am not able to maintain because of its size and has to be removed. This has left me Wheelchair bound, I cannot walk more than 20 feet without my legs giving out. I am on 24×7 Oxygen. I have had two heart attacks due to the stress it has put on my heart.
The Dr’s will perform the surgery but will have to come out of pocket. I cannot afford this I am a single father of an 8 year old living pay check to pay check. It sickens me not being able to do anything with my daughter, Not even swimming, riding a bike, I cannot even get on the floor and play. I have to have help getting up and it is not an easy task. If I fall when I am alone I am stuck until someone arrives. This has turned my life upside down, This happened little over 3 years ago now and I just cannot take it anymore. I have spent 2-3 weeks a year in hospital due to this, I have exhausted all funds paying off hospital debt, having to modify my house for handicap usage, having to modify my vehicle to drive, having to purchase electric wheel chair, co-pays, The list goes on and I am now asking for help as much as I don’t want too but I have no choice at this time. The company I work for has graciously let me work from home but cannot guarantee how much longer they are able too. The time is now of the essence.
By helping this will give me a chance back at life and be able to do things with my Daughter, lead a healthy and productive life. As soon as I can raise enough funds I can get the surgery. The recovery time is 1 month and during this month I will not be able to work and will not be collecting a paycheck This has turned life threatening since I have had two heart attacks and I am scared to death that this will affect me even more and more before I can raise money for surgery so the situation has turned urgent.
The cost of the surgery is just under 25k, This does not include any after care that will be needed. Just the cost of the surgery.
Showing the size of the area to remove, Approx 110 -115lbs of rock solid mass. The knodules constantly bleed and leak. Constantly changing clothes. I cannot find any clothing that will cover it up. Since I cannot cover it up I rarely leave the house as it is for one embaracing and two I cannot find clothes to cover it and third I am looked at by many as a lepper of sorts.
This pic shows how far it hangs, It hangs down to my knee’s
Last month I lost my balance and fell in the street. I hit my face right into the pavement. I cracked 2 ribs and this. It is very easy to lose balance as every step you try to make you lose your sense of stance almost like a vertigo feeling.
lymphedema is not as common in Male’s as it is Female’s
If you have ever had a Blood Clot (which is a big cause of this uncurable disease) you are more than likely to start seeing the appearance of this as you get older.
AGE & WHEN SYMPTOMS & SIGNS APPEAR
0-2 Very rare
3-5 Very rare
Males Rare (most cases more severe)
Requires a medical diagnosis
The main symptom is swelling in an arm or leg that may be accompanied
by pain or discomfort.
People may experience:
Pain areas: in the arms or legs or skin (it is very painful)
Skin: dimpled skin like an orange peel or rashes
Also common: swelling in extremities, swollen lymph nodes, or water retention
Treatment can help, but this condition can’t be cured
Requires a medical diagnosis
Lab tests or imaging rarely required
Chronic: lifelong, uncurable (Can be managed if caught on time or after surgery)
I had seen many Dr’s before it was diagnosed, My Cardiologist is the one who found it and diagnosed it. If you feel you may have this disease as well. Please consult consult your PCP and Cardiologist.
Dr Recomendations who now have experience with this and can diagnose it.
PCP – Dr. Scott Marqward
Thunderbird Family Medicine
8608 N. 59th ave , Glendale Az 85302
Cardiologist – Dr. Kates 623-876-8816
Dr. Kates is not treating me for the Lymphedema, He is just the Dr who discovered what it was. He ran checks over a course of time since the swelling wasn’t going down. Once he figured out what he thought it was he
had me sent to Dr. Cerato (who is now Retired) where he ran his tests and diagnosed it. I have since spent a total of 11 weeks in the hospital over the last 3 years due to this and seen by a panel of Dr’s and continue to see Dr’s.
Thank you for taking the time to read my story and God Bless!
Any questions or want to know more please reach out to me.